AnonymousNovember 17, 2008 at 10:09 am
fellow nerve challenged friends,
i’ve just begun cyclosporine, 5 days ago. i take a total of 325mg per day. i’m also down to 30mg of prednisone with the hope to completely wean off of it. the side effects are bad.
i would love to hear feedback from others who have tried cyclosporine– or those who know something about it aside from the usual internet stuff.
i’m so tired of this disease….
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AnonymousOctober 5, 2008 at 5:04 am
I was wondering if anyone here has been on this immunosuppressant for CIDP, either past or present?
If you have, could you please share your experiences good or bad and tell me how it helped your disease, or didn’t and any side effects if you had them.
I’m aware of all the lab work and drug levels that need to be done, so no need to go into that.
Thanks in advance!!
AnonymousOctober 5, 2008 at 10:17 am
It really depends on which kind of Cyclosporin you will be taking. IV form or the Pill form! And what dosage they plan on giving you. All immunosepressant drugs have their good and bad to them. But so does prednisone! A low dose of this drug might not cause any problems at all. But then a high dose may make you feel bad at first but then you start feeling better.
Most doctors while on these drugs want to keep an eye on your labs and check liver functioning and will order labs frequently so to keep an eye for any abnormal numbers. If you are on the IV then you will experience different side effects which may not be fun at first but that’s because you are on a high dose. But a low dose pill form may not be as bad.
I had this in the IV form many years back but could not tolerate it and got switched to Imuran. Imuran for me had less side effects. And they ended up giving me the pill form of Imuran. A dose I could tolerate. Each person is different and each person may react differently. I just could not take the cyclosporin but that was me! And have met others that could take it! Immuran to me was less toxic and the side effects were not as bad. But even with Immuran you have to get liver profiles done on a constant basis to check liver functioning.
Cyclosporine also has some risk factors but is used in many transplant patients. But other drugs have also been used. The best thing is to talk with your doctor first and find out the dosage and then look it up online. That would give you a better idea and what you would be dealing with. The dosage can really be very important at knowing your risk factors!
AnonymousOctober 6, 2008 at 3:55 am
I have no personal experience with this drug, but a number of the children I work with are on it for autoimmune diseases or to prevent “graft versus host disease” or organ “graft” rejection. My understanding is that cyclosporin is probably the “gentlest” of the immunosuppressant agents–gentler than Imuran or CellCept or perhaps prednisone/IV steroids (definitely if used longer term). The two main things that I want to add to watch out for with cyclosporin are high blood pressure and kidney damage. High blood pressure is pretty rare in children, but for those on relatively high doses of cyclosporin almost all have this. It is important to drink well if taking cyclosporin to protect the kidneys. I doubt you will be on “transplant” levels of cyclosporin, but Linda is right the side effects depend a lot of the dose given to you. Most of the treatments for autoimmune diseases use lower doses than that, at least in children. I am sure that your doctor will talk to you about side effects, but one thing to watch out for is feeling jittery or jumpy or queasy. It this happens, it may be that the level in your bloodstream is high.
One other point to make is that there are at least two major forms of cyclosporin and they are processed by the body differently. So it is really important to insist on getting the same kind of cyclosporin each time it is filled–same brand or form of generic. Cyclosporin blood levels are affected by a number of medicines including some antibiotics and some stomach medicines as well as St Johns Wort and lots of grapefruit juice so make sure all your doctors and the pharmacist know you are on cyclosporin. On another thread, the risk of lymphoma and lymphoproliferative disease has been talked about. there is that risk with any immunosuppressant, but on the span of drugs used, cyclosporin has less risk of that than, for example, CellCept because it is generally less immunosuppressive and acts slightly differently on the immune system. People always have to balance the risks of any drugs with how sick you are and the potential benefits you might get from different levels of immune suppression.
WithHope for a cure of these diseases.
AnonymousOctober 13, 2008 at 1:46 am
I have been on Cyclosporine for nearly two years (gel capsules 2x daily). It has given me my first sustained remission — I originally had responded to IVIG, but effectiveness decreased after a few months, then I was on Imuran+Prednisone with no noticeable response. Plasmapheresis helped, but sustained improvement only started with the Cyclosporine.
My last plasma exchange was in April 2008. I am still on Cyclosporine. I am back at work, I now have reflexes in my legs, and nerve conduction studies confirm the improvement.
Things to watch out for: I go for blood work monthly, which among other things monitors kidney function (the same tests you referred to, I believe). I have noticed that Cyclosporine affects my hydration, and I generally stop taking it for short intervals (always informing the doctor who is monitoring me) if I catch a flu or cold that might tend to dehydrate me. I have also noticed a slight thickening of my skin in places, which may or may not be a side effect. Since I had marginally-high blood pressure when I started on Cyclosporine, I was put on a beta blocker (increased blood pressure can be a side effect), which I do not seem to need any more now. Overall, my use of this medication has been problem-free.
It is likely that I will stop all meds some time next year, to see if my remission can be maintained without them.
AnonymousOctober 13, 2008 at 2:05 am
Wow, Keith! Thanks so much for the informative and optimistic post. This is something I will likely have to do the end of the month or so.
I have been on IVIG for 4 years and failed Imuran and Cellcept already. The drug levels and timing has been my main deterrent, but since I am sliding backwards since stopping the Cellcept (less than fully therapeutic dose and too low WBC count), I feel there is no choice. It certainly would be nice to get off or reduce the IVIG infusions.
Thanks so much for sharing your experience.
AnonymousOctober 14, 2008 at 4:41 am
Was just flying over the forums and read a wee bit of yours but am not up with all your treatments etc so just ignore this if it is too out there or doenst follow on etc, but…..
have you looked at the Pulse methylpred option as a possibility before starting cyclosporin.
Just htought it may be an option worth looking at.
all the best
AnonymousNovember 17, 2008 at 9:55 am
i’d love to know more about your course of treatment.
i was dx with cidp in dec 07. i have steadily gotten worse…
tried ivig, 1 loading dose. it made me worse and so we halted it.
i’ve been on high dose oral prednisone since june– it helped/helps– but the side effects are becoming intolerable. 5 days ago, i began cyclosporine.
it seems it has done wonders for you. are you on any other medications? can you tell me how many mg you take? what has your experience been? do you feel your disease is in remission?
i am taking 325mg daily. i have felt some new aches and pains from it– did you? i am also full of energy that comes into conflict with my pain level. meaning, i want to do more in life then my pain allows. i wonder if that is a side effect that will subside as my body gets used to the drug. also, i am still on some prednisone, 30mg now. my neuro wants to wean me off of it but wants to 1st see that the cyclosporin will have efficacy…
hope to hear from you,
AnonymousNovember 18, 2008 at 12:51 am
I was diagnosed in 2004. I had a brief remission on IVIG, but it became less and less effective, until in early 2006 I was put on prednisone+imuran (steroid sparing regime). That didn’t help, and I continued to decline, until I did not have enough strength to walk outside of my small apartment, and spent most of my time in bed. I was switched to plasma pheresis, twice weekly at first, and showed slow improvement but still had to use a walker. I didn’t get sustained improvement until late that year when I started cyclosporine, at first 100 mg twice daily, then 125 twice daily for a few months, then back to 100 twice daily. I had a slow recovery, and was on a walker until March 2007, then on one cane until August of that year. During that time I was also weaning myself from prednisone, and taking two blood pressure medications. I am now working part-time and also hoping to finish my MA, and the only medication (besides vitamin and mineral supplements) that I take is cyclosporine. I stopped plasma pheresis in March of this year and do not seem to need it. Some time next year, I am told that one of my doctors may suggest I stop the cyclosporine to see if I start to relapse. It may be possible that I don’t actually need it.
Aside from being woefully out of shape, and experiencing some minor tingling and numbness, and having some problems with fatigue, I appear normal to everyone, and can run for the bus (although I look funny doing it) and climb the stairs to the 5th floor.
AnonymousNovember 18, 2008 at 2:38 am
I’ve been on 75mg twice a day cyclosporin for a month now as a way to help ween off the steroids, so far it’s been trouble free and I feel like my strength has improved and the roller coaster ride from the pulse steroids has been dramatically reduced if not eliminated.
AnonymousNovember 19, 2008 at 2:36 pm
Last Sept. when it all came to a head I was all but paralyzed from the neck down….can remember almost crying when I had to ask the lady at the hospital to take the lid off of the dinner tray so I could try to feed myself because I couldn’t move my arm enough to reach it and couldn’t lift the fork to my mouth without using both hands. At that point my neuro. had ran 2 bags of IVIG and decided to switch over to solu-medrol. They ran a gram a day of that over 5 days then transferred me over to the rehab hospital where they tried a gram a week all in one shot, my body couldn’t metabolize that much at once so they decided to run it 500mg twice a week and have been working on weening it down since then. The neuro. put me on the cyclosprine a little over a month ago to help me get off the steroids because the side-effects are really getting nasty, so far have not noticed any bad side effects from the cyclosporine, the very good side of it at least so far is that the roller coaster ride from the pulse steroids has been all but eliminated and my strength and endurance levels are for the most part steady, can still tell when the pred. is wearing off but not as bad as before.
AnonymousSeptember 13, 2010 at 10:29 pm
[QUOTE=ubbietom]I have been on cyclosporine since July 22, 2010 at a dose of 400 mg /day. Can any one tell me how long it took for improvement to begin?
I am the one that originally started this thread 2 years ago in 2008. I went on cyclosporine and had good results in less than 2 weeks (I was at a much lower dose, though, 75mg/day to start).
However, in the same period of time I experienced terrible blood side effects of thrombocytopenia, WBCs=1.4, and my tongue turned black and I developed all sorts of super-infections. It’s too bad my bone marrow could not tolerate it, because I did feel better in that first week.
If you read some of the longer posts, the posters give how long it was before they saw results within their posts.
How is it working for you?
AnonymousSeptember 17, 2010 at 11:41 am
So far, I’m doing okay. No improvement, but I don’t think I’m any worse. If that’s true that is very good news and could be a precursor to improvement.
I see my doctor next week on the 23 of Sept.
Overall I feel pretty lousy, with tremor and a sick stomach most of the time but nothing severe enough to make me quit.
I got braces a couple of weeks ago. They are a godsend as falling was a major issue. They protect against foot drop and knee collapse.
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