Questions from new member
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June 30, 2008 at 9:49 pm
Greetings, everyone. I’ve been lurking on the forums for a few months now, and I’ve finally decided to “come out.”
I was diagnosed with CIDP about one year ago but, looking back and knowing what I know now, I’ve had the disease/condition for at least four years. During that time, I had been telling my family practice physician that I had neuropathy in both feet and lower legs, and he kept telling me that it was due to old age. When the condition progressed to the point that I developed severe foot drop (although I didn’t know what it was at the time) and that I couldn’t walk more than 200 yards or so, I knew it was more than “old age.” So, I got online and found a large clinic in a nearby city and I selected one of the neurological staff from reading his bio. On my first visit, within 10 minutes of meeting me, he diagnosed me as having CIDP. Of course, we went through the nerve conduction studies and the lumbar puncture, to satisfy the insurance company, but he was certain of his original diagnosis and, as it turned out, he was correct.
My initial treatment, forced by the insurance company, was prednisone. After one month of prednisone and 30 additional pounds, with no improvement, he prescribed IVIg. I was given a loading dose of 400 mg/kg (42 grams) each day for five consecutive days, then a monthly booster of 400mg/kg each month for five consecutive months. The infusions had absolutely no effect.
The neurologist in Baton Rouge referred me to a Dr. Stanley Appel at the Methodist Neurological Institute in Houston. Dr. Appel is reputedly one of the foremost experts in CIDP, GBS, and ALS in the USA. After three days of testing, with my being poked and stuck and shocked and proded, Dr. Appel confirmed the original diagnosis of CIDP.
At that time, I was having some spinal problems and had been diagnosed with spinal stenosis and foramenosis on several levels. Because Dr. Appel felt that some of my symptoms could be caused by the spinal problems, and because I was in severe pain, he suggested that I attack the spinal problems first. His logic was that after those issues were resolved, then, by process of elimination, anything that was left was probably due to the CIDP. So, I went to Florida for endoscopic spinal surgery, which was a complete success. The pain has completely disappeared and the foot drop on my right foot has improved, although very slightly. I feel as though I’ve already had one miracle and I’m hoping that there isn’t any limit on additional miracles.
Upon the completion of the spinal surgery, Dr. Appel increased the IVIg dosage to 600 mg/kg ( 62 grams). I started over with the loading dose of 62 grams per day for five consecutive days. I didn’t see any improvement until my first booster of 62 grams, one month after the loading dose. Within 48 hours after the booster, the neuropathy in my feet and lower legs had improved significantly, almost to the point of disappearing. Unfortunately, this only lasted a week, and now the neuropathy has returned to its former levels. I have two more weeks remaining before my next booster.
Because of some of the posts I’ve read on this forum, I called the office of my neurologist today and spoke with his nurse. I told her that I needed to have two-way communications with him in a timely manner, so I wouldn’t need to wait until my next appointment, two months from now, to tell him of the effects of the IVIg treatment. According to her, he doesn’t have a professional email address, but she did give me a fax number where I can fax documents to him. Supposedly, he’ll respond in the same manner. We’ll see how that works. If he’s not willing to have an ongoing dialogue with me, then I’ll look until I find a neurologist who will accomodate me.
I’m 64 years of age and in good health, except for this unexpected bump in the road. My legs are weak and my balance is shot. I wear AFOs on both legs and I use a cane to maintain my balance. The great toe on my right foot droops at least an inch lower than the other toes on that foot and I can’t move my great toe at all. Although I walk slowly, I can walk and I’m walking upright, for which I’m exceedingly grateful. My reading some of the posts on this forum has caused me to understand that my problems are minor, compared to those of others.
I’ve provided the foregoing information to give the forum members some history, in hopes of getting answers to a few questions.
1. I’ve seen references to IVIg dosages as large as 2 gm/kg, with frequencies as often as one week. I’ve had no adverse reactions to the IVIg treatments to date. Since I did show some improvement from my last booster, short-lived though it was, should I contact my neurologist and ask him to increase the frequency of the boosters to once every two weeks?
2. Or, in lieu of increased frequency of treatments, should I ask him to increase the doseage to 1 gm/kg, or even higher?
3. I have sharp pains in my feet, particularly in my toes, that come and go. I refer to these as “stabbing” pains. They only last a second or two, but they do get my attention. Since I began the current IVIg regimen of 600 mg/kg, I’ve also noticed similar (although not as sharp) pains on the outside of my lower legs. I’m hoping that these pains are signals that the nerves are regenerating themselves. Would anyone care to offer opinions on this?I’d also appreciate knowing of any dialogues that some of you may have had with your neurologists about increasing the frequency of treatments and doseages and the arguments you used to convince them to do so.
Many thanks to all of you regulars who devote your time and your research efforts to assisting others like me on this forum. After my first visit to the forum, I was convinced that many of you know more about CIDP treatments than either of the neurologists with whom I’m engaged. That’s OK with me. The neurologists are my portals to treatment. I’ll get my valuable information here.
I intend to dance with my wife again, and I don’t mean in the next life!
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June 30, 2008 at 10:30 pm
Hi Rod-wow you know alot already and I am new here but have had cidp for 8 years. I would suggest to you to journal exactly what you said above, your symptoms, how long you felt better-that’s the first thing my neuro asks me and then determines the frequency of the ivig . Call your neuro and ask for an immediate appointment and tell him exactly what you said above. Good luck to you. You have a great goal-a dance with your wife.:) Emma
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June 30, 2008 at 11:34 pm
Hi Rod,
When you say booster, I assume you mean a maint. dose. However, if you were getting 62 g per day over 5 days, that would be 312g total. Probably putting you at a little over#300. That would be the loading dose of 2g/kg. Technically a maint. dose or booster as you call it is 1g/kg, or half of what you got before. Currently, at 1 62g dose monthly, you are not getting a maint dose. That would be 151g every month. I guess you could just go to the ninds website, and pull up standard protocol to give to your doc. However, there is no standard. Once a month for a maint for you may be too far apart, you may need it every 2 or 1 weeks. It is trial and error. I would ask to be re-loaded and then do maint 1g/kg every 2 weeks for a few months, see how you feel and if you are doing well, then move to maint every 3 weeks and so on. I for sure would ask to be re-loaded to once again stabalize. Good luck and glad you joined in, lots of people will help.
Dawn Kevies mom -
July 1, 2008 at 12:24 am
Ok, Dawn did the math & I’m completely confused and I know what I’m talking about with this stuff, LOL. The math for the dosing confuses the heck out of me.
If, as Dawn says (and I believe her) you are getting the maintenance dose of 1g/kg then I would ask to get 2g/kg as a maintenance. I would also ask for another loading dose of 2g/kg over 5 consecutive days.
I tend to suggest getting the highest dose possible & then moving out from there. So I would ask to get 2g/kg once a week for awhile & see what happens. You’ll need to have some blood tests done just to make sure everything is ok though. If the dr doesn’t want to do 2g/kg over 1 day for a maintenance dose then I would ask him to go with splitting it up over 2 consecutive days. Sometimes that is handled much better. That does mean that twice a week you’ll be getting a treatment. You can do it though. When my daughter was 4-5 years old she was getting full 2g/kg doses 2-3 times a WEEK.
If that protocol works for you then I would move the treatments further apart. We’ve gone from every 7 days to every 10 days then to every 14 days. We usually try to wait a minimum of 3 months before the next spacing.
I went through the wringer with Emily’s neuro. We went back & forth on her treatments. I even switched to another neuro & was less satisfied. We went back to the 1st one, he realized that I meant business & now we pretty much do what I want. I think the neuro came around once he realized that I know more about this disease than he does. The best way to get through to your dr is to print up any info you can find on IVIG & high dosages. Print up any articles or studies that you can find on the positive outcomes of 2g/kg dosings. I say it all the time, Google is your new best friend.
Good luck,
Kelly -
July 1, 2008 at 2:58 am
Kelly,
Rod IS NOT getting a maint. dose. A maint. dose would be 151g a month, he is only getting 62g a month. That is not even a 1/2 a gram. 1/2g/kg would be 75g. (Assuming that he is a little over #300 based on the initial dose of 312grams total that he gave us. )
Dawn -
July 1, 2008 at 4:07 am
[QUOTE=Rod in Louisiana]
1. I’ve seen references to IVIg dosages as large as 2 gm/kg, with frequencies as often as one week. I’ve had no adverse reactions to the IVIg treatments to date. Since I did show some improvement from my last booster, short-lived though it was, should I contact my neurologist and ask him to increase the frequency of the boosters to once every two weeks?
2. Or, in lieu of increased frequency of treatments, should I ask him to increase the doseage to 1 gm/kg, or even higher?
3. I have sharp pains in my feet, particularly in my toes, that come and go. I refer to these as “stabbing” pains. They only last a second or two, but they do get my attention. Since I began the current IVIg regimen of 600 mg/kg, I’ve also noticed similar (although not as sharp) pains on the outside of my lower legs. I’m hoping that these pains are signals that the nerves are regenerating themselves. Would anyone care to offer opinions on this?I’d also appreciate knowing of any dialogues that some of you may have had with your neurologists about increasing the frequency of treatments and doseages and the arguments you used to convince them to do so.
Many thanks to all of you regulars who devote your time and your research efforts to assisting others like me on this forum.
[QUOTE]
1. I am not sure a booster is what you need – I think you need to decrease the timing between your full IVIg doses. In my mind a booster is for when you are stable – not changing – and want to make sure you stay that way. It doesn’t sound like you are stable yet, but that doesn’t surprise me since you really aren’t getting a whole lot of IVIg.
2. Oh yes! Wow, you’re barely getting enough IVIg to stop a sneeze much less a full blown mind warping attack. Since you don’t have any side effects from the IVIg I see no reason your doctor shouldn’t bump you up to 2g/kg.
3. I think we get that stabbing pain for a variety of reasons, one of the being remyelination, another demyelination, and sometimes I think they just mis-fire and set off a cascade neurological glitch. That being said, I get more of those stabbing pains when I am RE-myelinating than when I am DE-myelinating. I rarely notice demyelinating until the area is numb and unresponsive with the exception of the peroneal nerve on my right leg.Skipping the first two years wherein treatment was spotty… I’ve been on IVIg for the last 10 months. We started at 45g every six weeks and I wrote on the calendar any change in my symptoms, side effects, and when I started feeling the spasms, twitching and nerve pain again. For me it was easy to argue to shorten the time between treatments because IVIg has a dramatic effect on me – on day three I go from being stuck in the chair to doing a little boogie in the kitchen. From there, the maximum amount of IVIg in me, it takes only 15 days before the symptoms start coming back. I would not have asked for more frequent doses if it hadn’t been for Dawn and Kelly encouraging me. I tell my neurologist all the time that it’s the mother’s of children with CIDP who know the most about this disease and who are the best resources on the forum. To convince my doctor I had months of data, symptoms and a very determined husband who hates seeing me go from doing a boogie in the kitchen to falling down instead. For me, the 15 day rule has been hard and fast regardless of the amount of IVIg I am getting… but everyone is different. I’ve always had a strong immune system, never got colds or the flu, so it makes sense to me that my immune system comes flying back after 15 days. Just as an example, my husband and I shared a chicken ceasar salad at a popular restaurant several years ago. He ended up in the hospital with Salmonella, I didn’t even get queasy. I went through three years of Peace Corps without even a sniffle, never got the runs, nothing. So it makes sense to me that it comes back pretty early in the process and I sort of cobbled together all that information to convince my doctor. I think one of Dawn and Kelly’s most famous phrases did the most to convince my husband and doctor – “there shouldn’t be any down time.”
I will say that it took me awhile to get a sense of the rhythm of this disease in me. I am not the kind of person who keeps a diary – I hate it and I don’t want to force myself to list my symptoms daily – I want to ignore them. However, until you get a sense of how this disease is working in you it’s probably a pretty good idea to keep some notes on your symptoms so you can judge whether the return of symptoms is as dramatic after that round, or improved etc. In the beginning I had dramatic changes on day three of treatment, so much so that it was hardly worth writing anything down. Now I am seeing smaller changes so I try to force myself to still keep notes so I can judge improvement (or not.) My home health nurse has also been invaluable in providing me some perspective on how I am doing as he has many other CIDP patients.
Good luck, take care, be happy,
Julie
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July 1, 2008 at 9:38 am
Wow Julie!
Thanks for the kind words. It really does mean so much to me to convey to others what we have discovered through trial and error and learning. If I could help one person avoid mistakes that I have learned from it is a good day.Dawn
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July 1, 2008 at 10:10 am
You know, if I hadn’t already been somewhat familiar with this forum, I would have been surprised by the number of rapid and caring responses to my post. But, I’m not surprised at all. Those types of responses are what I’ve come to expect from the folks here. Thanks to you all. (or, as we say in South Louisiana, “Thanks to y’all)
Apparently, I didn’t do a very good job of explaining my IVIg dosages, so I’ll attempt to clarify.
I weigh 230 pounds, or 104.5 kilograms. 104.5 kilograms multiplied by .4 (400 milligrams) equals 42 grams (rounded). My initial loading dose was 42 grams each day for 5 consecutive days, for a total of 210 grams. My monthly maintenance dose for the next five consecutive months was 42 grams, once a month.
When that didn’t work, the neurologist increased the dosage to 600 milligrams per kilogram. Using the same math, 104.5 kilograms multiplied by .6 gm/kg equals 62 grams (rounded). My loading dose was 62 grams per day for 5 consecutive days, for a total of 310 grams. My monthly maintenance dose is now 62 grams, once a month.
Now, here’s where my understand of the math behind the dosage calculations gets a bit fuzzy. My total loading dose of 310 grams divided by my weight of 104.5 kilograms equals roughly 3 gm/kg over the entire week. Did I get a 3 gm/kg loading dose, or did I get a .6 gm/kg loading dose (daily infusion)?
There doesn’t seem to be any confusion as to the maintenance dose. It’s .6 gm/kg, which appears to be rather small, based on what I’m hearing from all of you.
So, based on your answers so far and on the information I’ll be receiving from you, here’s my plan of attack. I intend to contact my neurologist and ask/suggest/insist that my maintenance dose immediately be increased to ? gm/kg and that the frequency of the doses be increased to once every ? week(s), depending on my reactions to the increased dosage and frequency.
Prior to my reading this form, it would never have occurred to me to start with large doses and to work downward from there. Now, it just seems to be common sense. The method of starting with smaller doses, currently being employed by my neurologist, is time-consuming and ineffective. Look what happened to me. I wasted 6 months at a dosage of 400 mg/kg, which had absolutely no effect. If I continue to follow his prescribed course of treatment, I’ll continue for another three months at a maintenance dose of 600 mg/kg, even though the improvement in my condition only lasts a week…..another three months wasted.
I think I’ll compose a note to him this morning, while I’m feeling very assertive ::smile::.
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July 1, 2008 at 10:59 am
Rod you are right, the first loading dose was 3g/kg based on your weight which you now supplied. Either he initially was VERY assertive in his dosing, or he made a mistake. Standard protocol for a load is 2g/kg, some have gotton as high as 4g/kg. Usually children!!!!
Bottom line, ask for a reload of 2g/kg and maybe follow up in 2 weeks with a maint. dose, you never want to go back to not having the ivig in you. As you have read posts, I am sure you know full life is 42 days for ivig at a loading dose of 2g/kg, but only in perfect conditions, we do not know the rate at which you use up the ivig yet. Going conservative with a maint dose after two weeks for a WHILE, at least a few months should give your immune system time to stabalize and repair. Damage only heals a mm a day, I think I figured that out to be 14.37 inches a year IF NO OTHER DAMAGE OCCURS.
Once you feel stable, then you could go to 3 weeks for a while and then so on. It is better to take the slow path so you can carefully observe suttle changes and make note of them. You will figure out your schedule, it just takes time.
Dawn Kevies mom -
July 1, 2008 at 2:08 pm
Yeah…what Dawn said.
I’m SO totally confused by all that math.
And Julie, thanks for the kind words. I’m glad you are now on the right treatment path.
Kelly
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July 1, 2008 at 7:43 pm
Rod, I agree with Kelly about Dawn-you sure do know your math. As I am new, thank you Julie for telling your history, because I hadn’t gotten to those words yet by Dawn and Kelly, but they are great words. I wrote both down and am going to share them with my neuro doc, the first one being no down time- he has told me in the past that the best I could get would be 3 weeks of feeling less fatigued-don’t think I ever got to the boogie in the kitchen relief though, but has me on a 4 week main. dose-why not every 3 weeks? Third question for him. Dawn said one important thing in addition to all the math, that I know to be true-the added stresses and complications-sorry Dawn, know that isn’t a quote, but they really do deplete my ivig levels-have really felt that over the years. And one thing about starting with a loading dose and then maintaining Rod is that you can always increase/ decrease dose and/or frequency. I hope I am not insulting any physicians here; that is not my intent; sometimes I feel my neuro groups me in with all his other cidp paients with standard protocol orders/expected outcomes and I break free and tell him what is working and what is not working. We all really are different, and we must advocate for ourselves, I am the only one that knows my body the best. Not all ivig brands have worked for me either, so know your dosages and which brand, and then write down everything else to take to your doctor. Hope this helps. Dawn-I am going to PM you and have you double check my weight-proper dose. Not that I am doubting my doctor, maybe I am a little, but I just WANT TO FEEL BETTER. Hang in there Rod. Emma
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July 1, 2008 at 9:40 pm
Guys,
You are making me blush, and that is hard because I am really tan, I have moved to the African American colors for my Clinique foundation! Anyway Emma, I am just a mom, so please take what I say with a grain of salt. I am just going by the standard protocol that the brilliant doctors post on the ninds site that is public on the computers. 2g/kg., loading dose and 1g/kg for maint. dose. So Emma, the #’s you pm’d me would indicate that your four daily doses are equivalent to a little more than a loading dose, not a maint. dose. So that is good! You just have to decide if every 3 or 4 or 2 weeks works better. TRIAL AND ERROR!!!
Math….. 2.2lbs is equivalent to 1kg. so your total weight / by 2.2lbs = how many kg you weigh. To get the dosage, you multiply it by 2 for 2g/kg. So…. 100lbs total weight would be….. 100/2.2=45 One’s weight in kgrams. For a loading dose of 2g/kg you would multiply 45×2 (for 2g) which is 90. So if you weighed 100lbs, a loading dose of 2g/kg would be 90g total over four or five days. Please remember, I am just a mom going by the mathematical formula, so take what I say with a grain of salt. Good Luck!!!!
Dawn -
July 2, 2008 at 5:01 am
Dawn and Kelly,
Well I hope I haven’t made you both paranoid but the truth is there is nothing like a mother’s instinct to protect her children. You all do the research I wouldn’t bother to do, you challenge the doctor when I would just accept what he says, and you constantly strive to make life better for your children because they can’t. You all have the DRIVE to figure this out where as me… I’m usually too tired to comprehend what I am reading and I’m pretty adaptable so I am not constantly seeking new medications or treatments. Things like the dosage formula used to come easily to me – the more difficult it was the more I enjoyed the challenge and honestly I think I regret the loss of my ability to think more than the numbness and pain. I’ve come to rely on people that think more clearly than me – like you two – and so I, like many others here, am grateful for your research, your ability to dumb it down to my level, and your willingness to share and help here on the forum. I feel like you’ve adopted the whole lot of us. :pOK, I’ve probably embarrased you even more now…
Rod, one of the things it took me awhile to realize is that my doctor has more time and patience than I do. When we first started the IVIg treatment he was willing to keep it spaced 6 weeks apart though he said it would take longer to see improvement. If I had stayed on his schedule I’m not sure I would have ever gotten to the point I am now – the demylination was keeping up with the remyelination most months and some months was winning and I went downhill. I understand your frustration with not getting the right treatment for so long and the damage you incurred during that time – I really do understand and I sympathize – but I gotta say this: DON’T LOOK BACK! It serves no purpose to regret what did not happen and having done that myself I can say that all it did was end up making me feel worse due to the stress of my daily litany “I would be so much better if we’d started this six months ago.” Just don’t look back – look forward and come up with your plan. I’m not going to get into the math (see paragraph above) but I’m sure you’ll figure out what dosage you need and how often. But I do think you writing down what you want from the doc is a good idea. If I have a lot of information to convey I will frequently type it up so that he can pay attention to what I am saying and not have to make sketchy little notes that will probably be misinterpreted at some later date. Unfortunately doctors are human too and sometimes don’t hear things the way you say them – sometimes the phrase “I’d like to” gets heard as “I can” and so on, so writing things down can be helpful from several aspects.
OK, my eyes are toast so I gotta cut my usual missive short. You guys are the greatest – hang in there Rod, you’ve got a new full time job – you are your own patient advocate!
Julie
P.S. Happy Wednesday!
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July 2, 2008 at 8:19 am
Hi Rod,
I’m not going to comment on the IVIG dosing, as it didn’t work for me.
But I wanted to mention to you that there is a drug called Neurontin, that works specifically on Neuropathy pain.
Perhaps you can ask your doctor for it, since you have the pain in your legs.
KEDASO -
July 2, 2008 at 11:02 am
Hi Rod,
I think these guys have the IVIG dosing figured out for you. I’ll tell you briefly my schedule and what we are doing. I had a loading dose back in November and had a full 2 hours of greatly improved walking. I thought it was a miracle after all of this time and then it went away. In December we did the 4 days again, but added Solumedrol 125mg IV each day. Wow, I had a couple of weeks of improvement, and in fact some of that improvement is still with me. January was messed up with insurance and I DECLINED. I added significant arm involvement, dry eyes from autonomic involvement, etc. February 4 more days and improvement. In March we switched to 2 days every other week with Solumedrol. Did OK for a while and then kept declining after a couple of days. I am now on every week, one day of 40 Grams with Solumedrol. Dr. Gareth Parry recommends, (thanks Kiwi Chick) 500 mg to 1000 mg Solumedrol and I will be asking my neuro about that. I also keep a running daily record now of my symptoms. Very helpful to see the improvement after IVIG and the decline days later. Since I have improvement, I want to believe there is hope that this will go away and you should have hope too, since you had a benefit. My neuro is great and we try things for a bit and it is trial and error. Everyone is different! I also added Cellcept in March to suppress the immune system. So you still have some options to check out! Good luck and glad you found us! Gabrielle
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July 2, 2008 at 2:20 pm
Amen Julie. Dawn, I made a copy of your dosage for me and called my neuro today and have an appt. with my neuro on Monday to review everything and I have a page of questions, thanks to you guys. If I don’t get what I want then I will switch docs. We have an 8 year history and he is listening to me the last couple of months, so I will see how Mon. goes.
Rod, not to confuse you, but here are my cidp med doses and how I am doing since my last ivig. I take Neurontin 1800mg. 3 times a day and Imuran 50mg. twice a day. I had 4 days of gammagard 45mg. daily last Thurs-Sun. Premeded with Darvocet100-1 and Benadryl 25mg one hour before my ivig, and you can use Tylenol ES or Dawn told me for Kevie she uses 2 Tylenol. First, I have had ivig for 8 years but this is the first year I ever was told to premed. Second, after this week, I am convinced that the brand of ivig is vital-my home ivig nurse said that as a home infusion co. they have much better access to the ivig than the hospital, chiefly because they do a lot more infusions of it. And Dawn helped me with my dose. It does vary with weight, but it gives me info. to share with my neuro. Thanks so much Dawn. I agree with Julie on two really great things-Dawn and Kelly, you are great advocates and knowledgable way more than us adults, because you are moms, and I am struggling with my cidp and stress in my life-working on that too. And Julie said it best-Don’t look back-look forward. I am comparing this month with last month only to show my neuro what is BETTER!!! I can’t change yesterday, it is gone and I can’t get it back—I don’t want it back!! I am just taking care of today and writing down how I am doing and not worrying about tomorrow, it will come soon enough, but I am preparing questions for Mon with my neuro, and now back to my ivig reults last weekend, Rod and everyone: day #1, preded with 1 Darvocet and 1 Benadryl and had 45gm gammagard( 450ml.) over two hours-developed headache and took Motrin 800mg. Went to bed. day#2-asked nurse to slow rate of ivig down and she would only slow the ivig over 3 hours, same premed and developed awlful headache during the infusion. Took Motrin and later took another Benadryl-went to bed. Day#3-nurse had me double my premeds, ivig infused over 3 hours 15. minutes , took a Motrin mid way during the infusion-NO headache, felt great, NO bed after, went out to dinner, still NO headache. Day#4, NO headache when I work up, stayed with the same premed and infusion rate and just had a slight headache which the Motrin relieved..and Mo-thru today have had 0 headaches, better energy(overdid one day so now really pacing my self better, balance is better and even bent over to get earring off floor and didn’t fall over. Dawn, like I said, helped me with the math and Mon when I see the neuro I will take this all with me. I think getting the ivig at home has been important too, but we are still working on the copay issues. Hate to take it down to money, but the ins. co. determines how much they pay and how often they will pay for me to get it-now have to submit my budget to the home infusion co. and see if they can waive some of the copay-hoping this works; otherwise I will have to return to the hospital for the ivig and Mon with the neuro, am going the ask him to order the ivig infusion rate be slowed down to 4 or 5 hours and then see how that goes-and maybe get it every 3 weeks…..good luck with your schedule and all Rod-the documentation of all you feel is so important-sort of a map for your doc to follow then go from there. And the other change I made was drinking LOTS of water-not even the hospital told me that. YOU GUYS DID.:) For the first time in 8 years I feel really encouraged. Thanks to all of you and Rod hope my long story helps give you another idea what we all do and then you can figure out what you need to do. Emma
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July 3, 2008 at 8:42 pm
I composed a long post today and I forgot to copy it to the clipboard before I hit submit. You guessed it…..it went to electronic heaven. You’d think that someone who’s been in the computer business for more than 35 years would know better.
I’ll rewrite it tomorrow, if I’m not worn out after solving most of the world’s problems today. Happy 4th of July to all of you USA folks. We live in a great country.
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July 4, 2008 at 12:24 am
Hi you guys,
Sorry, but I was a little off in my math, the formula is 2.2lbs, not 2.53, I corrected the math and the post is now correct. Sorry for the confusion.
Dawn
Thanks you know who!! -
July 4, 2008 at 12:42 am
Rod, the .6 you were refering to is based on daily infusion. Typically that is .4, pretty sure. He is giving you 3g/kg for a load which is awesome, but he is not keeping enough in you for the maint. Either he has to go closer at 3 weeks at 1g/ kg or 2 weeks at 1g/kg. It will take some trial and error to see what you need. Some on the sight, my son included get the 2g/kg AS their maint dose monthly.
Good luck, Dawn Kevies mom -
July 5, 2008 at 5:53 pm
Many thanks to Dawn, Julie, Kelly, Emma, KEDASO, and Gabrielle for your input and your suggestions. Sometimes, little things that you mention, which may not seem significant to you, turn out to be very significant. Gabrielle, your mention of Solumedrol caused me to remember that I’ve been getting 125 mg of Solumedrol with each infusion on my second round of loading/maintenance doses. The Solumedrol itself or the combination of the Solumedrol/IVIg may have been responsible for my improved condition after my last maintenance dose.
Immediately after the post where I said I was going to contact my neurologist about increasing the dosage and/or the frequency of my treatments, I did just that. I faxed a letter to him, providing the details of all my treatments, with a brief narrative about the improvement. In the letter I stated that our communications need to be on a timely, ongoing basis and that I believe that my dosage and frequency of treatments both need to be increased.
You can imagine my surprise when I received a phone call from him, less than two hours after I faxed the letter. He was elated to hear about my improvement after the last maintenance dose and he agreed with me that the dosage and frequency of treatments need to be increased. He told me that he doesn’t have much experience with higher doses of IVIg and he suggested that he turn me over to Dr. Appel for primary treatment, since immunodeficiency diseases are Dr. Appel’s specialty. He said that he would be happy to have me back as a patient if and when I felt the time was right for me to return.
I contacted Dr. Appel’s office and was told that Dr. Appel was out of the country and would be returning on Monday. I then emailed Dr. Appel a copy of the letter from my neurologist and requested that we get started immediately. I’m waiting to hear back from him.
My concern with having Dr. Appel as a primary physician is that he’s even less accessible than my neurologist had been. He’s chair of the Methodist Neurological Institute and he doesn’t even have an office. To see him for 15 minutes, I have to check into Methodist as an outpatient. In my next conversation with him, I’m going to express my concerns about my perception of his inaccessibility and tell him that, if necessary, I’ll deal with someone less experienced and more accessible. I truly believe that my neurologist in Baton Rouge is sending me to Dr. Appel because he feels that’s the best thing for me. However, I also truly believe that he would be willing to work with me on finding the right combination of dosages and drugs and that he’ll allow me to do the research and determine the proper courses of treatment, subject to his approval.
I don’t mean to sound militant, but I figured out many years ago that physicians are not infallible and that I know more about my own body than they’ll ever know. When I meet an arrogant physician (and I’ve met a few), I let him know immediately that he suggests….I decide. His role is to diagnose and to recommend treatment(s). It’s my body, so the final decision on the recommended treatment(s) will be made by me. I say him instead of him/her because I’ve never met an arrogant female physician. Hmmm….perhaps there’s something there to explore.
When I preview my posts, I sometimes worry that they’ll come across as being all about me. I know that there are many folks posting on this forum whose conditions are much worse than mine, and I’m concerned about my seeming to be self-centered. But, I don’t have first-hand knowledge about anyone else’s condition…I only know about mine. And, I believe, as I stated earlier in this post, that every little snippet of information could potentially be valuable to someone else. That’s why I go into great detail about history, treatments, dosages, results, etc. I sincerely hope I’m on the right track.
Thanks again for your personal stories and your suggestions. My next maintenance dose is the week after next, which is probably long before I’ll get to see Dr. Appel. I’m going to see if I can get my neurologist to boost the maintenance dose from .6 gm/kg to 1 gm/kg. Hopefully, I’ll soon have something positive to report.
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July 5, 2008 at 6:17 pm
Sounds like you are making some progress and very nicely too since your neuro called you back! I just wanted to say, I don’t think your posts are “all about you” etc or self centered. Every single one of us has been in the same shoes, and I still am learning as things change for me. So ask away, and my hope is your neuro, whichever one you see, will allow you to experiment a little based on what other’s here have had success with. EVERYONE is different! Take care, Gabrielle
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July 6, 2008 at 10:59 pm
Rod, I think you are doing great with persisting to find help for your problems and answers to your questions. Could it possibly work out that your first neuro is sending you to other neuros to verify what he is doing is appropriate for you. Perhaps after you see Dr. A and he dx and treats you or sends you to some one else who will do it, that they will give their opinions of what would be best for you and the right doses and your first neuro can do it that way and get you on track and doing better and you could follow the other neuros on a consultant basis? Wishing you the very best. Talk to us anytime about anything, Rod,ok? Emma
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July 8, 2008 at 9:10 pm
I’m gaining new respect for doctors. Dr. Appel called this morning, EARLY. He told me that he had read everything I sent him, and that he’d be willing to assume primary responsibility for my treatment, but only if I’d have my infusions done in Houston, where he could monitor me. He said he didn’t want to increase my dosage any higher than .6 gm/kg at this time, but he wanted to increase the frequency of my IVIg from once every four weeks to once every three weeks. He also said that he wants me to receive .6 gm/kg per day on two consecutive days every three weeks. If my math genes are functioning properly, that’s 1.2 gm/kg every three weeks instead of .6 gm/kg every four weeks. Hmmm…..sounds like an increase to me. I asked if the Solumedrol could have been responsible for my improvement. He said that was a possibility and that we’ll just have to experiment with dosages, combinations, and frequencies until we find the proper course of treatment.
I’ve been getting Carimune. I wonder what brand Methodist Hospital uses?
His secretary is obtaining clearance from my insurance company, so we can begin immediately.
I’m a happy camper!
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July 8, 2008 at 9:25 pm
Wow, well that is awesome news! I honestly think if you have a good physician, and they see you have done your research and aren’t asking for something out of line, they will listen to you. That is obviously not always the case as many, many on this board will tell you. Well keep us posted and let us know how things go! Gabrielle
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July 8, 2008 at 10:14 pm
Great job,
It seems as though the doc is reasonable and listens to your reasoning. Now be very observant of your symptoms to see if every two weeks would be even more beneficial or if the present dosing is doable. Good news!
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July 8, 2008 at 10:42 pm
Wow Rod you have come along ways-good for you. Your physician or nurse can see if the same meds are avaiable where you going. Sure sounds like you are on the right tract.Do what works for you best. Take care. Emma
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