Sjogren's myositis?

[CMNK12]

I know I ask way too many questions but here goes.....anyone with sjogrens myositis?
If so, can you tell me about your symptoms and treatment if you don't mind, please? Thanks. CK

[kellyk]

I have been told that I have a SJogrens related Myopathy...

I have proximal weakness.. in my hips shoulders anterior neck.. to start.. currently I am experiencing issues with my forearms and my right ankle..

I have been on prednisone, and Mtx ... prednisone was like a miracle drug at first but after a while it seemed to lose some of the bang.. and I started getting weaker again... and because prednisone is so hard on the body you can't take it forever.. then they tried MTX.. and that just seemed to stop the progression of the weakness..  to me the side effects of the drug didn't out weigh the benefits

I am currently receiving  IVIG once every four weeks for the last 10 months.. a total of 50 grams.. it helps most of the time the odd month I seem to struggle more then others... I am a far cry from where I was at before starting the ivig.. I was crawling up stairs like a little kid for yrs.. now I can always make it upright.. on a bad month I need the railing... I am able to lift the coffee pot now..before some days my coffee cup was heavy...


It doesn't seem to help with the forearm weakness and I am not convinced it is helping the ankle weakness either...

[cargillwitch]

yes my rheumatologist diagnosed the muscle pain I was experiencing as Sjogrens' related myosistis which he described as clinically different than fibromyalgia( which is what I thought it probably was)

Treatment suggested was just Tylenol- which I can assert does nadda ! except probably increase my chance of decreased liver function!

The large muscles in my forearms and thighs just ACHE some days. Exercise helps somewhat but sometimes I just have to deal with it.

[CMNK12]

Thanks for the responses ,I am waiting for a myositis profile to come back... but who knows. One doctor says maybe it is that, one says no, I really don't care anymore I just want to get better. haha. CK

[slccom]

I know I ask way too many questions but here goes.....anyone with sjogrens myositis?
If so, can you tell me about your symptoms and treatment if you don't mind, please? Thanks. CK

It is not possible to ask too many questions here!
Sharon

[MaryBee7]

This is listed on my diagnoses list, added last fall.

[vrystaat]

Besides Polymyositis, there is a disease called Inclusion Body Myositis, which occurs in SS .
I slowly started this in 2013, but now I am very unsteady when walking. I stumble a lot, and sometimes I fall. I am very weak. Contrary to Polymyosistis, there is no cure.
It occurs mostly in the thighs & arms, but I have it in the paraspinal muscles too. It is very debilitating. Very frustrating, because my Rheumatologist does not have clue.

To answer the question of diagnosis: I have severe SS. Suddenly in 2014, my legs started giving out, my arms became weak & I had swallowing problems. MRI showed extensive fatty replacement of my thigh muscles and spine muscles. My blood tests showed high creatinine kinase. I had muscle & nerve biopsies. The distribution of the pain & atrophy suggests the Inclusion Body Myositis. This is a rare, but untreatable condition.
Finding a Neurologist with the experience to help has been impossible, at least in Southern CA. I guess I should go to Johns Hopkins.

[JoannaP79]

How was your IBM diagnosed can I ask? I've reported an issue with muscles for years and no acknowledgement of it at all. I don't fit the profile of IBM from all I have read but also don't for poly and derm type.
So I get told it's lack of excercise and even anxiety. I have severe paraspinal weakness amongst other issues

[lorigacc]

A few years back (3-4), I was having trouble with weakness in my thighs.  My doctors (who only see "normal" issues) said it was from the statin drug I was taking. I had been on this drug for at least 10 years.  They took me off it even though it was doing its job very well. Eventually the bout of muscle weakness went away. Personally, I feel it was myositis, but they just don't want to hear that.  Currently, my cholesterol numbers are bad, so I will need to go back on a statin. Waiting to hear how that conversation goes.  The only doctor that even mentioned the possibility of myositis was my neurologist, but he never wants to overstep his boundaries with my rheumatologist
P.S. No such thing as too many questions on this forum

[jazzlover]

Stay away from statins .. do your homework on cholesterol first.

(Google "Dr Sinatra + cholesterol)

How exactly is myositis diagnosed? I've been having worse pain in my thighs and my other muscles aren't too happy either.

[SjoGirl]

As others have said it is quite common, for me all over. Drugs like Gabapentin or Tramadol can help if you are looking for options.

[Carolina]

I have severe Coronary Artery Disease (three angioplasties and two stents in 1999).  My coronary artery called "the Widow Maker' was 95% blocked at the time it was cleared.

I have taken 80 mg of Lipitor for 19 years.  I have repeated tests that show no new blockages in my heart during the past 19 years.

I don't 'know' that I would have had the same result without the Lipitor (which is, of course, a statin drug), but I do know from earlier experience with statins that my blood levels of cholesterol would be sky high without them.

I have genetically extraordinarily high blood levels of Cholesterol and developed arcus senilis at age 37, which is a lipid ring around my iris, the result of very high cholesterol.  The silver rings are very easy to see (I've had them now for 50 years!) and look somewhat like I'm wearing contacts to those who don't know what they're seeing.

We are all different, and often have unusual reactions to medications, of course.  I have reactions to several medications, and I've has a medication stop working, or begin causing serious problem.

It is important to do research into our medications and treatments that is based on the scientific method.  Often what we find when we Google a condition or medication is promotional materials, sometimes using highly charged scare tactics, directing us to buy a book or supplement, often of unproven value.  I always use the term 'pubmed' or NIH when searching, to eliminate advertisements.

Each of us find, mostly though trial and error, ways in which we can support our health and wellbeing.  We share what we have found, but none of should prescribe a course of action for another person.  We can only share our personal experiences.  Personal experiences and opinions fall into the category called 'anecdotal' information.  Anecdotes are not research data.  And even research data can be flawed.

So we forge ahead bravely and know that we are not alone.  And we also know that medical knowledge of human physiology, especially the Immune System, is often very limited, and even when a diagnosis can be accurately made, there may be no cure or treatment yet available.

It is frustrating when we are complex, difficult 'cases' for health care providers.  It takes enormous bravery to put ourselves forward every day, seeking the medications, treatments and providers that can ease our lives.

Regards, Elaine