Friday, July 25, 2014 12:00 pm – 12:00 pm EST This discussion is archived.

Today’s live discussion is about the management and side affects of prednisone. We are pleased to have Dr. Mazen Dimachkie with us to answer your questions about this life-saving but troublesome drug. Dr. Dimachkie is at the University of Kansas Medical Center, where he directs the Neuromuscular Section and also serves as Professor of Neurology and director of the Electromyography Laboratory and two fellowship training programs in Clinical Neurophysiology and in Neuromuscular Medicine. He is a member of TMA’s medical advisory board and will be joining us at the Annual Patient Conference in September.Many of you have submitted questions about this topic, and you are also welcome to submit questions in the course of the session. To avoid repetition, Dr. Dimachkie will pass over questions that have already been answered. Since we have limited time, please try to keep your questions of general interest. A transcript, with the names of the participants removed, will be available shortly after the live discussion.Thanks, Dr. Dimachkie, for joining us today.

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TMA:

Dr. Dimachkie:

Thanks

  • Interaction with ILD

    Participant:

    My husband has Polymyositis with ILD. Two years ago he needed sustained, high levels of Prednisone to combat an opportunistic skin condition that persisted for 18 months. During that time, his lung function plummeted and oxygen supplementation was seriously considered. After recovering from the side condition and weaning back off Prednisone, however, his lung function has returned to normal levels. Is it possible that Prednisone creates some inflammation in lung tissues or pathways that might cause a loss of oxygen uptake? If so, are there safer alternatives to consider when interaction with ILD would be a concern?

    Dr. Dimachkie:

    I am not aware of prednisone causing lung inflammation.

  • Long Term Use

    Participant:

    What permanent damage does long term use of prednisone cause?

    Dr. Dimachkie:

    The main 3 complications of high dose prednisone are diabetes, weight gain and high blood pressure. These are mostly reversible as prednisone dose is reduced. These are much less likely to occur while someone is started on low dose prednisone.

  • IBM and Short Term Prednisone

    Participant:

    I have IBM. I have read on some of the Facebook IBM pages that some individuals who have IBM take prednisone when they are travelling to help with leg pain and swelling. Is there any advantage to taking prednisone short-term to help with the ability to walk, leg pain and swelling when travelling/vacationing. (In particular, long trips in a car or travelling by airlines.) Thank you.

    Dr. Dimachkie:

    Thank you for sharing the information from the facebook chat. I do not use that for my patients.

  • Methotrexate and sIBM?

    Participant:

    Could you discuss any research or professional observations regarding methotrexate and sIBM? Thank you Dr. Dimachkie for participating in this discussion. I was diagnosed with sIBM over 3 years ago, although I had symptoms for a number of years prior. I am 62. My neurologist did not prescribe prednisone (or anything else) for my condition. Could you discuss any research or professional observations regarding methotrexate and sIBM?

    Dr. Dimachkie:

    Unfortunately, there is no good treatment available for IBM. I think IBM pts should enroll in research studies so that we can hopefully find effective therapy.

  • Recommended Dose

    Participant:

    What is the recommended initial dose?

    Dr. Dimachkie:

    The starting dose of prednisone in adults with myositis is 60 to 80 mg per day.

  • Other Options?

    Participant:

    I have PM and have been taking 5 mg Prednisone for a couple of years. My last bone density test showed that I moved from osteopenea to osteoporosis, plus no skin is thinning and easily bruises and tears and my body composition has changed drastically to excessive fat in my upper arms, trunk, and upper thighs. I am worried about these recent changes and want to know what I can do to reverse them. What options do I have that might be better for controlling my PM?

    Dr. Dimachkie:

    I am not sure that doses of prednisone as low as 5 mg can cause bone loss. However, in pts on 10 mg or more of prednisone, weaning the dose to lower levels helps reduce the risk of bone loss. Sometimes, this requires the use of helper drugs such as methotrexate, imuran or cellecpt.

  • Health Effects

    Participant:

    I have polymyositis and have always responded well to prednisone.Are there any health effects from taking prednisone long term? I have been taking it off for on for quite a number of years and am currently taking 5 mg. for about 2 yrs. now. I’ve been doing very well and my doctor hesitates from taking me off right now completely. Thank you.

    Dr. Dimachkie:

    I am have many patients on low dose prednisone like you with minimal if any side effects.

  • Low Dose of Prednisone

    Participant:

    I was diagnosed in 2008 with Polymyositis. I am down from 60mg to10 mg of Prednisone daily along with 20mg of Methotrexate weekly. I have tried several times to reduce my Prednisone but I feel so horrible, my muscles hurt and I feel as if I just can’t function. I question how long I can continue on this low dose of Prednisone without suffering bad side effects? Can I stay on it for the rest of my life?

    Dr. Dimachkie:

    Some patients may have to stay on low dose prednisone for the rest for their lives. Bad side effects occur with high dose prednisone.

  • Prednisone Taper in Myositis Patients

    Participant:

    As a medical provider myself as well as a DM patient, I’d be very interested in your view of the “art” of managing the prednisone taper in myositis patients. What I learned in clinical therapeutics in school and have observed in myself as a patient don’t necessarily match. Has it been your experience that myositis patients seem to need a longer, slower taper, even at low doses (7-8mg and lower) to avoid a flare? If so, why do you think that might be the case? Thank you in advance for your thoughts on this matter.

    Dr. Dimachkie:

    As you suggest, I usually use a slow taper of low dose prednisone. I am not sure there is a good explanation.

  • Safe Long Term Dose

    Participant:

    I’m a 55 year old female Asian who has been diagnosed with Antisynthetase Syndrome, Polymyositis and Interstitial Lung Disease. I also have the secondary symptoms of Sjogren’s Syndrome and Raynaud’s phenomenon.I’ve been on Prednisone since my diagnosis in Sept. 2008. I have never been able to get below 10mg without having a relapse. I just went through another relapse 2 weeks ago and now back up to 40mg daily from 10mg (this 10mg level only lasted 6 months). I’m also on 2000mg Cellcept and Bactrim. We tried 3000mg Cellcept but it made me dizzy and caused stomach problems.Since 2008, I’ve been yo-yoing with Prednisone and none of the first tier drugs (i.e. Prograf, Imuran, Cellcept) are helping to keep me off or lowering to a more reasonable level of Prednisone. Recently it was suggested that I try Rituximab but my insurance denied it because they said it’s not FDA approved for my condition, only for those with Rheumatoid Arthritis, Non-Hodgkin’s lymphoma (NHL), Chronic Lymphocytic Leukemia and Wegeners Granulomatosis.Needless to say, I’m frustrated and disappointed that because it’s not FDA-approved, I’m turned down for my particular condition.My question to you, what is a safe level (long term) for someone like me that should or should not take Prednisone? Do you have any other recommendation? Thanks for your time and consideration.

    Dr. Dimachkie:

    I prefer the prednisone dose to be at or below 10 mg per day if possible.

  • Prednisone Only?

    Participant:

    I have had DM 14 years. I only use prednisone with the average dosage being 20-40 mg. I work and maintain my lifestyle; with my eyes wide open to the probable side effects. I have been on methotrexate and plaquinel in the past. From everything I read and understand, any additional drugs also have very serious side effects. What are your thoughts of maintaining on prednisone only?

    Dr. Dimachkie:

    I prefer to taper prednisone dose at or below 10 mg per day or equivalent dose for patients who need to be taking it long-term.

  • Increase Dosage?

    Participant:

    I received IVIG infusion treatment few months ago. Only thing improved was slight difficultly in swallowing.I am now on Predinsone , 20 mg every other day which seems to help swallowing even more, also feeling little stronger and latest blood test showed my CK level down to normal, it was between 900 and 1k.Do you think the combination of IVIG and Predinsone helped ? Or just the Predinsone, should I increase dosage?

    Dr. Dimachkie:

    It is hard to tell without knowing exactly when you got IVIg and when the prednisone was given and when you started getting better.

  • Getting Off Prednisone

    Participant:

    I have been on Prednisone since 2006 when I was diagnosed with Polymyositis. After a year on it I found that I was miss diagnosed and really have I B M. Have been trying to taper of it with no success. I get down to 10 or 12mg And can’t stand the aches pains and tiredness, I have been trying to get off it now for 8 years. Any ideas on how I can get off this awful drug I hate the side effects!

    Dr. Dimachkie:

    Sometime i resort to a very slow taper by 1 mg at a time and if not successsful, I may try to treat the aches.

  • Weakness and Aching

    Participant:

    Originally diagnosed with PM, I now have probable IBM. I have been on Prednisone for 6.5 years and would like to get off due to side effects, mainly osteoporosis. I have been slowly tapering down from 5 mg per day for five weeks, and will be on 4 mg this (sixth) week, then alternating days between 4 mg and 3.5 mg for two weeks after that, and so on. When I tried to taper last time, I felt like I hit a brick wall at 4 mg, with full body weakness, and had to go back to 5. Weakness and aching hit me again over the weekend. Should I try to stick it out this time? Will my energy return? Do I have to take this stuff forever? The doctors feel prednisone is not indicated for IBM.

    Dr. Dimachkie:

    Every patient is different. I do not think that prednisone 5 mg daily increases the risk of osteopenia.

  • Adrenal Recovery

    Participant:

    Are there ways to expedite adrenal recovery after weaning off prednisone?When is prednisolone indicated instead of prednisone? If a transition is to be made, what are the indicators and how is this done?Aside from prescription drugs, and if vigorous exercise is out of the question, what are safe effective ways to treat insomnia caused by steroid use?Are there any alternatives to prednisone in the pipeline that are safer long term, that don’t so effectively shut down the immune system to result in other serious conditions?Thank you.

    Dr. Dimachkie:

    All good questions. Are there ways to expedite adrenal recovery after weaning off prednisone? Answer NoWhen is prednisolone indicated instead of prednisone? If a transition is to be made, what are the indicators and how is this done? Answer: In Europe they use prednisolone and in the US we use prednisone. They are slightly different drugs.Aside from prescription drugs, and if vigorous exercise is out of the question, what are safe effective ways to treat insomnia caused by steroid use? Answer: Please consult with your doctor.Are there any alternatives to prednisone in the pipeline that are safer long term, that don’t so effectively shut down the immune system to result in other serious conditions? Answer: There are research studies looking for drugs like that.

  • Decrease Dose

    Participant:

    Dear Dr Mazen Dimachkie,How are you?I have had myositis in 2011, am taking 10mg/day Prednisone now, and feel sore or pain sometimes of both hand. The rest muscles of my body are good. Is it possible for me to decrease the dose now?Thanks for answering my question.

    Dr. Dimachkie:

    The decision to change prednisone dose depends on your symptoms, the muscle examination done by the neurologist or rheumatologist and the blood test results.

  • Lower Daily Dose

    Participant:

    I am 84 years old and have IBM. having been diagnosed in 2005.My doctor recently suggested I take low doses of prednisone. I was always told that prednisone did nothing for IBM. but I felt I had nothing to lose so I started taking (two) 2 mg. daily. I have been doing this for the past 9 months. I really can’t say that it has helped my IBM; but it does make me feel better and I do have more energy; but will this low daily dose cause other problems?Thank you.

    Dr. Dimachkie:

    Low dose prednisone is generally safe.

  • Prednisone and IBM

    Participant:

    I have been told prednisone will not benefit IBM patients, do you agree?

    Dr. Dimachkie:

    I have seen a case of prednisone-induced weakness with IBM.

  • Expectation around Dosage

    Participant:

    Hello and TY for your time and consideration, i am 7 years into my path with DM w/pos Jo 1, i was told early on in my disease process that i had developed a condition known as “prednisone dependency” it was impossible for my level to be lowered without my CPK and disease symptoms increasing. I have now and always have had varying degrees of muscle pain with my disease. Is this a rebound effect of the prednisone ? And should I always expect to have this type of dependency on prednisone ? My current dosage is 9mg

    Dr. Dimachkie:

    After 7 years, odds are slim for coming off of prednisone.

  • Adrenal Glands

    Participant:

    How different is manufactured prednisone from natural corticosteroid produced by our bodies? I was once told that at 5 mg I would be at a ‘biological dose’ and should have no problem getting off of it. Well, it’s not been that easy. My last flare of PM came on as I was tapering down from 3mg daily to 2 mg daily. Going back to 3mg daily stopped the flare. Why won’t my own adrenal glands wake up, and what can I do to give them a kick in the pants?

    Dr. Dimachkie:

    Many patients are dependent on low dose prednisone.

  • Taper of Prednisone

    Participant:

    What is the best way to taper of Prednisone? The same amount every day – or tape off completely on odd days and then taper down on the even days?

    Dr. Dimachkie:

    It depends on the health of the patient. Every other day prednisone is not a good option for patients with diabetes and in those with uncontrolled hypertension.

  • Doing well on Prednisone?

    Participant:

    I have been on prednisone in various doses for about 2 years since diagnosed with DM in 2012. I’m down to 10 mg/day and 100 mg of imuran. My doc wishes me to get off of prednisone due to side effects. However, I have had NO side effects that I know of and have read about people being on prednisone for years(20+) with no problems. Is it possible my body “likes” or does well on prednisone? (I’m a 60 year old female)

    Dr. Dimachkie:

    It is always good to use the lowest effective dose of any drug including prednisone.

  • Squamos Cell Increase

    Participant:

    I’ve taken prednisone in doses ranging from an initial 80 mg to my current 12, every day for 15 years, to treat my PM. When I flare, my doc increases the dose, then weans me after we get the flare under control. I’m ok with the side effects of appetite (finally lost all the weight) and so far don’t have the serious ones like cataracts, osteoporosis, etc. What I have had is a large number of squamous cells (10 in the last 9 years) that my dermatologist thinks is at least partially due to the prednisone. Would you comment please? Is it possible it’s the prednisone or is it more likely my compromised immune system?

    Dr. Dimachkie:

    It is hard for me to tell.

  • Tolerance

    Participant:

    Does one build up a tolerance to prednisone (solumedrol)? I am a 68 year old female with PM and Interstitial Lung Disease diagnosed 4 years ago. I have had two pushes of 1000 mg solumedrol each day – one for 4 days at the initial onset and then another for 3 days 2 years later when I had a relapse. Each was followed by a regimen of 60 mg prednisone tapered to 5 mg over a calendar year. As the prednisone was tapered, cellcept was introduced and now I take 3000 mg daily, and am stable. If I am unlucky enough to have another relapse, will prednisone (solumedrol) work as it has before?

    Dr. Dimachkie:

    Yes, it should most of the time.

  • Maintaining a Low Dose?

    Participant:

    I am a 68 year old female diagnosed with PM with interstitial lung disease 4 years ago. I have had one relapse two years after initial onset. I am now stable for one year while taking a maintenance dose of 5 mg prednisone and 3000 mg cellcept. After another year of stability the plan is to very slowly taper the cellcept to 2000 or 1500 mg cellcept. Is there any reason to taper the 5 mg prednisone to zero – or should it be maintained as “insurance”.

    Dr. Dimachkie:

    You should discuss with your doctor which drug to taper. But I would only taper one drug at a time.

  • Steroid Myopathy vs. Muscle Disease

    Participant:

    I have been on long term steroids for years, and for a year the dose was 1000mg IV weekly, and 60mg orally a day. I know that long term steroid use can cause steroid myopathy, which has symptoms if muscle diseases. What are the various ways to determine the difference if increased weakness verses steroid myopathy?

    Dr. Dimachkie:

    Steroid myopathy has normal muscle enzyme and an EMG without fibrillations. It is a rare condition.

TMA:

This concludes today’s discussion. TMA would like to extend a special thank you to Dr. Mazen Dimachkie for spending the time to answer your questions. Thanks to all the members who participated.

Dr. Dimachkie:

Thank you for hosting me. Mazen Dimachkie, MD