Early Stage Polymyositis

I would like to hear from someone that has been treated for an early stage of polymyositis.  I am awaiting muscle biopsy results and I am anxious to get on medication to feel better.
Please send your experience and treatment information

[1950doc]

Hi,
I have been suffering from muscle weakness for years and was diagnosed with polymyocitis about 6 months ago. I have been taking prednisone and it does not seem to be helping although it may take a year to see results. I also take Co Q-10 to help with energy and Ester Creatine to help with exercise. My main problems are getting up from a chair and climbing stairs and I seem to be getting a little better at both but progress is very slow if at all. In my case, pain is also a problem and I have not found anything that helps with that although I hope that will diminish with continued treatment.

Write and let me know how you are getting along. Sorry for the delayed response but I just discovered this forum.

[Trish271]

Hello

Sorry to hear that you have not had much relief, I am on 40 mg Prednisone daily and 150 mg Imuran (immunosuppressant), the prednisone helped me immediately, I hear from others that the Imuran takes a few months to kick in, it has been 2 mos since I started medication, I have some weakness but doctor says as you feel better you do more which causes the enzymes to release which causes the symptoms.   I'm very surprised the prednisone did not help you.  What is Co Q 10 and Ester Creatine?  Do you have any other autoimmune disease?  What prognosis did your dr give you? What type of doctor are you seeing? where is your pain? how much prednisone do you take?
Has your CPK # gone down at all?  My dr told me NO EXERCISE.

I would love to hear more from you, maybe we can resolve some issues

Trish

[1950doc]

Hi,
Glad to hear you are doing better. Are you just starting on prednisone or is 40 mg. your regular dose. I started on 40 and have since tapered down to 10 mg. Co Q 10 is a supplement that is supposed to increase energy and the creatine is upposed to help during workouts. It was recommended on myositis.org. It is interesting that your doctor says no exercise. I have plenty of arm and upperbody strenth but have trouble getting up from a chair and climbing stairs. I have been to a number of specialists and no one has been able to nail this down as actually polymyositis, but that is their best "guess"

Are you experiencing pain? Mine varies but is usually present. I was also on cholesterol medcation and the pain has decreased dramatically since I stopped taking those. My doctor will not be to pleased about that.

My doctor said it would take up to a year for this to work, so I am pleased you are doing better already. It gives me some hope and also some questions for my doctor when I see him in two weeks.

Keep me updaed on your progress as we struggle with our ills.

Doc

[Trish271]

Hi Doc

Did your dr do a EMG or a muscle biopsy?  they told me that was the only way to diagnosis polymyositis.  I am surprised you are not on an immosuppressant medication. from what I understand prednisone just masks the symptoms until the other medication kicks in.  I don't have pain, mostly weakness and fatigue.  I read that as the muscles are used it releases more enzymes into the bloodstream and that is what makes the fatigue and weakness. My dr said NO EXERCISE


I started on 40 mg prednisone, 50 mg Imuran, increased Imuran 50 mg 3 wks to total of 150 mg.

I am seeing a Neuromuscular specialist, I live in SC but they sent me to GA since he is the best in the area.  I go back June 3 for bloodwork, I am hoping for a med reduction.
Did you gain weight on prednisone?

Do you work? Is it difficult getting dressed, showered daily.  

I hope you get the mystery solved, very aggravating not knowing for sure.

write soon

Trish

[ampky]

Trish,

Have you ever been tested for lupus (usually a blood ANA test) or for any other autoimmune disease?

[1950doc]

Hi,

I hope this message finds you feeling well.

I have had just about every test with the exeption of the muscle biopsy. This is because my rheumetologist didn't think the results would be conclusive. I am really surprised you are not on an exercise regimen as my doctor recommends moderate exercise as does the Polymyositis website and most other sites I have visited. I live in Wisconsin and with Spring comes a lot of yardwork and other outdoor activities and this seems to have a positive effect with my strength and endurance.

I have to see my doctor next week and I am going to quiz him on adding another suppressant to my program. I am also contemplating going to the Mayo clinic which is not too far away. I want to get my doctors blessing on this however so my insurance doesn't balk at paying for it.

Well, it's a beatiful day and I am going to go outside to do some yardwork and get a little exercise. Write when you get a chance and I will let you know what went on with my dp. visit.

bye for now

[Trish271]

Hi Doc

Thanks for replying. I hope you are doing good.  I think it is a good idea to go to the Mayo clinic, it seems that alot of doctors don't see polymyositis alot and I think it takes an experienced doctor that has worked with PM patients.

I started with a rheumotologist, he sent me to a neurologist, that neurologist sent me out of town to another neurologist/neuromuscular specialist and from what I hear he is the best out of GA (I hope)

I also had a EMG test and that told them that there is muscle damage and that's when they set me up for a muscle biopsy.


Do you have fatigue and if so what helps it.

I will eventually have to have some physical therapy but that won't be until I get the condition under control which could be a year or so.

The unknowing is frustrating, I hope you finalize your diagnosis and get feeling better

Please reply

Trish

[1950doc]

Hello again,

Not much has changed but I am feeling better since I got away from the cholesterol medication.

I went to a rummage sale and bought one of those cardiac exercise machines where you push with your feet and pull with your arms and the seat rises. Since the motion mimics getting out of a chair I thought it might help. So far I only spend about 20-30 minutes every other day, but it really seems to help. Also I have been working outside and I seem to be getting some strength back. I do get fatigued but if I rest for a few minutes and get something to drink, then I can go back to whatever I was doing until I get fatiged again. Right now I can do physical work for about 45 minutes to an hour before I have to rest.

I am also trying to diet, but it is sure difficult trying to lose weight while on prednisone. Have you had any weight problems since taking it?

I'll write again after I see my dr. next week and let you know whats going on.

Best wishes,
Doc

[Trish271]

Hello

Glad to hear from you.  Be sure to verify with your dr about how much exercise you are doing.  Do you have some days that you are more fatigue than others? I find that if I over do it catches up with me.

DIET?  I have been eating everything in site.  My dr doesn't feel I should be cutting my calories too low but I should be eating healthier than I am.  First side effect he mentioned was "weight gain, ulcers, cataracts, etc" . I had asked him if the weight gain was from what we ate or fluid.  He said the donuts will do it, so I am confused whether this could be prevented if I didn't eat all the junk but the cravings are terrible. Yes I gained 7 lbs the 2nd month on meds, 1st month, I somehow maintained although I ate everything.  

Are you dieting and not losing, have you gained?

I hope to hear from you soon

Trish

[1950doc]

Hi,

I hope you are doing well.

I just got back from the Dr. I have an appointment in June at the Marshfield Clinic which is a well known medical facility and only 30 miles from here. I tried for Mayo but my insurance would not cover it since Marshfield is closer and offers the same services.
I convinced the Dr. to up my prednisone a little as I feel that I am making a little progress but he would be more comfortable with me seeing a rheumatologist and so would I. The last one I saw was no help but this guy is supposed to be one of the best.

I have cut way back on my eating but it has little effect on my weight. But I will keep up the fight as I should be eating healthier and hopefully the weight will start to come down. But trying to lose weight on prednisone is difficult.

Yesterday my son and I cut down two trees and the day before that I spent six hours cleaning in the garage so today I am paying for that activity with some stiff muscles, but I am willing to put up with the soreness to be able to do activties like that. My Dr. recommends exercise but he said to keep it to moderate daily exercise and I do feel a lot better when I am active so I will continue. My endurance is getting better also; I still get fatiged but it is less often and I am able to bouce back faster.

At this point I am gaurdedly optimistic, but I still am way short of where I want to be.

Keep fighting

Doc