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Old 06-19-2006, 12:56 PM   #1
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Newly Diagnosed with Polymyositis

I am a 36 yo female that was just diagnosed with Polymyositis last month. My doctor sent me to the hospital with a CPK level of 39,000. I spent a week in there on IV Fluids and high doses of Prednisone. I start Methotrexate this week and will be off the steroids in 5 weeks. My CPK level is now 94 and I feel good. I am hoping to never have a relapse again but of course I have no way of knowing if that will happen. I am wondering how other people have faired after being diagnosed and how long they went without a flare-up. Also if anyone knows of any side effects for the Methotrexate I would appreciate hearing that as well. I originally went to my doctor for muscle pain, I had felt like I was hit by a truck. I heard it was rare to have the pain...

 
Old 06-21-2006, 02:37 PM   #2
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Re: Newly Diagnosed with Polymyositis

Hi and welcome to the boards. First of all, I am glad to hear you responded well to the treatment provided. I too was diagnosed about 10 years ago. I however, was diagnosed with a mixed connective tissue disease. RA, polymiositis, lupus and features of scleroderma. Personally, I had alot of problems with oral Methotrexate. It gave me horrible nausea and vomiting. When I was switched to injectable, it made a lot of differance. I take 25 mg IM per week, among a slew of other drugs. Typically the meds used are immunosuppressant in nature, so being predisposed to infection is always an issue. Prednisone, while a miracle drug on one hand also comes with a lot of long term side effects, the worst being bone loss. As a woman it is important to make sure you have regular bone scans and take Fosamax if indicated for you by your Dr. Definately something to discuss. I am on huge doses of Medrol, which is essencially prednisone, but it has already been broken down a step. The least amount IMO is the best overall. These are the type of drugs, that long term use means you can't just stop all of a sudden. You need to be slowly weaned. I hope you continue to feel better. Lily

 
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Old 06-21-2006, 02:38 PM   #3
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Re: Newly Diagnosed with Polymyositis

By the way, I had a LOT of pain, and with that high of a CPK, I would imagine your muscles were screaming!!

 
Old 06-22-2006, 07:48 AM   #4
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Re: Newly Diagnosed with Polymyositis

Yes, I also have MCTD with RA, Lupus, Reynauds and Scleraderma (purple eyelids). I just started the Methotrexate this week (3 pills to start). I've heard it could bother the stomach, I'm hoping not. I didn't have any problems with the Prednisone so I'm hoping that trend continues. My doctor prescribed Folic Acid to take with it but nothing else. My levels are back to normal (94) and I'm feeling much better. In the past 10 years how many relapses have you had if any? And you've been on the medication continually all these years? I've heard the Methotrexate is very bad for your liver (my doctor told me no drinking alcohol while I'm on it). Do you know anything about this as well?

Thanks!

 
Old 06-29-2006, 06:30 AM   #5
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Re: Newly Diagnosed with Polymyositis

Hi. i'm new to the board and am greatful that there is a medium such as this to share information. I was diagnosed with polymyositis 3 years ago. The first year of giagnosis, after receiving a combination of treatments with Prednison and Imuran, my CPK dropped from a high of 17,000 to 2,000. Although my CPK level never dropped to a normal level, after about 8 months of treatment, I was able to resume a normal lifestyle. However, I had a relapse in 2005, and my condition worsened to the point of complete inability to stand or walk without assistance.

I have tried several treatments, including Cellcept, Cyclosporin, Imuran, and IVIG, to no avail. I have decided to try a new treatment called Rituximab, which is an IV treatment. The first treatment requires an inpatione stay, with a second treatment one week after that, with follow up treatment every 10 weeks. SO, pray for me.

By the way, for those of you that are unaware, your local Muscular Dystrophy Association may be of great help to you in terms of assisting with medical treatment and procuring walking aids such as wheelchairs.

 
Old 07-07-2006, 06:21 PM   #6
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Re: Newly Diagnosed with Polymyositis

I was diagnosed late 1999 along with RA. The first started me out on high dose of prednisone along with methotrexate. Then they took me off methotrexate and put me on immuran My cpk levels came back down to normal but every time they try to take me off the prednisone it would flare back up. Finally back last Sept (05) was completely off the predinsone and slowly come off the immuran. I had little pain but was feeling better. Then late March (06) I had a relasp. I could feel it coming on again. Well, I am back on the prednisone and now cellcept.(60 mg every day of prednisone) They have been lower prednisone since the earlier part of June. (as of date 60 mg on even days and 30 on odd days) By Sept. I should be taking 60 mg every other day. At this time I am not feeling any pain but thats the prednisone covering it up. Good luck to all and keep the fight up. If you feel that your doctor is not helping you. LOOK for another doctor. Some of the doctors have never delt with myosits.

 
Old 07-19-2006, 10:10 PM   #7
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Re: Newly Diagnosed with Polymyositis

Quote:
Originally Posted by tschreib1
I am a 36 yo female that was just diagnosed with Polymyositis last month. My doctor sent me to the hospital with a CPK level of 39,000. I spent a week in there on IV Fluids and high doses of Prednisone. I start Methotrexate this week and will be off the steroids in 5 weeks. My CPK level is now 94 and I feel good. I am hoping to never have a relapse again but of course I have no way of knowing if that will happen. I am wondering how other people have faired after being diagnosed and how long they went without a flare-up. Also if anyone knows of any side effects for the Methotrexate I would appreciate hearing that as well. I originally went to my doctor for muscle pain, I had felt like I was hit by a truck. I heard it was rare to have the pain...
I only took 10 mg of Methotrexate and I feel so weak in 3 days that my voice fades away when I talked. My Physician removed it from my treatment and replaced it with Imuran 150mg. In addition I was also taking Prednisone but 40 mg made my muscles weaker and brought my blood sugar up. My doctor reduced it to 20. It took 1 1/2 years to wean me off 20mg of Prednisone. I am down to 50 mg of Imuran, continue taking Fosomax and multi vitamin. I am closely monitored by my doctor followed by scheduled blood work. My CPK is 43 on my last check up. I also have a bone density test to check bone lost. I am 54 years old and I'm back to be able to do things like play 18 holes of golf walking. Good luck.

 
Old 07-20-2006, 11:54 AM   #8
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Re: Newly Diagnosed with Polymyositis

I was down to 10 mg of the Prednisone and only three weeks into the Methotrexate when I started having symptoms again. My doctor wants to give the Methotrexate more time to work so I'm back to 20 mg of the steriod. I haven't had any side effects so far. My doctor seems concerned with weight gain but I've only gained 5 lbs since leaving the hospital (I was 110). My biggest, most annoying symptom is swallowing. It's hard to do and my voice sounds funny, I also tend to aspirate easily. Does this happen to anyone else with the Polymyositis?

 
Old 07-26-2006, 09:16 PM   #9
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Re: Newly Diagnosed with Polymyositis

Yes, one of the my symptoms is difficulty swallowing and I also can not hold my head up when I get up. I have to turn to my side and push myself up. I was told by a specialist at UW that if not treated, I will be in a wheelchair and probably be in tube feeding. I had a feeling I was heading down that road if not treated soon. My doctor started me with 10 mg Methotrexate in combination of 20 mg of prednisone 3 times/day, Vitamin E, mutivitamin and Fosomax. He has to replaced methotrexate with 150 mg Imuran. I got so weak with methotrexate I don't have the energy to project my voice. Within 2 weeks he changed the prednisone to 20mg once a day ( very slowly wean me off for over a year). My treatment started in April 2004, June 2004 I was walking OK but my CPK still in 5000 range. He added the Gamma Globulin infusion 3 consecutive days in a week/month for the next 3 months. It's been 1 1/2 years and I am only taking 50mg of imuran, Fosomax and mutivitamin. I have blood work done on regular schedule and see my specialist doctor every 4 months besides my PCP. I am hoping that Polymyositis will never come back. Listen to your body, work with your doctor in your treatment. Sometimes it just a matter of adjusting the dosage or finding a right combination of medications. Good luck

 
Old 07-29-2006, 10:15 PM   #10
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Re: Newly Diagnosed with Polymyositis

Hello, I'm new here to this particular site, so I'm not quite familiar with it. I am however, quite familiar with Polymysitis. Bottom line is the sooner and quicker you can get a good response with medication, the better off you will be and you will be less likely to have 'flares'. It seems that you have had that good response. It took years for my CPK levels to drop. So, despite how scared you might be, you are doing good. Hang in there!

Some people have a minor bout with Polymyositis and continual 'flares', and some people like me have had a major kick-A%% bout with it with possible remission or minor flares. Polymyositis can come at you in a number of ways, but like any other illness, the sooner it is diagnosed, the better off you will be.

I am told that my particular case was rather extreme and it is not currently known if I am in some sort of a remission or what. I don't know and at this point, I am just overjoyed to be able to do things again. I have been told that I now have 'Fibromyalgia', but it is a walk in the park compared to Polymyositis.

Peace Always,
the DragonLady
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Old 08-03-2006, 11:38 AM   #11
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Re: Newly Diagnosed with Polymyositis

I just had a nurse from my doctor's office call to say that had finally received my biopsy results after three months! She said it was NOT 100% conclusive to my having Polymyositis but they were going to continue treating it as so. I was under the impression that the muscle biopsy WOULD BE 100% conclusive. So, now that it is not do I have Polymyositis or not? I have not had a chance to speak to my doctor yet but was wondering if anyone else has had this happen. Could it just have been a bad spot (upper arm) to do the biopsy? They will not want to do another will they? The Methotrexate and the 10mg a day of Prednisone seems to be working (I feel fine). I'm just wondering if these symptoms could now be caused by a malignancy. They opted not to test for that because they were 99% sure I had Polymyositis. Any comments?

 
Old 08-04-2006, 10:01 PM   #12
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Re: Newly Diagnosed with Polymyositis

Hi Tschreib1
I am so mad at your doctor that it took 3 months to get your biopsy result and have his/her nurse call you on the phone instead of talking to you himself/herself. Biopsy result does not take that long, I won't be surprise if the result came in and they just fail to inform you sooner. Don't forget to tell the Registration clerk to send results to your other doctor whenever you have a test done outside your doctor's office. Polymyositis is a very serious disease. Are you schedule to see your doctor on regular basis and getting a regular blood work? Your doctor has to monitor you closely. My doctor ordered blood work twice a week until the result of CPK went down drastically. He was adjusting my meds based on how I feel and the result of my blood work. 10 mg of Methotrexate was very hard on my body, I have to switch to Imuran. If your are feeling weaker tell your doctor, that was the side effect on me. Did your doctor prescribe other supplements like Vitamen E, D, multivitamin? Don't wait for your doctor to call you, call them, ask questions- they are working for you. My biopsy was sent to hospital Lab 300 miles away. Biopsy specimen has to follow special handling for transport. If the specimen is bad then they will do another biopsy. I think it only took less than a week to get my result. That is unexcusable that you have to wait 3 months! You have to make sure that your current doctor is giving you the best of care. Good luck.

Last edited by mword; 08-04-2006 at 10:06 PM.

 
Old 08-05-2006, 09:40 PM   #13
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Re: Newly Diagnosed with Polymyositis

Dear Ms. 'T',

If you've been taking Prednisone, that COULD alter the biopsy results. That is what happened to me---they couldn't tell if I had plain old Polymyositis, Inclusion Body Myositis or what. My neurologist explained that Prednisone can wreak havoc with the biopsy results. I don't know what to tell you about why it took so long for your results. They may have had to send your sample out to a bigger facility for a more conclusive reading.

Swallowing IS a BIG issue with Polymyositis, although docs are slow to respond to this. At least---none of them thought it was a major issue when I was first diagnosed. I know I DID! I think they're a little better about it these days. I DID have some fairly serious problems with aspiration---most serious and scary at night. So much so that I was afraid to go to bed. There were MANY days when I couldn't eat ANYTHING unless it had been thrown into a blender---to include a few Thanksgiving dinners! There were many days that I could not even swallow my pills .
You can always push to see if they come in liquid form. I am doing MUCH better now.

As far as 'flares' go, I had a MAJOR bout with Polymysitis for a number of YEARS, now I only have 'mini-flares'. Polymyositis can run a very different course in different people depending on largely what the original cause was. Not much is known about the causes of Polymyositis---it is my understanding that there is more than one.

Peace Always,
the DragonLady
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Old 08-11-2006, 07:51 AM   #14
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Re: Newly Diagnosed with Polymyositis

They originally told me I would have the results before I left the hospital, then it was in a few weeks. My doctor said it was "unreasonable" but not "unheard of" for it to take so long. They even sent it to another area hospital! I have an appointment on the 24th with my Rheumotologist, hopefully I will get more answers then. I believe the Methotrexate is finally working, I'm down to 10mg of the Prednisone with no symptoms at all. Finally! The swallowing is still a bit noticeable as well as the voice thing...though I saw that that may be a side effect of the Methotrexate. I can deal with that as long as I can still make it up the stairs and no pain! I'm just hopeful of small 'flares' here and there and no more hospital stays!

Thanks everyone for their input!
Tina

 
Old 09-06-2006, 01:28 PM   #15
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Re: Newly Diagnosed with Polymyositis

I am a new member on the board here and I am presently going through test after test as a result of elevated CPKs. CT scan was fine, mammo was fine, chest exray was fine. I am scheduled for a muscle biopsy. I see my rheumatologist on Friday to get blood test results. It sounds like all the tests that all of you have been having. With this being considered to be a rare disease there are a lot you out there with it. This is the diagnosis that my family doctor is leaning towards and why he has sent me to a neurologist and rheummatologist. Do any of you have a rash associated with polymyositis? I am experiencing very sore muscles in my back and neck and my legs feel very weak. I also feel sick to my stomach, (like when I was pregnant!) has anyone experienced that? I understand that this is a chronic disease and that there is no cure for it. All of you seem to be coping very well. I am usually a very healthy person and am finding this very difficult. Good lluck to you all. I will keep you in my prayers.

 
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