Steroids….please share your story.
AnonymousJune 7, 2007 at 2:59 am
Hello to everyone! I am newly diagnosed with CIDP and have had two five day sessions of IVIG. After the first one I noticed much improvement which lasted about six weeks before the symptoms started coming back. (They never came back as severely as the first time….I could barely walk then….now I walk with only a small limp but still fall occassionaly.) The second round of IVIG gave me only a little more muscle strength but really took away the fatique. When I visited my dr. last week he tested my reflexes, ect., and tripled my dose of Imuran (which I was put on after the last IVIG hospitalization) and also put me on 60mg of Prednisone.
I’ve only been on the Prednisone for several days but the side effects are killing me. Last night I woke up with the worst leg and foot aches I’ve ever had….they lasted throughout the day also. My muscles have hurt like crazy today and no pain meds or Neurontin takes them away. I just feel like I have the flu. I do have Fibromyalgia and wonder if the meds are increasing those symptoms.
Please share your experiences with steroids so I’ll know if this is the right way to go. Oh yes, my fatique is worse also. This is not fun!!!
Thank you all so much…
Sheila in WV
June 7, 2007 at 10:15 am
I cannot offer you any info on steroids, but I did want to point out that the ivig does not aid in making your muscles stronger. The ivig will give your body time to start healing you nerves (mm a day) as this happens, slowly, you get better function of your limbs. Besides halting any further demylienation, the ivig also aids in inflamation. Depending on how long you had your symptoms is relative to weakness in your muscles. For instance, Kevin had symptoms for about 4 weeks (mild compared to most) so there was not time for the muscles to atrophy. He currently is able to do everything he did pre dx. Occasionaly he does twist his ankles, the doctor said this is because the nerves are not getting the proper message fast enough to the muscles needed to accomplish the movement he is trying to do. I was re-reading Kevins ncv/emg yesterday, and it says that there are no muscular issues (my lay man explanation of what is really said) I never noticed that before. Well, I hope you continue to improve and good luck to you. Dawn Kevies mom
AnonymousJune 7, 2007 at 11:26 am
Nobody knows your body like you do, so listen to it. My question is, if the IVIG worked so well, then why did he add the steroids? Also, that is a high dosage, so expect sleeplessness, irritability, stomach reactions, a possible rash, etc. If you are doing well getting IVIG every 6 weeks, that is the route I would take. Did he tell you why he added the steroids?
AnonymousJune 7, 2007 at 12:22 pm
Hi, I was dx in May06. I went from paralyzed legs to walking with a walker by Oct. Then my Neuro left the clinic, and I have been bouncing around trying to find a new one. One said I had a pinched nerve and my legs were “shot” from the knees down.(that was stupid) Next Neuro is pumpin
me full of steroids and I feel terrible. Past two months he shot me with cortizone, and am taking prednisone 20 mg every other day. Dr. says I am on a low enough dose to not have any reaction. When I had my once every two month IVIG, he even added steroids to that. I am bloated, depressed, body aces, and cramps in my legs. This is all new. I am now going to a differnt primary doctor next week. I am going to have him refer me to Neuro who will be visiting the clinic every other week. Then I hope to drop the steroid dr. who is 80 miles away. I still have drop foot in both feet and legs from knees down are painful and useless. Sorry I did not have good news for you about steroids. We gotta keep hoping!!
AnonymousJune 7, 2007 at 1:29 pm
Aside from the immediate unpleasant side effects, Prednisone has long-term side effects like bone loss, which increases your risk of developing osteoporosis. My neuro and regular doc avoid prescribing it other than for short-term use. I used to take it as a child when I had asthma attacks, and I still remembers how moody it would make me. It’s nasty stuff. 😡
If the IVIG is working, and it sounds like it is, maybe you need it more frequently than 6 weeks apart. After my first 3-day treatment, I got 35grams once every 4 weeks. It is the only medication I get for the CIDP and I have gotten progressively stronger over the last year to where I’m measuring well within normal limits. I now am getting IVIG treatments every 6 weeks, although the last few days before treatment are a bit rough due to increased fatigue. Still, my strength is maintaining.
If you’re having all the bad side effects from the high dosage of prednisone you’re getting, I would definitely call your doctor and question whether or not you need it or if you could take way less of it. It doesn’t sound like you’re being given enough time for the IVIG to work and for your nerves to regenerate and muscles to build back up from use. If you’ve had muscle atrophy that is contributing to your current physical problems, perhaps PT could help as well.
Wishing you the best, 🙂
AnonymousJune 7, 2007 at 3:32 pm
I was on prednisone for about three years and how well I remember what they did to me. I had the “moon face” and now that I have been off them long enough, I have pictures to show BEFORE and AFTER. I had to battle to keep control of mood swings. The worst side effect for me was stomach problems, the heartburn was so severe at night I’d moan and I couldn’t sleep. I ended up with ulcers. When your doctor chooses to take you off, it HAS to be done very slow. It took me a year to get off them. I think you should ask your doctor if he feels you need them, or if he is just trying them to see how you do. I went through alot of falls and they stopped after the second year. Another opinion that I have, if you did well with IVIG’s, talk to your doctor about trying a maintenence, see how you do having the IVIG’s every two to four weeks, until you find what you do best with.
AnonymousJune 7, 2007 at 9:04 pm
We have a 3 year old on Solumedrol each week. He was dx. 11/05, started on ivig and it worked for awhile but stopped working. When we finally switched to Solumedrol, we were taking ivig each week and it still was not working.
The Solumedrol has less side effects than oral. If you search on this site under Solumedrol, Pam wrote a good post about Dr. Parry. You need to read it.
Good luck. I hate steriods but they are giving Dell a normal life, as normal as it can be. We are keeping our fingers crossed that it continues to work.
AnonymousJune 7, 2007 at 9:34 pm
Honestly, I’d find a new neurologist.
Most CIDP’ers need IVIG 1 time every 4-6 weeks as a maintenace dose. If you are relapsing at 6 weeks then I would encourage you to get a dose (or 2 doses over consecutive days) every 4 weeks. That seems to be the magic number for most.
I would NOT EVER take oral prednisone. My daughter was on it (she’s 5, dx’d with CIDP at 4) for 4 months & it was hell. She had horrible mood swings, wasn’t sleeping well at all, was constantly hungry, gained 10 lbs in 7 weeks, got the “moon face”, had severe stomach problems that no medication was relieving and had horrible aches and pains all the time. She actually relapsed sooner while on it then when only on IVIG.
Solumedrol, which is an infused steroid, has less side effects and is more effective than oral prednisone in some people. If you MUST be on a steroid, that’s the one that I would chose. But honestly, it doesn’t sound like you even really need it.
AnonymousJune 8, 2007 at 6:59 am
I’m sorry I don’t have time just now to tell you my experience with stereoids in detail, but I also got MUCH worse from them, and to make a long story short, it was because it turned out to be “helping” my disease instead of curing it. The reason is that with my kind of neuropathy, it was the fact that I had too many B-cells in my immune system that was the reason behind my demyelinization. When they gave me Prednisolon (100 mg a day for a month, then taper) I was very rapidly deteriorating, because the steroid takes out the T-cells of the immune system, which, among a lot of other things also regulate the number of B-cells.
On the background of my experience, I would advice you to ask the doctor to count your B-cells to make sure that there are not too many of them. If he finds there are, please tell me, and I can share more of my experience and knowledge about this. It’s in fact a story with a relatively happe ending.:)
AnonymousJune 8, 2007 at 10:35 pm
To Alloug……..thank you so much for your post…..gosh, someone all the way from Norway! Is the test for determining your B cells a blood test? If I remain on he prednisone (which I doubt I will) I will ask for this test. Thank you so much for responding and I will let you know if the B cells are the problem.
Sheila in WV
AnonymousJune 9, 2007 at 2:42 pm
I just read your post about steroids ….I have 20 years with steroids since 1987 …I am still on 25mg day after day and I do sollumedrol 1g every 2 months . I have tried Imuran but it make me very sick …vomiting …which i had to stop , tried cyclosporin …did not help …tried IVIG which did help but had relaps very soon …in 5-6 weeks time …I didnt know this is normal …my doc said to stick on steroids ..that was 4 years ago….the last time I did have sollumedrol raised my blood pressure and my doc said to try again IVIG …he also mentioned cyclophosphamide ( Endoxan) but this is chemo…hair loss etc …I will leave that when i dont have any other choice …as my liver is all fat and my liver enzymes are high sometimes ..which the steroids have caused it i guess .
60mg steroids that you are taking is too high when you are also taking IVIG …
and you also take Imuran too ??
Like Pam said listen to your body ..sometimes we have to be doc for us too .
I am from Cyprus …Greek Island . ..so I hope I wrote clearly and understandable .
AnonymousJune 10, 2007 at 8:40 am
Nobody is really far away on the Net, you know, but you comment was heartwarming anyway!
I guess they can see if there is too much B-cell acvtivity with a simple blood-test, but if they find something, you would probably have to have a bone-marrow biopsy. It sounds worse than it is, really, but I would recommend you – if you have to do it – to insist on getting it done in your hip-bone and not your sternum:eek: (breast-bone).
Good luck no matter what, and please ask more questions if you think I or anyone might be able to help you!;)
AnonymousJune 10, 2007 at 11:50 am
My primary doctor just prescribed a 5mg daily dose of prednisone and my lyme’s specialist in NJ has categorically adviced against the use of steroids in my condition so I made a choice and stuck to no prednisone of any dosage. I still need a doctor that will prescribe IVIG to me and the chances of that happening in Chicago are slim to zero.
The nature of CIDP is that you could be worse and could be better and your symptoms may never be the same and it can take years before the disease has developed to be completely diagnosed.
This past january I was at my worst and clinically I was diagnosed with CIDP since I have taken great care in eating an anti-inflammatory diet and though much better than I was in January I still suffer daily from symptoms.
If you decide to continue with steroids please do the tests the lady in Norway requested you get done this is the SPEP and IPEP it gives an indicator on how your immune system is functioning. The doctor reading the report will need to take into consideration what effect the high dosage of prednisone as well as IVIG have on the report as these should be done before prescribing any treatment.
In my case I had an abnormal activation of the B cells last year in march 2006 as well as abnormal levels of elevated proteins in my CSF and an abnormal EMG/NCV only to find that now when I do have more complicated problems the B cells are back within borderline range and my EMG/NCV was normal and yet I have a problem with speech at times and difficulty walking in additon a paralyzed bowel and neurogenic bladder.
If you decide that steroids are necessary then please consider pulse steroid treatment which would be one dose solumedrol followed by 5 doses of dexamethasone all injections no oral steroid. The combination of long acting and short acting work well in reducing inflammation which is the main goal and is better than just solumedrol alone. My lyme’s specialist worlks woith other doctors on the line with the latest in treatment and reserch options and sofar it is only by her help that I even have a diagnosis and an option for treatment. It is my finding that doctors dont take to well to the advice or diagnosis of other doctors and take it at times as a personal attack. These doctors don’t understand the complicated nature of CIDP and it is highly unlikely that any two individuals with CIDP will exhibit the exact same syptoms. Keeping that in mind your doctor who is your advocate needs to focus on YOU and make sure you are getting better.
If you can show the doctor the DVD from the foundation that clearly shows atleast two distinct lines of treatment one is the oral prednisone and the other the IVIG. It doesn’t mention both at the same time.
My advice stick to the IVIG make sure the infusion rate is slow and you will have very little side effects and stay away from all types of steroids if your body is responding well to IVIG.
My deepest best wishes and prayers.
AnonymousJune 14, 2007 at 9:25 pm
I was recently diagnosed wirh CIDP, therefore i cannot call myself and expert on the issue, but to the little i know, it sounds that you are taking too much medicinel I was on prenisone for 4 months and i had no effect on me, i was feeling just as i was feeling in the beginning of the treatement, but with the horrible side effects: moon face, mood swings, weight gain, acne…. My neuro decided to stop the prednisone and to continue with IVIG and immuran. I still take some prednisone because it is dangerous to interrupt it, it has to be gradual. Now i am waiting to see the ivig results (it is only been a few days since i took it), but the doctor says the prednisone is not necessary anymore. I agree with the rest,if you’re responding to ivig well, why should you star a treatment, like prednisone, that has horrible side effects? Discuss it with your neuro.
I wish you the best of luck and i am happy IVIG is working for you. Greetings from Mexico.
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