BryanF
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April 27, 2019 at 5:03 pm
IVIG loses its effectiveness after 30 days or so. I’m not sure what Imuran is or does….
April 17, 2019 at 12:45 pmKathy, Kevin and Jacqueline,
You descriptions fit me perfectly. Right now I get the glove and sock effect off and on. Some days I feel okay and the next day, my legs and hands are numb and I’m weak, including being short of breath. It takes sleeping 12 hours a day for several nights to rebound and get my strength back.
I’m taking IVIg weekly now, with 20mg of prednisone daily. I’m interested in Cell Cept. What side effects does it have?
Thanks to everyone for responding.
January 1, 2019 at 9:54 amRegaining muscle strength is a long term proposition. I’ve had this disease for two years now, and my physical strength is still far short of normal and my endurance is limited.
Because this disease attacks the nerves, signals to the muscles are interrupted and they atrophy. Some folks fully recover, some are severally afflicted, and some of us are chronically affected.
My guess is that because my CIDP acts up on a regular basis, my nerves will never fully heal correctly and I’ll have to settle for being 85-90% of pre-CIDP self in terms of strength and so on….
Oh, and GAMAGARD. I usually get Privigen, but during one infusion session, they were out and substituted GAMAGARD. It made me sick for an entire week. I could barely walk for 3 days, lost a great amount of strength. Never will take that stuff again.
January 1, 2019 at 9:46 amHave you tried Benadryl? When you had your treatment, did you take Tylenol and Benadryl before hand. Usually that heads off the Ivig side effects.
December 27, 2018 at 6:40 pmFor what it is worth. I describe it as the well is only so deep anymore. At my best with this disease, I “pay for” overworking my body. For instance, when I have to work 12 or so hours at work, I’m wiped out for a few days.
That I can muster the strength and just in general, feel good enough to work 12 hours is a positive sign, but then the next couple of days, my calves are weak, I might get a bit of neuropathy in my hands, and I feel run down.
In a perfect world, of course, I’d never work 12 hours or more and avoid the rundown feeling. Unfortunately, the job comes with the insurance that pays the crazy prices for my IVig treatments.
So if you can, avoid overtaxing yourself. I’ve been at this for 2 years now, and at best I’ve peaked at 90% of my pre-CIDP self. Life though, doesn’t always allow you to quit at 90%. In the end, the bargain is, at least for me, I get one day to give it my all, and I have to pay in turn, with two days of feeling miserable.
November 13, 2018 at 2:16 pmCollins22, thanks for you story and your history with this awful disease.
As I noted, I started to relapse in July. My prednisone was upped to 60mg, which I stayed at for most of the summer. I began to taper in September and I’m down to 15mg a day. Like I told my Doctor, the only thing Prednisone does me for is put weight on. I ballooned to 230 pounds! I’m miserable from the weight. Since I reduced the steroids to 15mg, I’ve been able to shed a few pounds over the last couple of weeks. I shed 6 pounds since I reduced the prednisone dosage.
Additionally, over the last 3 treatments of IVig, my doctor increased my dosage.I think the increased dosage has had a positive effect.
Since then, I’ve seen an uneven, but positive results.
-the numbness in my hands has gone away.
-some days I feel downright miserable, with numbness in my calves and feet. I’m tired and easily winded.
-other days, I might feel horrible in the morning, but by noon, suddenly, the numbness in feet and legs recedes and I get a burst of energy. Then again, by evening, I run out of energy and feel exhausted.
-then other days, I feel good. The numbness in my feet and calves is minimal and I have a good amount of stamina.So, over the last 3 weeks, with the increase dosage of IVig, I’ve at least seen improvement. While very uneven, it at least seems headed in the right direction.
November 13, 2018 at 1:08 pmFind a new doctor who specializes in GBS or CIDP. In my humble opinion, she should still be getting IVIg treatments on a regular basis.
November 13, 2018 at 1:05 pmFor my feet, I take 3600mg of Gabepentin daily. While it doesn’t eliminate the pain, burning, tingling, it reduces it by, say 50 to 60% percent. I can definitely tell when I forget to take it.
I don’t know if it is supposed to help your hands.
I know when I was in recovery the first time, it took 6 months for my hands to fully recover.
November 7, 2018 at 11:45 amWhen I came down with CIDP, I noticed that when I have to urinate, it is a right now situation and at times, I have to urinate frequently.
Never had that before I can came down with CIDP.
September 8, 2018 at 10:20 pmGH, thanks for the response. Did you have to stay in the hospital? Or was it outpatient? I’d be interested in knowing that?
Also, did you resume IVIG?
September 2, 2018 at 12:49 pmThanks Jim. Abigal and Aaron, I definitely know how you feel. I posted in early July about my relapse.
It isn’t like I can’t walk, but this relapse has taken me from 90% of my former self (which I was really happy about that progress) back to 70/75%.
My inner strength and stamina is definitely drained. Numbness returns randomly to my hands, arms, legs, and feet. Some days it is bad, other days, better.
Additionally, I get easily winded and I’m just tired.
My neurologists gave me a couple of choices last week. IVIG once a week or we can add Plasmapheresis to the equation. The high dose steroids don’t do much for me, imho.
With Plasmapheresis, he said a week in the hospital? Then there is the port, which I’m simply not interested in. And with the weekly IVIG, that means I have no free off day since I work 6 days.
Even with good insurance, I have to save to meet my yearly $4000 out of pocket expenses.
It just seems like a losing situation. I’m tired. All the progress I made over a year just disappeared in a matter of days. And frankly, I’m not sure what to do.
July 25, 2018 at 9:27 pmJust a little update. Getting better has been sort of an up and down struggle. Depending upon the minute of the day, it seemed like I either felt horrible or I started to feel much better. Happy, I seem to be on the mend. The numbness is dissipating and my strength is better.
I’m not back to where I was, but I’m getting there.
Okay, I know CIDP is supposed to only hit below the knees and the elbows, but I think it affects more than that. When I start to decline, say below 65% of my former self, I get a terrible sciatic nerve pain that runs from my hip, through the buttocks, into the calf.
When I originally got CIDP, I had that exact pain and with this relapse it returned. The pain in the hip and calf is unbearable. Thankfully, as I have started to recover, that pain has gone away.
Anyone else have weird pains with their CIDP?
July 20, 2018 at 7:14 pmI was started on Prednisone when I was first diagnosed with CIDP in November of 2016. I took 60mg a day for almost two months, but I kept getting worse and was finally treated with IVig.
I finally switched doctors in May of 2017 and started a course of IVig. I was still on Prednisone and my new neurologist began to wean me off out. It took to March of this year to get finally get off of it.
But, I began to feel worse. I was fatigued, had muscle spasms and cramps everywhere. Every joint in my body ached as well.
It turned out that my adrenal gland was producing natural steroids. That’s direct result of long term steroid use (or maybe my adrenal glands was bad to start with?). Anyway, I’m back on Prednisone right now and feel decent.
Some people are helped by Prednisone. I hope you are. It certainly is the cheaper route compared to the cost of IVig.
July 15, 2018 at 12:13 pmAn update. I think the IVIg and high doses of steroids have turned the tide. The numbness and tingling are slowly receding down the forearms and calves. And, my strength seems to be returning. Whereas I had the glove and sock feeling up to the elbows and knees, it, has receded to about halfway down the arms and legs.
But, also, at night, on Monday, I started to have terrible burning in the legs and feet. Far beyond anything I’ve experienced. It kept me up it was painful. I mentioned it to the nurses at my IVIg treatment and they sent a note to my Neurologist. He’s on vacation, but his sub sent in for a prescription for something I’ve never heard of.
Anyway, took one Thursday night before I went to bed and it knocked me out. Woke up with a zombie like feeling—you know—where you are floating above your body? I had that drugged out, horrible feeling all day long.
I said I know that feeling, I had it when I tried Cymbalta last year. I swore I’d never touch that DEVIL drug ever again. Sure enough, what he gave me was a generic Cymbalta. I hate that stuff. It doesn’t relieve your pain, it just makes you higher than kite, unable to function. I couldn’t and wouldn’t drive. My hands were shaking. I sweating like I was in sauna. Horrible, horrible medicine.
It took a day and half to get one pill’s effect out of my system.
Anyway, bottom line, now that I’m over the effects of Satan’s pill, I”m starting to feel better, my strength is recovering as fast as it was yanked away, and the numbness is slowly receding. As to the burning? I just saved all my Gabepentin to the evening and it takes enough of the burning away so I can sleep.
July 12, 2018 at 12:34 pmthanks Jim.
