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Polymyositis
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annmarie
I am newly diagnosed with
polymyositis
and ILD (caused by the
polymyositis
). I have had chest infections over the past three months while on mycophenolate. Where as the ILD cough is dry and non productive I have been ver wheezing and the cough is very productive.
I am newly diagnosed with
polymyositis
and ILD (caused by the
polymyositis
). I have had chest infections over the past three months while on mycophenolate. Where as the ILD cough is dry and non productive I have been ver wheezing and the cough is very productive.
Airfry
in
Myositis UK
7 months ago
Intrinsic factor blood test
I had a blood test and got the result today - I haven't a clue what this means?? Any ideas? Intrinsic factor antibody level Intrinsic factor antibody level < 0.5 U/mL [0.0 - 6.9]; Negative <7 Equivocal 7 - 10 Positive >10 I can't even work out which part of the above is the result? I receive B12
I had a blood test and got the result today - I haven't a clue what this means?? Any ideas? Intrinsic factor antibody level Intrinsic factor antibody level < 0.5 U/mL [0.0 - 6.9]; Negative <7 Equivocal 7 - 10 Positive >10 I can't even work out which part of the above is the result? I receive B12
Loobs39
in
Pernicious Anaemia Society
1 month ago
Gochujan
My GP discovered that I had elevated liver enzyme 7800 April 23 and sent me an ambulance to be thoroughly checked and went through CT San, MRI etc, seen by Hepatologist and Rheumatologist who suspected Myositis and after muscle biopsy on my thigh, she confirmed I have Mhositis. Since then, I have been
My GP discovered that I had elevated liver enzyme 7800 April 23 and sent me an ambulance to be thoroughly checked and went through CT San, MRI etc, seen by Hepatologist and Rheumatologist who suspected Myositis and after muscle biopsy on my thigh, she confirmed I have Mhositis. Since then, I have been
Gochujan
in
Myositis UK
1 month ago
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REFERRAL TO THE FORUM
"Long time member of PMRUK. What I thought was r/o, new physical evidence has brought me here. The PMR community has been great for the past 2 years, but they believe I may receive better guidance here in the Myositis forum. Honestly, as you read my latest post in the PMR forum I may not belong here
"Long time member of PMRUK. What I thought was r/o, new physical evidence has brought me here. The PMR community has been great for the past 2 years, but they believe I may receive better guidance here in the Myositis forum. Honestly, as you read my latest post in the PMR forum I may not belong here
SMH4CRNA
in
Myositis UK
2 months ago
howdo gain weight? If you have reflux problems?
Hi, I have been diagnosed with systemic sclerosis/myositis, I lost 20kg, and I eat a lot but have no weight gain, if I eat fats I have big problems with reflux. Is anyone here experiencing the same problem? Thank you
Hi, I have been diagnosed with systemic sclerosis/myositis, I lost 20kg, and I eat a lot but have no weight gain, if I eat fats I have big problems with reflux. Is anyone here experiencing the same problem? Thank you
skinnynow
in
Scleroderma & Raynaud's UK (SRUK)
3 months ago
Having chest pain
Hello everyone. Still going through the phase of being diagnosed even though I do have a current diagnosis of mctd. But my Ssa Ro52 was positive and Ana 1:640 nucleolar and symptoms lean more toward Sjögren and myositis. I will be going to a rheumatology center soon. But I wanted to know has anyone
Hello everyone. Still going through the phase of being diagnosed even though I do have a current diagnosis of mctd. But my Ssa Ro52 was positive and Ana 1:640 nucleolar and symptoms lean more toward Sjögren and myositis. I will be going to a rheumatology center soon. But I wanted to know has anyone
Jadaboo4
in
Myositis UK
3 months ago
Newbie here.
Hi, I'm Ian. Sorry for this long post. Just found out today after a 7+ yr journey of trying to figure out what is wrong with me that I have markers for Myositis ok my blood work. I started with very low key fatigue almost 10 years ago, with brain fog calling around 7 years ago (trip to the memory service
Hi, I'm Ian. Sorry for this long post. Just found out today after a 7+ yr journey of trying to figure out what is wrong with me that I have markers for Myositis ok my blood work. I started with very low key fatigue almost 10 years ago, with brain fog calling around 7 years ago (trip to the memory service
Eogz
in
Myositis UK
3 months ago
Help needed
Hi everyone, I've been lurking this forum for some time and thought I'd share my story. I am a 35 year old male; around 5 years ago I noticed muscle loss in my quadriceps and neck. I was worried and saw a neurologist. Various tests have been done. MRIs - All came back normal. EMGs - All came back
Hi everyone, I've been lurking this forum for some time and thought I'd share my story. I am a 35 year old male; around 5 years ago I noticed muscle loss in my quadriceps and neck. I was worried and saw a neurologist. Various tests have been done. MRIs - All came back normal. EMGs - All came back
Frost111
in
Myositis UK
5 months ago
immunosuppressed, covid positive - anyone have an experience with antivirals?
hello lovely people of this wonderful forum - seeking any insight or guidance I was diagnosed (11 months ago) with scleroderma & myositis with lung involvement (ILD) on Mycophenolate for treatment. Despite being very cautious and careful, I have just tested positive for Covid, (having avoided it
hello lovely people of this wonderful forum - seeking any insight or guidance I was diagnosed (11 months ago) with scleroderma & myositis with lung involvement (ILD) on Mycophenolate for treatment. Despite being very cautious and careful, I have just tested positive for Covid, (having avoided it
ruablue
in
Myositis UK
8 months ago
Covid positive - anyone with antiviral experience
hello lovely people of this wonderful forum - seeking any insight or guidance I was diagnosed (11 months ago) with scleroderma & myositis with lung involvement (ILD) on Mycophenolate for treatment. Despite being very cautious and careful, I have just tested positive for Covid, (having avoided it
hello lovely people of this wonderful forum - seeking any insight or guidance I was diagnosed (11 months ago) with scleroderma & myositis with lung involvement (ILD) on Mycophenolate for treatment. Despite being very cautious and careful, I have just tested positive for Covid, (having avoided it
ruablue
in
Scleroderma & Raynaud's UK (SRUK)
8 months ago
Time for you all to take another bow.
I have been working with someone for three years who is suffering and may be suffering from B12 deficiency. I do not give advice and certainly not medical advice. I have been sharing my experiences and information that I have. That is hard as the person is smart enough but does not have great reading
I have been working with someone for three years who is suffering and may be suffering from B12 deficiency. I do not give advice and certainly not medical advice. I have been sharing my experiences and information that I have. That is hard as the person is smart enough but does not have great reading
WIZARD6787
in
Pernicious Anaemia Society
10 months ago
Elimination of symptoms through change of diet (such as AIP) - has anyone tried it?
I have been speaking with the sister of a friend recently, who is battling various autoimmune diseases for 16 years now (hashimoto, RA and recently also diagnosed with systemic sclerosis and
polymyositis
), who has told me about this.
I have been speaking with the sister of a friend recently, who is battling various autoimmune diseases for 16 years now (hashimoto, RA and recently also diagnosed with systemic sclerosis and
polymyositis
), who has told me about this.
hunkyd0ry
in
Scleroderma & Raynaud's UK (SRUK)
5 months ago
Intrinsic factor antibody
I'm posting on here as I been advised to. I've just been back to my GP because I had a blood test done the other week for intrinsic factor antibody. I had a result of 3.66 which I thought was positive but my GP just said it's negative ? I had the test done because my vitamins b12 is 211.
I'm posting on here as I been advised to. I've just been back to my GP because I had a blood test done the other week for intrinsic factor antibody. I had a result of 3.66 which I thought was positive but my GP just said it's negative ? I had the test done because my vitamins b12 is 211.
suzybear
in
Pernicious Anaemia Society
10 months ago
Nottingham research team looking for patients & carers
Are you living with lupus, scleroderma, myositis, or vasculitis? Do you live in the Nottingham area? The RECORDER team are looking for patients & carers to help them develop research to improve care and treatment for the future. They’re holding an online meeting on Saturday 18th November, 11am-1:15pm
Are you living with lupus, scleroderma, myositis, or vasculitis? Do you live in the Nottingham area? The RECORDER team are looking for patients & carers to help them develop research to improve care and treatment for the future. They’re holding an online meeting on Saturday 18th November, 11am-1:15pm
Debbie_kinsey
Administrator
in
LUPUS UK
11 months ago
Polymyositis with visible swelling
Can i ask if anyone have
Polymyositis
with visible swelling. She has had a ton on MRIs( showing Inflamation in muscles and around them), blood tests (all negative included auto immune panles), negative EMG. Been on high level of Steroids for 9 months. diagnosis not held due to the swelling.
Can i ask if anyone have
Polymyositis
with visible swelling. She has had a ton on MRIs( showing Inflamation in muscles and around them), blood tests (all negative included auto immune panles), negative EMG. Been on high level of Steroids for 9 months. diagnosis not held due to the swelling.
Angebuck
in
Myositis UK
1 year ago
Metoject
Hi folks 🤗🦋I have successfully transferred from oral to injectable Methotrexate after a few teething problems I think I actually got the hang of it last Sunday! 😹 I have three injections left and am wondering how we reorder it. I was contacted by email after the initial referral from dermy and I was
Hi folks 🤗🦋I have successfully transferred from oral to injectable Methotrexate after a few teething problems I think I actually got the hang of it last Sunday! 😹 I have three injections left and am wondering how we reorder it. I was contacted by email after the initial referral from dermy and I was
Krazykat26
in
LUPUS UK
1 year ago
Heart failure and fatigue
I have longstanding diagnoses of
polymyositis
and UCTD, for which I take steroids and HCQ, so I am very used to chronic fatigue and weakness, but I'm now so burnt out feeling it barely seems worth getting out of bed at all. Any thoughts on avenues to explore (eg medication options?)
I have longstanding diagnoses of
polymyositis
and UCTD, for which I take steroids and HCQ, so I am very used to chronic fatigue and weakness, but I'm now so burnt out feeling it barely seems worth getting out of bed at all. Any thoughts on avenues to explore (eg medication options?)
whisperit
in
British Heart Foundation
1 year ago
Not PMR but now diagnosed with Polymyositis?
He says that the Pred will help with the pain but the test indicate that it's
Polymyositis
. He want's me to continue the slow taper of the Pred but to take 10 mg of Methotrexate once every week. I would love to hear from the Pro and DSL and any other input is more than welcome.
He says that the Pred will help with the pain but the test indicate that it's
Polymyositis
. He want's me to continue the slow taper of the Pred but to take 10 mg of Methotrexate once every week. I would love to hear from the Pro and DSL and any other input is more than welcome.
musclesinflamed
in
PMRGCAuk
1 year ago
Just diagnosed scleroderma/myositis - any help or guidance appreciated
Hello all, First time posting…. I have noticed just how incredibly helpful and supportive this community is so figured I would be vulnerable and ask for help. I have just been diagnosed with overlap autoimmune disease- systemic sclerosis/myositis - symptoms include raynauds, interstitial lung disease
Hello all, First time posting…. I have noticed just how incredibly helpful and supportive this community is so figured I would be vulnerable and ask for help. I have just been diagnosed with overlap autoimmune disease- systemic sclerosis/myositis - symptoms include raynauds, interstitial lung disease
ruablue
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
Diagnosis Help
She suspects
Polymyositis
- I have never heard of it but when she listed the symptoms against mine, I think she may be right. The only problem I have, she is not sure about it herself and whilst she has requested several blood tests, she does not really know what else to suggest.
She suspects
Polymyositis
- I have never heard of it but when she listed the symptoms against mine, I think she may be right. The only problem I have, she is not sure about it herself and whilst she has requested several blood tests, she does not really know what else to suggest.
BuddyDolly
in
Myositis UK
1 year ago
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