About two months ago I had a bad chest infection, during which I became surprisingly weak, mostly thighs and upper arm and the strength didn't come back once I was healed of chest infection.
It became a struggle to walk up the stairs, lifting my arm (let alone anything heavier) and my swallowing issues got worse and worse. I also have the typical rash on face, chest, elbows and hands.
Just before Christmas 2024 I saw the rheumatologist and I was admitted to the hospital the very same day in London. Currently I'm on 40mg of prednisone (for 3 days I had very high dose of iv steroids 500mg).
I had skin biopsy and waiting for muscle biopsy.
I do see improvement, so I'm hopeful.
Anyone with DM here? It's all very new to me, would love to hear any helpful advice that worked for others.
Best wishes,
Eva
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Fluffyrainbow
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Hi , going on to medication made a huge difference to me when I was diagnosed. It takes time for the medication to kick in but it does help and things to do get better. The doctors will need to balance your medication to see what works and that may change over time. It is all very scary to begin with . Don't whatever you do believe everything you read online. A lot of that stuff is outdated and things are developing all the time. Take each day as it comes . Good luck and focus on one day at a time. Karen
I've been on prednisone for two weeks now, and I can definitely see improvement. It takes time. My muscles are less stiff and sore, and they regained some strength. They will put me on methotrexate and slowly decrease steroids.🤞🏻
After no treatment locally and now 3 months privately, with further tests on further tests , I have now been positively identified with having statin-induced necrositing myopathy ( previous I told it was NOT statin-induced). My ck level has dropped below 1000 ( was 7000 in 9/24) so heading in the right direction and once below 1000 for a month and inflammation under control, we can begin restrengthening. Yeah! Steady steps and we will get there. I will walk and step up again! So frustrating to have had no support locally.
I have my first local hydrotherapy appointment next week, almost 4 months after hospital discharge, and my 5th fall and 4th A&E in a year. What I will get I do not know…..anyone else had to wait this long?
But at last, I am on a road, and I can possibly see a destination, but will be a few wrong directions until I settle down.
So grateful to family and friends for their love and support.🥰
We were diagnosed with DM pretty much at the same time just before Christmas, not as dramatic as you no hospital stay or IV steriods. My DM has come on gradually, with fatigue, struggling to get off the floor and hanging up washing, swallow problems, breathlessness, nail fold changes and swollen hands and leg.
I have started on steroids, reducing the dose after a months, really noticed the difference at first but now it’s seems not so effective and also I’m reducing. Seeing consultant next week, expecting to be out on methotrexate. EMG test tomorrow.
Just message to see how it’s all going for you, hope you are well.
I'm doing so much better since started 40mg prednisolone daily, just reduced it to 30mg per day and started taking methotrexate about 3 weeks ago.
Methotrexate takes about 4-6 weeks to build up in the body and to have its effects, that's why I started taking it BEFORE reducing steroids. I'm surprised that they're reducing your steroids before you start taking methotrexate.
So far so good, my muscles did get stronger, I'm able to do light exercises daily again and walk without stopping...and as you said, I can get up from the floor, which I couldn't before and of course have a lot more energy now. Oh and my swallowing improved as well, no more thickeners needed!🙏🏻
So I'm very hopeful that the meds do their job and I'm doing my best to look after my muscles.
Recently I have read a lot about nutrition and how a whole food plant based diet can help with a lot of different diseases. I'm wondering if anyone has any stories to share related to nutrition?
Just before I was diagnosed I went vegan/whole food plant based (I used to ear a lot of meat), but I can't tell, if it's the medication or the food or both doing their job.
Glad to hear your condition has improved. I am now on 30mg prednisonal and Azathioprine, but my ck levels have unfortunately increased so cells still being killed. I am due a ivig next week and they will try something other than Azathioprine.
Diabetes being brought under control.
Disappointing, but onwards.
Still need 24/7 care, but they say I will walk but not when.
It sounds like we’re in the same boat, I was dish y with Dermatomyositis in Sept 2023. I too lost the use of my strength and also the muscles in my throat. I had a muscle biopsy that confirmed the diagnosis. My Rheumatologist is still trying to get it under control to this day, I’m receiving IVIg infusions every 4 weeks (2 days in hospital) as well as the continued use of steroids. The aim is to get me off the steroids before they cause me too many complications but I’m thinking that horse has already bolted. I now have cataracts due to the long term steroid use as well as a severe case of insomnia. I take 3 sleeping tablets a night that only gives me up to 3 hours sleep.
How are you coping ? I keep getting told it’ll get better but I’m not confident that’s true. Are you still on steroids or were they able to get you into a replacement like Methotrexate ? that didn’t work for me but apparently it does for others.
I hope things get better for you, I’ll give you as much information as I can.
Very nice to hear from you! I'm sorry you have to go through this.
May I ask, what dose of daily steroids you are on? I started with 40 mg of prednisolone. After a month they reduced it to 30 mg, this is what I'm taking currently. I have an appointment with my rheumatologist in about 2 weeks and I think they are going to continue to reduce the dosage.
I had really bad insomnia on 40 mg, since I'm taking less, my sleep has improved.
You mentioned that methotrexate didn't work for you, didn't they offer you something else instead of methotrexate?
I was told if methotrexate (12.5 mg per week for me) does not work, we would try different medication.
I'm feeling a lot better, the strengh in my muscles and my swallowing have improved.
I'm doing very light exercises every day just to look after my muscles. I have more energy and after 4 weeks I was able to go back to work.🙏🏻 I don't know if diet has anything to do with autoimmune disease, but the more I read the more I start to think that diet has effect on it.
I've read books from Dr Brooke Goldner, Good-bye autoimmune and Good-bye Lupus. She healed herself and many other people from their autoimmune diseases. I'm following some of her protocols, it's very strict, but it could be the reason that I'm responding well to medication? I mean it's and interesting read and food for thought 😊
They first kicked me off on 120mg of prednisone for the first month then over a year they slowly reduced it to 9mg. When I was on 9mg I had a relapse and the disease fought back so they put me back up to 40mg. They have now got me on 20mg but aren’t in a rush to reduce it further until they find an alternative. It just causes havoc with my sleep.
I had to give up my senior role in a private hospital as it wasn’t fair on them, I couldn’t concentrate on my job and stress of my role just made it worse.
I find it strange the disease rendered my top half of my body useless and destroyed all my muscles but my lower half is now where I struggle with strength. I lost the use of my throat an neck muscles to the extent of having to go on a feeding pump and wearing a brace to hold my head up. My Hydrotherapy is helping my legs so hopefully that might do the trick.
My diet is horrendous, I don’t eat a lot due to the fear of choking so I survive on cereals, yoghurts and liquids ( full of sugar) so not exactly good for me.
I’ll certainly be getting the information from Dr Brooke Goldner to see if that will help.
the Photo is part of my breakfast I also take 6 other tablets for pain relief.
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