Can someone help me?? - Myositis Message Board

dutchess99 · 07-28-2006, 06:25 PM

I have been through the ringer with docs and tests and such. I don't know what is going on. I have a VERY high ANA 1:1280. I have severe muscle weakness, tendinitis in both shoulders (today I can't even lift them above my head), I have had severe muscle shakes, tremors, whatever you want to call them. My arm started shaking uncontrollably. Some days my legs feel like they won't hold me up and sometimes my arms are too weak to hold the spoon to my baby's mouth. My rheumy sent me to have an MRI of my legs yesterday. What the heck is this mess? He seems to think I may have polymyositis. What is that? What can I expect. I did better on high doses of prednisone but when he tapered me down everything started all over again but worse. They hope they can find answers soon because he said my case is so baffling. I have a lot of lupus symtpoms as well and have severe Raynauds. Please help me if you can!!! I don't know what to do. I go back to work in a week and have two small kids and a husband who is scared he'll lose me in the near future.

JoJoJim · 07-29-2006, 11:31 PM

Dear Dutchess,
Polymyositis is an autoimmune disease where as your body attacks it's own muscle tissue. In Polymyositis, it is the muscles CLOSEST to your body trunk, like your thighs, abdominals, shoulders, neck. . .that are affected. Symptoms can be somewhat minor or it can be VERY debilitating. It is possible that it could be triggered by a virus, but to my understanding, the actual cause is NOT known.

Although I am new here, I DO know about Polymyositis. Like any other disease or illness, you have much better response when it is caught early on. Although, I have to say, most diagnoses of Polymyositis are diagnosed specifically by muscle biopsy and very high CPKs in your blood work. I don't think I have ever heard of a diagnosis for Polymyositis by MRI. I too have symptoms of Lupus but I have tested negative for it. I also have Reynaud's syndrome.

First line of usual treatment IS with the prednisone at a relatively HIGH dose for three to five months. It would seem that you had some sort of a response with it. However, if your doctor orders a muscle biopsy, the prednisone can interfere with the results of that biopsy. Pursue this, pursue this and PURSUE this.

Good Luck to You,
the DragonLady

dutchess99 · 07-30-2006, 06:55 PM

Dragonlady,
Thanks for your reply. I have had some pretty bad days lately. The prednisone is at 20 mg but I will call him tomorrow b/c it is sooooo not enough. My arms, my thighs, and my shoulders are to the point it is hard to move them and it is hard to stand for long periods without fear of falling. I was told they will probably have to do a EMG test to determine the extent of the damage to my thighs. Thanks for your encouragement. I am really scared about this.

JoJoJim · 07-30-2006, 09:36 PM

Dear Dutchess,

I know it is scary as I remember those days rather well. I'd push the muscle biopsy on the doc if he suspects Polymyositis. An EMG is really a test to determine nerve damage which is something you very seldom see with straight up Polymyositis---unless he might be looking for something else. My doctor was also concerned about and wanted to rule out MS, hence an EMG and an MRI. Sometimes a doc learns MORE by ruling stuff OUT than by ruling stuff in. Personally, an EMG is not a particularly favorite test of mine.

Polymyositis is NOT a killer disease, but it definitely can be quite disabling. Typically, those who get it have about a 20% chance of death---so it is very rare to die from Polymyositis itself. However, the battery of medications that you sometimes have to take is another story. Even just with prednisone, you must be very careful about infections as it works by stomping down your immune system. We sort of NEED our immune system to fight off infections.

Weakness and a 'burning' type of pain are the usual symptoms of Polymyositis. Many people say that they've had the burning pain while many doctors say that it is not all that common. I had the burning pain---sort of feels like you've done one too many sit-ups. Do you remember your P.E. teacher saying to you to "Go for the burn"?

Lupus CAN be behind Polymyositis sometimes and I'm told it is not always easy to make a diagnosis of Lupus. While a blood test DOES shed some light on things as far as high CPK levels---a telltale marker of Polymysitis, a muscle biopsy is the most informative test. That has been MY experience as I certainly don't claim to know as much as your doctor. I just find that they're NOT all that great at listening sometimes. I've had to really push mine somedays. I've even switched doctors because I didn't feel as though they were aggressive enough with MY concerns---such as trying to get out of a chair.

I did have tremors---mostly because I was trying so HARD to do a certain thing or whatever, but the muscle just wasn't there and so my arm or whatever would just sort of quiver. I suppose that your joints and tendons must then compensate for muscle damage---hence the tendonitis, that's only common sense I guess. Falls with Polymyositis ARE definitely an issue. Obviously, you must be VERY careful.

This is something you MUST stay on top of as Polymyositis can progress to a degree that is extremely difficult to come back from. Personally, were I to do this all over again, I'd be CAMPED OUT on my doc's very doorstep until every available option has been DONE. Prednisone is not a pleasant drug to take and there are many side-effects that are quite harsh, which is probably WHY your doc has tapered you off of it. How long have you been taking the prednisone if I may ask?

Peace Always,
the DragonLady

dutchess99 · 07-31-2006, 02:29 PM

Hey Dragonlady, I have been on prednisone for about 2 months. It started with 40 mg and tapered down weekly to 5 mg and now he has me back up to 20 mg. I have been on plaquenil for 4 months and he said it would take more than 6 months to tell the effects of this drug.

I am trying to be optimistic and hopeful but I called the dr today and explain how the 20 mg is not making me feel that much better. At least not like the 40 mg did. They said they don't want to up the dose until they get the results of my MRI to see where the inflammation is. The dr. is a VERY aggressive dr. and I do trust his opinion, I am just concerned b/c I start back teaching a week from today!!

Thanks for your advise, any is helpful, Dutchess