I'd like to say, firstly, thanks for starting this site. I can't stand Facebook, although I know it has an excellent support group on there. It's nice to have an alternative to those of us who just don't like that forum.
Now my question, hopefully someone can advise. I've had DM since mid 2012. I went into remission, came off pred+methotrexate for about 9 months before DM started to appear again. This time a rash began on my shoulder, then butterfly rash, then holster. Minimal muscle involvement this second time, but extreme fatigue and voice hoarseness.
I've been on and off pred +azathioprine this time (possible allergy to azathiorpine, being investigated). I had to come off the drugs (off since early sept) because of these 'allergy' issues which presented as a sort of gastric flu.
My question is this. I have (for about a month now) pretty painful leg muscles, especially after even mild exercise, like a 30 minute walk. Last time I had DM I just had the muscle weakness - no pain. Is this possibly something like lactic acid build-up because of damaged muscles rather than DM itself coming back?
I'm thinking that maybe I can just take a short course of prednisolone to give me a boost and sort out this issue (I know it will probably be a stop gap measure)
I have IBM and suffer with pains and some cramping in most of my muscles almost all of the time. I sometimes think that it is just from the fatigued but then on other days is just seems to appear for no reason.
I am not a medical expert sorry to say, just a sufferer and sorry this is no real comfort to you but just thought that you might like to know that you are not alone.
I'm sorry to hear you suffer with it too and that you have IBM - I've heard they are doing some good work on treatments, hopefully you can benefit from that.
I found an interesting post on a cycling site (not that I cycle, not DM, just me) which said that the pain after exercise was now thought to be caused by micro-tears in muscle (rather than lactic acid build-up).
This might be the same in our cases, i.e. muscle damage causing inflammation and pain. In the case of healthy cyclists, rest and heat seemed to be the fix. I know heat definitely helps me. If I can get to a sauna or have a hot bath, it helps a lot.
Good luck with the IBM, fingers crossed for good treatment.
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Hi there and welcome. Sorry you are having problems. I have PM with the anti Jo antibody. Before diagnosis I had really bad pain in my arms, it felt like bone pain, it was so deep and bad but it was muscle. It went when I started treatment with prednisone. Have you seen your Rheumatologist and had your blood work checked in case it is a flare. Great to have this Forum. I would never use Facebook do it's great to have this and hopefully we will see it grow and be a great support to all. Mary
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Hi Mary,
I don't have a rheumatologist. I have a dermatologist and a neurologist (I think that's a bit odd, but they both run the dermatomyositis clinic in Newcastle's RVI, so they are specialists at least).
I think i'm starting a flare, but I don't have any real skin issues yet, slight tingling in the areas I get them though, so it's coming - you know how this is a slow burning fuse.
I'm seeing my dermatologist next week and I'm going to ask for a short course of steroids. The problem is that I have a stomach problem and it may be exacerbated by the steroids - it's being investigated. So it may be a case of fix one thing but stir up another. It's all a bit complicated for modern medicine I think.
Hope your PM is in remission Mary!
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Hi there. It's good you are seeing your Team next week. Maybe they need to switch the Azathioprine or add something else. It takes a bit if time to get the Meds right sometimes. I am well and stable so far. I am fortunate to have a good Rheumatologist here in London, best wishes and kept us know how you get on, mary
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Thanks Mary,
I've been on and off meds for almost 5 years. I tried methotrexate and azathioprine. I might have an allergy to azathioprine, they aren't yet sure. It all feels a bit hit and miss.
Its great to hear you're stable - did it take a long time?
take care
Susan
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Hi Suze. I think I was one of the lucky ones. Diagnosed in 2012 I was off the steriods by Christmas 2013 after a very slow taper. I am still on Azathioprine as the antibody I have Anti jo needs long term suppression. So far since diagnosis I have remained well and stable and apart from wonky knees I am back to normal. I keep thinking I will have a flare one day, I know the odds but so far so good. I have a great Rheumatologist, very clever but kind and carding, a fine young man. I do so hope your team get on top of this soon for you. Do you know what auto antibody if any that you have. Best wishes. Mary
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Thats great news Mary and gives us hope.
I think maybe I came off the meth too early tbh. I don't know what my full auto-antibody profile is, i only know I don't have anti-jo but I do have the schleraderma one, sCML. They did once say that they were surprised I had a relapse as my profile didn't fit - not sure what to make of that, it all seems a bit unscientific and confused.
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Hi Suze. Do ask about your Antibodies if any as they have a direct affect on our treatment plan. It reads as if they expected you to just have the one off problem and to be OK after treatment, most people want to get off the drugs, it's understandable but this is a slow business. It takes time, a Marathon rather than a Sprint. I see my doctor in a couple of weeks. I think he will run another full battery of tests like at the beginning, he calls it a 'five year review' he is a very cautious man but I think if he is happy with the results he might drop the Azathioprine a bit to see what happens. I can't wait !!!! Not !!!! Mary
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Yikes, it's scary coming off the drugs - but it so nice too! I'm off them temporarily now while they explore my GI issues and even though I have some flare-up problems, i still love being drug free. Also my hair is growing back (I lost a lot of it on the meth)
Fingers crossed you get off AND stay off!
p.s. your doc sounds really great
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Hi Suze. It's understandable you are having a glare if you are off the drugs, there is still some disease activity there. Hope all goes well with your GI tests and you can restart your treatment soon. Best wishes. Mary
Glad you like this site; agree it's good to have an alternative for those who are not keen on facebook. I started the Myositis Forum UK facebook page in April and I hope this site will flourish just as much.
It sounds like you have an increase in symptoms, so a return to treatment maybe needed. I have had DM for 23 years and relapses have not always been in the same format of symptoms as before.
Pred would be a starting point to help in the short term, but you will obviously have to discuss with your doctor the alternatives, as they will take some time before they become effective.
I was previously on Aza for over 4 years (and had a long remission on it), but it was not a treatment I could tolerate when I relapsed, but oddly was quite happy on a combination of two, Mycophenolate and Tacrolimus.
23 years is a long time. Hopefully in that time you've had long periods of remission.
I'll take those two alternative to azathioprine to the consultant - he seems able to listen to alternatives.
It's interesting that you say the symptoms weren't the same when you had a relapse. I have found the same. I wonder if that is acknowledged across the health community? When I had my second relapse it took some convincing before the consultants agreed it had returned. Took about 4 months before I was given treatment again. TBH I thought I had Lupus as my symptoms were different, the butterfly rash being particularly prominent.
I had 13 years off DM medication in this time, although one of my many other issues is RA so still needed pain medication and anti-inflammatory's. My biggest improvement came when we moved from London with a view to adopt and I started working from home, I then did not have to push myself on an off day. I then had several really good years when I even took up cycling again when I used to do 10-15 miles daily. Sadly I had a sudden relapse just over 5 years ago, oddly at first with breathing and heart issues before the weakness began, but was fortunate because my doctor was on it right away. It's been more difficult to treat this time needing different treatments, including regular IVIG. I have also had a number of setbacks; this year in particular has not been good because I got pneumonia which required 40 days of various IV antibiotics over the summer. Thankfully now feeling much better and I have been regaining my stamina by gradually increasing my daily walk with my dogs. I also have two boys aged 11 & 8 so they always keep me on my toes, they are currently in a permanent state of Christmas excitement at the moment ha ha
That's awful Jo, I had pneumonia once and it really knocked me for 18 months.
It must've been so upsetting having been able to cycle and then getting the relapse. And having two young children. It amazes me that people can cope with this and have young kids. My daughter is grown up with two children of her own and I find just an afternoon with them very tiring (I'm not that old, it's not that, I was a young mother as was she).
Take care, the stamina will build I'm sure. Your kids will keep you young and focused.
Oh and have a lovely Christmas!
Hi Kevin. Hope you are doing well. Thus us a great site, it really works, we just must get more people using it now. Best wishes. Mary
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