support/ help

[Cornwall24]

My husband has been in hospital since the 26th of May, he was a patient for 6 days before we had a diagnosis of dermatomyositis. He is currently in intensive care, he has a feeding tube and is bed bound. He is 53 years old with no medical history, 5 weeks ago was working 10 hour days with a very physical job. I would love anyone to reach out and give me some support, advice etc to help us navigate the road ahead - Thanks in advance

[Jo-Goode Administrator]

Hi,

Very sorry to hear about your husband's health, I hope he will respond to treatment very soon.

My onset in the early 90's (aged 25) was also unusually rapid & extremely aggressive, as lost all function & heart & kidney's were failing. I'm approaching the 30th anniversary since my diagnosis, in this time had a long period of remission; unfortunately relapsed in 2012 but remaining stable on treatment.

This web based group is unfortunately not very active, which is why I started a UK group over on facebook 8 years ago, it's a private group so only members can see posts.

Please join us via this link facebook.com/groups/themyos...

Jo Goode - Trustee/Treasurer Myositis UK

[Cornwall24 in reply to Jo-Goode]

Thank you, I’m not on Fb at the moment but I believe he has joined a support group on fb

[stiff19 in reply to Jo-Goode]

Sorry to butt in but jo, you say about aggressive onset, my progress has been slow somewhat and still do not know what is causing my symptoms but with myositis of type a realistic suspicion for me I was intrigued to read your reply. I was diagnosed back then with fibromyalgia, it didnt fit and still doesn't but I went on holiday in Greece back then felt very weak and unwell when we went and then got extremely weak went to docs and next thing I knew (or didnt know)I was being rushed to hospital. apparently my organs were failing. I was in hospital for a few days and never got to understand what had happened because of language barrier. I had a similar episode but not so severe when I felt I was so weak and seriously thought I was slipping into coma during covid times but luckily didnt but thats the only way I can explain it. From then was an onslaught of symptoms inc skin . so can myositis begin aggressively or slowly progress or even both?

thankyou

[Jo-Goode Administrator in reply to stiff19]

Apologies for delay in replying; I don't monitor this group as often compared to the far larger/active Myositis Communty GB group I admin on facebook + time for Myositis UK role.

In reply to your post (I'm a lay person sharing my experience) some sub types of Myositis can be more aggressive than others, this may be faster muscle disease progression or complications; many patients now have a known auto-antibody (although still not uncommon for a patient not to have one, but more being found with research) this can guide the doctor of a possible disease path & likely complications to come from that particular antibody type. Knowing antibody type can aid treatment choice & how to monitor the patient. You can have some people going on for years without a diagnosis, they might be placed on medication for a misdiagnosis for a period that may stable symptoms somewhat (Fibromyalgia is occasionally given as a misdiagnosis of Myositis). The largest category is where it takes 4 -5 months to a year before the disease progression may land them finally in front of appropriate doctor or admitted via A & E. There is then another far rarer category where a person can become seriously unwell over a few weeks with complications, sadly in my experience with contact with patients families, men often have a poorer outcome because seeking medical care far later. Although women make up the highest number with Myositis (apart from Inclusion Body Myositis) because the average onset age are more common to start in middle age, initial symptoms may be put down to menopause, age or even depression, particularly with older GP's. This issue is somewhat reducing with passing time because Myositis has been included in medical training (Myositis UK advocated for this), so reports of GP's suspecting Myositis first when the patient presents & referring on to appropriate care is becoming more common with each passing year.

My progression aged 25 was over a few weeks, one knee blew up like a football overnight, followed by other the following day; affecting all joints over 2 weeks; 3rd RA diagnosed & advised I needed double knee replacement by a private consultant (placed on waiting list for surgery & rheumatolgist). Over Christmas week I lost all muscle function & developed serious heart & kidney failure & breathing difficulties. I was so fortune to see a rare doctor in those days to suspect the disease (almost 30 years ago) & that I responded to aggressive treatment & diligence of his care . My later relapse after a long period of remission took on a rapid path, but because of previous diagnosis & Myositis specialist kept in place & was put on appropriate treatment plan promptly; so far less decline & complications (however I seem to specialise in complications to keep everyone on their toes!).

UV is a known disease trigger for Dermatomyositis, so perhaps could explain your experience in Grease? Some medical tests used to monitor disease activity in Myositis (CK & Troponin in particular) are usually tests for heart complaints; its not uncommon for a patient first thought to have had a serious heart episode, then found to have no heart involvement after further testing, then later to be diagnosed with Myositis (inflammatory Myopathy) after further testing.

From my own experience & hearing from many fellow Dermatomyositis patients, high UV & temperatures can make them feel extremely unwell, sometimes very quickly; I can recall a several years ago walking a short distance from a clinic appointment to car park in extreme high temperature & high UV, only making it half way before losing the ability to walk & staggered nearly into the road before someone helped me.

Covid: Myositis patients have relapsed after contracting covid (other viruses/infections can cause onset or relapse). There is research that demonstrated a higher incidence in one part of of the UK Myositis during the pandemic, then what normally would be expected in that area (around 50 cases higher) & later know of handful of people who say symptoms started after vaccination (vaccination of other types is known as a possible disease trigger).

If you made it to the end, hope my long ramble is helpful...

[stiff19 in reply to Jo-Goode]

Thankyou so much and far from a ramble but very informative and relatable and of much help. sorry to hear of your problems 🙏 out of interest and your experience and with those suffering has myositis been known to affect one side more than the other? I appreciate your taking the time to have replied

[Jo-Goode Administrator in reply to stiff19]

Myositis disease is symmetrical, however some patients have mentioned they feel they are somewhat weaker on their non dominate side. I have this myself, but could be due to naturally using your dominate side more, so rebuilding slightly more muscle.

[Cornwall24 in reply to Jo-Goode]

My husbands CK was 21,000 when he was transferred to intensive care :-(.

[Jo-Goode Administrator in reply to Cornwall24]

That is very high. However, CK is not always a good indicator of disease activity, so other measures are used, importantly the patient report of function should be taken into account, as well as examination & testing. I have heard of people walking around unaffected with an elevated CK of 38,000 & others left with virtually no function with it in the low hundreds.

[Cornwall24 in reply to Jo-Goode]

His muscle biopsy and skin biopsy supported his diagnosis. He is tube fed at the moment and has no voice. It’s been incredibly hard. I may be just being sensitive but I feel like I’m having to justify our trauma. He was working 6 days a week, running a successful business fitting windows and conservatories 8 weeks ago and is now virtually bed bound and incontinent . I was really looking for some support

[Cornwall24 in reply to Jo-Goode]

We are now entering week 6 in hospital. Hoping to start being able to sit up and maybe stand soon

[Jo-Goode Administrator in reply to Cornwall24]

Apologies for the delay in replying.

So good to hear an update of positive progress. Rehabilitation/recovery will take a long time, even a healthy person spending a week in bed can loose 20% of muscle without the onslaught of the disease.

Sending my best wishes,

Jo