I started IVIG at the beginning of March 2017 and did very well until recently. Now I seem to be in full relapse — very weak, barely able to hobble around the house with a cane or rollater, in a lot if pain. I’m seeing my neuro on Thursday to discuss treatment changes. Everything I’ve read about Rituxan’s side effects (one of which is death in autoimmune patients) scares me. The thought of taking huge doses of steroids for weeks or months makes me cringe. If you’ve been through a relapse, please tell me how you were treated and how it affected you. Thanks.
I was diagnosed with GBS in March of 2017 as well. I was treated with plasmapheresis. After the 3rd treatment I could walk again, it was like a miracle treatment for me. I relapsed 2x and went right back on the plasmapheresis (also called plex) and again after 3rd treatment I could walk again, I was now labeled CIDP… My last relapse was June 2017, I continued the plex treatments until Sept 2017 (slowly reducing 3x a week, to 2x a week…) I was also transitioning over from the plex treatments to pills, immuran and finally Cellcept because I was allergic to the immuran. I have continued with the Cellcept to this day (1000 mg in the am and 1000 mg in the pm) and so far so good. I still deal with fatigue and weakness and insomnia , but can function daily.
I’m glad you’ve found something that helps you. Going from one diagnosis to another must be frustrating. I was diagnosed with CIDP from the start and have never taken anything except IVIG. I’m wondering what other CIDP patients have been given to bring them out of relapses. My insurance is Medicare, and I doubt plasma exchange would be approved (because of the cost) unless I were in extremely dangerous condition. Medicare seems to push steroids on everybody because they’re dirt cheap, but for several reasons I can’t take large doses of steroids. I’d like to hear from CIDP patients who have been given Rituxan.
Like you. I have pushed back on rituxan and steroids. If I thought that either one was a permanent fix i would do it, but no one can say that the benefits of either wb permanent. Some people have good response to rituxan. However, be sure they test you for Hepatitis, TB, and especially the JC Virus, any of which can be activated by rituxan which suppresses your immune system. The JC Virus is particularly nasty (destroys your brain) and any evidence of your exposure to it will probably rule out rituxan. I’ve been on Ivig for years but have deteriorated steadily. I drop to a new plateau and remain there for a while and the drop to a new lower plateau again. Never recovery or improvement. I too can only walk with cane or rollator. Fortunately I have not had the severe pain experienced by so many on this forum. Rituxan has been ruled out for me due to evidence of JC Virus, but I did have cytoxan which didn’t do anything to relieve cipd and even created more problems with my bone marrow and red/white cells. Currently, I am on no therapies at all. Stopped ivig bc it didn’t seem to help. If I had severe pain, I’m sure I wb eager to try anything. So, none of this sb construed as advice - just sharing. I wish you well as you struggle with this intractable affliction.
No permanent fix exists except stem cell replacement. I know a lot of people get months of help from Rituxan infusions, but it is daunting to hear the list of possible side effects. I will take the two infusions of Rituxan if my neuro believes they’re necessary, though.
I saw my neurologist today, and he believes I need a larger dose of IVIG because I’ve gained 15 pounds in the last year and a half. I’ll start the higher dose in a few days, after insurance okays it. I’m having a new set of nerve conduction tests tomorrow morning. If the increased IVIG doesn’t help, we’ll discuss options such as Rituxan. I don’t mind saying this setback terrifies me. I was doing reasonably well before this.
I wish you the best, Sandra.
I have had CIDP for 19 years. I have had everything from steroid infusions to Cytoxin. Plasmapheresis is the most effective procedure or treatment to have done. It is a quick 6-12 week treatment. Then you can go back to IVIG infusions. The treatment does have some risks. You do need to have a subclavian catheter put in. Some times they will admit you for 11 days, do the pheresis every other day, then take the subclavian out after that is over. Just because of the risk of infections. I usually am able to go home because I had done so many in the past. I know how to keep the catheters protected while showering and everything else.
I have been on prednisone for 19 years and that has really helped. But also hurt my bones. I most likely will never be able to go off it because of my adrenal gland issues that have been compromised from the prednisone.
I am now in remission and have been since March 2015. I am feeling great!! My neurologist has no idea why I all of a sudden just didn’t need IVIG anymore. I feel great. Just have nerve pain from the damage. I am still on Cellcept but will try to go down 500mgs starting on Monday. I worry about that, but my neurologist would like me off as many drugs as possible. Cellcept is an immune suppressant. That might be a medication you might want to talk to your dr about!
If you have any questions please don’t hesitate to email me.
Best wishes to you!!
I’m glad that you have done so well with your therapies. My bad experience with Cytoxan and the failure of Ivig to slow the progress of the disease have made me leary of potent and invasive therapies. Plus, no one can assure that the therapies will reverse or arrest the progress of cipd. They can, however, be quite specific about the significant side effects and risks. My neuro is urging pulse prednisone, but unless something happens that I am convinced otherwise, for now, after nine years of fighting, I have stopped all therapies. I understand that I will likely be in a wheelchair soon. I already need my rollator. But with any luck at all, I will be dealing ONLY with cipd, not additional therapy induced complications.
I don’t recommend this kind of thinking for anyone else. I actually think people should do whatever they can to optimize their health, especially those newly diagnosed because, like yourself, many are helped by the standard therapies. But for me, personally, it’s where I am at right now. I don’t have the severe pain reported by many. If I did, I would probably be eager to try anything to alleviate it.
I hope you continue in your remission. You have gone through so much to get there.
I am so sad after reading your message. I hate to say this but I feel like you are giving up.
I just turned 55 and have 4 other auto-immune diseases that I deal with but I am a fighter and I don’t give up. I am positive and have a good sense of humor.
My husband was my number one cheerleader but it finally wore him out. He ended having what is called a “caretaker burnout”. On top of a mid-life crisis. It has been extremely difficult but I have decided to once again pull up my boot straps and fight like a big girl. So far so good!! Was worried about having a flare up because of all the stress but I left him and I feel great!!
It is all in the attitude!! If you ever think that maybe your dr isn’t giving you all or everything, come to Az and see Dr Todd Levine. He is the best at dealing with CIDP in the country and possibly the world. Great guy. Saved my life!! 602-■■■■!
Or just a phone interview.
I just hope you change your mind. Fight! There is so much out there for you to see and be happy. I urge you to really think about it!
Have a wonderful week!
You are right that my aversion to further therapy is partly “giving up” but it is mostly “chickening out” due to potential draconian side effects and risks. Sorry to hear about your breakup - I had a similar disappointment just a year ago. It has left a void in my world, but that’s a long story.
BTW, the phone number you sent me for Dr. Levine was blacked out. I guess sharing numbers is off limits for forum based email correspondence. I don’t know whether I would call him, but it would have been nice to have the number bc I will be facing some decisions this fall. Maybe I can find it on the Internet.
I don’t want to give you the impression that I am sad or depressed. I am very positive in most respects and I laugh every day. I accept my limitations. I enjoy the company of old friends. People tell me that they admire the positive way I deal with this affliction. I hope I can sustain that if things get much worse.
However, I do value and appreciate your heart and your encouragement. Please know that your words have already caused me to revisit my thinking on therapies. Perspectives from a person who has gone through so much have to be considered thoughtfully. I cannot imagine how you deal with 4 other autoimmune issues. You are a person of strength and humanity.
OK, it’s almost 1:30 here on Long Island, so I’m heading to bed. Thank you for your support and your kind concern.