Jojo 87

You might want to bring the IVIG up with your doctor again. As far as Lycra is concerned after being on it most people adjust and are not so tired. I am taking gabapentin and was very tired in the beginning. Hang in there!;)

Rhonda

sorry no info

I too went from a diagnosis of GBS to CIDP. In my case it was 7 months in that the diag. was changed.
The Neuro Muscular specialist said it was probably CIDP all along, it just “presented” itself as GBS at the beginning.
My first 5 sessions of IVIG helped me return to what we thought was 100%, then 6 weeks later it hit again. This is when we began looking for a neuro muscular specialist.
I have been on IVIG every 5 weeks for a year now, with no end in sight. Add in some Prednisone and I feel pretty normal between treatments, but as a treatment time nears I quickly digress and must get 4-5 straight days of IVIG.
I have reduced prednisone, but can’t get past 5 weeks before requiring IVIG.

– Good luck, hope you can regain some strength with IVIG as I did.

Itis very common to “graduate” to cidp. Kevin was dx w/ gbs and 5 months later ivig again, he was totally down again, still suspected gbs, then 3 months later weak again, finally cidp. IVIG is usually the first course of treatment, a loading dose of 2g/kg. over 5 days. you will have to determine the legnth of time between the treatments through trial and error. Some people as mentioned above also get prednisone. others actually do worse with the steroids. Try to pm Tim, TPJR (sorry Tim, I botched the acronyms) I think he had a not so good experience w/ steroids and has been getting much better w/ivig. When getting ivig, it is important to have your treatments spaced so that you do not have any symptoms between them, if you do, a process has begun and the healing has to start over. Also, it has been mentioned in sobe abstracts that each time a process starts, more/new damage happens and you might not repair that area again. now that you have a dx, you can start ivig for a few rounds and see what it does for you. It may be your miracle drug or you may have to compine with other therapies. Good luck.
Dawn Kevies mom

Jojo, if you’ve not had IVIG before, please be aware that some people will have allergic reactions to it and need to take additional steps. When our daughter had IVIG the first time she had a strong allergic reaction and the doctor sent us home without trying anything else. We found information on this site about pretreating with benadryl and/or solumedral and were able to get her readmitted and treated successfully.

Our daughter still suffers from aseptic meningitis if we do the full 2g/kg that seems to be commonly used, but we’ve found that 1g/kg administered over two days doesn’t give her the headaches or nausea that she was experiencing and she can go back to school the next day. We also have to monitor her infusion rate and adjust it up and down to keep her blood pressure stable (especially when she’s sleeping and blood pressure normally drops anyway), which is new this past year.

If you have any problems, I encourage you to search the site for advise and protocols that others have used successfully. Best of luck.

Jojo,
Dx with GBS in 1985 and took about 18 months to get back to normal (my doctor at the time said there was no treatment available, so mother nature did it all).
Then in summer of 1996 began losing my balance and was finally Dx’d with CIDP in December of ’96. Sural nerve biopsy and EMG. First line of treatment was IVIG, then oral prednisone and plasma exchange. My CIDP is relapsing/progressive and over the years they have tried many treatments. PE and IV prednisone have worked the best for me, but past 6 months have been on a slow decline in strenght and mobility, so we (I) opted to try Gamunex IVIG since it is processed with glycene rather than sucrose.
My neuro said that we had already tried IVIG without success, all IVIG products are the same, and did not want to try Gamunex. I had to explain the difference and show him the studies before he would prescribe. Started it in late December with 200 gram loading dose and 100 gram maintainance dose every three weeks the day after PE. I now have PE and 500 mg IV solumedrol every third Thursday and Gamunex the following day. Have seen positive results and it now appears that I am having some nerve regeneration.
I got a second neuro opinion in November from a doctor in IL who has been following several small clinical studies on Gamunex vs other IVIG products and he says the early results show better response to Gamunex. He encouraged me to work with my local doctor to get it started.
May be wishful thinking on my part, but I know that I am stonger, have better balance and much more stamina than I had three months ago.
Lots of good information on this site, but as most say, the disease affects each of us differently and we tend to respond to the various treatments differently. Do your research and talk to your doctor. If one treatment isn’t helping, ask to try something else. Keep your spirits up and stay after it.
Fred

sorry no info

Dawn Kevies Mom,

I went to see Dr. Farouk Khan, head of neurology at Freeport Memorial Hospital in Freport IL. My son knows Dr. Kahn and when the Foundation sent the letter announcing the approval of Gamunex for CIDP, I asked my son to to see if Dr. Khan knew anything about the drug, as my longtime neuro knew nothing about it and brushed it off stating that all IVIG products are the same.
Not so said Dr. Khan, as for the FDA to approve a drug Brand specific for a specific disease, the drug must have unique charastics. Gamunex is processed with Glycene, an natural amion acid, whereas other IVIG products are processed with sucrose. He says this process lessens potential side effects and is showing better results in CIDP.
After my son told D. Khan about my long battle with CIDP, he agreed to see me while I was in Chicago for the symposium. He examined me and found reflexes that I haven’t seen in years and felt Gamunex may help me. He gave me a suggested treatment plan and told me how to talk to my neuro to get him to go along with the plan.
I finally got my local doctor to authorize Gamunex in late December. I now get PE and IV solumedrol the day prior to Gamunex. Currently on an every three week schedule. I have seen definite improvement in motor skills, balance , strength and endurance after only four infusions. I can now walk without a cane on level surfaces and the hip waddle I had in nearly gone, so it is definitely helping me.
Dr. Khan and I e-mail every 3-4 weeks so he can follow my progress and he keeps me posted on the Gamunex studies he is following. He say the results thus far are showing Gamunex is producing better and longer lasting results when compared to other IVIG products. Over the years I had been on IVIG multiple times with varying dosages, but it never helped. So far Gamunex is showing results for me.
There were some minor side effects with the loading dose and the first maintenance dose. Body rash and itching, and a runny nose for a few days. We slowed the infusion rate to 250 on the last two maintenance doses and there have been no side effects. The initial side effects were stopped right away with 20 mg of oral prednisone for 2-3 days.
Gamunex is manufactured by Talecris Biotherapeutics located in NC. Goolge the name and their web site will give you a lot of information. The doctor must prescribe Brand Only Required or you will get the other IVIG product. Gamunex is used to improve neuromuscular disability and impairment and as a maintenance therapy to prevent relapses.
Sorry this is so long, but I hope it helps. Good luck. Let me know if I can answer any more questions about my Gamunex experience, as I know we all respond differently to the various treatments. I can tell you that this is the most exciting and upbeat therapy I have had in years, and the most hope for something to stop the progression.
Fred

JoJo87 – I would encourage you to at least try the IVIG. The longer you wait for treatment the harder it will be to improve.

Lyrica is just for the pain. It doesn’t stop the attack on your nerves. IVIG should do that.

Kelly

Then I think it’s time to find a new dr.

What is the point in having the surgery if the attack is just going to happen again?

You need an immuno modulator to help control the bad anti-bodies. Once they are controlled then your myelin & nerves can begin to heal. That’s when you need to have the surgery. To have the surgery & no treatment it’s just absurd to me. The dr needs to treat the disease NOT the symptoms!

I’m sorry but dr’s frustrate me sometimes.

Call the foundation & see if they can give you the names of any dr’s in your area who know about CIDP.

Kelly

Mine started out as gbs 11/07 within a few months I was having numbness/tingling/fatigue/weakness/ etc so was treated with ivig.. Doctors felt I now have cidp and for the last year been treated with ivig and Methylprednisilone 500 mg… Just saw doctor Parry and he says I don’t need any more ivig and we are weening off the pulse steroids so that by august I should be off them… My cidp seems to be in remission, and I have been doing great! Good Luck Jo Jo on your recovery.. It just takes a long time to get there….. Dean