Stop or Continue with IVIG/Prednesone?

Nancy:
I am seeing my neurologist on April 8th, and there is a chance he may take me off the IVIG. I have been on 60g of Gamunex every two weeks for the last year. My neurologist’s philosophy is to discontinue IVIG once a patient has plateaued in terms of response to the IVIG, and see if the patient’s condition remains stabilized without the IG. If the patient relapses, IVIG is reinstated. I am a little leery of going off the IVIG, but if I can maintain without it, that would be great, especially since my veins are scarring from the treatments. I know IVIG is very expensive, and there are times I feel guilty that my treatment is costing my wife’s health insurance so much, but none of us asked for this, and that expensive treatment for many of us is the difference between functioning and not functioning — and for some is literally the difference between life and death. So don’t even thing about reducing your IVIG without a very good reason and in consultation with your physician. IVIG is precious — but not nearly as precious as you.

Hi Nancy,

Like you, I began IVIG last summer shortly after being diagnosed. My symptoms are mostly sensory, but have had some balance problems as well.. I developed some eye problems in December so the Neuro decided to take me off of it to see if my eyes improved. The eye problem resolved and the eye doctor decided that the IVIG probably did not cause it, but did not offer a reason why it (optic nerve enlargement and retinal hemmorhage) happened. Went to back my Neuro for regular appointment a week ago and found that I had really started to decline in muscle strength and nerve conduction. It happened so slowly that I did not realize it. He suggested that I restart IVIG 100 G every four weeks. I do not take any other meds for neurological problems. Three days after receiving the iVIG I am feeling better. I was doubting the need for IVIG, but now I have experienced the difference. Unfortunately, the stuff is expensive, but I am lucky to have decent insurance which covers most of the cost.

i would love to see how my body would react to being off of IVIG but i would be nervous.
what if i decline faster than me getting it again? i am feeling stronger and stronger but what if that’s only because of the treatment? i guess the only way to find out is to cut back but again i would be nervous.

Hi Nancy.
I went off of ivig for 2 months and did only the steroid infusion. I went down hill quickly. However, as you well know, each individual reacts differently to all this stuff. That’s what happened to me, for what its worth! Paul

Have been receiving an IVIG/Solumedrol infusion on a monthly since May, 2010. In addition I take 2000 mg of Cellcept daily and have been on that for about six months.

Following my January infusion we decided to skip February to see how I was doing on just the Cellcept. I am now wondering about pushing the envelope even a little further and skipping March as well.

Before I started treatment I was in very severe shape. Went from hiking trails in Montana to wheelchair bound in a period of six months or less. Finally found a doc at Mayo AZ who diagnosed me with CIS(sensory)DP ~ meaning apparently it is just my sensory nerves that are affected by this thing. ??? I don’t know…

I am still experiencing surface numbness on top and bottom of feet and palms of hands, but I can walk, have retained my strength and balance, and can hand coordination and strength is okay. I am getting a “little” more numb though day by day. It’s hard to judge. At my worst, I couldn’t stand up, walk, had no strength in, or control of my hands, etc., etc. Sad to say you probably all know the drill.

My quandry is I hate to use this precious resource (IVIG) if I don’t have to, but on the other hand I don’t want to backslide either.

Has anyone successfully gone off infusions and if so for how long and what was the experience like? Will appreciate any thoughts you may feel comfortable sharing with me.

Thank you, Nancy[/QUOTE]

we have tried twice unsuccessfully. first time was loads once a month for a year then the second year tapered by 10 grams reduction each month till we were at 0. with in 6 months we were starting to feel week, did a ncv/emg to confirm (took one right before we completed the year of ivig loads) and there was an increase of blocks and slowed velocities. Back to loads, for 3 times and then reduced by 10 grams each month until we arrived at maint dose (1g/kg) and stayed there which is where we are now. There has been some change, went to doc last week, waiting 6 more weeks to see if it is just fatigue from illness’s we have had or another relapse. will do another ncv/emg in 6 weeks to compare to last to see if we need loads again. we do seem to follow a pattern of fatigue/weakness in the months of oct to april, virus’s or cidp relapse, who knows

Just a mention, if you are feeling fatigue, weakness etc., the demylienation process, or “backslide ” has started long before the first symptoms are apparent. In a perfect world it is better to stay in front of the illness. Every relapse brings you back to square one regarding healing and you restart the process from your toes up, I think it is a mm a day or something like that. I once figured out on a previous post how much you could heal in a year if you had no relapse, it wasn’t much. Not to mention, each relapse might not allow you to fully recover the damage the occurs every susequent time. For example, the nerves don’t heal in a straight line, they might skip a node and reconnect somewhere else, therefore not healing properly. Much more involved, but that is a basic explanation. good luck, I am glad you are in the acceptance phase of this disease, it makes it much easier to forge forward!

Perhaps my experience can help with your decision. After diagnosis in September, 2007, IVIG loading dose at the rate of 2gm/km of body weight spread over 5 consecutive days, and a maintenance dose at the rate of 1 gm/km of body weight at three week intervals, and subsequent IVIG treatment for 17 months (October 2007-February 2009), my doctor decided to wean me off of IVIG. At one point, we had discussed perhaps replacing IVIG with Cellcept, but my improvement was such that the cellcept idea was dropped. In February, 2009, we extended the treatment interval to 4 weeks, and then started steady reductions in the amount of IVIG. I had my final dose of IVIG in July, 2009. By that point in time, I had regained 100% of motor nerve function and full strength, and numbness and tingling in my hands and feet had reduced to around 20% of what it had been. Most of the improvement had taken place in the first 6 months of treatment. Subsequent to the end of the IVIG infusions, I’ve led a fully normal life without major problems. My only maintenance medicine has been gabapentin. Since the end of IVIG treatment, I have noticed a very, very gradual decline in residual problems with sensory nerves to the point that many days I have zero reminders at all that I ever had CIDP. My doctor expects the residuals to eventually resolve as well, given progress to date. Thank God, I have seen zero regression. Just for the record, my doctor is one of the leading neurologists and researchers at Johns Hopkins Hospital. As many others have emphasized, everyone is different. Everyone reacts differently to every medicine or treatment, even stuff you buy over the counter. I guess my point is that to date, it would appear that weaning off of IVIG worked for me. However, I would also make sure that I did it in full concert with my doctor rather than try to apply a layman’s knowledge and/or understanding to when or how often you should receive treatment. I hope this helps.

In my personal opinion I would say continue with your treatment until your neurological evaluations show no more improvement and then back off slowly… we thought my daughter was finished improving. As the only thing left to recover were the reflexes and some of the sensory nerves in her feet and fingers. (your toes and your finger tips will be the very last to recover, if they do) your nerves regenerate at 1″ a week, it starts at your chore and works its way to the tips, is what we were told. Her last evaluation we got a very faint reflex in her foot, this gave us the hope that the medicine is still doing someting, we are still backing off instead of every 3 weeks, we had a schedule like this and I was diligent to the day.

90 mg over 2 days at 3 weeks apart (that was the norm for 2 years. )
then we went 90 mg over 2 days at 4 weeks apart for two sessions,
then we went 90 mg over 2 days at 5 weeks apart for two sessions
then 6, then 7, we are about to go to our second round at 8… once we have the second round of eight, we are going to 45 mg at 8 weeks, for two sessions. then we are going to college and we will stop and “see what happens”””

I hope this tidbit of information helps you
(we are seen at Childrens Hospital in Boston)