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Experiences with
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
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
20 days 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
3 months ago
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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)
3 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
6 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
6 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
7 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
8 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)
12 days 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
9 months 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
8 months 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
11 months 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
Myositis caused by reaction to antibiotic
I've been diagnosed with Myositis very recently in the last month, affecting my hanstring muscles in both my thighs. My myositis was caused by a reaction to the antibiotic ciprofloxacin. I initially had very higH CPK levels and had to receive fluids in hospital. I wondered if anyone else had experienced
I've been diagnosed with Myositis very recently in the last month, affecting my hanstring muscles in both my thighs. My myositis was caused by a reaction to the antibiotic ciprofloxacin. I initially had very higH CPK levels and had to receive fluids in hospital. I wondered if anyone else had experienced
newbie101
in
Myositis UK
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
Hello! Advice on who to see
But have similar symptoms to
Polymyositis
. I have pain and muscle weakness in my legs (mainly thighs), my upper arms and my neck.
But have similar symptoms to
Polymyositis
. I have pain and muscle weakness in my legs (mainly thighs), my upper arms and my neck.
EnterpriseBingo
in
Myositis UK
1 year ago
Rheumatological conditions and PARP treatment
She has
polymyositis
and has been recommended a PARP inhibitor after her chemotherapy treatment for ovarian cancer. She is wondering about the experience of managing a rheumatological condition while on PARP treatment and wondered if anyone else has any experiences to share?
She has
polymyositis
and has been recommended a PARP inhibitor after her chemotherapy treatment for ovarian cancer. She is wondering about the experience of managing a rheumatological condition while on PARP treatment and wondered if anyone else has any experiences to share?
OvacomeSupport
My Ovacome Team
in
My Ovacome
1 year ago
Lupus and Monkeypox
Hi all, I thought I'd ask as this is very topical at the moment, especially for the immunosuppressed. Does anyone have any comments on this?
Hi all, I thought I'd ask as this is very topical at the moment, especially for the immunosuppressed. Does anyone have any comments on this?
HantsMan
in
LUPUS UK
1 year ago
Staying Active?
Hello! I was recently diagnosed with myositis. I don’t know what kind yet, but I’m thinking it’s derma. Regardless, before this diagnosis, I was a very active person. Outdoor exercise is a huge piece of my identity and happiness. Id like to hear if others are able to ever get back to being physically
Hello! I was recently diagnosed with myositis. I don’t know what kind yet, but I’m thinking it’s derma. Regardless, before this diagnosis, I was a very active person. Outdoor exercise is a huge piece of my identity and happiness. Id like to hear if others are able to ever get back to being physically
MamaHiker
in
Myositis UK
1 year ago
How to get a referral to an endo for central hypothyroidism?
medical literature and NICE guidelines to explain the significance of her test results, and pointing out that the next step should be an urgent referral to an endocrinologist, however instead the GP ordered a cascade of other blood tests for conditions like RA, lupus, scleroderma, Sjögren's syndrome and
polymyositis
medical literature and NICE guidelines to explain the significance of her test results, and pointing out that the next step should be an urgent referral to an endocrinologist, however instead the GP ordered a cascade of other blood tests for conditions like RA, lupus, scleroderma, Sjögren's syndrome and
polymyositis
Zazbag
in
Thyroid UK
1 year ago
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