Search
Search
About
Log in
Join
Experiences with
Polymyositis
Posts
Communities
203 public posts
Filter results
Myositis clinic in South East
I am new here and was initially diagnosed with D M three years ago. My diagnosis after lots of tests is now A N C A Vasculitis with Myositis overlap. I have only been given prednisolone and Retuximab infusions 6 monthly.The Myositis is now affecting both arms and to some extent my thighs so limits what
I am new here and was initially diagnosed with D M three years ago. My diagnosis after lots of tests is now A N C A Vasculitis with Myositis overlap. I have only been given prednisolone and Retuximab infusions 6 monthly.The Myositis is now affecting both arms and to some extent my thighs so limits what
Jan22
in
Myositis UK
6 years ago
I think I've been diagnosed?!
Gives me leaflets on Lupus and
Polymyositis
. And further reading on methotrexate and hydroxychloroquine. Prescribes my prednisolone. Mid February - prescribed hydroxychloroquine. Late February - rheumatology send the GP a letter detailing the situation.
Gives me leaflets on Lupus and
Polymyositis
. And further reading on methotrexate and hydroxychloroquine. Prescribes my prednisolone. Mid February - prescribed hydroxychloroquine. Late February - rheumatology send the GP a letter detailing the situation.
eescvc
in
LUPUS UK
6 years ago
New beginnings
It's taken a little while since being diagnosed with
Polymyositis
in November to get to this point, as it was thought that I may have lupus. I've decided for 2018, to concentrate on getting as well as I can, it's going to be a long journey 😃
It's taken a little while since being diagnosed with
Polymyositis
in November to get to this point, as it was thought that I may have lupus. I've decided for 2018, to concentrate on getting as well as I can, it's going to be a long journey 😃
VonnieD
in
Myositis UK
7 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Metoject prescription being stopped - help!
I have had a call from my lupus nurse to say my gp has written to them to say the ccg have stopped them prescribing metoject and that I will now have to get it from the hospital. All fine except the hospital don’t do the metoject pens and only do pre filled methotrexate syringes which I didn’t get on
I have had a call from my lupus nurse to say my gp has written to them to say the ccg have stopped them prescribing metoject and that I will now have to get it from the hospital. All fine except the hospital don’t do the metoject pens and only do pre filled methotrexate syringes which I didn’t get on
Mifford
in
LUPUS UK
7 years ago
Mycophenolate
Hi All! I was diagnosed with Systemic Scleroderma with Raynaud’s eight months ago. I have a strongly positive ANA raised ESR and anaemia,GAVE (watermelon stomach)...for which I had an endoscopy and argon diathermy last month and to be repeated next month! My Rheumatologist has suggested that I start
Hi All! I was diagnosed with Systemic Scleroderma with Raynaud’s eight months ago. I have a strongly positive ANA raised ESR and anaemia,GAVE (watermelon stomach)...for which I had an endoscopy and argon diathermy last month and to be repeated next month! My Rheumatologist has suggested that I start
Misty2552017
in
Scleroderma & Raynaud's UK (SRUK)
7 years ago
Any Similar Experiences?
Polymyositis
rheumatic was considered as well. Started on 16mg prednisone, felt miraculously better very quickly. Had no perception of lung or kidney problems, just musculoskeletal. Got a 2nd opinion from a Professor in the Vasculitis unit at Johns Hopkins in Baltimore in April, 2017.
Polymyositis
rheumatic was considered as well. Started on 16mg prednisone, felt miraculously better very quickly. Had no perception of lung or kidney problems, just musculoskeletal. Got a 2nd opinion from a Professor in the Vasculitis unit at Johns Hopkins in Baltimore in April, 2017.
Alliand
in
Vasculitis UK
7 years ago
Newbie
I've recently been diagnosed with
Polymyositis
. I'm due to see the rheumatologist for the first time and not sure what to expect. My hope for a treatment plan so I can start to feel a bit more human😃
I've recently been diagnosed with
Polymyositis
. I'm due to see the rheumatologist for the first time and not sure what to expect. My hope for a treatment plan so I can start to feel a bit more human😃
VonnieD
in
Myositis UK
7 years ago
Can I get IVIG?
What if I don’t have
Polymyositis
and I have IBM? I won’t find out will I until no immune suppressants work and then I don’t want to imagine the state I’ll be in and the potential muscle wastage 😢
What if I don’t have
Polymyositis
and I have IBM? I won’t find out will I until no immune suppressants work and then I don’t want to imagine the state I’ll be in and the potential muscle wastage 😢
MissFG
in
Myositis UK
7 years ago
Lupus and polymyositis
Just saw my consultant and on top of Lupus i have muscles autoimmune disease called polymyasosis. Does anyone else have it too? The Dr may do a muscle biopsy too. I am currently taking hydroxychloroquine and I will start Mycophenolate and another tablet to go with it tomorrow. I am so scared and worried
Just saw my consultant and on top of Lupus i have muscles autoimmune disease called polymyasosis. Does anyone else have it too? The Dr may do a muscle biopsy too. I am currently taking hydroxychloroquine and I will start Mycophenolate and another tablet to go with it tomorrow. I am so scared and worried
Tulipano
in
LUPUS UK
7 years ago
Poly or IBM?
Not long diagnosed but symptoms getting worse over weeks not months. Mycophenolate I couldn’t tolerate so waiting to hear from bloods if I can have another immune suppressing drug. Asked specifically which I have to be told again it doesn’t matter they’re all treated the same. But I’m not text book
Not long diagnosed but symptoms getting worse over weeks not months. Mycophenolate I couldn’t tolerate so waiting to hear from bloods if I can have another immune suppressing drug. Asked specifically which I have to be told again it doesn’t matter they’re all treated the same. But I’m not text book
MissFG
in
Myositis UK
7 years ago
Challenges with Polymyositis and possible lung damage scarring
Hello, my dad has been diagnosed with
polymyositis
and as an affect of the medicines he has been taking his lungs have been damaged with scarring (pulmonary fibrosis) and has a terrible cough. He has tried some corticosteriod drip but only had it once and suffered very bad backache as a result.
Hello, my dad has been diagnosed with
polymyositis
and as an affect of the medicines he has been taking his lungs have been damaged with scarring (pulmonary fibrosis) and has a terrible cough. He has tried some corticosteriod drip but only had it once and suffered very bad backache as a result.
SouthernNIna
in
Myositis UK
7 years ago
Annoying comments
I suffer with lupus sle and
polymyositis
ðŸ˜
I suffer with lupus sle and
polymyositis
ðŸ˜
Tulipano
in
LUPUS UK
7 years ago
Total body inclusion myositis
My mother has been diagnosed with total body inclusion myositis and her neurologist told us there is no effective treatment so we have been watching her get weaker by the day. Has anyone heard of any trials or effective treatments?
My mother has been diagnosed with total body inclusion myositis and her neurologist told us there is no effective treatment so we have been watching her get weaker by the day. Has anyone heard of any trials or effective treatments?
Angelique67
in
Myositis UK
7 years ago
Genital Ulcer appearance
Polymyositis
is now unlikely as 3rd test ck normal. Please can I ask if my sore described above sounds like Behcets? I feel I'm losing the plot. Thank you
Polymyositis
is now unlikely as 3rd test ck normal. Please can I ask if my sore described above sounds like Behcets? I feel I'm losing the plot. Thank you
spiceyandsugar
in
Behçet's UK
7 years ago
Brand new and still dont understand the results..help?
Upon a recent blood test, due to achy joints sore muscles extreme exhaustion breathlessness and unexplained fevers. The dr discovered ANA. 1:320, he referred me to a Rheumatologist at one of the best hospitals here in Michigan. With the referral he had mentioned the possibility of Lupus or RA. I was
Upon a recent blood test, due to achy joints sore muscles extreme exhaustion breathlessness and unexplained fevers. The dr discovered ANA. 1:320, he referred me to a Rheumatologist at one of the best hospitals here in Michigan. With the referral he had mentioned the possibility of Lupus or RA. I was
Sarahsmile
in
LUPUS UK
7 years ago
No Man Land Without a Shield! Any thoughts please
She said
polymyositis
not likely in behcets & as for lupus I had no ANA. Unlikely ck would drop if it's
polymyositis
. Any ideas anyone please? I'm considering getting a wheel chair as I can't get very far without bench rest. As I end up too distressed by pain & fatigue.
She said
polymyositis
not likely in behcets & as for lupus I had no ANA. Unlikely ck would drop if it's
polymyositis
. Any ideas anyone please? I'm considering getting a wheel chair as I can't get very far without bench rest. As I end up too distressed by pain & fatigue.
spiceyandsugar
in
LUPUS UK
7 years ago
Not even a professional weakling
This time last year, I was a member of no less than THREE (count 'em!) professional registers. Today, I got my automated email advising me that my membership of the NMC has lapsed - "it is now illegal to practice as a nurse or midwife". That was the last of my registrations left, so I am now a TOTAL
This time last year, I was a member of no less than THREE (count 'em!) professional registers. Today, I got my automated email advising me that my membership of the NMC has lapsed - "it is now illegal to practice as a nurse or midwife". That was the last of my registrations left, so I am now a TOTAL
whisperit
in
LUPUS UK
7 years ago
Raised CPK and electromyography (EMG)
Well, I was having a really good day until my rheumy rang this afternoon to tell me he is unhappy with my elevated CPK levels and that he wants me in next week for an EMG presumably to look for myositis or some muscle-wasting condition. My rheumy usually has a very clear agenda of his own, so I have
Well, I was having a really good day until my rheumy rang this afternoon to tell me he is unhappy with my elevated CPK levels and that he wants me in next week for an EMG presumably to look for myositis or some muscle-wasting condition. My rheumy usually has a very clear agenda of his own, so I have
whisperit
in
LUPUS UK
7 years ago
Myositis Diagnosis Problems
Could it be inclusion body myositis (I'm 38) or early stages of
polymyositis
? I should be relieved except my walking is so painful & hard, it's like I can't walk any further. I struggle look after self & toddler. Please does anyone have any ideas? Much thanks Vic
Could it be inclusion body myositis (I'm 38) or early stages of
polymyositis
? I should be relieved except my walking is so painful & hard, it's like I can't walk any further. I struggle look after self & toddler. Please does anyone have any ideas? Much thanks Vic
spiceyandsugar
in
Myositis UK
7 years ago
A little about Hyper-Pigmented Swelling with Elevated Creatine Kinase and HypoT
It is also misdiagnosed as
polymyositis
or other primary muscular disorders. This swelling is seen in hypo, hyper, AND Hashis, though the physiological relation of elevated CK and hypoT is not fully studied.
It is also misdiagnosed as
polymyositis
or other primary muscular disorders. This swelling is seen in hypo, hyper, AND Hashis, though the physiological relation of elevated CK and hypoT is not fully studied.
TappedOut
in
Thyroid UK
7 years ago
1
...
6
7
8
...
11
Next page
10
Filter results
Clear filters
Posted in
All communities
Myositis UK
84 results
LUPUS UK
50 results
Scleroderma & Raynaud's UK (SRUK)
18 results
View top 10 communities
Sort by
Most Relevant
Newest