Patient Comments: Polymyositis - Effective Treatments

Question:

Which treatment has been most effective for your polymyositis? Submit Your Comment

Comment from: cheritabrown12, 45-54 Female (Patient) Published: June 15

I am a 51 year old female. Over the last 2 years I would wake up cramping all over and take 4 mg of Zanaflex and it did not touch the cramps and spasms. I found out on 4/21/17 from a muscle biopsy done in the front part of my calf that I am positive for polymyositis. I take 40 milligrams of prednisone and my body is still weak and crampy. Parts of my body cramps for hours at a time. When cramps leave, the body is exhausted; every time.

Comment from: PopoloWahine, 55-64 Female (Patient) Published: June 15

I was diagnosed with polymyositis 40 plus years ago in 1973, when I was 15 years old. I had a muscle biopsy and was treated with high doses of prednisone. I have been on prednisone ever since. I am on 5 mg of it now with methotrexate (4 tablets on Saturday and Sunday) and hydroxychloroquine (daily). The prolonged use of prednisone has made me diabetic, so I take Januvia and I take a low dose of losartan for high blood pressure. Having polymyositis has not stopped me from living my life. I am unable to raise my arms over my head now but I still work. Believe it or not, I work in the medical profession as a dialysis technician. I will be celebrating my 59th birthday in September. I hope I will be able to work to retirement (65 years).

Comment from: Diane, 65-74 Female (Patient) Published: September 06

I had 3 different muscle biopsies that showed polymyositis. That was after finding VRE (vancomycin-resistant enterococcal) in my ears; being a nurse how I don't know. Anyway I have had it for 25 years and I did continue to work for 10 years. I have been on metronidazole and went into respiratory distress. I have been maintained on 5mg of prednisone. I have tried every medicine. The neurologist put me on Cymbalta. I am in worse pain and feel like my spine is vibrating. I have been on it for 1 week. I feel bloated and it is like labor pain and bad muscle pain. They don't want me taking Percocet for pain. No one will even give and I am scared of it. The pain is worse than I was diagnosed.

Comment from: brrrrr, 55-64 Female (Patient) Published: November 12

I was diagnosed with polymyositis 20 years ago. I was first treated with prednisone, folic acid and methotrexate. My rheumatologist told me I would have a long recovery and would probably never work again. I must not have a real bad case because I was able to go back to work after 6 months. I am now only taking methotrexate and folic acid and have no side effects. I do notice now that I have pain in my feet and hands, not sure if this is due to the medication or the polymyositis. So don't give up, there is hope!

Comment from: Morella, 65-74 Female (Patient) Published: September 24

After I had been treated with stem cell, the polymyositis I had is no longer active. I have to do lots of therapy to get back my strength.

Comment from: angie123, 65-74 Female (Patient) Published: January 03

I wonder if any of you with muscle pain has taken a fluoroquinolone antibiotic such as Cipro, Levaquin, Avelonx, etc. I have been poisoned from Cipro on March 12, 2012. My neck, arms and hand muscles are in excruciating pain 24/7. No doctors know the answer on how to help me because they aren't informed enough about the fluoroquinolones. The FDA has just changed the box warning for doctors to not give out, only if nothing else works and as a last resort. This might be your problem. These fluoroquinolones have fluoride in them and they do attack our mitochondria at cellular levels. You can search and find tons of information on this.

Comment from: 102875, 55-64 Female (Patient) Published: August 02

I think I have polymyositis. I started having left hip pain, I thought it was joint pain but it also covered the surrounding muscles. Leg (thigh area) is so weak and painful sometimes I have to lift leg into car. It has been painful over a year, now right leg is getting stiff and painful in the upper thigh as well. It is hard for me to start walking after sitting, getting out of bed. I am taking ibuprofen and using ice packs, I sometimes cry in my sleep. I had MRI which said I had some arthritis but also had tears in the gluteal muscle. I have history of 2 autoimmune disorders; I am afraid to check further, afraid not to.

Comment from: Dawn, 45-54 Female (Patient) Published: March 31

I have been fighting polymyositis for close to seven years now. I have been on 60 mg of prednisone several times but my body does not respond well to the prednisone. Imuran made my liver enzymes go out of control. I am currently on Cellcept and I have been receiving IVIG treatments for 3 years. We have a couple of times when it seemed I was in remission, only to find if we try to reduce the treatments and the Cellcept that I revert back to square one.

Comment from: Mgap247, 55-64 Female (Patient) Published: February 10

I have had polymyositis for several years and it continued to get worse. I moved states, changed doctors, and my new neurologist suggested I get IVIG treatments. I have been receiving treatments for the last 6 months and can say they have made my life wonderful again. I can tell when it's time for another treatment, and look forward to them since I feel so much better afterwards. I also had an access port placed so I only need to be stuck once for my entire week's treatment.

Symptoms of Rheumatoid Arthritis
Comment from: Fir, 25-34 Male (Patient) Published: February 03

I was diagnosed with polymyositis when I was 19. Having been an active person, it really affected me. More so, I am a male and this disease occurs less frequently in males at my age. I started with a high dose of prednisolone and it took me over a year to get off the medication. Today I am in remission for the past 4 years or so and trying my best to exercise every week. I do have residual weakness here and there pretty much around the hip region but I am grateful I am able to walk and run and gym. Oh, I do have some degree of tremors which started after taking the high dose of prednisolone. The degree reduced overtime but I have never recovered fully even after stopping the medication. I wonder if this happens to anyone else. Lastly to all those with polymyositis, I feel you, let us all have a positive mindset and stay strong. Take care everyone.

Comment from: Dan, 55-64 Male (Patient) Published: January 31

I was diagnosed with polymyositis 22 years ago when I had a lot of muscle pain and they used 60 mg of prednisone to get it under control and I am taking 5 mg now. I still have pretty good muscle strength but they have no endurance and I am often in a lot of pain. Moderate water exercises and heat have done the most to maintain my strength. Methotrexate (hair loss, itchy, feel hot, red skin) and Imuran (anemia and elevated liver tests and a cyst) did more harm than good in my case and they can't seem to replace prednisone for me. The pain has gotten worse in the past 2 years and Naprosyn and tramadol don't always work anymore so we will be trying Cymbalta next. I can only work a couple hours a day now. I have many related minor problems with my esophagus, breathing, hand cramps, gastrointestinal bleeding, stomach polyps, lumps under skin, being tired and fast heart rate.

Comment from: Anna, 45-54 Female (Patient) Published: April 13

I can't exercise because of severe pain. My doctor has narrowed me down to connective tissue disease (autoimmune) and polymyositis. I've been diagnosed with fibromyalgia and Hashimoto's thyroid. Synthroid plus Cytomel has helped more than anything in giving me enough energy to get out of bed. I also take Humira, which seems to help. I was untreated and misdiagnosed for maybe six years because of Veteran's Admin so-called care. They said there was nothing to be done except physical therapy and that always destroyed me physically. I tried many times. I did pre-yoga, which is gentler than regular yoga, and felt like I'd been run over by a truck the next day. All physical therapists have recommended discontinuing therapy because of my increase pain and weakness. I would love to find a way to exercise and not hurt myself, but I've had such bad experiences that I don't even try anymore. In fact, my spouse practically forbids it. Even swimming is painful, although a hot tub and floating in the ocean help temporarily.

Comment from: 35-44 Female (Patient) Published: October 13

The medicine that always works for my polymyositis, no matter what, is prednisone. Cyclosporine worked well for a while. I am taking methotrexate now -- we will see how well that works. Imuran was the least effective for me.

Comment from: AJM, 55-64 Male (Patient) Published: April 27

I was diagnoses with polymyositis about 10 months ago and smoldering multiple myeloma 8 years ago. Doctors placed me on 40 milligrams of prednisone with good results. My rheumatologist started reducing my prednisone where I am now at 10 mg. My creatine kinase (CK) levels have increased. My doctor offered me the chemotherapies but I am afraid that the side effects will activate my myeloma. I have decided to take control of my own therapy. In 3 weeks, I will be totally off the prednisone. I have changed my diet to vegan vegetarianism. I am also taking turmeric, ginger and magnesium daily to manage the inflammation. I also use weight training and cycling as part of my physical therapy. I will be using natural remedies to give my body a chance to heal itself. I will try to give a report down the road for anyone who is interested in this method of treatment.

Comment from: feelingfedup, 55-64 Female (Patient) Published: October 09

I worked for 20 years after fibromyalgia diagnosis. Then had to retire due to back pain. I also have Hashimoto's and both knees replaced. However last 4 years or so, the fibromyalgia pain has changed. Much more weakness (climbing stairs, standing from sit position) and my walk have changed. I have been walking my dog for about 18 months to strengthen my legs, but they keep getting weaker, and I have a real hard time walking. My thighs and upper arms are really weak. I pulled my thigh muscles twice just getting off toilet. I wonder if it could be polymyositis. I have a lot of pain and weakness, but doesn't feel same as when I worked with fibromyalgia. Pain killers just dull the pain.

Comment from: Donna R., 55-64 Female (Patient) Published: April 24

I have polymyositis, fibromyalgia, been having autoimmune issues since 1994, I was diagnosed finally in 2002. He was a neurologist and did the ECTs and biopsy. I went 7 years trying to find out what was happening to my body. I know what it is and I don't like it. I have used Prednisone-methotrexate-morphine patches. I am talking Cymbalta and it helps with your moods and your pain. I have been on it for 10 years, 60 mg once in the morning.

Symptoms of Rheumatoid Arthritis
Comment from: Sondra, 19-24 Female (Patient) Published: July 06

I have been searching for a condition that would explain my symptoms for over a year. I've seen neurologists, infectious disease doctors, had scans and labs. Since March I've developed cardiac arrhythmias, tachycardia. I started falling and had leg trembling and weakness along with severe pain from hips down to knees. I lost my ability to walk and was hospitalized for 3 days until it slowing came back, maybe due to high dose prednisone. I developed nodules under the skin. Several of them have abscessed requiring an 8 day hospitalization. I have a herniated a disk from my continual falling. Does anyone here have all those symptoms? Due to insurance problems I haven't had a muscle biopsy or EMG but my CPK has been slightly elevated at times but just to 600 or less. Any input would be appreciated.

Comment from: GG , 65-74 Male (Patient) Published: July 06

35 years ago I was diagnosed with Arthritis which has been treated with high levels of Aspirin, later followed by new and improved anti-inflammatory. In combination with the arthritis my cholesterol balance has not been acceptable even though it never reached a 200 level. I have been diabetic for 30 years. The real problems started when I was put on statins. When I got to the point that I had to lift my leg with my arm and pull to get into a car, and was not able to get out of a chair without arms on it I went to the doctor for help. He did the clinical pokes and jabs, said I was strong and sent me home. My CK tests were high and he said that was no doubt caused by the Lipitor. It was not until the blood tests were very high showing not only muscle damage but also heart muscle involvement that I was sent to a rheumatologist who reran the CK tests, did the milligram followed by the biopsy. There was no doubt of the diagnoses. The problem was the years it took to get someone who was willing to listen. I had stopped the Lipitor several years before. That drug should be removed from the market! I am being treated with sodium Methyltrexate and high doses of Prednisone. I have been tittered with the Prednisone, now 10 and an increase of 6 pills of Methyltrexate. I battle the fatigue, and visual changes. The head ache usually lasts for 48 yours after the Methyltrexate. I hope for a remission.

Comment from: Lourdes, 35-44 Female (Patient) Published: July 06

I am 43 now but have had poliomyelitis for 11 years now. Yeah, it was hard to accept it and deal with it. Even though I work for SSA dealing with mostly disabled customers I am related to them in all the pain and ways. I hated prednisone, inmuran and methatroxate but I had to take it. I have gain couple of pounds, swimming is good, and adjusting my daily activities helps me a lot. The last thing I had was called motion sickness which I could not stay still everything around me was moving so weird. It usually happens in April. This is the second time this year, could be pollen who knows. I remember got a bad cold in Seattle, WA which lasted for days and each side of my body stopped moving eventually all my body stopped working. I have problems with my voice and speech, this is really bad because I push to talk with people and they still can hear me or understand what I say. I lack breath due to Interstitial Lung disease. Depression, yes, we all go through this. People might think we are lazy (resting too much) or crazy (prednisone). But keeping our mind busy is the clue for living not forgetting love and laugh.

Comment from: Sally, 55-64 Female (Patient) Published: June 22

I was diagnosed with dematomyositis/polymyositis last year. I was put on high doses of prednisone, but that was not controlling the rash/pain or fatigue. It took six months of being on Methotrexate (20 mg weekly) as well as prednisone (10 mg) daily to make me feel better. We are now decreasing the prednisone slowly -- ½ mg per month. I never thought I would feel good again.

Comment from: sa-su, 55-64 Female (Patient) Published: March 27

I was diagnosed with polymyositis. I was put on high doses of prednisone (120 mg a day), then eventually tapered to an every-other-day dose. I was also put on Imuran, but my system was highly intolerable to that. Over the years, my doctors tried to take me off the prednisone three different times. Each time, within 2-3 months, the polymyositis came back. I have ben in remission for several years now, but I can't get off of the prednisone. I am now on 25 mg every other day, and that seems to be working well. I tire easily most of the time and have some pain occasionally, but other than that, I get along okay.

Comment from: janeb, 65-74 Female (Patient) Published: February 19

I have had polymyositis for eight years, and I am now on 5 mg of prednisone a day and 10 mg of methotrexate a week. It seems to be working pretty well. Exercise does help, but I am still pretty week in hips and upper legs.

Comment from: Ria, 55-64 Female (Patient) Published: September 16

I was diagnosed with juvenile polymyositis at the age of 10, back in 1961. By the age of 14, I was walking again, even though the calcium deposits had grown into my muscles. I've managed to lead a pretty normal life. I'm married with three children. At the age of 47, my symptoms flared up again. The pain was extreme, and the muscle weakness kept me either in bed or on crutches for five years. I was referred to a new consultant who tried me on autoimmune suppressants, which had extremely unpleasant side effects. I was allergic to one of the medications they gave me, so then I switched to IVIG treatments over five days, every six months. At 57, I am walking unaided, driving again, and doing many things that would have seemed impossible a few years ago. My only concern now is that my body is again storing up calcium; even deposits that were surgically removed years ago have grown back. I am thankful though that I feel so much better.

Symptoms of Rheumatoid Arthritis
Comment from: Carolina, 55-64 Female (Patient) Published: September 16

The most effective treatment I have had for my polymyositis is a combination of Prednisone (10 mg) and IVIG treatments about every five weeks. I did not respond to the chemotherapy drugs.

Comment from: Miss MG, 25-34 Female (Patient) Published: September 16

I have had polymyositis for five years and have been in remission for two years. I think that the Imuran and Methotrexate have helped me to be in remission. I have to constantly exercise because it helps a lot. This is a battle, but you can beat it if you fight hard enough.

Comment from: Enrique, 55-64 Male (Patient) Published: March 18

My husband has had polymyositis for the last 16 years and along the road he developed serious health problems after being treated with high doses of prednisone for 14 years none stop. It has been so bad for him because due to the prednisone he developed diabetes and all the problems along. You have no idea how bad you get when you take steroids for a long time and after all this time it didn't help at all and there he is suffering from renal dysfunction, respiratory issues, neuropathy, heart disease, kidney failure, gout, rheumatoid arthritis; you name it he has it. It has been a long road and he is at the point of being wheelchair and bed bound. He is not able to function for the last two years, he is suffering big time.

Comment from: daffidol, 55-64 Female (Patient) Published: April 22

I used to be a community health worker (CHW) until I was diagnosed in 2006 with polymyositis. But before my diagnosis, I had trouble getting up from a sitting position and getting up out of bed. That was scaring me, as I didn't know what was happening. So, my doctor did blood work and a muscle biopsy and found out I had polymyositis. I was put on strong dose of prednisone. Then the doctor tried to switch me to Imuran, but that made my hair fall out. I was stuck on prednisone until I agreed to be put on methotrexate but I am afraid, as I have a cyst on my liver.

Comment from: princess8690, 19-24 Female (Patient) Published: May 06

I am 22 and was diagnosed probably four months ago with polymyositis after pretty much being crippled for six months. I am taking 40 mg of prednisone a day and methotrexate, four tablets, twice a week. I can walk, take showers, and go to the bathroom by myself now, so I am grateful for that, but I am always tired and am sick often.

Comment from: StacieK, 65-74 Male (Caregiver) Published: March 25

My father-in-law passed away on March 15, 2009. He was diagnosed 20 years ago with polymyositis. He took high doses of prednisone then and went into remission. Last August, he had a flare-up and got worse and started the medicine again. He seemed to be getting a little better. After the first of the year, he got worse and lost his battle a little over a week ago. His doctor did not tell him anything about continuing to take medicine even during remission. That makes us wonder if that would have made a difference.

Comment from: bighead, 35-44 Female (Patient) Published: February 19

Although I was diagnosed with polymyositis about two years ago, I haven't really found a combo that works for me. I started with very high doses of prednisone and worked my way down. It helped for a while, but as the dose got lower, the pain got worse for me. The winter months are awful for me I suppose because of the cold we just started a new regimen of methotrexate so maybe that will help.

Comment from: Michelle, 25-34 Female (Patient) Published: February 19

I was diagnosed with polymyositis when I was 17. I was put on a high does of prednisolone (60g) along with azathioprine. I was gently weaned off the prednisolone, and two years later, I was only taking the azathioprine. Now, I don't take any medications and have been leading a completely normal and healthy life ever since. I am now 27.

Comment from: Jennifer, 55-64 Female (Patient) Published: February 19

I have had polymyositis for about 16 years now. I am on prednisone and azathioprine. Now, I am doing very well. I'm doing my exercises. Yesterday, I went on a friend's treadmill and walked 1.23 miles in half an hour. Normally, I walk for one hour in the evenings. My doctor is very pleased with my progress.

Comment from: Selby, 55-64 Female (Patient) Published: August 06

I have had polymyositis for the past nine years. I have had high doses of Prednisone. Now I am on 5 mg of Prednisone every other day and a weekly dose of 7.5 mg of methotrexate. I feel the combination of these two drugs have kept me in remission for over the past five years.

Symptoms of Rheumatoid Arthritis
Comment from: Florence Jesso, 55-64 Female (Patient) Published: July 06

I'm a 58 female was diagnosis in with polymyositis. I was taking high dose prednisone. I just take 5.mg now. My legs are so sore when I am on my legs. I do not see an Arthritis doctor.

Comment from: syl Gray, 65-74 Female (Patient) Published: July 06

My ANA levels have been elevated for over a year now that I know of and was recently diagnosed with lupus by one doctor, poliomyelitis by another and scleroderma by another. My hips and legs ache almost all the time now and I am not getting much relief. The muscles in the back of my legs and even down to my feet hurt.' I have no energy and any type of exercised makes it worse. I have had this problem for years, but it has been much worse for the past year. I had a sleep study done this week but have not had the results yet.

Comment from: Sher, 55-64 Female (Patient) Published: June 04

I cannot rise from a chair without assistance and I use a portable pot over the commode. Currently I am on 15 mg. of methotrexate once a week. I have very little hair left. I walk with difficulty and to shop, I must use a wheelchair. I felt much better when I took 5 mg. of predinsone daily.

Comment from: janetmj, 45-54 Female (Patient) Published: May 13

I have had polymyositis for 25 years. Have used prednisone, methotrexate, Imuran, Cyclosporin. Most recently Cell Cept. I will start Rituxan this week. My insurance will not cover the cost. The Drug Co. is going to cover the med. for me. I am very hopeful that this will work.

Comment from: stitch, 45-54 Male (Caregiver) Published: January 07

My husband almost died last year. Thank god for good local doctors. He was diagnosed with polymyositis and scheleraderma. The prednisone made an immediate impact, but we went thru many medications before getting it right. He is permanently disabled because of the scarring in his lungs and he must wear gloves below 50 degrees, but everything else is pretty good. He is presently on methotrexate shots weekly and Rituxan treatment every six months. WE had to appeal the insurance to get the Rutxin, but they caved in 2 weeks. That was when the big improvements came. Hope this helps someone.

Symptoms of Rheumatoid Arthritis
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