After quick progression of my cidp, my Dr has told me my best options is to try and push the cidp into remission through various treatment s. This includes steroids. Has anyone else been or going through this? Please help me!
Before I was diagnosed and the symptoms were just beginning, my PA gave me a steroid injection. It made my disease explode and go to all parts of my body. That night, I ended up in the ER specialty neurology unit where I was diagnosed with GBS. I have refused any steroids since then, with the agreement of my neurologist. Many people have used steroids with very good results. My GBS diagnosis was changed to CIDP after a year. That was 3.5 years ago. It could be purely coincidence, but we’re not taking any chances.
A few years ago I had what was tentatively diagnosed as GBS, tentatively because I didn't have all the 'correct' symptoms. I was paralyzed up to me chest for a week, but then after IVG(?) treatment I started getting better, only to come down with CIDP.
I've been receiving steroid infusions since, initially 100mg once a week, but gradually reducing to now 50mg once a month.
I'm left with slight residual loss of feeling in my fingertips, and slight clumsiness with my feet.
Hope this helps.
Hi there,
They are trying to kick my sons CIDP into remission using Azethioprine [immune suppressant] as well as the IViG . Steroids didnt help and the Azrthioprine doesnt seems to be helping either. He still has to have IVIG for 3 days every 3 weeks.
Hi Brenda,
Sorry to hear that as my ivig has also been increased and though as I am writing this I am in immense pain in my feet, legs, fingers; I am hopfull that soon some type of additional treatment will help. I trully cannot stand this and feel and pray for your son and you.
brenda said:
Hi there,
They are trying to kick my sons CIDP into remission using Azethioprine [immune suppressant] as well as the IViG . Steroids didnt help and the Azrthioprine doesnt seems to be helping either. He still has to have IVIG for 3 days every 3 weeks.
I apparently had CIDP for several years and was finally diagnosed last October, 2013. I started on IVIG in November and now have been having it every 3 weeks x 2 doses without much difference in my symptoms. Recently my doc decided to add "high-dose steroids" of 50mg oral daily to my regimen. I felt awful about a week into this! The "stocking/glove" binder feeling in my abdomen and lower legs that I hadn't had in months came back with a vengeance. I called her and said I wanted to wean off the steroids immediately and now of course I'm doing the weeks-long weaning process to come off of having taken a high dosage for one week. I'm still on 30 mg weekly. I'm not convinced the oral addition helps at all with the IVIG. I've had two doses of IVIG along with the IV steroids I get to accompany them also. Of course on this forum I've heard from people who this has worked for--this condition is so different for everyone that I guess it's worth a try. I'm sure the doctors must see that different concoctions work for different patients. It's really important to be able to let the doc know right away if whatever is added is not helping though because all of these meds have such awful side effects to our other body organs and being on them unnecessarily is no good for anyone either.
I have been having IViG every 4 weeks for about 2 ½ years now. The routine always went like this:
First week, sick (flu like and dragged and drugged feeling)
Second week; feeling better
Third week; Oh yeah baby, bring it on
Fourth week; showing all the CIDP symptoms (cannot walk etc)
5 months ago the Neuro and I decided to try 5 days of Panafcortelone/prednisolone 25mg for 5 days as a decreasing dose starting on my first day of IVIG 2 tabs then one tab X 2 days ending with ½ tabs.
Works for me, as the IVIG no longer kicks my butt as much and I can now go the 4 weeks without as many problems. Glad to say, I am almost on an even keel for most of the month and I do not have to (nor wish too) take Panafcortelone/prednisolone long term.
- My next goal is to have my Sural Nerve and Muscle Biopsy done so my Neuro and I can decide on the next course of medication options.
My neuro doctor is still trying to kick mine into remission and so far, the current weekly IViG for the last 3.5 years, 2000 mg daily of Cellcept for the last 4 months, and in the past, a 4-week trial of weekly IV steroids, have not worked. Next step--not sure. I just got an extensive MRI of the nerves on my left side where the CIDP is more severe, and I see my neuro next Friday for those results. The more the progression, the more discouraged I get. (:-(
I was on IVIG but continued to deteriorate7-8 months into deterioration started 50mg of prednisone which turned me around.
Please look into potential effects of the sural nerve biopsy. I didn't pay too much attention to the possible complications as I thought it wouldn't happen to me, however it did...I had the biopsy 18 months ago, and whilst it did provide the CIDP diagnosis it has unfortunately left me with a much larger numb area than predicted (one half of the top of my foot + the ankle beside and below the scar), and despite being completely numb my 3 lateral toes are also hypersensitive to the point that at times I can't stand the touch of the bedclothes, socks or shoes. This is not constant, thankfully!, but when present it is extremely unpleasant and I can't sleep unless I take Panadeine or extra Lyrica. Also, the scar area now tingles when touched, but initially the electric shocks were incredible. Make sure it is absolutely necessary before you subject yourself to that procedure. All the best.
Bob Button said:
I have been having IViG every 4 weeks for about 2 ½ years now. The routine always went like this:
First week, sick (flu like and dragged and drugged feeling)
Second week; feeling better
Third week; Oh yeah baby, bring it on
Fourth week; showing all the CIDP symptoms (cannot walk etc)
5 months ago the Neuro and I decided to try 5 days of Panafcortelone/prednisolone 25mg for 5 days as a decreasing dose starting on my first day of IVIG 2 tabs then one tab X 2 days ending with ½ tabs.
Works for me, as the IVIG no longer kicks my butt as much and I can now go the 4 weeks without as many problems. Glad to say, I am almost on an even keel for most of the month and I do not have to (nor wish too) take Panafcortelone/prednisolone long term.
- My next goal is to have my Sural Nerve and Muscle Biopsy done so my Neuro and I can decide on the next course of medication options.
They don't recommend the nerve biopsy because it can leave you with more damage then if you did not have it. Some clinics can get the same results with a skin biopsy (University of MN can). I did not do the biopsy because I heard so many horror stories of the results and side effects. I didn't need a biopsy for diagnosis. Had positive protein in my spinal tap, moderate demylination on the EMG/NCS and all the classic symptoms. They tried to get me to get the biopsy at first but I refused. As for prednisolone. That was the first treatment my neurologist tried. It was miserable to be on Pred. The side effects were worse than my symptoms at times. I just wanted to die when on Pred. So I weaned myself off and sought out care with a CIDP specialist at the U of MN and have been on IVIG ever since and doing great. I will never take Pred again and I would not recommend it to anyone. The long-term effects on a body can be devastating also. I was told that I probably will not go into remission using IVIG as my form of treatment. My neuro said that most people that have gone into remission usually did with the cancer/chemo immune suppressant drugs. But I don't want to try these for fear of the side effect of possible cancers down the way. So I choose to remain on IVIG every 21 days which is annoying but at least I feel good and don't have any major symptoms of my CIDP except some mild exhaustion and steps can be hard.
Prednisone has brought me into complete remission.Now its like I never had the illness.Knock on wood.
CONGRATS TO YOU. HOPE FOR ALL OF US
john1953 said:
Prednisone has brought me into complete remission.Now its like I never had the illness.Knock on wood.
Great news John! Can you tell us how long you had the symptoms before you started on the prednisone? Was that the first drug they put you on? Great for you but it just seems that so many others have such a long trial of meds before getting any relief, most often the IVIG for so long....were you ever on IVIG?
Thanks!
I first had the symptoms in july of 2013.Went in the hospital in october of 2013 for IVIG treatments.Started the prednisone in November of 2013.Started out taken 80 mg a day and weaned down to 2 1/2 mg a day.This is what i`am on as of now.I had 10 treatments of the IVIG which did nothing for me.Prednisone was the key for recovery for me.I really am one of the lucky ones I guess.
Hi Brenda,
How long has your son been on the Imuran? I was told I could expect to wait AT LEAST 3 months before seeing any significant changes in my condition.
brenda said:
Hi there,
They are trying to kick my sons CIDP into remission using Azethioprine [immune suppressant] as well as the IViG . Steroids didnt help and the Azrthioprine doesnt seems to be helping either. He still has to have IVIG for 3 days every 3 weeks.
I WAS TOLD A GOOD 6 MONTHS OR MORE BEFORE IT MIGHT WORK
eaetaylor said:
Hi Brenda,
How long has your son been on the Imuran? I was told I could expect to wait AT LEAST 3 months before seeing any significant changes in my condition.
brenda said:Hi there,
They are trying to kick my sons CIDP into remission using Azethioprine [immune suppressant] as well as the IViG . Steroids didnt help and the Azrthioprine doesnt seems to be helping either. He still has to have IVIG for 3 days every 3 weeks.
I had IVIG (can't handle due to chemical meningitis it causes). Then had two stays in hospital of 9 days each time for plasma exchange. Last time I was treated was in November of 2013. Right before the last PE, I started on prednisone and Imuran (Azithioprine). Was advised that it takes several months for the Imuran to really kick in and then they could start weaning me off the prednisone. In one more month I will be completely off prednisone (barring any relapse) and only taking the Imuran. I feel better now than I have in about 2.5yrs. No treatments needed and only taking the Imuran (I assume forever) is ok by me. I was in awful shape when initially diagnosed. So to follow up with your question, yes, prednisone does work on some. But one thing you have to be aware of, it swelled me up like the Michelin Man. But since I started weaning down, I have lost 10 of the 15lbs I gained and the puffiness is now receding. So if you get on it, just hang in there and ask them to wean you off after a while. But of course, no one responds the same. Hope you have good luck and prayers for you!!
I myself am on Steroids daily, and IVIG every three weeks. After the IVIG I find I'm very tired and end up sleeping for about eighteen hours a day for about two or three days. Since I'm now retired I fine I have to much time on my hands so I started a computer repair business at home and get out of the house at least twice a week for a full day because that's all I can handle at this time. Gary
I go once a month to the infusion center. Use 1000 mg of prednisolone and the infusion lasts about 2 hours. I don’t take any prednizone orally. I function almost normally and feel pretty good. The first night sfter the infusion is the worse with my legs feeling funny from my knees down. Hard to sleep the first couple nights too but gets better. I asked my doctor about the side affects of the steroid and . he said that it is only in my body for two days and much better than taking prednizone pills daily. He has had a patient doing this treatment for like 20 years and had had no bad side affects from it. I have not done the IVIG treatment and Am trusting my doctor is doing the right thing for me. I have to take Lyrica for the feet burning but i feel better than I did before these treatments. Good luck!