Today we welcome Dr. Tahseen Mozaffar to answer your questions about autoimmunity. Dr. Mozaffar is director of the Neuromuscular Center at UC Irvine Medical Center in California and is a nationally-recognized expert in his field. He serves as a principal investigator and co-investigator in clinical trials of drugs for neuromuscular conditions, and is the author of many professional journal articles. Dr. Mozzafar is the chairman of TMA’s medical advisory board and a popular speaker at TMA’s Annual Patient Conferences. He’ll select the questions and both the question and answer will be visible at the same time. Please feel free to submit questions during the course of the discussion. TMA staff have submitted questions some of you sent through email, Facebook and Twitter. Although your TMA contact name will be visible during the discussion, it will not be on the transcript, which will be available after the discussion.Thanks to Dr. Mozaffar for being with us today.Ask a Question
I have dermatomyositis and take prednisone and IVIG usually successfully. I have recurring sinus and urinary tract infections. The antibiotics are a temporary fix and now after another round of antibiotic treatment I have inflammation (not fungal) on the tip of my tongue and in my female tissues. Any suggestions?Dr. Mozaffar:
It sounds like fungal infection despite you saying it is not fungal. You need to consult your primary care.
Are there identifiable risk factors for contracting dermatomyositis?Dr. Mozaffar:
We don’t fully understand the risk factors for DM at this point. Dr. Fred Miller’s group and Dr. Lisa Rider’s group has been working on figuring this out.
Symptoms from Drugs Vs. DiseaseParticipant:
My question is simply, how do you know what drug, disease, side effect or what ever is causing any given symptom. Also how does one know when to go to the doc verses over the counter drugs.Dr. Mozaffar:
Part of the medical education is to learn about effects of drugs and to differentiate them from effects of the disease. If in doubt about whether to take prescription or OTC drugs, ask your pharmacist or go see a doctor.
Stem Cell TherapyParticipant:
DM male 42yrs old. diagnosed 4 years ago. been on prednisone, metho, Imuran, no help. now on Imuran and IVIG last 18 months, CPK last month first time 150, strength ok. sgogrens syndrome SSA and SSB positive, jo-1 positive. dry eyes, dry mouth manageable. come off Imuran and/or IVIG, or continue? rituzxin? stem cell theraphy any where in the world for our condition?Dr. Mozaffar:
Need to continue. Rituxan only if the above treatments not working. No stem cell therapy available at this time.
Autoimmunity and IBMParticipant:
How much of a role does autoimmunity play in inclusion body-myositis?Dr. Mozaffar:
I answered this question earlier.
Is physical therapy of any significant benefit with dermatomyositis?Dr. Mozaffar:
Staying active and physical therapy are all important components of treatment of DM. I highly encourage it.
Taper of Prednisone?Participant:
Dr. Mozaffar, I have a unique issue. I was put on thyroid medication for 18.5 months and developed a thyrotoxic myopathy dx. via EMG April 2013. The biceps were the worst affected area on EMG and lately the biceps have swelled up and developed a huge bump on each bicep. I am seven months into the recovery and my endocrinologist says I am the worst affected patient he’s ever seen. He said worst case, it could take 2-3 years to heal. An ER doctor gave me a 15 day taper of prednisone to help with the bicep swelling and it worked amazingly well. Is there anything else I can do to speed up the healing and lower the swelling/edema in my body and biceps? Would another taper of prednisone be beneficial maybe? It seems logical that my body needs to take care of the swelling before I am able to heal. I’ve tried moderate walking, but it just ends up breaking me down even more. Thank you.Dr. Mozaffar:
I am not sure what you mean when you say that the diagnosis of thyrotoxic myopathy was established on EMG. I don’t know of any specific findings on the EMG that can determine that. Did you have a biopsy? Did you see a neurologist?
Stem Cell Immune TreatmentParticipant:
I know of some people diagnosed with CIDP who travelled to Chicago for a “stem cell immune system reboot” type of procedure. Is this a possibility for myositis patients?Thank you.Dr. Mozaffar:
This therapy is becoming less and less popular and we don’t think that it works universally. No experience with it in myositis.
I have been diagnosed with dermatomyositis (DM) at the age of 12 , but had symptoms since 6. I am now in my 30’s. I was wondering with having an autoimmune disease, would infections such as bone infections show up differently in a person who has DM? Like would the characteristic symptom of an infection (hot and inflammed) be presented differently?Dr. Mozaffar:
Yes the presentation of an infection would not change in you.
I had my first flare of DM at 52 years of age. Coincidentally, I began Prenpro right before. Have estrogen supplements been investigated as a cause, since I read DM could be hormonal. Thank you.Dr. Mozaffar:
We think that estogens and progesterones have an influence on development of autoimmune diseases but do not have any direct effect on DM or its exacerbation.
Treatment for Auto-Immune DiseaseParticipant:
1-Does NOVARTIS medication will has different type of impact/effect on those patients who has other auto-immune diseases such as vitilligo?2- Do you consider/Classify IBM as one of Auto-immune diseases?3- Are there any existing promising trials/studies to treat/cure auto-immune diseases?Dr. Mozaffar:
The NOvartis drug only acts at the level of muscle. not likely to affect skin. I already answered the other question regarding autoimmunity.
Long Term Prednisone UseParticipant:
I have DM and have been taking prednisone for 10 years from 2 mg per day to 10 mg per day depending on my CPK and muscle weakness. Is this dangerous to continue prednisone for that long of period?Dr. Mozaffar:
Any thing less than 10 mg of prednisone is considered low dose and not as bad as doses higher than 10 mg. It would be ideal if you can be completely off the medications but not bad given your disease and the length of the illness.
Death and Autoimmune DiseaseParticipant:
Most of us are seriously sick at some point during our illness, but do get better and feel okay most of the time. But a DM patient in our KIT group recently died. What factors of autoimmune disease make it so serious in some people?Dr. Mozaffar:
Complications in DM come from lung involvement and sometimes the swallowing issues.
Female 47 dm for 3 years. prednisone, mtx, and Hydroxychloroquine. Any special considerations because of immune suppressants after contracting a viral infection (shingles)?Dr. Mozaffar:
The recommendation is to get treated with anti viral medications within 72 hours of getting shingles. You should probably get the vaccine for shingles, if your treating physician is okay with it.
Prognosis and TreatmentParticipant:
I had a recent recurrence of polymyositis diagnosed in 2005. It is much worse. Have been on plaquenil 200mg for 4 years which put it in remission after poor results on prednisone and medrol. I have CVID (diagnosed in ’09) and panhypopituitarism (on 50 mg of hydrocortisone). What is the treatment you recommend and how does my autoimmune/immune deficiency affect prognosis and treatment?Dr. Mozaffar:
Work with your rheumatologist. If the plaquenil is working then continue on it. Irrespective of your CVID, your autoimmunity has to be treated.
Are there nutrional considerations with dermatomyositis?Dr. Mozaffar:
None to my knowledge and definitely none that have been scientifically proven.
Can you see a day when scientists may be able to “correct” the genes that cause myositis?Dr. Mozaffar:
There are genes that make you susceptible to myositis but don’t cause myositis. We are starting to know more and more about them and I am sure once we know more about it myositis can be prevented or at least reduced in incidence.
Multiple Autoimmune DiseaseParticipant:
Why is it that some people have multiple autoimmune diseases?Dr. Mozaffar:
Again it has to do with susceptibility genes. If one has these susceptibility factors, and get exposed to the right risk factors, whatever they may be, the disease (or diseases) may manifest.
Cleanliness and Autoimmune DiseaseParticipant:
What do you think of the theory that our obsession with cleanliness might be related to the increasing cases of autoimmune disease?Dr. Mozaffar:
I think I discussed it briefly during the TMA annual meeting. It is the so called “Clean” theory which says that since we don’t get exposed to enough childhood illnesses, that our immune system goes crazy and starts responding to things it should not. Good theory but very little prove for it. Definitely no excuse not to get the very helpful vaccine that are available now.
I respond ONLY to Prednisone at about 20mg/daily otherwise I cannot really walk or stand. Therefore I use it only for travelling interstate or overseas.My diagnosis was PM 12/03 then IBM in 2009 & again in 2013.My paternal grandfather was exactly like me at the same age and lived till 92.My brother 65 and son 42 both have weakness in peripheral muscle groups.Surely I have an overlap condition but how does one know and does DNA need to be collected from other family members?I am quickly deteriorating this past year.Thanks!Dr. Mozaffar:
ou probably have an inherited form of myopathy and not PM or IBM. You need to be seen by a neurologist with expertise in inherited muscular diseases, usually found in Muscular Dystrophy Association (MDA) clinics. I would suggest that you do ASAP. They can order the appropriate genetic DNA testing.
Treatment for PM and DMParticipant:
I have been diagnosed with polymyositis and now dermatomyositis. I was initially treated with daily prednisone (30mg) and reduced to 10mg daily. I also take azathiaprine (100mg) daily. We tried gammagard IVIG monthly with little effect. My doctor now proposes Rotinumab (SP); a treatment followed in 2 weeks by a 2nd treatment. The treatments will last for six months. Is my doctor on the right track?Dr. Mozaffar:
I have issues with your diagnosis. You either have dermatomyositis or polymyositis. You should not have both. You may want to get clarification from your doctor or seek another opinion before you try rituxamab.
Is it conceivable to invent a vaccine consisting of a benign substance that when injected into an individual suffering from an autoimmune decease, will divert the attention of the body immune system away from attacking itself, to attacking the benign (may be not totally benign) substance, thus alleviating the problems it was causing?Dr. Mozaffar:
I don’t think I can answer this question. It is too theoretical.
Can a woman with DM/lupus have Paget’s disease of the breast that would be caused by an inflammatory response due to auto-immune disease?Dr. Mozaffar:
I think Paget’s of the breast is completely unrelated to DM/Lupus.
Once you get an autoimmune disease, is it permanent? I have Polymyositis and my Rheumatologist thinks that my immune system will automatically slow down with age (I’m 77 now) and then I may not need medication to slow down the damage to my muscles. Is this something I might expect to happen?Dr. Mozaffar:
Not permanent. Immune diseases can “burn” out.
I have CVID and polymyositis. Doctors are constantly testing my antibodies to determine if I have a disease. Of course I never have antibodies (a characteristic of CVID) but how can they make an accurate diagnosis,? Are there other tests?Dr. Mozaffar:
I am not sure what antibodies they are testing for and what diseases they are looking for. You can make diagnosis based on specific symptoms and signs. Antibodies help but don’t make diagnoses.
I have read that the presence of any autoimmune disease in a family is predictive of autoimmune disease in the children, although not necessarily the specific autoimmune disease. Is this true? If true, any advice?Dr. Mozaffar:
There is a general increase in incidence of autoimmune diseases in family members of someone with an autoimmune disease. It may not be the same disease.
I have Ploymyositis, I started treatment 18 months ago, (30 days of predezone, 5 days I n the Hospital for IVIG infusions then once a month IVIG 40 a day two days in a row. 3 months later I was able to go up one flight of stairs without using the railings to pull myself up as before> Then I was put on TRICOR to lower my triglycerides, 60 days later I could not get up one flight of stairs. I was out on IVIG every two weeks same dose, after six months no progress I was then added methotrexate .08 once a week . ten weeks later no progress) my question is, is it wise to ask my Doctor to give me a boost of predezone again? or do you have any other suggestions. note I was taken off all Staten’s that stated my problem and also TRICOR.Dr. Mozaffar:
You might want to circle back to your doctor to see if you need another muscle biopsy or some blood testing to see if this is all related to the statins.
Autoimmune Disease and ChildrenParticipant:
I have three children who show no signs of any autoimmune disease, although it is common in my birth family, and I have PM. Is there anything that they can do in terms of their lifestyle to lower the chance that they might also get an autoimmune disease?Dr. Mozaffar:
Nothing specific one can do to prevent such things.
Good morning doctor. My question is how do doctors know how to label an autoimmunity disease especially when we get misdiagnosed initially with one disease because of early symptoms, bloodwork, X-Rays, and Biopsies, then get rediagnosed a decade later and told the first diagnosis was not correct, and finally we are told we have more than one autoimmune disease or secondary diseases to a primary disease?Dr. Mozaffar:
Difficult to answer this question without knowing the particulars of your disease and the history of diagnoses.
Do we really know that IBM is an autoimmune disease? If so, why don’t any of the autoimmune approaches to therapy work?Dr. Mozaffar:
IBM clearly has a lot of immune abnormalities but the immune response is not the primary response. It is very similar to the situation in ALzheimer’s disease (where the brain has a lot of inflammation but that inflammation may be there to clean out dying cells) or Lou Gehrig’s disease where similar amount of good and bad inflammation may be seen.
DM and CeliacParticipant:
I am a 73 yr old female. I was diagnosed with Celiac Disease in 1961, Type 1 diabetes in 1963. Later came ostoporosis and hypothyroidism. I was diagnosed 2 yrs ago with DM. Are these related and do I need to be watchful for other autoimmune diseases? I have also had Breast Cancer and Lymphoma. But all in all I am doing quite well. Thank you.Dr. Mozaffar:
Autoimmune diseases keep company; so it is not unusual that you have had other autoimmune diseases. Breast cancer is not related and I don’t think your lymphoma is related, although the lymphoma may be a complication of long-term immunosuppression, if you have been on it.
This concludes today’s discussion. TMA would like to extend a special thank you to Dr. Tahseen Mozaffar for spending the time to answer your questions. Thanks to all the members who participated.Dr. Mozaffar:
Aisha, it was my pleasure. I look forward to more such discussions in the future.