I was diagnosed with CIDP December 2018. I probably had it for several years.(weakness in legs mostly) Neurologist put me on IVIG 4 consecutive days per month 50 mg per day starting January 2019. Started showing improvement in muscle strength, reflexes, tingling & burning sensation ( all in legs). Early May he also put me on 20 mg of prednisone daily. about 3 weeks later started to notice my left foot ( always the worst of the two) get somewhat weaker). July reduced IVIG to 2 days 50 mg each day In Early August he put me on Cellcept 500 mg 2 x 's per day. He started weaning me off prednisone (10 mg) but left foot still weak. I asked if prednisone can be causing muscle weakness and cited a study ( see below) He dismissed it outright. He then increased the cellcept to 1000 mg 2 x"s per day. Anyone have any thoughts?
Hi Mark,
Sounds like your neurologist is trying a lot of combos. My neuro has had me on straight ivig since 2016. Is there a chance of getting a second opinion? If so I’d encourage you to get one. Welcome to the group/ family!
Jack
Hi Mark, Anne here.
Interesting…i was diagnosed in November 2018 with CIDP. Mine was acute and highly progressive. Mine was a vaccination injury from December 2017, immediate onset with rapid progression. It took 11 months and 10 specialist to reach a diagnosis. I do not know of slow onset with CIDP. Its generally rapid. I could barely walk at 11 months when diagnosed. I don’t know of slow progression of CIDP. Mine too attacked my left foot first and rapidly with such bad swelling my left foot became deformed, permanently.
Lots of parallels.
I receive 30 grams of IVIG, 5 consecutive days, every 4 weeks…similar to yours. I never got steroids except for 1st month of treatment. I got 120 mg of steroids IV just before the IVIG. No steroids now as they are not good unless absolutely necessary.
I have been stalled on IVIG now for 2 months because cra… nurse exploded all veins in both my arms. Will probably have to switch to SGIV treatment now. My veins are all collapsed. Getting another vein mapping ultrasound next week and brachial plexis following week to check for clots into my shoulder. Have to find culprit for profuse pain and swelling in both arms, but know my veins have been infiltrated on multiple occasions. So, working through a clear diagnosis before restarting treatment. No clue on the steroids. Maybe others can share their experiences. Ours is similar, but no steroids. My best of luck to you for speedy recovery from steroid problems and your CIDP remission.
Anne
Mark, I would encourage you to get another opinion. Cellcept doesn’t have the best proven record for CIDP. Check out this link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3105635/
Slow progression is common in CIDP. Some cases are diagnosed as GBS, then changed to CIDP when the patient gets worse later, after an immediate progression. My husband was diagnosed with GBS in April 2017 when only his feet and legs were involved. In September 2017 he began to lose functioning of his hands but was able to walk better, and by mid 2018 completely lost all ability to move any fingers or either wrist. He had steroids (oral and intravenous), IViG, and finally Rituximab. He hasn’t gotten worse since the Rituximab was begun. He hasn’t improved, but is still able to walk. Get to a doctor at a teaching hospital as soon as you can - time is not on your side, and action is urgent. You didn’t say where you are, but if Atlanta is an option, get to Emory. Our thoughts and prayers are with you.
Thanks to everyone for the replies. I live in Long Island, NY. Can anyone recommend a Neuro for a 2nd opinion.
I’m pretty sure prednisone doesn’t cause weakness, but CIDP does and atrophy of muscle. I got IVIG infusions weekly for 3 years and then a year of prednisone. Now I just deal with not much weakness or loss of nerve function but nerve pain in my feet and legs. I’ve not had the other meds mentioned.
Chronic pain can be a real challenge but all things are possible with God
Mark,
I live on LI also and have had CIDP for 8 years. I would suggest your getting a second opinion. I go for IVIG (going tomorrow” at NY Presbyterian (Weil Cornel) every two weeks & have gone for the last 8 years. I get 45 grams (which I think is Raquel to 250 ml) every time. I also take 2 tablets of Tylenol, 2 tablets of Benadryl, & 100 mg of cortisone as a precaution of having a reaction. However, I have never had an adverse reaction. I would make an appointment with anyone in Dr. Norman Latov’s department. I see & recommend Jennifer Langsdorf MD who is in that department.
https://weillcornell.org/peripheral-neuropathy
My CIDP does progress every year, but has gotten worse very slowly. I get EMG exams annually. If you want to call me, send me an email and I’ll share my contact info. Wishing you good luck. Maybe you only need the IVIG similar to myself. Although, everyone is different.
Ronniewboltex@gmail.com.
Typo: 45 grams “equal” to 259 ml
Mark, I have had CIDP for 19 yrs. I am under the care of Dr. Thomas Brannagan at Columbia Univ. Neurological Center. Any neurologist on his staff, in case you can’t get an appt. with him, would be fine. This is one of the top places to go for neurology in the USA. Phone #s 212-342-0405 or 646-426-3876. As an aside I get 40gms IVig every week. Brannagan is director of Neuromuscular Medicine so it might be difficult to get to see him ASAP. I wish you luck and better health in the future. Stay in touch and anything you wish to discuss regarding your medical issues just let me know. Prednisone is not a patient friendly drug and you have to be weaned off of it slowly. It’s usually used when a diagnosis isn’t forthcoming. Many of us here have had exposure to it, I know I did back when they hadn’t arrived at a diagnosis. My mantra is the fewer drugs, the better. All the best.
Don
By the way Mark I see Ron recommended NY Presbyterian Weil Cornell. Also an excellent choice. Norman Latov was my neurologist when he was at Columbia Presbyterian and I followed him to Weil Cornell. He is probably one of the world’s most outstanding experts in neuro-immunological disorders. Dr. Tom Brannagan had been one of his fellows in neuro-immunology and when he was appointed head at Columbia Presbyterian I switched to him b/c I live in Westchester and it was easier to get to. The important thing is to get to a top teaching hospital and both are excellent.
Thank you. Much appreciated.
Call Columbia Presbyterian in NYC. Its one of the best in the country. You’ll need a medical referral for illness and urgency. Anne
I know you always have to drink lost of water before and during to keep your veins well.
Hi Avon, my CIDP is the result of a flu vaccine as well. It wasn’t long after that I started having trouble with my feet and legs, but I tried to power through it. That was early 2014, and I was diagnosed in May of 2016. I could barely walk at that point. Had to have my hands on the wall when I was walking down a hallway. It’s really good to know that there are others who know what I’m going through. I wouldn’t wish this on my worst enemy, but it helps me to keep things in perspective knowing I’m not alone. Thanks for sharing! Jack