Prednisolone making CIDP much worse….?
AnonymousAugust 26, 2013 at 9:04 am
Any experiences with Prednisolone making CIDP much much worse….?
Hello everybody, this question may have been answered but still hope for your help from a relatively new newbie to CIDP….
I got diagnosed with CIDP a bit more than 4 months ago. I was actually ok (able to move around etc) but with weakness especially in right leg…..but I could function, work, walk. Wanted to get to the bottom of it, got the tests and neurologist confirmed CIDP but just ‘motor’.
One treatment of IVG over a week, felt much better….for 14 days. Doctor put me on Prednisolone (40 mg), started having side effects (shaking, weight gain, lack of focus, pain). Doctor upped Prednisolone to 80 mg to get CIDP ‘under control’ and things went from bad to really worse. The side effects were far worse than the CIDP itself and the CIDP no better – actually feels like having ‘double CIDP’ because of the side effects of muscle weakness and muscle pain from the Prednisolone which I am apparently very sensitive to (1-3 hour after taking Prednisolone I am a wreck, after 4 hours slightly more normal). After consulting neurologist again I tapering down as quickly as possible. Now on 50 mg for 14 days. Friday going down to 30….
My main questions/doubts/fears!:
1) I read various places online that up to 10 % CIDP patients (mainly motor) gets worse with Prednisolone? Does anybody have that experience as well?
2) And the 100 mill question. When Prednisolone has made your CIDP worse – is that reversible when going of the Prednisolone. (I so wish I was back to before I started my treatment, my CIDP was far far better than CIDP + Prednisolone). My fear is of course that CIDP + Prednisalone has made my CIDP go from tolerable (for 3 years) to extremely bad over just 3 months of treatments.
Even neurologists seems a bit lost on the above questions. Hope that some of you may have some encouraging answers. I just wish I was back to before they started treating my CIDP !
August 26, 2013 at 3:53 pm
It shouldn’t be making your CIDP worse, but it could cause side effects which make the total experience worse, as you report. Response to treatment varies. I had no problems with prednisone, starting at 60 mg and tapering to zero over the course of a year. If reducing the dosage doesn’t help, perhaps another steroid would work better for you. In any case, steroids should be a short-term treatment. I take mycophenolate mofetil as my long-term treatment. Do you have a plan for treatment after you are off steroids?
As for reversibility of nerve damage, demyelination heals relatively quickly and well, once the attack on the nerves is arrested. Axonal damage less well, although some recovery is possible. There is a lot of individual variation, so it is not possible to say how it will turn out. The first priority is to stop the active phase of the disease.
AnonymousAugust 27, 2013 at 6:50 am
Thanks GH, really helpful. Yes – it would be odd if the steroids made it worse but I cant help feeling that way since I am weaker after starting on steroids than before the treatment (and it is difficult to know if the progression has been arrested – since the neurologist now thinks that the prednisone has given me muscle atrophy. The plan for treatment once off steroids is steroid sparing drugs – azathioprine which I am already on as well as the steroids at 100 mg a day.
Any experience about pulsed steroid therapy? I read it has less side effects
August 27, 2013 at 3:59 pm
I didn’t have pulsed dosages, I was just started at 60 and tapered down. I was fortunate to have had no side effects from it. I took the mycophenolate concurrently and am still on it.
I’m no doctor, but I don’t understand how one can say prednisone is causing muscle weakness when the primary symptom of the disease being treated is muscle weakness. How could you distinguish?
When my weakness continued to progress after two loading doses of IvIg about two weeks apart, my primary treatment was switched to plasma exchange. By the time I was on PE I was paralyzed from the shoulders down, and by the time I started recovery my muscles were so atrophied that they hung loose from my limbs. I recovered to a near-normal state today about three years after the onset of my illness. Never give up hope, even when the treatment seems not to be working. Alternative treatments may work better.
AnonymousAugust 27, 2013 at 8:07 pm
Did you continue IVIG during the Plasma exchange? How many PE treatments did you have over those 3 years before your recovery? How long before recovery and did the PE work from the inset?
I guess I am looking for how effective PE is relative to IVIG…I have had 8 sessions (50 gram for 5 consecutive days) of IVIG – now my neuro wants to try 70 gram for 5 days. After 3 of these high dose IVIG seesions he will go to PE. My condition has not improved – much leg weakness, fatigue, lack of any normal stamina. I am 61 yrs old.
Thanks for your reply.
August 28, 2013 at 3:00 pm
Rickd: I stopped IvIg when I was given plasmapheresis. The two treatments cannot be done together, because they conflict. Plasma exchange removes what the IvIg puts in. We switched to PE because the IvIg wasn’t giving the desired result and I continued getting much weaker. That was in late 2010 and I have had no IvIg since.
I had nine PE treatments over a three week period, approximately every other day. Since then, my treatment has been drugs — prednisone and mycophenolate mofetil, the prednisone only for a year.
IvIg and PE are considered to of comparable effectiveness, but that is statistical. For an individual case, one may be better than the other. In my case, I continued getting weaker after two five-day loading doses, then crashed when I got a lung infection. PE was the only treatment left for such an extreme case. Since then, I have steadily improved with no signs of relapse, however it is not possible to say how I would have fared with different treatment. It’s speculative, because there is so much variation case-to-case. My feeling is that PE was the right treatment for me, and that the large number of treatments was a factor in my good recovery (five treatments is typical), but I can’t prove it. All I know for sure is that I am happy with how it has turned out so far.
I wish you good luck with your PE and hope you can receive enough treatments to do the trick. Will this be an outpatient procedure? I am not familiar with that. Mine were in-hospital with a large catheter installed for the purpose. Keep in mind that even if your CIDP is arrested, evidenced by increasing strength where you have weakness, it will still take some time to get past the chronic fatigue stage.
AnonymousAugust 28, 2013 at 3:14 pm
Thanks GH for the reply…
Another question I have for the forum – how is the PE administered as an outpatient? How many doses? What is the time per dose? How long in the hospital oupatient? Any other details.
Thanks for the reply from anyone going through PE (Plasma Exchange) as an outpatient….
Again any case histories results will be appreciated.
August 28, 2013 at 8:18 pm
Plasmapheresis helped me more than IVIG. I had approx 75 PE sessions over about 18 months, mostly outpatient. I noticed improvements 2-3 days after my first PE treatment. I never had any noticeable improvement with IVIG, although it may have helped limit the severity of my GBS/CIDP/MFS when I first came down with it.
I had a 2-line tunneled catheter installed in my neck; the tubes ran under my skin and out my upper chest. Unlike a PICC line or IV, this device can stay in for a good year. There is extra care needed to make sure you don’t get the exposed points infected. They tell you to flush it and change the bandage daily; I did that once per week because I kept it clean. You won’t be able to take a shower or get the area wet.
PE can be summarized as the removal of units of whole blood anticoagulated with heparin followed by centrifugation to separate the blood into the cellular elements and plasma. The cellular elements are then mixed with a replacement for the discarded plasma and reinfused. Some of the bad (CIDP) anti-bodies will not get removed if they are too deep in the veins at the time. This is one of the reasons multiple PE treatments are more effective than just a handful. If one’s auto-immune system is still producing the bad (CIDP) anti-bodies, PE can remove them, IVIG does not remove them.
The outpatient PE exchange takes ~3 hours, longer if using a PICC line or other slower infusion method, and they replaced approx 4 quarts of fluids during each session, in my case. They will administer 4 to 6 bottles of the replacement plasma, depending on doctor recommendations. The fluids removed from my bloodstream were very gross (dark and dingy looking) when I first started, then changed to yellowish, and then became clearer towards the end.
The PE always made me very sleepy and I was weaker when I left than when I started. I always slept well the night after. I started outpatient PE at twice per week for several weeks, than dropped to once per week. Then every other week, then every two weeks. I stopped for a few months then started up again at every 2-3 weeks.
If you are in the Los Angeles area I would recommend using the Apheresis Center at Cedars Sinai Medical Center for the outpatient PE. The doctor that runs the program is excellent as are the nurses and equipment.
Hope this helps.
August 28, 2013 at 9:37 pm
Hi there – My daughter was one of the few people with CIDP who got worse while on steroids. Her highest dose was 20 mgs a day & she went from relapsing every 12 days to every 9 or 10. We started a slow taper & resumed IVIG & she improved immediately.
I did extensive research on this topic years ago & you are correct that there is research stating that a small portion of CIDP’ers (mainly motor) do get worse with steroids. Here is a link with info on treatments for CIDP:
The paragraph explaining steroids states: Steroids are widely used for CIDP treatment. However, only 1 randomized, unblinded trial showed effectiveness at 12 weeks (Dyck et al 1982). Many randomized as well as uncontrolled trials and case series suggest that steroids are effective in CIDP treatment (Joint Task Force of the EFNS and the PNS 2010b). A recent randomized trial has suggested similar effectiveness and lower side effects when using pulsed dexamethasone, compared to standard steroid regimens (van Schaik et al 2010). This response is sustained in the long-term in a significant proportion of patients, some of them, as seen with IVIg, evolving to remission (Eftimov et al 2012).
A subset of patients with CIDP, particularly those with pure motor forms of CIDP, may worsen with steroids. This must be considered in case of patient deterioration while on steroid treatment (Mehndiratta and Hughes 2002).
My daughter had pain (numbness & “charlie horses”) and muscle weakness. She also had inflammation on her cranial nerves which caused her right eye to become paralyzed looking in towards her nose. In addition, she had inflammation on her spine from the lower lumbar area down. And she had autonomic nervous involvement – trouble swallowing & terrible digestive issues. Right before she was diagnosed & started on IVIG, she also experienced some urinary incontinence issues.
She was 4 years & 3 months old at the age of diagnosis. She is now almost 12 years old (in a little over a week) and has been off of all treatments for a few months now. We are hoping she has reached “the R word”. (KNOCK ON WOOD!)
August 29, 2013 at 1:49 am
I am also one of those who got worse on prednisone. My calve muscles atrophied, I lost weight, walking became more difficult. I was on 60 mg pill form daily. I noiiced the weakness on my fourth day. I should have called my Dr then, but thought it was just side effects of the prednisone, i finished a 2 month trial, then tapered off.
I had PE, 5 treatments in 8 days. The process itself was not bad, I had problems with my blood pressure dropping extremely low, to the point of passing out during one procedure, other than that no probs.
Have been on ivig mainly, it’s a lot easier than the PE if yu get the same results from both.
AnonymousAugust 29, 2013 at 12:52 pm
Hi Emilys mom,
Thank you for your response and for the link to the research. I was starting to think I was going slightly mad (or at least down a very blind alley) as the steroids makes me feel as I am on route one to a wheelchair. Can I ask if your daughter got better when of the steroids or only after she went off the steroids and started IVIG again.
And truly great that your daughter is still doing well.
AnonymousAugust 29, 2013 at 12:56 pm
Also thank you to you – good to know that even if bad then somebody was/is having the same experience. I decided that I am going down on the steroids as quickly as safely possible and getting a second opinion from a new neurologists of what to do next.
And maybe I can ask you the same question as above – what happened when you came of the steroids? Did you improve “just by coming of them’ or did you have to start again with different treatment?
August 29, 2013 at 9:08 pm
Hi B – We resumed IVIG while she was still on the steroids & we noticed an improvement right away. She has always responded well to the IVIG.
August 30, 2013 at 12:33 am
I continued with the ivig after the steroids, I did have some improvement once getting off the steroids, but still continued to slowly progress from the cidp (if that makes any sense) I was progressing slowly but the prednisone seemed to accelerate the progression and weakness.
October 30, 2017 at 10:27 pm
Hi guys ok so i had ivg treatment for 4 days last week..thurs was last day.. I guess has not kicked in yet, doc says will get worse before it gets better.All day today dizzy and nautious n when i walk i feel like im gonna fall over. n dizzy.Talked to doc said it is side effect.. The pain walking sucks but now the headaches dizxiness muscle twitching esp during sleep!! Anyone gone thru this..Muscle twitches how do u deal wuth it it keeps me up at night have to put pillow between legs.. smh
November 3, 2017 at 9:33 am
You might get a response if you start your own thread. You have hijacked a historical topic about Prednisolone not IVIG.
November 3, 2017 at 10:17 am
Hmm mrjk i didnt hijack anything..I asked one question about the predisolone.. I am having side effects from ivg!! Constant headache and still problems walkkmg..I just asked if it can make it worse thats all..I had the IVG Ivg a week ago and Im still having headaches… ok mr big mouth .. Who made u the captain of the ship btw.. smh
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