Subcutaneous Ig Therapy = Early Returns are Good!

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! 😀

Julie

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.

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. 🙂

Julie

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.

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. 🙂

Julie

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 🙂

Julie

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:

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. 😉

Julie

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… 😉

Julie

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.

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. 🙂

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. 🙂

Hey ya’ll,

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!!

Julie

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:

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!

Julie

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.

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.

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:

Dawn,
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. 😀

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

Julie

Howdy ya’ll!

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. 🙂

Julie