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Myositis Support Group

Hello Everyone,

#1

Something crazy happened around September 2016. My wife noticed on our walks that I was completely and inappropriately out of breath. She asked me if I was okay and told me to go see our family practice doctor. That was the beginning of this nightmare.

So I promptly ignored her good advice and went on with life. I grew up in an environment where you did not go to the doctor unless you were dying or needed a limb re-sewn on. Then in October, just one month later, I had the carpet cleaners over. They did the carpets etc. and two days later I broke out with what I thought was the mother of all rashes. I had it on my scalp, eyebrows, ears, hands, elbows, knees, back, torso it was everywhere, itchy and painful. I of course went to see a Dermatologist and we both concurred that it was likely to some allergic reaction to the carpet cleaners. He gave me some creams, etc. and sent me on my way.

That wasn’t the end of it. It’s hard to pinpoint exactly but I think it was within a month of this that I started to notice that I was exhausted, wore out, and had wide spread weakness and soreness across my body. I could hardly get off the floor. The creams were not alleviating the rash and I noticed that I was starting to lose weight. I was also experiencing wide spread cramping; getting cramps in places I didn’t know I could.

I went to my family practice doctor and followed up with the dermatologist. They both started, without talking to each other, looking at some kind of autoimmune response in my body. Lab tests, blood work, skin biopsy, short burst of antibiotics coupled with short burst of high dose prednisone and time and both concurred that it may be Dermatomyositis (DM); interestingly enough they both called me on the same day and told me that news. Both recommended I go see a Rheumatologist and referred me. I went.

Let’s see here are the list of tests that have been performed that I can think of off the top of my head.

  1. Muscle biopsy right upper leg.
  2. EMG left leg.
  3. Chest X-Ray.
  4. PFT (pulmonary test).
  5. CT Scan.
  6. Numerous blood tests.
  7. Eye exam (recorded baseline in anticipation of potential future use of Plaquenil) You need to do this if you plan on taking the medication; long term usage can result in potentially sever eye issues.
  8. Neurology consult.

Many more tests to come in the future.

After the muscle biopsy and EMG my Rheumatologist put me on 80 mg a day of prednisone. Besides acquiring most of the side effects (no weight gain weirdly) it did have the intended effect of crushing my CK score. Two weeks of 80, dropped to a month of 60, I anticipate that will be dropping again to 40 or so. I guess it takes some time to get off of it. I can tell you it’s making me a twitchy, sweaty, scatterbrained, insanely angry (mental turrets), insomniac person but hey, if it can throw this thing into remission even better.

Probably one of the lab tests that you all would be familiar with is CK. I progressed from 231 to 359, to 873 (start 80mg prednisone), to 440, to recently back to normal 79. It was caught “early” and hit with prednisone but I am getting ahead of myself.

Rash is no longer roaring and has come down some but it is still there with continuous breakouts of the dreaded Gottron’s Papules on my fingers which sting, are sore, and painful. I also have these tiny little cuts all over my fingers (tips and sides) that will not heal. Makes it hard to type etc. I think those are left over from the major rash breakout.

The good news is the Neurologist concurred with the current diagnosis of DM. It’s not something worse like ALS.

I still have the pulmonary doctor to see, still out of breath and both the XRay, PFT, and CT scans all showed something bad happening in that department. So we have that outstanding. Also, my family practice doctor wants me to get some cancer screenings which I am going to do.

The general good news is I feel that things are progressing in a positive direction finally. Lab work is looking good etc. I lost over 30 pounds since this started (unfortunately all muscle) I started walking again and promptly over did it; easy to forget that I need to build up. Needless to say I experienced cramping in every muscle on both legs for 1.5 miles but I had to get home.

I still feel at times that this is all in my head (see above comment about going to the doctors) of course that is silly since there is all kinds of physical proof. CK 873, LDH 920, Aldolase 8.5, AST 73, ALT 93 are not figments of my imagination and a huge rash that seems to localize over joints and in places that are fitting for DM cannot be “generated” for pity. I still struggle with the mental part of all of this.

Anyway, that’s my story. I Joined this site so that I could try and get a better idea of how this all progresses and to help and get help if needed. My story is pedestrian and sounds pretty common. I am stunned at how long it took for some people to be diagnosed. That scares me a little.

Thanks for reading and let me know if I can help out.

Peder

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1st flare up. Rheumatologist put me on methotrexate
#2

Hey Peder, welcome here!

This is a very quiet community, so I hope you get some good responses to your post. If not, I suggest that you use the search tool, and go looking for threads that you are interested in.

If you post on an existing thread, the other members who are on that thread should receive a notification of activity. That may bring some people out of the woodwork.

Best of luck with this and with managing your condition.

Seenie

PS I just work here :wink: I don’t have Myositis, but I will tell you that it took 15 years and a lot of damage for the doctors to diagnose my Psoriatic Arthritis. Unfortunately for people with rare diseases and conditions, it often takes a long time to figure out, and before that happens, a lot of us think we are nuts and imagining it all. LOL

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#3

Welcome. You are very lucky to have such a fast diagnosis. I was in a major hospital for 4 days and was told to go home and drink lots of water…no diagnosis. Luckily for my PC and his referral to a rheumatologist, I was diagnosed fairly quickly but my ck was + 15k. At the worst point I couldn’t lift my kindle and I had a very hard time swallowing. Luckily I’m retired so no work issues. Fast forward to now…22 months later. I am now on methotrexate and 5m of prednisone. I can do most things now and I’m not in any pain. I did have one relapse. My advice to you is to try to keep as active as you can but when you’re tired stop. Don’t way over exert yourself. You will find you don’t have that extra punch you used to. I wouldn’t notice myself getting better each day but there would be a day I could do something that I couldn’t do a few days ago. It will be subtle. Pay attention to this bcuz the same thing will happen if things for the worse. I told the Dr something was wrong b4 the ck level started to rise again. Develop a good relationship with your rheumatologist so he knows you are not a whiner.
Read what others have wrote. Others are in a lot worse shape than we are. We are all in the same boat…we won the wrong lottery. DM 5 in a million with no cure. For me, it was a reminder that life can turn to poop fast so cherish life it’s very precious. Good luck.

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#4

Thanks for the welcome! I have read through a lot on the site and have picked up some good insight. Whilst reading through some of the posts the lag of diagnosis for some is one of the things that jumped out to me. That would be very frustrating and a form of mental prison not knowing what is going on and that there is a “plan” to manage or recover from whatever it is.

That is some solid advice Talkamotta; thank you for sharing your story. I definitely over did it on that walk and have learned my lesson on that. I am planning on continuing to walk daily and I am thinking of starting a light yoga routine to try and rebuild some strength. One day at a time of course since I am weak as a kitten now. I bet I have broke more dishes in the last 2 months than I have the last 10 years. I can barely grip things so I have some ground to make up.

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