New treatment in Arizona?
May 25, 2009 at 8:40 pm
Last week I was in Phoenix for my mother’s 92 birthday. I went with her to her neurologist appointment in Mesa. As the doctor left the room he asked about my tremor and I replied CIDP. Not only did he immediately recognise the initials but he said in a happy voice, “There’s a new treatment for CIDP!”
Of course since my mother is his patient and not I, the neurologist could not tell me what the “new” treatment is.
Ack!!! Does anybody in Arizona know of a new treatment? Maybe something from the Mayo Clinic?
AnonymousMay 27, 2009 at 11:03 pm
Absolutely true Mike IVIG isn’t new, but the Gamunex study legitimized the administration of IVIG for those with CIDP when the FDA approved it in 2008.
This made it easier for neurologists to prescribe it for CIDP without jumping through so many criterian hoops.
May 28, 2009 at 4:41 pm
I have a routine check up on Tuesday with my neurologist here in Alabama.
The good news is that my only IVIG was Gammunex. It did work wonderfully although slowly.
But that means the bad news is that there is probably not a new magic bullet out there for CIDP.
Sigh. I’ll ask anyway.
May 28, 2009 at 5:11 pm
Hello to all,
I don’t post much, but thought it would be timely to share my current experience with Gamunex.
Gammunex is processed using glycine, rather than sucrose as is used in all other IVIG products. Gammunex was approved for treating CIDP specificially, and based on the research I have done, there must be some difference in a medication to be approved by the FDA for a specific disease or illness, in this case CIDP.
I have had cidp since 1996 and have been treated many times with other IVIG products over the years with no results. After talking with doctors at the Chicago symposium in November, patient advocates for Gamunex, and an independent neuro in Illinois, I opted to do some detailed research on my own and reviewed the studies conducted on Gamunex and found enough reason to give it a try. My goal was to stop the progression of the disease.
I began treatment with a 200 gram infusion 12-24-08 and have had follow-up infusions of 100 grams every three weeks since. I also get plasma exchanges with 500 mg IV solumedrol the day before the Gamunex infusions. It was a difficult situation with my neuro to get him to agree to “brand specific”, as his response was that all “IVIG’s are the same” and they did not help me in the past. After explaining the difference in processing and showing him the FDA approval, he looked it up on the internet and agreed that there was a difference and wrote the “brand specifice” orders. The results thus far have been amasing for me.
Things I could not physically do in December, I can now do. Such as walk without a cane, drive a car for 4-6 hours with only short rest stops. Do yard work without collapsing from fatigue, work on my antique cars for 3-4 hours at a time nearly every day. My reliance on my electric scooter is very minimal now as I can walk much longer distances and stand for much longer periods. Endurance is also significantly improved.
At last weeks visit, my neuro even noticed a much improved gait in my walk. He now feels the change has been so significant that in three months if I maintain or show additional improvement, he plans to stop plasma exchange and solumedrol infussions and try to maintain me with Gamunex. There are also signs of some nerve regeneration.
Don’t know if Gamunex is the “new ” treatment the AZ doctor was talking about, but is was new to my neuro and it is working for me. My progression has stopped and improvement is with me every day now.
As we all know, everyone responds differently to various treatments, so I don’t want to give anyone false hope, but speaking as one who has tried everything else out there, including multiple MS drugs, for the first time in a good while now, I see a ray of light. My hope is that this information may help someone else. Best to all.
May 30, 2009 at 8:27 pm
Wow! What a great story. Thanks for writing.
After 10 years of being treated solely with prednisone I was distressed to have to try IVIG (not a needle lover!). Then, the infusion was slow to help and I was discouraged.
However, it has been almost a year and I am still capable of most daily activities that don’t require fine motor control. My doctor was brand specific on his IVIG order and the insurance company tried a little fussy paperwork to get him to change. I sure am glad my neurologist deserves the pedestal I have always put him on.
Thanks for letting us know about your research and your good results.
June 3, 2009 at 1:38 am
I had my check up today. My neurologist said there was not a new treatment for CIDP.
Sigh. After ten years I am soooo done with this thing. I got really excited at the prospect of a new magic bullet for CIDP.
AnonymousJune 3, 2009 at 7:37 am
I know that really put you down hearing that! I remember when Stem Cell Research came out and was so excited to hear we had a possible cure for many diseases. Beginning stage stem cell research was not all together back then and a few of my friends traveled overseas to get the transplant. But theirs failed. As a result two of them died!
Everytime I hear of a new drug for Lupus, I get all excited and then get disappointed again! 🙁 All we can do right now Flossie is deal with what we have and try to except it. Easier said than done though! But we have one thing that nobody can take away. HOPE! Lets keep hoping! Maybe one day we won’t see anymore diseases like we have and a cure!
I have been dealing with my disease 20 years plus! I have lasted this long maybe I will get lucky and last another 20 years. But just hope I have some quality of life. I feel for you! Really do! Just wished we all coud be 100 percent well again. Sending you a Cyber Hug!
June 3, 2009 at 10:31 am
Thanks for your sympathy. I was feeling unusually down even though I am actually doing very well (and taking antidepressants). My neurologist was thrilled that I was able to take a 3 miles (and 3 hours) hike in Muir Woods while we were on vacation in California last month.
Yesterday for the first time my doctor came right out and said I will probably never get off the prednisone. I had always hoped I could slowly reduce the steroids to nothing. However this year he is not even going to attempt to get me below 13 mg every other day.
I have excellent day time pain control with Lyrica. Last night for the first time I tried Lidoderm (lidocaine) patches on my feet for that nasty burning sensation. It might only be the placebo effect of such an expensive medication but I was mostly comfortable last night. My neurologist is wonderful about treating pain.
It is good to know that there is finally an “on label” treatment for CIDP. Thanks to you and Fred for telling me about the gammunex study.
AnonymousJune 3, 2009 at 4:01 pm
Hi Flossie! I too have been a long term prednisone user even though it is a good drug and saves lives the darn sides effects really are bad in later years if taken for long time. But I seem to be one also that will never see that day of quiting them either. LOL! I would really love to be off that drug but nothing else seems to help me!
Hmmm! I have some Lidoderm patches here that they gave me for my spine injury but they never helped much! Never thought about trying them on my feet and hands! Might just try and see what happens! 😀 Thanks for the tip!
If it worls on these burning feet! I will be in hog heaven tonight! 😀 I got 5 big boxes of those patches too! Anything is worth trying right now! Hugs!
I hope you feel better soon!
June 4, 2009 at 8:29 am
My doctor said to cut the big Lidoderm patches into quarters.
I used them again last night on the soles of my feet and I honestly think it helped me get comfortable enough to sleep well. The discomfort is still there but greatly diminished. I am going on vacation tomorrow and taking them with me so I can over indulge in sight seeing.
I hope they work for you.
AnonymousJune 4, 2009 at 3:33 pm
Thanks for the Info Fred! I see my doctor next Monday and am going to start raising holy cow with them if I don’t see them placing me on IVIG’s! This prednisone stuff is for the birds! And I plan on telling them so! Husband is going in with me too! LOL! Hugs
June 5, 2009 at 12:31 pm
Hi Linda and Flossie,
As you can tell, I am tardy in responding to your posts. Sorry about that.
I was dx’d in ’96, so I’ve been messing with this for a long time also. Coming after a sever case of GBS in ’85, I was prepared for what was ahead and made the decision I would not give in to this demond.
Fortunately, I had a neuro that was willing to work with me on a variety of treatments, some recognized for CIDP, others not and thus experimental. Like most CIDP’ers, response varied with each treatment, so my goal was to find some combination that would slow or stop the progression. Prednisone, IV and oral was helpful, but after about 3 years he took me off oral for fear of kidney damage. Iv prednisone has been used off and on since about 2004 and I have had no lasting side effects thus far. Steroids do boost my energy levels.
You read so many different stories regarding responses to different medications, some great, some not. Guess I was just lucky that my neuro reluctantly agreed to brand specific IVIG (Gamunex) in December and that I have responded favorably to this change, even though I never had any success with other IVIG products. I am not sure if it is just the Gamunex or if it is the combination of having Plasma exchange and IV solumedrol(500mg) the day before the IVIG that is doing the trick. We’ll find out in September when he stops the PE and tries to maintain me on just the Gamunex.
The only thing I can say for sure is that I am a “new” person compared to who I was in December. I very seldom use my electric scooter, can actually walk up stairs again, do yard work, drive for several hours at a time, etc. All things I could not do just five months ago. So keep searching to find what works for you. Ask you doctor about combinations of treatments if a singular treatment isn’t getting the job done for you. Never, never give up because you don’t know when you will find the treatment that does it for you. It took nearly 14 years for me to hit on this combination, so there is always hope.
Good luck to you guys and stay after it.
AnonymousJune 5, 2009 at 3:50 pm
Thanks so much for the advice! I have the directions already for the Lidodrem patches. You can actually use them in several different places but only 1 patch at a time skipping one day. I plan on cutting a patch tonight and going to place on both feet and my hands! Will let you know what happens Flossie! Hugs
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