Subcutaneous Ig Therapy = Early Returns are Good!
AnonymousFebruary 22, 2010 at 5:49 am
My first infusion was yesterday and now 18 hours later I feel comfortable reporting on side effects of which there are few. But I’ll start at the beginning in case any of you are thinking of going this route so you know the prep etc. My husband and I watched the video showing how to do it – that took about 20 minutes because we skipped the parts where they said how they make it and the FAQ section.
BY THE WAY – in big bold letters on the drug info sheet it says it may cause intestinal issues – I never found this admission on my IVIg drug sheets though it was a routine side-effect for me.
My nurse arrived around 10, we began immediately with the preparations. There are 15 steps and I won’t list them all because some of it is common sense like washing your hands and maintaining a sterile atmosphere. I did as much as I could until my hands decided to perma-cramp and become useless at which point my husband took over – that was Step 2, transferring the Vivaglobin from the vials to the syringe. 😮
Anyway – here is the quick and dirty – we do this three times a week right now… I am getting 36mL each session and 4 needles so only 9mL is going at each location. I’ve been told by the various parties involved that this is not a lot at once and if I am comfortable with the amount of fluid we can switch to twice a week, or even once a week – that just depends on how my skin does and whether I get reactions or not. The Vivaglobin came in eight zillion boxes as I got a month’s supply and each session I use a 20mL, 10mL, and two 3mL vials. Transferring the fluid from the vial to the syringe was only physically challenging because my hands have a tendency to cramp up when I ask too much of them. My nurse taught us a trick to make it easier though… you suck air into the 60mL syringe equal to the volume of all four vials (36mL) and then a little bit more. Then you insert the needle into the vial with the vial flat on the table, once the needle is in flip the vial and needle combination over and rest the plunger of the needle on the table. Then hold the vial so the needle is always under the liquid and slowly press the vial and syringe down on the plunger. As air bubbles go into the vial it creates a vacuum in the syringe that draws the Vivaglobin right down into it. The only tricky part is to keep the needle under the surface of the liquid which requires moving the vial steadily upwards until you gently draw it off once the fluid is gone. My husband had no trouble with this… but that’s basically where he took over. Once that is done you push most of the air out, leaving a tiny bit at the end.
OK once everything is in the giant syringe you attach a connector tube to the end of the syringe and to the end of the four-needle tubing combination. At this point we left all the tubings for the needles still tied up as it’s a lot of stuff to work with and more convenient to untie them when you go to stick them in. So the first thing you do is unclamp each tube and push out the air so that the Vivaglobin goes almost to the end. ( They recommend leaving a bit of air at the end so that you don’t track the fluid through your skin as you insert the needle which they say causes more reactions and my nurse said the same thing about leaving a bit of air in the syringe so it clears out the fluid before you take the needle out again. ) You do this for all four needle/tubing combinations and then you are ready to go. The syringe gets inserted into what my husband said looks like a marshmallow shooter, but is really a low-tech infusion device that works via a spring. You wind it up and it slowly cranks down a foot pedal that mashes the plunger into the syringe. Simple, easy – the flow rate is determined by the tubing so there is no programming.
The rest of the infusion was such a non-event it’s hardly worth reporting. I only felt one of the four needles going in. We used my belly button site locations (2 and 4 inches on each side respectively) so I could see what was going on and because there is plenty of padding there. :rolleyes: I felt a very slight sting when the pump first turned on then nothing for the rest of the hour. After the infusion was over you could see the fluid under the skin and there was a very slight pink ring surrounding it. About an hour later it was slightly pink all over but no itching, no burning and not really that red, just pink. Pain-wise there is little and only if I mash on one of the sites. I would rank somewhere between a mild sunburn and a mild bruise. Today 18 hours later there is nothing, just slight discomfort if I poke one of the sites.
As for the other side effects I’ve come to associate with IVIg, headache, flu-like symptoms, kidney pain, intestinal upset and so on they are so mild they are easy to ignore. My stomach was slightly queasy this morning, whereas on IVIg I am really nauseated and might throw up. I have a little fatigue/flu-like feeling this morning but look how much I’ve typed so far… it’s nothing like I’ve become accustomed to where I feel like I’m walking around in a bowl of jello. OK and here is the best part…
[CENTER]:D [SIZE=”3″][SIZE=”4″]NO HEADACHE OR KIDNEY PAIN![/SIZE][/SIZE]:D[/CENTER]
Can you believe it? In fact I had a headache leading into the treatment because of the sun – my right eye still does not dilate/constrict properly so it’s painful when it’s very bright outside. Within 7 hours of the treatment I no longer had a headache and today I still don’t. For me, this is a miracle worth celebrating in the grandest style I can come up with (which at the moment consists of a shot of vanilla syrup in my morning coffee). It has been 5 years since I haven’t woken up feeling like I was run over my a bus in the middle of the night. And I slept like a rock last night, better than I usually do and I slept for 10 hours which is basically unheard of for me.
So that’s all the great news I have to share. Cross your fingers it will be as effective for me as IVIg has been, or even more so since it doesn’t seem like it’s going to kill me with the side effects. I think it will be several weeks or a month before I can tell how effective it is but as I told my doctor I’m willing to trade a little dropping things and tripping if I never have meningitis again.
If you have questions please ask – my next infusion is tomorrow so I’ll give an update after that one. Take care ya’ll and Happy Monday!
February 22, 2010 at 7:09 am
Julie, so glad to read your report. Wow, no headache and kidney pain! I hope this procedure is the answer for you.
Please keep udating, as I also hope your post helps others.
February 22, 2010 at 1:45 pm
Julie,what great news. How excited you must be to not have those headaches!!! Keep us posted!
AnonymousFebruary 22, 2010 at 2:21 pm
WOW, Julie!! I just can’t believe how long you suffered with the IVIG. I feel like such a wimp next to you. I had 4 treatments and they stopped it all together because of the Meningitis. You are amazing. I am so glad you are getting a better treatment. Good luck!
AnonymousFebruary 22, 2010 at 10:52 pm
chicken that I am about all those needles! And your nurse’s tricks are great to know at any time! I appreciate this ‘part’ as I’ve got kid ‘sized’ hands…they never grew into the rest of me?
I am told by my own IV nurse that folks who succeed with this system tend to keep on a VERY even keel throughout each week and month – to month. That you don’t ‘peak or valley’ in your IG numbers in-between.
Great going lady!!!!! Keep it up and keep diligent about it… Crossing my fingers while they can still do it for you to boot! Hugs and more hugs!!!!!!
AnonymousFebruary 24, 2010 at 4:09 am
The day after my first treatment I was a ping-pong ball bouncing all over the house. I felt terrific until late in the day when I started losing energy rapidly and the creeping numbness came back. But the next morning I got up and had no trouble preparing for my treatment.
Day two went just fine as well. I did everything except actually stick the needles into my skin as we used the sites on the back of my arm and I can’t twist my neck around like an owl to see them. The preparation went much faster this time and my hands behaved themselves and didn’t shake too much.
As for reactions, none. A very slight pink ring and obviously swelling where the fluid pouch is but aside from that – meh – nothing. No headache, no kidney pain, no itching. I did get that super tired feeling I get from IVIg so I took a 3 hour nap and woke up feeling awesome. This morning I have a bit of a stuffy nose, but not flu-like hacking and coughing like I get with IVIg, I am a bit nauseated but not actually hanging out in the bathroom, and last night before bed I noticed I had a bit of a backache but not like IVIg where it feels like my spine is going to explode from the inside out. My intestines have not been terribly happy but then again I stupidly ate black beans and rice when I meant to behave myself so I could tell if the sub-Q was affecting them. 😮
CIDP-wise I had tons of energy after day 1, today I woke up feeling good and the first thing I noticed was I can feel almost all of my face again except for that patch on the right side that is almost always numb. My right leg which is also always numb is not as floppy as it was yesterday so it’s clear the sub-Q is at least working… I’m not sure how long it will take before I know whether it works as well, or better, but I’ll keep posting my progress this first week and then periodically until I’m sure one way or the other.
Take care ya’ll – happy Wednesday! 😀
P.S. By now you all are probably wondering why I stuck with IVIg when I had such dramatic side effects – that’s because it worked – I am walking around (with AFOs) because of IVIg so it was worth feeling like a bus hit me to get to the point where I am now… but now that I am better CIDP-wise we are working on my quality of life by trying to reduce the side effects.
AnonymousFebruary 24, 2010 at 12:17 pm
That’s great news Julie. Hubby has tried to convince his neuro. to let him go with subcutaneous IVIG. No luck yet as no one in British Columbia has had it for CIDP yet. She said she might ask one of her residents to set up a trial of the subcutaneous IVIG and enter hubby in the trial–but that was six months ago so I think she was just placating him. I am copying your posts to take in to neuro. for next appt.
February 24, 2010 at 8:55 pm
This is a great thread, your details are excellent and really have me thinking about this treatment.
Do you know if it is FDA accepted treatment for CIDP like Gamunex is ?
I would love to get away from the 5 days of IVIG every 5 weeks.
AnonymousFebruary 28, 2010 at 3:30 pm
Hey ya’ll – sorry it took me so long to update. Believe it or not I’ve actually been busy for a change. 😀 After a week of no meningitis headache we finally figured it was safe to go see Avatar – woo hoo! My eyes tolerated it just fine though apparently I am one of those people who do not see in 3D – likely because my right eye is so messed up.
Anyway, here is the update. The 3rd infusion last Thursday was done entirely by me in my belly again. There was absolutely no skin reaction at all, didn’t even get a slight red ring, nor was there any obvious medicine pouch. The day before my nurse had gotten a call from the specialty pharmacy nurse who told him that recent studies have shown that sub-Q patients do better if you do not alternate sites too often as the tissues become more absorbent and less reactive. This certainly seemed to be the case with my stomach – it just vanished. I did have some other side effects – notably my intestines and a little nausea – but still no headache or kidney pain. I can actually look outside at the sun shining blindly off the snow and I don’t run screaming in pain. And I saw Avatar Friday night. 😎
Today’s infusion was done by my husband as his second teaching session and it was done in my legs – top of my thighs. More skin reactions this time, kinda like we’ve expected all along so I’m not sure I’ll be using this site too often. It looks and feels like somebody punched me 4x in my legs – not the reaction I’ve gotten from my belly or my arms. Otherwise no other reactions yet other than a little nausea. We are on our own now, no more nurse until or unless I cannot do it myself, or my husband cannot do it.
Now that a week has passed I am getting this sneaking suspicion that it is not working as well. However, we did reduce my dosage so before I start crying I’m going to give it three weeks, or until I decide I’m going downhill too much. At that point we can up the dosage again without too much discomfort or additional fluid intake. I’m currently doing this 3x a week and each of the 4 sites only gets 9mL per session – the nurse says I can take up to 25mL per site if my skin tolerates it well. My belly seems to tolerate it fine so it is still a possibility to increase the dose to see if that works before I have to resort to going back to IVIg.
So – no determination yet. I am not dramatically worse, in fact I made it to a movie which I haven’t done in 4 or 5 years, however I had more foot drop on Saturday than I usually do and this morning I was stumbling around like a toddler. Is that because the dose is less, because the sub-Q doesn’t work as well, or because I no longer have meningitis and I’m doing more – not sure yet but I will keep tabs on myself and let you know what I decide.
Thank you everybody for taking such an interest in this process. It is very unobtrusive to my small life and so far the side effects are about 75% less than IVIg. Now that we are on our own I will be doing it 3x a week just before bed so I can sleep through any side effects. I’d like to be able to recommend it but I need to be sure I can be stable on it before I jump on that soapbox. Keep your fingers crossed. 🙂
P.S. I should point out that I took a children’s Zyrtec the first infusion and since I had no reaction and hate sleeping 12 hours I haven’t taken it since then, or any other antihistimine, but I do take a stomach acid reducer which seems to help with the nausea – and I’ve recently been taking probiotic pills, every now and then.
Also I read an article in the recent Ig Living magazine that mentioned that because of rising healthcare costs some insurance companies may require a trial run of sub-Q and have it proven ineffective before authorizing IVIg… interesting.
March 1, 2010 at 9:54 am
Thanks for the detailed replies!! I am praying it works for you and the foot drop is because you are doing too much as you mention. You seem the happiest that you ever have since we met on this site. I am praying for you!
AnonymousMarch 4, 2010 at 5:06 am
Tuesday’s infusion went fine, this time done by me in my belly with no nurse there. All went well – however – I have had really horrible intestinal side effects this time around. Lots of pain, spasms, inflammation, fluid retention, swelling resulting in back pain etc. etc. It’s been bad, I’ve been reduced to a puddle of misery whining and feeling sorry for myself. But I’m better now. Funny thing is my nurse called yesterday to ask how things were going and if I had more side effects this time around because I should have the full dose in me by now. Um – yeah, actually, I did. :rolleyes:
SO, the next infusion will be in my arms because I’ve decided I’d rather feel like somebody punched me than go through that misery again. I’m still not totally over it 38 hours later. We, my nurse, my husband and I have all noticed that the side effects tend to occur where the infusion is so arms and legs can be sore but no more belly pain please. 🙁
The good news is that I seem to be leveling out with the energy issue. Slow and steady is the motto of Vivaglobin and that seems to be what I’m getting. It is taking a bit of adjustment because I’m used to this up and down roller coaster of symptoms, side effects and relief from those coupled with short bursts of energy. Now there seems to be a slower and steadier availability of energy which makes it much easier to plan daily activities. As for the foot drop, still got that, some increased coldness and numbness too but again I’m doing more. On IVIg I’d have one or two days a month where I could get some cleaning done and I’d bustle around for 4-5 hours trying to recover from weeks of neglecting the house. I could maybe do this two days in a row then I’d be down for the count until my next infusion. Now I can do a couple of hours a day, about 25% of what I’d do on IVIg, but then after an hour or two of rest I can get up and do that again… and again. So it’s taking some getting used to and I’m giving it another full week before I decide I need to up the dosage.
I’ll let you know if my next infusion produces any weird side effects but all in all I have to say my outlook on life has improved since the meningitis has gone. 🙂
March 4, 2010 at 6:54 am
Julie, I’m praying along with Dawn. God’s richest blessings for you. Gary
AnonymousMarch 4, 2010 at 6:11 pm
Please see my post on the other thread about Vivaglobin. Hope it helps.
I was told by the pharmacy and my nurse that it would take about six weeks before you would know the full effect of sub-q therapy. As I stated in the other post, I have done extremely well.
I’m sorry that you have some intestional issues after your infusions. I wasn’t even aware that it was a side effect. Hopefully, as time goes on this side effect will go away for you.
I was happy to see that you got that boost of energy right away. Remember, try not to overdo and tire yourself out.
My thoughts and prayers are with you.
AnonymousMarch 5, 2010 at 3:45 am
Well I must say that was an unexpectedly severe side effect this last time around. My intestines are still quite painful and inflamed and yesterday afternoon I was in so much pain I finally called my doctor who told me to call the pharmacy or the manufacturer. So I called the specialty pharmacy infusion nurse who said “call me anytime with questions or side effects” and the first question out of her mouth was “well I’ve never heard of this side effect before, have you called your doctor?” I was very proud of myself that I didn’t start screaming in frustration, instead I told her that according to the literature she sent me it’s the second most reported side effect after headache. But no, I have to be different here as well because of all the immune deficient and CIDP patients they have on sub-Q, none of them have ever had intestinal side effects. Figures. If there is a 1% side effect I’m going to get it.
On the flip side, the nurse did tell me I don’t have to switch sites every time, I can use my legs or arms exclusively and that whatever side effects I am having should settle out in a few months as Barbara also said on her thread. And despite feeling poorly intestinal wise, I still have energy and still managed 3 loads of laundry yesterday. By the way, this intestinal side effect is just pain, there have been no changes in my bowel habits – just pain, spasms, swelling, inflammation – those little treats, not the big ones.
Barbara – you said you are getting 11.52g, 3x a week in 5 needle sites… is that 11.52g PER SITE, or 11.52g divided by the 5 sites… so a little over 2 per site? I am getting 36mL and it’s much too early to tackle the math on what that works out to in grams. But when I asked about what to do about the intestinal side effects, the pharmacy nurse told me I could easily go from 3 days a week to 2 days a week by splitting the third dose and combining with the other two – so I’d be getting roughly 55mL in 4 sites twice a week. Though why that would help with the side effects I’m not sure but I guess if the hour and 15 minutes it takes to do the infusion three times a week becomes to burdensom in my ultra-busy social life I will consider it. :rolleyes:
I’m sticking with it – pun intended – and tonight I’m going to stab myself in the thighs and visualize the Ig dissolving all that subcutaneous fat that has accumulated since I no longer hit the treadmill at 4am before work. And while I’m visualizing that I’m going to do my best to convince myself that I will have no side effects, that this will work very well for me, that things will balance out shortly, my life will start to improve by leaps and bounds and all of our neurologists will become the most brilliant telepathically connected network of sharing and information in the history of the world so that we are all receiving the best treatment possible for our version of this disease.
🙂 Happy Friday 🙂
AnonymousMarch 5, 2010 at 7:04 am
OK I’ve had some coffee now and I’m trying to figure out this math… can somebody check me on this? This is the formula I was using
total volume * grams/mL = grams
On IVIg I was receiving 400mL of 10% Ig solution once a week – or 40g a week.
On subcutaneous Ig I am receiving 108mL (divided into 3 doses) of 16% Ig solution – or 17.28g per week.
Am I missing something here or am I getting less than half what I was with IVIg? Math is not my strong suit… :confused:
AnonymousMarch 5, 2010 at 7:40 am
Good Morning Julie,
The way you are calculating your math is correct. But, I know that my pharmacy said that the formula for calculating Vivaglobin is different than the IVIG. When all is said and done I am actually getting a little more with the Vivaglobin than I was with IVIG per month.
The 11.52grms. is divided into 5 sites each time I infuse. I was getting 100gms of IVIG monthly and the pharmacist said I am getting a little over that amount. I will try to contact him today to find out how they calculate the Vivaglobin dose.
Praying that your side effects quickly go away. Have a great day!
AnonymousMarch 5, 2010 at 8:11 pm
I get 300 units a month of 10% Gammagard. Its no fun having 6 infusions a month each taking 7 or more hours then me sick as a dog the next day.If have 2 in a row beat ya I’m in bed for 2 -3 days feeling like a truck hit me.
The time frame of Sub-Q is what catches my attention. My neuro is known for being up on the newest techniques/treatments and I see him next month. If I could have this done within 2 hours and not feel so crummy after wards it would be wonderful.
It would nice to get rid of my chest port too.It reacts to very cold weather.
Glad this seems to be working for you, Julie.Keep us posted.
Loved ya last paragraph in post about telepathically connected neurologists.:D
AnonymousMarch 7, 2010 at 5:16 am
Saturday’s infusion in my legs went very well – no side effects worth complaining about. Following my early morning infusion I did 2 loads of laundry, made pulled pork barbecue, homemade bread rolls and swept and mopped the kitchen floor. 😀
It was a marathon day yesterday and I’m tired but only a little bit sore today from all the work. I took breaks and paced myself but I have to say I haven’t been able to sustain that level of work in quite a long time.
I’m looking forward to getting on my permanent schedule next week of M, W, F evenings in my legs. Once I am stable in the delivery it will be easier for me to judge my energy levels and long term effects. So far, knock wood, cross fingers and poke myself in the eye… I seem to be doing great as long as I avoid infusions in my stomach area.
I think I might drive my husband crazy with my good mood and bouncing around the house – after four years he has gotten used to me being kinda quiet and sticking to my cave because of the meningitis. 😉
March 7, 2010 at 9:47 pm
I’m glad you are getting the help you need and that you’re on an uphill course. BTW you have made me stop and think about persistence and you seem to be an example of that idea.
Don’t worry your husband will quickly get used to the new you!
March 8, 2010 at 1:04 pm
I can just picture you with an apron on, wielding a wooden spoon with biscuit dough on it and flour on your nose!! Glad to hear the energy is up. You seemed concerned last week that maybe you were not getting the same benefits, by the sound of this weekends activities I think you may have to re-evaluate!!! Sending you a pm.
AnonymousMarch 8, 2010 at 8:59 pm
To be able to get some parts of LIFE back is a miracle for sure!
You are rite tho, to be well aware of pacing yourself. To forget and ‘overdo’ can get you into those ‘uh-oh!’ moments none of us want!
Hey! Go and drive your DH crazy! Just make him aware this is only gonna work if the STUFF works! Keep him interested and ‘vested’ in the whole process and all it entails. Think on it? Makes HIM feel useful in a way he’s not really been before.
OH brave person! I am truly happy for you!
Keep faith and hope!
AnonymousMarch 9, 2010 at 6:17 am
Yesterday’s infusion went fine, basically nothing to it now. It took a little over an hour and I used treatment as an excuse to sit at the table drinking tea and reading a good book. I can’t even remember the last time I sat in the sun, drank tea and read a book without wanting to squint myself into a dark corner and cry.
Today I am tired because once again I had a bit of a marathon day. Actually I did too much, failed on the pacing aspect, so I have to take today off as punishment. I woke frequently last night with muscle cramps and nerve pain which hasn’t happened in a couple of months at least but I’m not taking it as a downhill slide just yet as I’ve been doing a lot. I have noticed my eyes aren’t working quite as well as they were, the double vision creeps back in the afternoons and my eyes tire more easily reading than they have been. Keeping my fingers crossed it’s just because they are working extra hard adjusting to the sudden influx of sunlight and will build up their strength again in a few weeks or months.
Thank you everyone for all the PMs – I’m glad to know my ramblings are helping in some little way. Dawn I got your PM, I printed it out and will do as you suggest – hopefully you are right! I’ll write more later, heading back to bed now… 😉
P.S. Dawn there was not only flour on my nose, but all over the front of my sweatshirt, all over the counter and floor too. I’m a messy cook – having your muscles jerk on their own makes things quite interesting… and messy! Most things that land on the floor are happily cleaned up by my dogs though – so far the only thing they won’t eat are grapes.
March 9, 2010 at 7:42 am
Thats funny about the dogs!! My dog loves grapes, I think it was Kelly that told me grapes are bad for dogs.
AnonymousMarch 20, 2010 at 4:49 am
Just a quick update because I’m tired 😮
I am doing fine with the treatment except for one little part of it – the part where you pull back on the plunger to check for blood. I cannot see the little bubble very well so I have to have my husband check it for me. Other than that I have no trouble administering it myself, its quite routine by now… sub-Q and an hour of TV.
I still cannot tell whether I’m going downhill or staying the same with minor fluctuations. I am tending to think I’ve slipped a bit because my eyes are not cooperating quite as much and I’m having more autonomic problems. I head in for the needle and taser next Thursday (that’s EMG and NCV tests…) to see if there is any measurable change and to talk to the doc about possibly upping the dose a bit. I’m also hoping he can give me something for the nausea besides phenergan which makes me sleep too much. I’ve traded off the meningitis headaches for constant nausea and morning vomiting… not every morning but at least 3 times a week. Its still a trade off I can accept though because the headaches were just devastating – couldn’t go outside or even leave my dark cave room when the sun was out. The nausea is not constant and usually only bad enough to throw up first thing in the morning. If I can make it past that point I’ll just be queasy until the Ig wears off.
On a good note I am getting to know my limitations again and therefore pushing them further and further. I have days where I cannot do anything but I have days like yesterday when I can do all kinds of stuff like sweeping, raking leaves, etc. and not have to stop after a half hour. Of course today I feel it in every one of my complaining muscles who have been lazily hanging out doing diddley-squat for the last 4 years. But they will get stronger and less sore – and doing yoga helps a LOT with the soreness.
I am still hopeful this will work for me, I am still willing to trade off some functionality to not have meningitis again, but I am not giving up on trying to make my life where I want it to be. If I’m not the architect of my future then I am a victim of chaos and crises tossed by the winds of fate and I choose not to be a victim. 🙂
AnonymousMarch 20, 2010 at 9:25 pm
Now if only my insurance company and my IG provider can come to simple terms!
I’m grateful that you’ve not got those HEADACHES! They are killers. Even little ones are enough to put you out for a couple plus days! Bad ones for over a week!
I am comforted that your doc is doing all the key ‘follow-up’ tests! Some do, more don’t and then there can be problems…
As for getting back in action? Do it super slowly please! You lose muscle tone at the rate of one day ‘off’, takes 3 days to get that one day back! A very old axiom but it is true for us…. Learn to pace, then re-pace yourself as you build strengths. Do not go gung ho and then find yourself in what I call an “UH-OH” situation. Those aren’t just scary? But super scary!
It takes a heap of PLANNING, working out routes to get here to there and back again [in one peice], and then timing of how much you can do in a limited amount of time! Seek out and know the stores that have the ‘scooters’ and don’t be afraid to use them! You get my drift. It’s all PLANNING. Wish it weren’t so, but that’s the way it is? Hugs and keep going!
AnonymousMarch 21, 2010 at 4:34 am
Just to be clear, and to encourage boldness in you all – I asked for the tests. So far my doctor has been fairly receptive to me directing my own treatment. I try not to step on his toes too much but I ASK FOR WHAT I WANT and I give my semi-logical reasons for it. I asked for the tests because
1) I want to know,
2) I expect he wants to know,
3) it’s helpful to have valid data when you ask the insurance company for more of something,
4) its better to get the tests ahead of time than delay by having to go back for the tests later, you know how that goes – you see your doctor, you know he is going to order the tests – you see him for 5 seconds, he orders the tests then you have to come back another day for the tests and yet another day to have him interpret them for you… that kind of stuff drives me nuts, especially because like many of you I don’t live close to my doctor. So now I ask for the tests first, I talk to his secretary, explain what I want, she emails the doctor, he tells her OK and we set up the tests – or the doc will call me himself to ask what is going on and I don’t have to make multiple trips.
Also I do research before I go to the doctor and try not to hit him up with the “cure of the week” every time I see him. It has taken me several years but I have built up a fair amount of credibility with my doctor so he is willing to trust my judgement when it comes to my treatment. My body is not normal and does not always respond predictably to medications that are routine for other people, or treatments that are safe, or surgeries that are minor. At times my body can do extraordinary things, but at times it can also freak out over something as simple as ibuprofen. My point is that I know my body much better than my doctor so we try to work together to come up with the best treatment plan. I speak up when I think something might have the chance to fail, and I speak up when I think something might have the chance to work – like sub-Q, and I don’t give up when the path gets challenging. I just don’t give up, ever, because life is worth living.
And I am re-learning how to pace myself with this level of energy – it’s better in many ways, my energy level is more of the marathon type now rather than the short sprints I used to get with IVIg. Its slower, I’m not as peppy as I used to be, but I can walk further before I start shaking and I stay up later now.
And… I’m so much happier. I cry for joy now, not because of the headaches. 🙂
AnonymousMarch 21, 2010 at 4:57 am
Hi Julie, this all sounds pretty good for you. Am glad you are feeling so much better, I have been watching your posts, and it sounds like sub cut definately has huge advantages. We are travelling to Canada for a 6 week holiday shortly and jsut wish i could tap into this great source. (Have only managed to lengthn my IVIG out to fortnightly) so will be away for 6 wks wtih no IVIG (Just pulse methyl pred and my immunos, which i usually take anyway)
All the best with the continuing progress and look forwrd to your notes.
AnonymousMarch 21, 2010 at 9:09 pm
Still, don’t ever forget? As much as you want to? To pace yourself, you will find that as days go by, each one you can do a bit more, the next, even more! Don’t go into an overachievment fit tho, as you’ll be set back for days!
In a way? You seem to have approached your doc in a similar way as I had mine. I tho, have never felt the 5-minute shuffle tho. I may have to wait an hour later to see him? But when I do, I know that attention is on ME! And be it 5, 10 or 30minutes? I will get listened to. And that those waiting behind me will be heard as well. That’s why I appreciate my neuro!
But, there are always questions by me, ‘which will be gotten back on’ and never are? Irks me, as I give more info and am more up to date than he at times? But HE knows that, and knows it’s available thru me if he needs it. Oh well, he’s got to deal w/ hundreds of neuro problems, CIDP is just one he is familiar with…Thank goodness he is familiar with it!
Keep on. Love your reports!
AnonymousMarch 26, 2010 at 5:43 am
I made it in to see my doctor yesterday to discuss my status/progress on subcutaneous Ig. We both agree that in the quality of life issue, my aspect and presentation I am vastly better than I was on IVIg. We also both agree that I’m not getting enough so we’re upping the dose by another 20mL per session so that I’ll be getting 56mL per session now. My initial dose of 36mL is almost enough, it’s just about 6 or 8 hours short and having that gap means there is a window for things to go downhill. Sometimes I find it incredible that my body can go from numb to un-numb or vice versa within a matter of hours but that’s the way it is on sub-Q. Since I am no longer so devastated by IVIg side effects I can pay attention to the little things like this one patch on my face that goes numb when the sub-Q wears off and goes un-numb about a half hour after the infusion is over – it’s very consistent unlike some of my other symptoms. 😎 I’m not going to dwell on what’s going wrong – it’s what I expected, my eyes and autonomic stuff though fortunately my breathing, heart rate and blood pressure are all OK… slight orthostatic hypotension but then I don’t stand up much. 😉 I am certain of this now after 5 weeks but I’m not worried because they got better before and they will get better again. I insist.
Here are some other thoughts on things I’ve noticed since switching to sub-Q: I actually have more energy despite the fact I’m not getting enough at the moment, I think largely due to the fact that I’m not having to deal with such huge side effects. I don’t even think I realized how bad I felt until the last few weeks when things have settled out. Despite the fact that I have numb patches on my legs now they actually work better with better coordination and better overall strength… again likely due to the fact that there isn’t an all-out war going on in my body between the IVIg and my own Igs… it’s more of a friendly neighborhood fisty-cuff. And, I’m sorry to say, my brain is working better and my sense of humor is returning in full force. 😀
The only real side effect I’m having is the nausea. I described it to the doc as being like sea-sickness, which I don’t suffer from normally. If I turn my head too quickly, or stumble and shake my stomach, or have a 3 hour car ride to see my doctor through the mountains… I’m gonna puke my guts out. Otherwise it’s just there in the background. I’ve lost some weight because I can’t really eat much – both because of the nausea and my lack of ability to chew. (I was so sad when my husband made London Broil this weekend… all I could do was stare and drool) Anyway, the doc wants me to try Zofran as he says the nausea in this case is caused by a CNS problem and Zofran is designed to fix that… as opposed to my other nausea which is caused by the low motility of my guts. If any of you have tried Zofran please let me know. I am not an experimental drug type of person – I typically have all the rare side effects and none of the common ones. I wanted to go with marinol because (cough, cough) I did serve in a nameless institution overseas for about 3 years and had the opportunity to try it so I know I’m not allergic. However the doc wants to try this first as he is worried I will sit on the couch, eat potato chips and watch TV all the time on marinol. I think it’s unlikely since I don’t like TV and I can’t chew but I’m willing to try the Zofran if it works without side effects.
Anyway, that’s it for my update. All in all I’m doing a lot better despite the tendency to have a sensitive stomach. I’m not switching back ever – I don’t care if I have to do sub-Q every single day for the rest of my life I am never going back to feeling as badly as I did on IVIg. Of course there is always the possibility that sub-Q will start having more side effects but I’ll cross that bridge if I come to it.
Happy Friday ya’ll!!
March 26, 2010 at 8:33 am
Are you going Texas on us ya”ll? Julie, we used to take Zofran, it was high on the co-pay tier, $60 for us AND we had AWFUL headaches, it was a different sort than the meningitis one w/our ivig. We stopped it. Not to say you will have that reaction. Being that you say it is like sea sick, what about dramamine? How about charcoal pills? They work for nausea, but not sure if would with the sea sick kind of tummy ache. The motility issue may be the cause, in that case maybe the charcaol could help? Just a wacked out mom idea:D Not sure where we are, weaned down to 30g a month this month, pain has increase, but stregnth seems to be there. We are fighting something so maybe it is affecting residual areas causing the pain. Go an April 2nd, will see if reflexes are still good, if not probably ncv/emg. Possibly loads again I would suspect. If we are going south, I think 7o grams a month is our sfety net, do you know how much would need to be delivered subq for 70 grams, how many shots etc? I am so happy you are doing so well!! Did the eye situation get better?
AnonymousMarch 26, 2010 at 10:40 am
Nah we invented ya’ll in the South irrespective of which state you were born and raised in…:D
As to your recommendations – good call, I tried dramamine, YAWN, slept for most of the day – I also tried charcoal, that kind of made it worse actually since then I had something nasty to throw up… ginger works pretty well up to a point, I’ve also tried phenergan but that makes me sleepy and dehydrated. There are the patches, I haven’t tried those yet but I know they make you sleepy as well and I really don’t need any more help in that regards. :rolleyes:
AnonymousMarch 26, 2010 at 3:04 pm
I am glad to hear that you have a treatment that does not give you side effects. I have to ask though, where can I get more information on the side efffects. I am worried about kidney damage and it really really stinks wheno we get the headache, nasueau and vomiting. We do not however get all side effects every time it all varies. My daughter is 16 and get 90mg every 3 weeks over 2 days. Looking for information mostly. And am very interested in following your story.
March 26, 2010 at 4:10 pm
Julie is the expert, but I think because it is aborbed in the body it cuts down on what the kidneys have to filter. Would it be ok if you tell me how much she weighs? I was wondering because they told us (153, 13y/o 5′.6″) 35 was the max we could do per day. At 35 grams it took about 5 hours. is it possible they run it too fast and it is too much per day and that is why it is hard on her? Is your unit of measurement micrograms, or do you mean grams? If we ever started reacting to ivig badly again or the port went bad I too would consider sub q. I just don’t know what the conversion would be when switching over. I just don’t know how many shots it would take and how easy it would be for a 13y/o. Maybe we can learn from Julie together!!:)
AnonymousMarch 26, 2010 at 4:41 pm
EXPERT????? 😮 You must be joking Dawn!!!
but I’ll share what I know as long as you know I’m far from an expert on anything except my own body…
For IVIg the side effects started off variable and ended up consistently bad. For sub-Q the side effects started off non-existent and have climbed to mild. If you are looking for side effects from IVIg – this is probably the best place to look as all the drug companies repeatedly deny the more serious side effects I got from IVIg. As opposed to Vivaglobin who states on their website exactly what the side effects are… you can go to [url]www.vivaglobin.com[/url] and read what they have to say. I also spoke with the nurse at my specialty pharmacy who has lots of experience with sub-Q people, she says by far the most common side effect from Vivaglobin (sub-Q) is the headache which I do not get. I have not had any kidney pain since switching to Vivaglobin but I had severe kidney pain with IVIg and at times would really have to crank out the diuretics just to be able to pee… mostly just coffee and tea but if I am really desperate I’ll drink a beer – guaranteed to make me pee.
From what I understand Dawn, you are correct that because it is absorbed slowly thru the skin it has less of an impact on the kidneys. Plus the sheer quantity is much less. With IVIg there was 400mL of syrup consistency that I could not drink enough to dilute… with Vivaglobin there is 36 (soon to be 56 mL) that is absorbed over 48 hours from my fat thighs. A vast difference in impact on my system.
I still don’t have a handle on the conversion from IVIg to Vivaglobin but I don’t feel so bad because my neuro has to look it up too. :p Math makes my brain hurt so I avoid it whenever possible but I think there are probably conversion documents on the website since that’s where my doc was looking. :rolleyes:
I’m probably not answering all your questions so please keep asking if I am not understanding what you want to know – the later in the day it gets the less my brain wants to work so it’s pretty lazy right now.
Hope you all have a wonderful weekend!
P.S. I should add that my husband who passes out cold at the sight of blood or a dead animal has absolutely no problem doing my treatment from start to finish, including poking me with the needles. It’s only scary the first few times then it becomes routine. I do believe a 13 year old could do it with supervision and assistance, the same for a 16 yr. old.
AnonymousMarch 26, 2010 at 4:42 pm
I am horribly sensitive to meds. In fact, I just took a homeopathic remedy on Sunday, ONE SIP, and I have had dizziness and a rash this whole week, so that should tell you how sensitive I am. Anyway, I had SEVERE nausea in the beginning with GBS for quite a while. Took Reglan (bad drug/side effects and made me felt worse), Compazine (ok) and then switched to Ondansetron, which is the generic for Zofran, much cheaper and affordable. With the severe nausea, it just took the edge off, but it definitely helped. I was taking 8 mg. Now occasionally, when I get nausea, I will take 4 mg. It makes me a little sleepy and gives me a slight headache, but very tolerable side effects. Nausea is the absolute worst and I empathize with you, having had it for 2-3 months daily, and still occasionally. I would cry at the dinner table because I could not eat (and I love to eat!!) Ask for Ondanstreton (4 or 8 mg) and give it a try. Good luck!!
March 26, 2010 at 6:46 pm
Jessica, You HAVE to get that ELisa test it will tell you what drugs/chemical compounds you are allergic to! I hope you are feeling a little better these days!
AnonymousMarch 28, 2010 at 4:50 am
I completely forgot to mention something important my doctor and I discussed. Several weeks ago my specialty pharmacy called me and told me that recent studies showed Vivaglobin was absorbed faster with fewer reactions if you used the same site all the time. When I showed my therapy journal to my doctor he noted that I was always doing it in my legs and I told him what the pharmacy nurse had told me. Instead of being interested, as I usually am with new research the seems helpful – he instead asked “did you ever stop to think about why it might be more permeable?” And went on to explain that by using the same site all the time I run the risk of permanent tissue damage, look up the word “necrotic” I’m not going to describe it here – and the breakdown of cells and tissues could explain why it’s more permeable when you use the same site all the time. 😮 TOTALLY MAKES SENSE – and that’s why he gets paid the big bucks. I was typically getting no reaction out of my legs but when we did my arms on Friday – they got a skin reaction – ten times more than I’ve ever seen in my legs. I’m going to take that as a good sign even though they were sore a day later. SO for now we are going to alternate arms and legs, we never got training on using my back but I think we might need to do that now. I’m still reluctant to use my abdomen for fear of causing that horrible pain/inflammation/spasm thing again.
Oh and one more important thing to make you smile – IVIg caused me to gain more than 40 lbs. When I switched from monthly to weekly IVIg I lost 10 of those, when I switched to Vivaglobin I lost another 20 lbs. I think the remaining 5-10 lbs. are really fat, the junk food kind, and not due to the Ig but still – pretty cool huh? 20 lbs in 5 weeks is snappy!!! and now I don’t have to buy new clothes! I’m not really a vain person but I’ve always been conscious of my weight if for no other reason than fear of more slipped discs… bad backs run in my family and I have seen first hand how being over-weight exacerbates the problem. I’ve been fretting over the weight-gain while at the same time trying not to beat myself up too much for things I can’t control. Now I only have to worry about my intake and that’s just up to me to monitor what goes in my mouth. 😀 And it sure is much easier to get around not carrying around that extra weight – perhaps this is the real reason my legs are not shaking as much.
AnonymousMarch 28, 2010 at 5:38 am
I am so excited about this!! I can hardly wait to get to the Dr. and start fighting for it.. it would give a life back. i did read that someone else in BC was trying to get it too. I will fight tooth and nail. Without the ivig I am in a chair unable to feed myself. Now that the side effects are tooo dangerous..meneigitis one too many times.. dr. is scared of a stroke ( yea me too) I was so disheartened to think I would be back in a chair.
Thank you Thank you Julie for sharing this.. I have hope again.
AnonymousApril 22, 2010 at 7:41 am
Well it’s been about a month since I updated this. All is going pretty well though I did slip into a relapse resulting in some creeping paralysis. I think part of that was due to me not getting enough Ig and part of it due to the chaos going on around my house – attempting to replace an entire roof in the middle of spring rains has taken more out of me than my CIDP relapse. Who knew it would be such good physical therapy to run around the house in AFOs emptying buckets of water from the leaking roof… 🙁
All that is (hopefully) behind me now as I sit in my blue-tarp roof waiting for the rain to stop so they can put on the new roof. I’m on my increased dose now – we went up to 56mL – and it is helping a lot. There isn’t a gap anymore, it seems to last right up to the next treatment – which I can tell because my hands no longer shake when I am preparing the sub-Q dose. I’ve only had two treatments at the higher dose but I can already tell my legs are less numb than they were this time last week. In another month I think the damage from the last month will be mostly repaired. Cross your fingers we don’t have any more crises around here as that takes a huge toll on my energy level.
I’m still very much in favor of sub-Q, though with the increased dose it now takes almost two hours three times a week – essentially the same amount of time as IVIg – the timing is up to me and my husband, the side effects are much less, and I don’t feel as “sick” as I did on IVIg. 🙂
Now if I could just chew again…:rolleyes:
April 22, 2010 at 8:52 am
Is it two hours each of the days, 6 hours total for the week? Is it every week? How about cost, is it the same as infussion? Honestly, do you REALLY think Kev could handle it? Is it two hors because you take breaks in between or does it really take that long?
We too had a relapse, we were on practically nothing, 20g a month, or 10 every 2 weeks, May was going to be our last month. No such luck. How much would you say you are getting if measured in regular ivig? Is there a formula you could give me? For instance we are getting 140g/month nowwhat would it be in a sub q conversion., Not sure how long we will do that, I suspect a couple of months. We are trying 2 days two weeks in a row and then two weeks off instead of the four days at once. Hopefully he won’t have the awful reactions this way. If he does get them anyway, I am going to suggest 4 days in a row again, why get sick twice in two weeks. If the reactions are bad, I might ask about the sub -q. Do you think it would be totally wacky to infuse half and sub q half? Maybe it would help with infussion reactions and not be so invasive regarding a large amount of sub q injections.
Thanks a bunch for your detailed info. I am so happy you are feeling better!!
AnonymousApril 22, 2010 at 4:35 pm
It used to be an hour at 36mL but now that we are at 56mL it takes about 2 hours per session, three times a week. Likely Kevin would need less than me as I am pretty sure he weighs less. 😮 Yes, I really do think Kevin could do it – WITH supervision and assistance. I need assistance from my husband when we do my arms because I can’t see or reach the sites.
I do not know the cost as we have a $2000 out of pocket yearly which we covered by the end of January so technically I don’t pay for anything else. 🙂 Next time I talk to someone with two brain cells at the pharmacy I will ask.
No I don’t think it would be whacky to ask for half and half, I was going to do that myself but what with the communications being so … um… disconnected – I decided that would just add a layer of complication I didn’t need right now.
And I am still not getting any major side effects even with the increased dose – just a little nausea now and then.
I’m sorry to hear Kevin went downhill when you tried to reduce the dose, I understand the drive to minimize the impact of this disease on his life, he is too young to have his life driven by treatments and medications.
As for the calculations – you’ve got me on that. I assumed it would be pretty simple – IVIg is 10% Ig, sub-Q is 16% Ig but I have been assured “its not that simple” by the pharmacy. I’m not sure if they are putting me on or not because this is the same pharmacy that went ahead and send the script for 66.6 mL even though 1) the dose I talked to my doctor about was 56mL 2) the syringe only holds 60mL and 3) I have no way of measuring 0.6mL given the equipment they gave me and 4) 0.6 mL out of a 3mL bottle seems like a total waste of materials considering I cannot save the rest for another treatment. SOOOO I don’t have a lot of confidence in them at the moment. :rolleyes:
Aside from that… I am pretty pleased with the way the sub-q is going. 😀
AnonymousJune 25, 2010 at 2:51 pm
Hi Kate and everyone else 🙂
I responded to your private message but thought I’d let everyone else know that I’m still doing great on Vivaglobin. I have very few side effects, certainly nothing like IVIg… no headaches, no kidney pain, no phlebitis, no huge roller coaster ups and downs. Everything is pretty much even keel for me aside from getting that “summer cold” everyone else around here got. Overall I am not getting any worse, though when I was sick with the cold I went downhill a little bit, but aside from that I am staying about the same in some areas and improving in others. My quality of life is much better not having to dodge the sun anymore so I am building up strength again, I am now able to sit up for 4 or 5 hours before I get tired and I can hold a pencil for about an hour now before cramping up. Walking is about the same but my stamina is greater and my… recoverability (for lack of a better word) has improved: e.g. I can walk until my legs shake then sit down for an hour and be able to get up and walk a bit more – whereas six months ago once my legs started shaking I was done for the day. The biggest improvement has been in the side effect area – I don’t think I really realized just how sick I was feeling until I got off the IVIg – my husband says I’m a different person nowdays – back to the way I used to be. 😀
I believe they are coming out with a more concentrated version called Hizentra which will be 20% solution, rather than Vivaglobin which is 16%. If possible I will switch to that to cut down on my infusion time, right now it’s taking 2 hours/day three days per week. It’s still a thousand times better than 6 hours of IVIg weekly followed by days of screaming from meningitis… if you are interested here is the link [url]http://www.hizentra.com/[/url]
Happy Friday everyone
AnonymousJune 26, 2010 at 9:02 pm
It’s like getting a part of your LIFE back! Bet your husband doesn’t know what to do with you! But I’d be wholley, truly and utterably grateful IF my own DH could help with such things as essentially ‘plugging me in’?
The main thing? IS THAT IT’S WORKING!
Still, for many, me included? Updates are key to the consideration and the continuation of IG therapy that particular way.
We all play it by ‘ear’? Your ear is sounding more keen these days. I hope you have good years on this treatment! Hope always!
June 27, 2010 at 11:25 am
It’s great that you have been so proactive and and thus are receiving the treatment that is not only healing you, but making your life more liveable as it should be.
I hope you get continually better and thank you for sharing this valuable information with all of us. We need to know about the best that is available.
AnonymousJune 29, 2010 at 8:27 pm
So glad for you feeling better from this new treatment. I told my nurse about it and she has already done it for a few others. Calls the tubing “The Octopus Tentacles” as so many for fusing IVIG from bottles to patient.She knew the trick about inserting a needle to make the bottles drip faster.
When I started IVIG in just ONE week-two infusions-the fluids caused me to blow up TWO dress sizes much to my horror. The jeans I’d worn to the clinic could in no way be buttoned again with a 2-3 inch gap. After 5 years I’d down one size but it was hard.
I suffered from severe infusion headaches, nausea, dizziness and just plain ill as a dog on the sofa not being able to lift my head.But I was feeling better with the CIDP symptoms and the out of control progression started to slow. The pain too. After years of pain it was getting quieter and the pain meds helped too. I still have bloating after each infusion-sigh…
I spent today in bed-one of the fun times cause the infusion yesterday hit me harder than usual.
I don’t know what I do without IVIG.
My best wishes for you and feeling better.
With the work in progress for MS treatments with a simple pill maybe some of that research with help us one day too.
Keep us posted on your progress.
AnonymousJuly 7, 2010 at 8:46 am
My infusions are still going well – and I have to say it’s been kinda fun to eat Oreo cookies and not feel guilty – my excuse being I need to keep a layer of body fat so I can still do sub-cutaneous Ig (SCIg). :p And the reason for that is that I’ve lost a lot of weight switching to SCIg, like all of the 40 lbs I put on with IVIg. !!!!! 😀 !!!!!
I do still get side effects but it’s nothing like IVIg where they were more systemic. In any case I thought I’d share them since I can now tell what is side effect and what is disease, which was much harder to do on IVIg. It’s also fairly dependent on where I do the treatment too:
My arms – slight swelling at the injection site, but not as much inflammation as I see in my legs… initial side effects are minimal but over night my lungs tend to fill up with fluid as they did with IVIg.
My legs – moderate injection site swelling but it’s not itchy or painful unless I mash on it… no other side effects, don’t get the fluid in the lungs or intestinal issues.
My stomach – mild injection site swelling, followed by “beach ball belly” lots of swelling, fluid retention, intestinal upset (which is really just things getting started again after a day or two of semi-paralysis), did I mention the swelling… and how huge my belly gets? It’s ugly and I’ve even been asked when I’m due and if it’s twins (you’d think with my white hair they wouldn’t assume that but…) I also get chest congestion with the stomach site but not as bad as with the arms.
All side effects are gone within 12-18 hours and since I usually do treatment just before bed I sleep through most of the side effects. I’ve started using Bactine on my legs and tummy before sticking myself, not that it’s all that painful but sometimes I jump when I poke myself (I know, it’s dumb but I can’t help it – and I never jump when my husband does my arms, which is kinda backward). Lots of water and very diluted gingerale help with the nausea and dehydration.
I do plan to switch to Hizentra both because it’s more concentrated so less infusion time but also BECAUSE IT DOES NOT HAVE TO BE REFRIGERATED! And let me tell you a month of vivaglobin fills both my vegetable bins and part of a shelf… and I’m super-paranoid about food contamination so I’m cleaning out that darn fridge at least three times a week. I’ll let you know how that works out for me but my next appointment won’t be until sometime in August.
I had a bit of a battle with my pharmacy recently when they abruptly switched suppliers which led to a huge reduction in the quality of the materials they were sending me. The biggest deal was with the 60 mL syringes (McKesson) which were, in my opinion, not just difficult to use but also defective due to a raised ring at the top of the syringe that trapped air bubbles. After an 8 week battle wherein I finally threatened to go back to my old pharmacy they finally caved in and bought me the BD syringes. What annoys me is they kept telling me that all their patients were complaining about the syringes and yet they did nothing about it. I had to complain non-stop for 8 weeks working my way up from the nurses to supervisory staff to pharmacy techs to warehouse managers and eventually the vice president of something or another… and got my old syringes back. But what about everyone else? They are still forced to use syringes that are difficult for numb hands to grasp, that have a ring around the top that collects air bubbles releasing them into the flow at random times and thus increasing side effects. I don’t mean one or two big bubbles, I’m talking millions of tiny champagne bubbles that take 45 minutes to an hour to get out of the syringe and even then still collect at the top. It’s something with the physical makeup of the syringe and/or the chemistry. The fluid has no bubbles going into the syringe – it’s the syringe itself that gives them the bubbles or at least encourages the bubbles to form. And it’s not just that either – all the materials they are sending now are cheaper versions of what we got before. Even the SCIg tubing set is weaker – to the point where if you clamp it totally shut you run the risk of actually cutting into the tubing and having it leak… even the tube that connects the syringe to the SCIg tubing is weaker and is frequently unusable due to extra glue, or a bent connection, or whatever. It’s annoying and it frustrates me that even though I have the good syringes now, none of their other patients do and so are still suffering. Their excuse to me was “well most of our patients have someone to help them with their treatment so the syringes aren’t as much of a problem to them” and “oh well the air bubbles are very small, they won’t hurt you and they will work themselves out in an hour or so” and my response to them was “well I don’t have three hours three times a week to do treatment, the air bubbles DO make the side effects worse (HEADACHE!!!) and I don’t want to force my husband to help me three nights a week for three hours, I am independent and want to stay that way and won’t be forced to have help due to your warehouse’s contract to buy cheap materials.” And do you think they are charging my insurance company less now that they are buying cheaper materials? Nope – I actually get to see the bill now and they are charging the same amount. Grrrr. 😡
I guess all that is to say that although I’m not much of a fighter it seems I can rise to the occasion when needed and though they have not heard from me in two weeks I have not stopped my campaign to get them to order quality materials for all their patients, not just me the squeaky wheel. It annoys me that we who are sick also have to fight for proper treatment from the very people who are supposed to be helping us.
OK, off my soapbox now. 🙂
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