October 24, 2015 at 8:33 am
My 72-year-old mother has severe tremor in both arms and hands associated with her CIDP. Worse than any Parkinson’s tremor I’ve seen. It has profoundly affected her quality of life. She can’t read a book, magazine or newspaper. She can’t feed herself. She can barely hold on to a phone. Her CIDP would be manageable were it not for the tremor.
Her doctor has tried several meds for the tremor but nothing works. She is IVIG resistant and currently receives out-patient plasma exchange for 5 days once a month which really saps her strength. In addition, she takes Cellcept. Prednisone has been tried and decreased as it ruined her quality of life as well.
I’ve read that Rituximab can help with tremor. A consulting physician recommended this as a treatment of last resort. Has anyone experienced severe tremor that improved with Rituximab? Would anyone who’s tried this treatment share their experience? We are desperate. Thanks in advance.
October 24, 2015 at 4:02 pm
I just had my 3rd maintenance dose of Rituxan 2 days ago. I haven’t posted about it yet, but you can read about my experience with the drug before that point here:
More info about the drug can be found here:
October 28, 2015 at 11:38 am
Your mother is not alone in this. I have severe tremor also, and since I live alone it is nearly impossible to take care of myselff. My neurologist says tremor or shaling is not part if CIDP, but I don’t agree.
Are there only two of us with tremor?
October 28, 2015 at 12:37 pm
There certainly can be tremor in some phases of CIDP. I was paralyzed for a time, so had no tremor then, but I developed a severe tremor during recovery as my motor nerve function came back. It subsided as healing became nearly complete, so is now minor.
There is so much variation with CIDP and related neuropathies that it surprises me that a neurologist would make such a statement.
October 28, 2015 at 7:16 pm
Thank you, thank you, thank you, a hundred times. I appreciate your responses so much. We’re all beginning to lose hope. She used to have a fighting spark in her eyes, but after nine months of unrelenting severe tremor (cannot feed herself, read a book, use a tablet or e-reader, hold a paintbrush – the things that she used to love to do), I can’t see the fighting spark in her eyes that has been there through each relapse since last January. This is such a cruel disease. Each time she would work so hard in PT to make some gains, only to have the rug ripped out from under her with each relapse. I’m afraid we’re losing her. She was not in great health before the CIDP and is not responding well to any of the traditional treatments. We’re hoping her doctor will agree to try Rituximab/Rituxin next.
Thank you again!
October 29, 2015 at 12:50 pm
Tell her not to lose hope. You never know in this world. Years ago I was worried about MAYBE having a serious disease, and I went out in the parking lot and got hit by a Strohman’s bread truck. (Not hurt, just knocked down.) I decided to never worry about tomorrow.
When I first got CIDP, I started IVIG and was getting better (just a little, but every bit it helps) …..my legs felt stronger and the shaking got better and I wrote a little bit, and then I got the flu. I was in bed for 9 days and all my progress disappeared. I was so depressed. But my neurologist was supportive, and I’m working on getting it back. Somedays I can walk up and down unsupported by my bed, some days I go down like a rock.
Tell your mother I will put her on my prayer beads for her shacking to improve. One thing I’ve found is to not concentrate on the shaking, but focus on the INTENTION of what you are doing……i..e. think “reach for faucet….turn on water….etc.” That helps get the movement done.
Let us know how she is doing.
November 2, 2015 at 5:22 pm
Hi guys I’m Jim. In reference to tremor. One of the reasons why I started seeing a neurologist was numbness and tremor. My PCP was worried about MS. After all of the testing and ruling out she diagnosed me with CIDP. After almost a year the tremor is still there and the numbness is working its way up my lower leg from my feet. Up and down stairs is very wobbly. Spasms in my legs. Numbness in my hands and spasms in my upper arm near my shoulder. We did a lumbar puncture two weeks ago and started lowering prednisone. Down to 35 mgs and still on 600gabapentin 3 times daily. I can’t take the side effects enough. I’m still in chronic pain chronic fatigue and having swallowing problems. We will be talking about ivig treatments this week. It’s been a long year but I try to keep pushing forward. Not only do I have CIDP but I also have COPD and I’m several meds for blood pressure and bipolar disorder. I just got rid of a 7 mm kidneystone a couple off weeks ago for icing on the cake. I’m considering medical marijuana as both my therapist and my neurologist mentioned it. My neurologist can’t prescribe it but she can send me to a doctor who can. It’s now legal for prescription in Connecticut and the dispensaries hire professionals that specialize in suggestions of proper strains for specific symptoms. I’m getting to the point where I will try anything to feel better. I really don’t want to use opiates for pain or benzos for sleep. They are much harder to come off of especially the benzos which can cause seizures. Anyway sorry for babbling. Keeping everyone in my prayers for more good days than bad.
November 4, 2015 at 3:15 pm
I should consider myself lucky: only have tremor on my left side so I can function. The tremor started while I was in the hospital almost completely paralyzed. Only noticed when I improved some and was sent home. Primidone takes care of it but I’m afraid of it since it makes me so dizzy.
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