Search
Search
About
Log in
Join
Experiences with
Polymyositis
Posts
Communities
197 public posts
Filter results
Lupus Myositis
Just been told by my Rheumatologists that I have Lupus Myositis and I will need to have a muscle biopsy on Friday and some other tests, then its back on the steroids bah! I didn’t initially noticed that something was wrong but of late I have found getting up, setting down, doing my hair and sometimes
Just been told by my Rheumatologists that I have Lupus Myositis and I will need to have a muscle biopsy on Friday and some other tests, then its back on the steroids bah! I didn’t initially noticed that something was wrong but of late I have found getting up, setting down, doing my hair and sometimes
wotshernameagain
in
LUPUS UK
10 years ago
Was tested positive for Romberg's at Royal Free last month.
I have been feeling unsteady on my feet for over a year and was finally given the Romberg's test which proved positive. MRI on 7 December. Have searched the web for the causes and am dreading that the cerabellum (?) is being affected by Scleroderma. Mine is ss. Does anybody know of an incidence
I have been feeling unsteady on my feet for over a year and was finally given the Romberg's test which proved positive. MRI on 7 December. Have searched the web for the causes and am dreading that the cerabellum (?) is being affected by Scleroderma. Mine is ss. Does anybody know of an incidence
Hidden
in
Scleroderma & Raynaud's UK (SRUK)
10 years ago
Any Coeliacs out there with Dermatomyositis
My 4 year old daughter is a diagnosed Coeliac and my question is, are there any Coeliacs out there who have also been diagnosed Dermatomyositis or
Polymyositis
? I know that many other auto-immune conditions can be linked with coeliacs... thank you very much! x
My 4 year old daughter is a diagnosed Coeliac and my question is, are there any Coeliacs out there who have also been diagnosed Dermatomyositis or
Polymyositis
? I know that many other auto-immune conditions can be linked with coeliacs... thank you very much! x
Elisesmummy
in
Gluten Free Guerrillas
11 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Just had a blood test, and the result has come back that I have raised creatine kinase (CK) ( sorry for asking so many question)
It was my lovely GP who gave me the result and said it could be a condition called
Polymyositis
which is treated with high dose streriods for 3 / 4 months and then a reducing dose over another 3/4 months if the CK levels are reducing.
It was my lovely GP who gave me the result and said it could be a condition called
Polymyositis
which is treated with high dose streriods for 3 / 4 months and then a reducing dose over another 3/4 months if the CK levels are reducing.
Carolinee71
in
Fibromyalgia Action UK
11 years ago
I love my Osteopath!
I saw an osteo for the first time yesterday, and I have to stay that I love her. She cracked my back for me and I feel so much better today! She said that I have a very tight shoulder, caused by sitting at a desk, and a band of tightness across the middle of my back, caused by SLE. She took so much
I saw an osteo for the first time yesterday, and I have to stay that I love her. She cracked my back for me and I feel so much better today! She said that I have a very tight shoulder, caused by sitting at a desk, and a band of tightness across the middle of my back, caused by SLE. She took so much
chrissiij
in
LUPUS UK
11 years ago
Not another test....
Well when i got diagnosed with fibro my rhumy con sent me for a load of bloods to be done. I got the results on saturday and it says that i had a positive smooth muscle antibody. With low titre.... What on earth is this cant get an appointment this week for drs unless i ring at half 8 which is impossable
Well when i got diagnosed with fibro my rhumy con sent me for a load of bloods to be done. I got the results on saturday and it says that i had a positive smooth muscle antibody. With low titre.... What on earth is this cant get an appointment this week for drs unless i ring at half 8 which is impossable
kerrykell
in
Foggy's "Invisible Illness" Support
11 years ago
What is polymyositis?
misty14
in
LUPUS UK
11 years ago
Recommendation and your views please ..........................................................
Am shortly due to go back to my rheumy and try methotrexate but am reluctant to as I do like a few glasses of wine each night! Can you recommend any other drug??????????? Have looked at other med's Cellcept, Cytoxan, Imuran, lefunomide etc but would really appreciate your views and opinions.
Am shortly due to go back to my rheumy and try methotrexate but am reluctant to as I do like a few glasses of wine each night! Can you recommend any other drug??????????? Have looked at other med's Cellcept, Cytoxan, Imuran, lefunomide etc but would really appreciate your views and opinions.
beckybooboo
in
LUPUS UK
11 years ago
Research study looking for people with SLE that receive MabThera or Methotrexate
We’ve just been approached by Medicys Limited who are looking for participants for another research study. They are looking to conduct interviews to get a better understanding of experiences and perceptions of SLE and the associated treatments. They are offering an honorarium of £30 to anybody that
We’ve just been approached by Medicys Limited who are looking for participants for another research study. They are looking to conduct interviews to get a better understanding of experiences and perceptions of SLE and the associated treatments. They are offering an honorarium of £30 to anybody that
Paul_Howard
LUPUS UK
in
LUPUS UK
11 years ago
Is feeling overwhelmed and struggling to cope day to day part of lupus/polymyositis or likely to subside over time?
Hi I have CTD (SLE/
polymyositis
) and was diagnosed 2 years ago. I have recently joined Lupus UK and am new to this site aswell. I am positive, and try my best to fight lupus and cope with it. I swim regularly to stay active and maintain muscle strength.
Hi I have CTD (SLE/
polymyositis
) and was diagnosed 2 years ago. I have recently joined Lupus UK and am new to this site aswell. I am positive, and try my best to fight lupus and cope with it. I swim regularly to stay active and maintain muscle strength.
Renu
in
LUPUS UK
11 years ago
Does anyone have SLE & polymyositis.
Just wondering if anyone has
polymyositis
and how you are coping with it. I struggle more with this muscle disease I think then SLE?
Just wondering if anyone has
polymyositis
and how you are coping with it. I struggle more with this muscle disease I think then SLE?
Renu
in
LUPUS UK
11 years ago
New with Lupus - well we think - any ideas or thoughts ?
The he said oh, your ANA came back positive, 1:320 with a Nuclear pattern, he explained it could be scleroderma and
polymyositis
or SLE.
The he said oh, your ANA came back positive, 1:320 with a Nuclear pattern, he explained it could be scleroderma and
polymyositis
or SLE.
jemmyjemjem
in
LUPUS UK
12 years ago
Who has other autoimmune conditions with Sjogren's?
I have Hashimto's thyroid and
Polymyositis
as well as SS and was wondering if many other people also have other autoimmune conditions?
I have Hashimto's thyroid and
Polymyositis
as well as SS and was wondering if many other people also have other autoimmune conditions?
Showgrins
in
The Australian Sjögren's Syndrome Association
12 years ago
How long do you stay off work with Scleroderma/Polymyositis?
I was diagnosed with Scleroderma/
Polymyositis
overlap last May. I believe it first started in 2008 but I just thought it was fatigue from working too much but when I had less work I got even more fatigued.
I was diagnosed with Scleroderma/
Polymyositis
overlap last May. I believe it first started in 2008 but I just thought it was fatigue from working too much but when I had less work I got even more fatigued.
Irene55
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
Who has problems with their mouth with Scleroderma?
In April I was diagnosed with Scleroderma and
Polymyositis
. It was then I discovered the mouth problem was caused by Scleroderma. Since then I exercise my mouth and face, but what I would like to know is how wide should we be able to open our mouth.
In April I was diagnosed with Scleroderma and
Polymyositis
. It was then I discovered the mouth problem was caused by Scleroderma. Since then I exercise my mouth and face, but what I would like to know is how wide should we be able to open our mouth.
Irene55
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
APART FROM FREEXING HANDS & FEET AM ALSO LOSING MUSCLE TONE.
I have noticed that my bottom is disappearing (honestly, not joking). It seems that all the muscle has/is just fading. It is quite so to sit for long periods. Is this normal in lupus/SJS, should I report it to my new Lupus Consultant?
I have noticed that my bottom is disappearing (honestly, not joking). It seems that all the muscle has/is just fading. It is quite so to sit for long periods. Is this normal in lupus/SJS, should I report it to my new Lupus Consultant?
Maggie81
in
LUPUS UK
13 years ago
What is the outlook (prognosis) of Sjögren's syndrome?
Some people with Sjögren's syndrome develop another autoimmune disorder such as rheumatoid arthritis, systemic lupus erythematosus or
polymyositis
. About 1 in 100 people with Sjögren's syndrome develop lymphoma, most commonly non-Hodgkin's lymphoma.
Some people with Sjögren's syndrome develop another autoimmune disorder such as rheumatoid arthritis, systemic lupus erythematosus or
polymyositis
. About 1 in 100 people with Sjögren's syndrome develop lymphoma, most commonly non-Hodgkin's lymphoma.
june_jdr
in
The Australian Sjögren's Syndrome Association
12 years ago
1
...
9
10
10
Filter results
Clear filters
Posted in
All communities
Myositis UK
80 results
LUPUS UK
50 results
Scleroderma & Raynaud's UK (SRUK)
17 results
View top 10 communities
Sort by
Most Relevant
Newest