Bill/polymyositis

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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/26/2008 2:44 PM (GMT -7)   
I noticed that you have this. I was wondering if it effects your lungs. I'm not trying to be a hypo but I have been doing some serching and it looks like I have symptoms of it. iI was going to ask my doctor about it next week. What can you tell me?
thanks
carol
 
Possible scleroderma.  stage 4 COPD,  Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 8/26/2008 2:55 PM (GMT -7)   
Carol,
 
I do have polymyositis and it did not hit my lungs although a small percentage of cases have lung problems.  These usually occur as the disease progresses and are not the initial symptoms.  Sometimes muscle weakness in the diagphram will mimic pulmonary hypertension and that was my situation.  The docs were convinced I had it but after a right heart catherization they said my lungs were fine.
 
Initial symptoms of PM are proximal muscle weakness affecting the hip and should girdle.  Getting up from chairs, climbing stairs, raising your arms over your head are the most common symptoms.  You can also have swelling, redness, muscle pain and swallowing problems but every case is a little different.
 
It usually takes a muscle biopsy to get a firm diagnosis as several other diseases have similar symptoms.  Lab tests usually will indicate some type of myositis.
 
Here is some info on the 3 types.  These are very rare and complicated diseases that are difficult to diagnose and treat.  IBM has no treatment and is different from PM or DM.
 
 
Hope you don't have it.  Lupus can cause muscle problems but the pattern of weakness is usually not the same as PM or dermatomyositis and is completely different from inclusion body myositis.
 
Hopefully you do not have any of these.
 
Bill
 
 
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/26/2008 3:19 PM (GMT -7)   

Bill thanks for the information. I hadn't seen that link. I do have lead in my legs especially in the mornings and I wear button up blouses because it hurts to lift my arms in a pull over. I have right side heart stiffness. I also read that a possitive titer with nucleolar pattern shows up. which I have. They said new tests beleive that it could also be caused from mom's and babies blood mixing during pregnancy. I am rh neg. my first child was rh pos. plus I have lots of esophogus problems. I guess I should ask my doctor about it but I feel like they will think I'm crazy since it's so rare. Some doctors treat you like your stupid. I'm almost embarrassed to say anything. This will be the first time seeing this doctor. I'm not sure what to expect.

Anyway thank you so much for your help. I hope you are doing well. You are always so encouraging.

hugs carol


 
Possible scleroderma.  stage 4 COPD,  Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 8/26/2008 6:37 PM (GMT -7)   
Carol,
 
If you don't have significant muscle weakness you probably don't my a myositis disease.  The labs are often negative until the disease is fully developed.  They look for an increased SED rate and test for CPK (enzyme from muscle breakdown) if they suspect it.  The final test is almost always a muscle biopsy.
 
Like I said, watch for muscle weakness which will be significant and symmetrical around the hip and shoulder girdle.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


tryn2gtbtr
Regular Member


Date Joined Apr 2011
Total Posts : 76
   Posted 5/1/2011 1:06 AM (GMT -7)   
smhair  Hi afellow polymysitis patient. I was diagnosed in nov 09. after a hosptial stay of 5 days. They sliced and diced me. Every doctor came. MY cpk's where at 11,000 almost went into kidney failure and since my liver enzymes were so spiked i had an mri of my liver, which totally through me over the edge since my dad died in 92 of liver cancer. It wasn't until they did a muscle byopsy on my left upper thigh, then they were certain i had myositis. and of course it had to be poly. I was put on a high dose of prendisone 60mg. Along with pain meds, stomache meds, folic acid and potassium. I finally got to a great rhymatalogist who finally put me on methotrexate which finally got my ck's down. I'm at 110. I see him again in late may and pray my ck's are still declining. I"M now on 1mg of prednisone. Thank god because i blew up like a blow fish, with a ravinis appetite. Gained 30 pounds! i couldn't stop. At night my heart would pound out of my chest. So glad to almost off that drug.It was the most horrific thing I've ever been through so far in my life. Very humbeling. Had to go to the S.O.S. clinic in orange county, but it was a blessing because if it wasn't for that doctor asking for my cpk count who knows what would have happened to me. He saved my life.Dr.Patrick Chen I love you. I had a chest xray last year so far so good. I do know if you have this polymyostis you have a 40 percent chance of getting lung disease than the normal person!My doc says i have a good chance of going into remission but will have this all my life. very scary, I've had alot of sleepless nights in the begining couldn't wrap my head around it. Had to give up everything and come and live with my mom, whom i ran from all my life.Well I wish you all the best. and if you find out any new news please let me know. take care of yourself. If you can get into a pool and just move swim walk anything in the water is wonderful. Talk to your doctor about the methotrexate.  goodluck,susan/mazel tov
 

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 5/1/2011 8:18 AM (GMT -7)   
Susan,
 
Sorry you have pm.  I suggest that you post on www.myositis.org which is The Myositis Assoc site.  You will find many others with pm, dm and ibm and a wealth of experience.  I am a frequent poster there as well.
 
You can't put much stock in numbers with myositis since they are rare diseases and good stats have not been determined.  Some patients develop pulmonary problems but others, like me, have weakened breathing muscles that mimics pulmonary hypertension.  As I got stronger the condition went away.
 
No one can predict remission but if you have responded to meds well that is a very good sign.  My case was extreme and life threatening.  I also have lupus and scleroderma which greatly complicated things.  Lost 40 lbs of muscle in a week and that induced hepatitis.  A 5 day treatment of ivig saved my life but I was quadriplegic and could not swallow anything.  After months in rehab I was vertical and somewhat functional again although a shadow of my former fit self.  That was over 5 years ago and I have since made a miracuous recovery.  Despite so much permanent damage I have returned to an active life and generally feel good....no relapses so I have my fingers crossed.
 
Are you doing any physical or occupational therapy to recover your strength?  If not, you should discuss this with your doctor.  It is essential if you want to recover your strength and some studies have shown it actually reduces inflammation.
 
Good luck and hope to hear from you on the TMA site.
 
Bill
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