Questions on Prednisone, Cellcept and Imuran

    • Anonymous
      February 7, 2009 at 10:18 pm

      Its been awhile since I posted, but I have been visiting the forum from time to time. I’ve been on IviG every 4 weeks for the last few years and its worked well, but I have had some deterioration in my condition and now my neuro wants to add one of the above.
      He has pushed for Prednisone as the most likely as it is cheap, it works and is easy to monitor. The only drawbacks are the side effects.
      He tells me Cellcept may or may not work and it could be months before any determination can be made as to effectiveness.
      Imuran is another possibility, but he did not seem as optimistic on that one.
      I would very much appreciate any information and experiences anyone has had with the drugs. I’ve been reluctant to go to the steroids, but my neuro says that since I am otherwise in good health, that the side effects won’t be too bad.
      I still have major problems with muscle cramps that keep me from sleeping more than about 4 hours at a time. The neuro suggested Vitamin E, riboflavin and said some people have had success with Brewer’s Yeast! Any comments?

      Thank you all.

    • Anonymous
      February 8, 2009 at 5:58 am

      There was discussion at the GBS/CIDP Symposium in November about alternative treatments. Some of this was summarized in the thread “Notes of CIDP”. First to state, there was a good deal of enthusiasm for pulse steroids–given at high doses once a month typically over several days–by mouth or by vein– or at moderate doses weekly–more likely by vein, but also potentially by mouth. Gareth Parry is one of the neurologists that has published on pulse steriods and I have a couple of his papers. I will look for them. The most common discussion were decadron 40 mg by mouth for four consequtive days a month or solumedrol (methylprednisolone) by vein weekly. The side effects are a good deal less than daily or even every other day steroids and the efficacy seems better. One quote was of 10 people treated with the decadron pulses, six were much improved (“in remission”) after 6 months. Steroids have the benefit of being better studied and as well often seeming to add to/build on the benefit of IV IgG. They also work faster.

      The discussion with Imuran (azathioprine) or CellCept (mycophenolate) was that they are really slow to act–taking up to 12-18 months. In a survey of 300 people with CIDP in the US, 13.6% were taking Imuran to help with their CIDP (many with other therapies as well or before). By comparison, about 6% took cyclosporin, 5% methotrexate, 4% mycophenylate, and 3% cyclophosfamide. There have been concerns about the degree of immunosuppression with CellCept and the risk of serious second problems–such as lymphomas and perivascular leukoencephalopathy which causes the brain to not work right.

      there was also pretty good enthusiasm for Rituximab as a promising therapy although there is not much published about it yet.
      Check out that thread in the Main Forum posted in mid November 2008. Good luck.
      WithHope for a cure of these diseases.

    • Anonymous
      February 8, 2009 at 9:17 am

      Hi, Don.

      Three years ago IVIg stopped working for me and I started a downward spiral that left me in a wheelchair. Oral low dose steroids did nothing but make me so nauseated that I couldn’t eat (but at least I didn’t gain weight :rolleyes: ).

      Last summer my neuro started me on monthly high-dose IV methylprednisolone. As WithHope said, the side effects are fewer than with the lower dose orals — the only problem I have is what I classify as withdrawal: for a couple of days after my infusion I feel pretty rotten, a lot of pain, etc. But once that’s over I’m okay until the next infusion.

      The steroids gave me about two weeks of improvement every month. I’m now also on azathioprine (Imuran), which after four months appears to be extending the improvement through most of the month, which is enabling me to work at rebuilding muscle — I’m out of the wheelchair and managed to walk nearly three hundred yards yesterday with crutches before I had to stop for rest.

      Of course, no two of us is affected the same by CIDP or the treatments. But it’s working for me.

      Keep fighting,

      Deb
      London

      BTW, with azathioprine you need to have monthly blood tests to check for liver function and blood count.

    • Anonymous
      February 8, 2009 at 1:02 pm

      Another idea could be to switch up your frequency of IVIG. You could ask to get infusions weekly or bi-weekly to see if that helps too.

      Kelly

    • Anonymous
      February 9, 2009 at 9:33 am

      Thanks for the information. I’m leaning towards the prednisone as it does appear to be the most known and manageable treatment. I guess its all about finding the right formula. So far I’ve been lucky that my CIDP is more frustrating than debilitating, but tere has been slow progression and no remission, so who knows what the future holds. For now, I know it won’t kill me, it hasn’t caused any serious mental impairment;) and it hasn;t affected bowel and bladder. All things considered, there are a lot worse things out there.
      Thanks again.

    • Anonymous
      February 9, 2009 at 10:13 am

      [QUOTE=DonMo60]Its been awhile since I posted, but I have been visiting the forum from time to time. I’ve been on IviG every 4 weeks for the last few years and its worked well, but I have had some deterioration in my condition and now my neuro wants to add one of the above.
      He has pushed for Prednisone as the most likely as it is cheap, it works and is easy to monitor. The only drawbacks are the side effects.
      He tells me Cellcept may or may not work and it could be months before any determination can be made as to effectiveness.
      Imuran is another possibility, but he did not seem as optimistic on that one.
      I would very much appreciate any information and experiences anyone has had with the drugs. I’ve been reluctant to go to the steroids, but my neuro says that since I am otherwise in good health, that the side effects won’t be too bad.
      I still have major problems with muscle cramps that keep me from sleeping more than about 4 hours at a time. The neuro suggested Vitamin E, riboflavin and said some people have had success with Brewer’s Yeast! Any comments?

      Thank you all.[/QUOTE]
      Hi Don, I was on Prednisone for 9 months it stared in the hospital after having 5 ivig treatments, I was weaned off them slowly at one point I was dowm to 5mgs every other day then I stopped but when I stared in hospital I was taking 150mgs per day the side effects to me were not bad weight gain and the round face I looked like a squirrel lol and then I went through puberity again with the pimples so they to me were not that severe and the end results were great, my muscles regained strength and with excrise it has been wonderful..not that I’m 100% but compared to last year I am so good luck and keep smiling Brenda:rolleyes:

    • Anonymous
      February 9, 2009 at 6:45 pm

      Don,

      I started treatment with oral prednisone in 2000. I was off steroids by 2002 or 2003. I did imuran at the beginning. I did not do cellcept, although we (my neuro and I ) talked about it.

      Prednisone, started out at 60 per day for 4 months or so then started tapering down. Then I was up and down dosage wise for a few times, finally getting off altogether. I think it is a good treatment protocol, BUT, only for short term use. The long term side effects are so bad. But really, the benefit you will get happens soon. The rest is getting off the drug safely.

      Imuran really didn’t help me, but it has helped others. AND, if you read here enough, you will find out that we all gain with different meds and dosages. So, I wouldn’t be suprised that it would take a few tries to get your medication regimen straightened out.

      Take care
      Dick S

    • Anonymous
      February 12, 2009 at 8:51 pm

      Thanks Dick. My doctor says he is going to start me on 30 a day as he thins that will be a good starting point. If it’s only short term, that’s okay by me.
      Hey, how’s your golf game?

    • Anonymous
      February 14, 2009 at 12:35 am

      Hello DonMo60,

      Yes, it can take months for CellCept and Imuran to have significant effect. I have heard that CellCept should show effects in 3 to 4 months, while Imuran can take 6 to 12 months. There was considerable hope that CellCept, which seems to have a relatively specific effect on the immune system, would be effective against CIDP. At the Symposium in November, it seemed that this hope had diminished. Imuran seems to have a more general effect on the immune system, and so may be more effective. Without clinical trials, though, there is no definitive answer.

      As to the cramps, I find that they are a symptom of deteriorating condition. I don’t have any comments about the proposed remedies, but if your condition improved, I suspect you would have fewer cramps.

      Let me tell you my treatment story, as it may help answer some of your questions. My first treatment regime was steroids only. That worked to rein in the symptoms, but only for a while. We then added plasma exchange. That worked quite well, but I did not want to stay on steroids for a long time. We tapered down to no steroids, but I started to need plasma exchange more and more frequently. We then added CellCept to the plasma exchange. It seemed like the CellCept had little effect. At the end of four months, my plasma exchange was almost as frequent as at the start. Perhaps we should have tried for 6 months, but the frequency of plasma exchange was just too much.

      When we decided to switch to Imuran, I also wanted to add steroids again, since we knew that worked. I started with 60 mg every other day, with the idea that we would continue that for a while, to stabilize and improve my condition, then taper to near 30 mg every other day, if possible. We would do this treatment for a year, to give the Imuran a good chance to take hold. As expected, the steroids and plasma exchange started to improve my condition almost immediately.

      In the mean time, I had read about the pulsed steroid route. After six months, we switched to that route. I started with 650 mg once a week, tapering by 100 mg every four weeks until I was down to 150 mg each week and then taper as symptoms warranted. I believe the Imuran is helping, if only to reduce the amount of steroid I need. The goal is to eliminate the prednisone completely. The large dose pulse steroids improved my condition considerably, to the point where I could do things I had forgotten I used to do.

      While I am happy to continue taking steroids, I pay a price. I have had surgery to remove the steroid-induced cataracts. I am in a pre-diabetic stage, even with being somewhat careful with my diet (that is, I am not anywhere nearly as strict as I should be, but I do deny myself many of things that I used to eat). I take calcium, vitamin D, and Fosamax to try to ward off the osteoporosis that steroids can induce. I take Pepcid to reduce stomach acid, something prednisone increases. I am fortunate that I have not gained weight or developed the typical “moon face” and “buffalo hump”. I am irritable for about a day and a half after taking my dose. I find that I have ome trouble sleeping for a day or two after the dose. The irritability and sleeplessness were particularly bad with the largest doses.

      My point is that you know should learn what the side effects of steroids are. Make sure you read the prescribing information. Ask questions, of us who take the drug and of your neurologist and general practitioner. Weigh the consequences carefully. You may still decide to use steroids, but you will know what to look out for.

      Because I am not a doctor, you should take my advise with a large grain of salt. That said, if you decide to add steroids to your treatment, you should consider also adding Imuran or CellCept. Because it takes so long for the immunosuppressants to act, you may not want to wait to get started. [B]However[/B], before adding steroids, try more frequent infusions of IVIg, keeping the same dose per month for three months, assuming you can afford the time from work. If that does not work, try a somewhat larger dose. If that does not work, then add steroids and immunosuppressants.

      Godspeed in your treatment choices,
      MarkEns

    • Anonymous
      February 14, 2009 at 10:23 pm

      Don,

      Cidp has destroyed my balance. I cannot shift my weight powerfully anymore, or I will fall down. The action that happens to my feet when I transfer weight from left to right on the backswing and visa versa on the downswing trashes my feet in the most obnoxious way.

      I can do a big backswing and no followthrough, OR little backswing and a medium followthrough. Since I used to play at a professional level, I am completely frustrated at my lack of skill. Tee shots went from 300 plus to about 185. Hitting a five iron 200 to not being to get a 5 iron airborne.

      Can you tell I am bummed out about it?

      Maybe one day, down the road, I will try it again, for fun and pleasure of friends and the outdoors. I am just not there yet.

      I take it that you play also? Has CIDP affected your game much ?

    • Anonymous
      February 15, 2009 at 12:09 pm

      Yes I play and can still get around, but I know what you mean about balance.
      I was a 10 handicap and improving when this all started. I haven’t been as active, but am a 15 and continually going up.
      I describe my game now as feeling drunk on the tee and having difficulty finding a steady base to swing. Very inconsistent. Similar to you, I try to adjust and can’t find any consistency. I also find that I don’t have nearly the same body sense to feel the swing and now how to make a correction.
      Putting I describe as feeling hungover, where it is difficult to look down and maintain balance and just don;t have the same feel. I also lose strength after about 5 or 6 holes and the back nine (when I play 18) can be a real tough time.
      No matter how frustrating, I won’t stop as I am thankful I can still get around.
      Of course, my wife doesn’t accept me using the CIDP as a reason not to do yard work if I keep playing golf! 🙂

    • Anonymous
      February 17, 2009 at 10:36 pm

      Don,

      One of the things I tried to do with the golf swing was to play the ball off the back foot and “trap” it. A 7 iron will fly about like a 4 iron, but only 7 iron distance. Everything is hit with a low hook. BUT on the upside, the followthrough can be shortened since contact has happened so far back from center. Weight shift is minimized. The swing comes from the inside out, so line up right and let ‘er hook.

      The same could apply for woods. Tee off with a low teed three wood. If you try to do this with a driver, there won’t be enough loft to get the ball airborne, you need 13 to 15 degrees.

      Wedges get a lot of backspin this way.

      Low hook knockdowns. But it works !!

      Dick S

      PS, with the putting balance, try an open stance with the front foot opened up 15 to 20 degrees. By not having your feet “square” you widen your balance point and should be more stable.

    • Anonymous
      February 19, 2009 at 1:59 pm

      Thanks Dick. Good to get advice that’s about something fun. I’m looking forward to Spring as too cold and too hot make the outside activities a little more difficult.

    • Anonymous
      March 19, 2009 at 11:43 pm

      Hi Don and all,

      It has been awhile since I have posted, but I read and search the blogs for info all the time. I was diagnosed with CIDP about 5 years ago. I tried IVIG for over a year, but it never truly helped me. Given the cost and time commitment I gave up on it. The results just weren’t there for me.

      I tried Cellcept, but after several results it didn’t change much. In the meantime, my pain level soared and nothing much was helping. That’s when I switched to oral Prednisone. I started at 60mg/day. I felt better almost immediately. My CRP and Sed rates came down (markers of inflammation). I was less fatigued. Pain was less. It really felt great to be able to lead a more normal life.

      But, my Doctor was afraid to leave me on Prednisone for long-term therapy. The drug was not designed for that purpose. I did gain weight and my face did get kind of puffy. I started cutting back my dose. Almost immediately, my symptoms came back. Now I am at 7.5mg a day and have all my problems back.

      I just started IV Methylprednisolone 500mg this week. The plan is for me to have it once a week. So far, I do feel a little irritable. My pain is pretty widespread and my energy is non-existent. But, I have only done it once. Is this something that takes time? It’s confusing to me because oral Pred. was so fast acting. I guess I just don’t know what to expect. I did see a drop in my Sed rate today. Maybe you just have to be very patient with the IV version.

      Have any of you heard of or tried Cymbalta. It is supposed to help with pain and anxiety. There have been studies that indicate it could really help with Fibromyalgia/ CIDP pain. My Doctor asked me to consider it. I just wondered if any of you had experience with it.

      I guess I am just having a down day and need to write to people that understand. It’s just so hard to feel crappy every day. I know that it could be worst, but that knowledge isn’t helping much today. I just want to wake up without pain and have a really productive day. Instead, I watch the clock so I can know when I can finally take more pain meds.

      I am also seeing that stress can really cause flare-ups! My husband got laid off from his job in November. He can’t find anything! Plus, he just came home from the hospital after having hip replacement surgery. It just couldn’t be put off anymore. Plus, our insurance is over the end of the month. From then on we will be paying for it ourselves. I guess we will pay for it from his unemployment checks! He can’t get around yet, which means a lot more stuff for me to do. Assisting him is just throwing me over the edge!

      The poor guy is doing really well considering his circumstances and that’s all I can do is feel bitchy. Now, I have to go get the newspaper, feed the dog in the AM, water outside, take in trash cans, etc, etc, etc. Bring him drinks, fix meals, answer phones, help him dress, get him toilet paper, etc, etc, etc.

      BOY, I REALLY DO NEED TO VENT!!!! I honestly feel like I am going to explode. I know that my husband doesn’t get it. I also know that most of you probably do. Please post back so I have a chance at avoiding a stroke! Just knowing somebody understands will really help me.

      By the way, my muscle cramps went way down when I added Potassium. (K-Dur 20 meg) I found that if you can keep it up around 4.0 that will eliminate spasms and cramps. Please check it out because they really hurt.

      Thanks for giving me a place to post my feelings. A place where I won’t be judged too harshly.

      Best to all of you,
      Sandila 🙁