Diagnosed Anti-Jo-1- AB-Myosytis. (Polymyositis with a twist)

Allergies, blood and immune system
1

Hi everyone. I am posting this message to try and give help or info to anyone who has been diagnosed with the above auto immune disease.

I am a 59 years old builder.

3 months ago I started to feel fatigued all the time.Then I noticed that I was struggling to get back up onto my feet from a kneeling position. My wife would chastise me for falling into a chair instead of gently lowering myself as 'normal' people do. My hands became very swollen and painful, and I found it difficult to grasp things.I also felt quite breathless doing routine activities. I described my symptoms to others as like having a severe bout of flu.

Convinced that my rheumatoid arthritis was to blame I went to see my rheumatologist.

My appointment was 6 weeks ago. He took some blood samples and asked me to go back in 2 weeks.

when I returned he said that my blood tests indicated that something was wrong and that he wanted me in hospital as quickly as possible. I asked for a few days to re schedul my work diary to which he agreed And requested more blood for further analysis

.

24 hours later I received a call from the rheumatologist himself telling me that he had a bed waiting for me at the hospital and I needed to be in it that day.

over the next 48 hours I was seen by several specialists in the auto immune field, some travelling quite a distance to see me.  I had a CT scan, blood tests daily, a nerve conduction examination, a chest X ray, ultra sound, a biopsy ( ughhh) and an ECG. 

I was told that things pointed to scleroderma, only for that to be overruled 24 hours later. 

Finally, I was introduced to my new partner. She is so rare that she doesn't have a name, just a few letters and numbers. She goes by the monica ' ANTI-JO-1-AB-Myositis.

This rare disease of the immune system attacks your muscles AND your lungs. Without the lung issue, it would be known as Polymyositis.

my treatment is 40mg prednisolone daily to reduce the inflammation, and 1000mg Myfenax.(this is prescribed to organ transplant patients).

The Myfenax is to be slowly increased to 2000mg daily, while the steroids are to be gradually reduced.

i have started to feel better in myself already, but, I am very aware that the road ahead is going to be anything other than a joy ride. I will update if anyone needs more info. Thanks for listening.

2

What a bummer !!!! if this is as rare as you say ,you are probably going to be on your own.  Good job there are some intelligent  medicals taking care of you .

Glad to hear that you are ""on the Mend !! let's hope it continues

Chin up. Chat some more if you want to 

Take care 

Jacqueline

3

Hi Jacqueline, double bummer actually. The muscle inflammation that I've had brought on carpal tunnel syndrome. Thankfully the doctors took pity on me and fast tracked me into surgery. I had them both done 3 days ago.

      I Have to say though that for all I've been through over the past month, I feel so blessed that I have managed to throw the chip off my shoulder that I bore for a couple of days. I am lucky also to have a very supportive family, and at the moment I actually feel quite well.

I know that I'll never get better, but if I FEEL better,that will do for me.

4

There you go then. It's good to talk  Carpel tunnel on/in your hands????

My aunt had one done  on/in her hand and wishes she hadn't bothered 

Only one chip ???not enough for a butty then ??

Iv'e just won 15 smackers on a scratch card..unheard of!!!!

Take care 

Jacqueline

5

Oh Steve-Steroids! I was placed on steroids 50yrs ago and have taken courses over the years but they have serious side effects.  I have found through Lyme disease that antibiotics have helped more than anything-Are you on antibiotics?  Book on arthritis advocates antibiotics for arthritis.

6

Hi Jacquibutter. At the moment I've just got to go with the " professional" advise. After reading other people's problems with steroids I am acutely aware that I won't be an exception. ( already suffering long periods of sleeplessness throughout the nights)

The idea is that I slowly reduce the steroids whilst increasing the Myfenax. If all goes to plan then the Myfenax should keep my immune system sufficiently suppressed for me to lead a "relatively" normal life And the side effects are supposedly minimal.

   I have over the past 48 hours noticed breathlessness whilst walking uphill, and to a lesser degree whilst generally getting about. I have an appointment to see the chest specialist in 2 days so I will no doubt find out  what's happening in their. The recent chest X-ray that I had showed several nodules on my lungs.

Still feeling pretty positive on the whole, no negativity has managed to creep in yet thank goodness.

 

 

7

Reduced the steroids from 40mg to 35mg yesterday whilst increasing the Myfenax to 1500mg. Another month and the Mycenae goes up to the maximum 2000mg daily dose which all being well, if it works, I'll take for ever. The steroids are reduced by 5mg monthly with the aim of coming off them all together. 

With regards to wellbeing, I find that I have good days and not so good. For instance yesterday I felt as though my whole body was wired up to the national grid. By body was shaking. No doubt the steroids are playing their part.

Sleeplessness is something I'm learning to manage, ie staying up late and rising early. 

I'm struggling to come to terms with the weakness in my muscles along with the breathlessness. 6 months ago I did a heavy manual job and would go for a run two evenings a week. Now, I have to sit down several times a day and become easily exerted.

 Still, I'm 59 not 29 so I don't need to dash around now I suppose. 

8

Hi, I am (Sanjana T.Ram) 18years now suffering from Dermatomyositis from the age of 9 years , I was a normal child going to school until 6 standard, During that course found me having frequent falls during r physical classes. Consulted doctors to know exactly what the problem was and based on several tests found suffering from the above problem.

This problem started progressing over the years was on Steroids and was frequently admitted to the hospital for fever and cold. The worst part was during fever my allergy of Red ness and itching would grow all over body and strong doses of steroid over a week or 10 days would reduce.

i live in Bengaluru India and Presently on wheel chair for all normal activities. i sit for long hours since i am unable to walk and counter pain in lower back (lower back) and weakness with hands and legs, all my daily activities are taken care by my mother and dad.

Since steriods never worked i am on HOMEOPATHY medicines for the last 5 years and the only change is my redness and itching has not shown up. Kinldy help ime n suggesting if any treatment can help me.

9

Hi sanjana18, sorry to hear about your problems. It sounds to me that you are enduring this illness without proper medication. I take the high dose steroids to reduce the inflammation, which has worked, and slowly reduce them. I also take mycophenolate. (2grams) and will take these for the rest of my life. It is prescribed to heart and lung transplant patients to stop the organs being rejected. Hopefully, this medication will slow down the process of my immune system rejecting my muscles and lungs, ( which is what happens with Polymyositis). 

Without proper medication, as it seems you are experiencing, you will simply deteriorate, as it seems you are.Steroids alone are not the long term answer. I have no idea of what the medical standards in India are like Sanjana, but surely you are entitled to appropriate medication

I am now down to 30 mg prednisolone and am up to 2 grams of mycophenolate.

I find that I trip up a lot now but so far I feel a lot better than I expected to. I feel quite well in myself and I am pushing myself physically every day to keep my muscles active. 

My main worry lately is that of picking up a virus or bug ( or worse). Having little resistance due to a subdued immune system means that I have to take extra precautions. I carry an antibacterial gel around with me to use frequently. I also use a mouth wash 3 times a day.

 

10

Just to update any fellow polymyositis sufferers, I managed to reduce the preds from 40mgto 9mg. But then started to feel weak with flu like symptoms again. Tests revealed elevated CK levels so my pred was put back up to 20mg and the mycophenolate increased to 3 grams. 

I will now reduce the preds at a slower rate to see if the increased dose of mycophenolate does the trick.

overall, still not really come to terms with going from being a very active person who could run, to someone who feels tired and lethargic. I still suffer from "jelly legs". 

I spend half of the day sat in a chair which gives me a guilt complex. I do exercise but have learnt not to overdo it. Mild exercise is fine. Any kind of over exertion results in feeling as though I've been run over by a bus.

 

11

Hi Steve:

I hope you are feeling better and not feeling too bad about your diagnosis. 

I was diagnosed with the same auto-immune disease as yourself in 2009. Yes it's a quite a rare diagnosis.

From my experience, it's not a death sentence ... but there are ups and downs as you might well be aware of. Id suggest it's very important to keep exercising to ensure that you maintain muscle strength and so forth and stay away from sick people! (you don't want to get a cold especially if you at immune compromised). 

All the best for your future. 

cheers,

R

 

12

Hello steve36083 í too was diagnosed with dermatomyositis í had the same problems as you did.... muscle weakness , I couldn't lift my arms and even driving was difficult.... I have been prescribed prednisone 80milligrams and methotrexate 12.5 milligrams......í was doing well, but 2 days ago í started with muscle weakness...don't know was6 going on!....im only 40 years old....

13

Hi Reuben, Hi Ayde,

4 months ago I received an infusion of Rituximab. To qualify for this drug you have to have been diagnosed 2 years and received 2 alternative treatments, i.e. Aesathioprin and mycophenolate. Then my consultant had to fill in 17 forms and jump through hoops on my behalf.

the drug works on newly formed cells so it takes 3 months to have an effect. I am now feeling  a lot better in that I don't suffer the flu like symptoms but my strength and endurance are impaired. I still take the mycophenolate but my steroids are now down to 12 mg. I am reducing them by 1 mg every 3 weeks with the object being to get down to 5mg eventually.. When my bloods reveal a higher count of CK levels then I'll receive another dose of Ritiximab.

Last week I received results from the respitory clinic revealing lung disease. My lung capacity has reduced by half a litre, so I have been put under the care of a specialist in this area.i will also be seen by him at more more frequent intervals than before when I was having pulmonary tests only annually.   I don't suffer chest pain othe than a mild tightness when I either inhale or exhale to the extreme. Walking uphill isn't easy either.

2 and a half years since diagnosis now and since I've received  Rituximab I feel better than I have done at any other time, other than when I was on a high dose of prednisone.

Hope this helps others and good luck to fellow sufferers. It isn't the end of the world.