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Polymyositis
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Castle Walt Disney designed the castle he built at Disney Land. This castle welcomes you to the outskirts of the diamond village of Toledo.
I started to become symptomatic following a dreadful viral flu that quickly developed into a condition called
Polymyositis
. On Hydrea I maintain platelet counts between 500 and 600. I seldom reach a platelet count in the average range.
I started to become symptomatic following a dreadful viral flu that quickly developed into a condition called
Polymyositis
. On Hydrea I maintain platelet counts between 500 and 600. I seldom reach a platelet count in the average range.
Gordito
in
MPN Voice
3 years ago
Polymyositis
Have any
polymyositis
people on here had lower lumber and hip pain in one side and did any one try acupuncture I am now 5 years with
polymyositis
but this has Ben two months now and excruciating pain anyone less have this happen thankyou n advance
Have any
polymyositis
people on here had lower lumber and hip pain in one side and did any one try acupuncture I am now 5 years with
polymyositis
but this has Ben two months now and excruciating pain anyone less have this happen thankyou n advance
Powerboat
in
Myositis UK
3 years ago
How do I reduce my cpk levels?
I have been diagnosed with myopathy due to
polymyositis
. I have tried high dose of steroids (started on 60mg now on 15mg) and mycophenolate (3000mg) but the cpk levels aren’t consistently staying reduced. My consultant seems to have run out of options.
I have been diagnosed with myopathy due to
polymyositis
. I have tried high dose of steroids (started on 60mg now on 15mg) and mycophenolate (3000mg) but the cpk levels aren’t consistently staying reduced. My consultant seems to have run out of options.
Lobby123
in
Myositis UK
3 years ago
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Prednisone
Hi everyone any diet advise on how to lose weight on prednisone ( I’m on a low dose atm 5 mg ) I’m really struggling I’ve been on steroids a long time and I gained 10 kg , I don’t eat much , unfortunately I can’t exercise at the moment bc my muscle inflammation still high . Thank you for your help ,
Hi everyone any diet advise on how to lose weight on prednisone ( I’m on a low dose atm 5 mg ) I’m really struggling I’ve been on steroids a long time and I gained 10 kg , I don’t eat much , unfortunately I can’t exercise at the moment bc my muscle inflammation still high . Thank you for your help ,
Melaxx
in
LUPUS UK
3 years ago
Newly Diagnosed
Hi Everyone, Im hoping someone can help. Im 34 and I have been living with chronic pain for the past 11 years. It is only now that i have an amazing consultant. He has just called me to advise that they beieve i have myositis but would like to perform other tests which iclude Muscle biopsy,Ct of my chest
Hi Everyone, Im hoping someone can help. Im 34 and I have been living with chronic pain for the past 11 years. It is only now that i have an amazing consultant. He has just called me to advise that they beieve i have myositis but would like to perform other tests which iclude Muscle biopsy,Ct of my chest
jay-1987
in
Myositis UK
3 years ago
patent foramen ovale
I know heart palpatations are connected with B12 deficiency, but I wondered if anyone else in this forum knows if they have/had a patent foramen ovale AKA a hole in your heart between your right and left atria? My patent foramen ovale (PFO) was spotted on an echogram with a bubble study in March after
I know heart palpatations are connected with B12 deficiency, but I wondered if anyone else in this forum knows if they have/had a patent foramen ovale AKA a hole in your heart between your right and left atria? My patent foramen ovale (PFO) was spotted on an echogram with a bubble study in March after
kngswim
in
Pernicious Anaemia Society
3 years ago
Necosising myositis
Hi I have been diagnosed with necosising myositis as I have the A positive blood test with the anti srp antibody. I have muscle aches and pins and needles at night but have had an EMG and NCS and been told I have no myopathy showing at present. I have had a mri and ct but not had the results yet.
Hi I have been diagnosed with necosising myositis as I have the A positive blood test with the anti srp antibody. I have muscle aches and pins and needles at night but have had an EMG and NCS and been told I have no myopathy showing at present. I have had a mri and ct but not had the results yet.
Eddie1969
in
Myositis UK
3 years ago
Can anyone explain?
Intrinsic factor antibody 1.01 u/mL 0 - 1.19 Normal I thought it would say negative or positive, so I’m confused. Thanks
Intrinsic factor antibody 1.01 u/mL 0 - 1.19 Normal I thought it would say negative or positive, so I’m confused. Thanks
Jaiday
in
Pernicious Anaemia Society
3 years ago
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Hidden
in
Myositis UK
3 years ago
Looking for Myositis specialist
Hi, I'm currently diagnosed with fibromyalgia but another doctor found anti ku antibodies. My rheumatologist has been in formed and I've seen her (last time was 4 years ago) she said ku is really rare and a myositis antibody but refuses to run anymore tests and says all my new symptoms are just fibro
Hi, I'm currently diagnosed with fibromyalgia but another doctor found anti ku antibodies. My rheumatologist has been in formed and I've seen her (last time was 4 years ago) she said ku is really rare and a myositis antibody but refuses to run anymore tests and says all my new symptoms are just fibro
Natalie8383
in
Myositis UK
3 years ago
PMR or polymyositis?
Looking at dr Google (I know a terrible idea) my symptoms might fit with
polymyositis
Any thoughts?
Looking at dr Google (I know a terrible idea) my symptoms might fit with
polymyositis
Any thoughts?
Daisyfield
in
PMRGCAuk
3 years ago
IVIG for polymyositis, side effects?
Hello? Has anyone suffered scary IVIG side effects? I've been having IVIG for about 18 months and it was going great, with some side effects but nothing too bad. Recently I had really bad chest pain for 3 days after my treatment, starting the afternoon of my last day of treatment, and also my knees
Hello? Has anyone suffered scary IVIG side effects? I've been having IVIG for about 18 months and it was going great, with some side effects but nothing too bad. Recently I had really bad chest pain for 3 days after my treatment, starting the afternoon of my last day of treatment, and also my knees
ClareR12345
in
Myositis UK
3 years ago
A question about Anti Jo1
My GP said this is a marker for
Polymyositis
and as I'm not experiencing any symptoms I should leave it and get back in touch if I feel muscle weakness. She didn't define muscle weakness however.
My GP said this is a marker for
Polymyositis
and as I'm not experiencing any symptoms I should leave it and get back in touch if I feel muscle weakness. She didn't define muscle weakness however.
PGzx
in
Myositis UK
3 years ago
Extreme fatigue after 1st dose AstraZeneca vaccine?
I have
Polymyositis
Jo-1. I would like to know if anyone has had severe fatigue after their 1st dose of the AstraZeneca vaccine. The fatigue I have has contiued to get worse as the weeks have gone on. Any replies would be helpful. Regards Matt
I have
Polymyositis
Jo-1. I would like to know if anyone has had severe fatigue after their 1st dose of the AstraZeneca vaccine. The fatigue I have has contiued to get worse as the weeks have gone on. Any replies would be helpful. Regards Matt
Fleetwood49
in
Myositis UK
3 years ago
Kitchen Witch Remedies or Pharmaceutical? 420 VS Painkillers?
Hi Everyone!! Firstly, Happy Fri-yay!! I hope everyone is keeping as safe and well as humanly possible. Today I've been reading up on self medicating while I await my next appointment with my specialist. I'm curious to know if anyone has any experience with either CBD oil or Medical Marijuana? During
Hi Everyone!! Firstly, Happy Fri-yay!! I hope everyone is keeping as safe and well as humanly possible. Today I've been reading up on self medicating while I await my next appointment with my specialist. I'm curious to know if anyone has any experience with either CBD oil or Medical Marijuana? During
Vicrum88
in
Scleroderma & Raynaud's UK (SRUK)
4 years ago
What does "High" mean really?
If I have antibodies flagged as "high" on a blood test which are associated with Sjogren's (Anti-SS-B),
Polymyositis
(Anti-Jo-1) and SLE (Ribosomal P), does that mean I have all three autoimmune diseases? I was originally confirmed with Lupus.
If I have antibodies flagged as "high" on a blood test which are associated with Sjogren's (Anti-SS-B),
Polymyositis
(Anti-Jo-1) and SLE (Ribosomal P), does that mean I have all three autoimmune diseases? I was originally confirmed with Lupus.
MotorCityGirl
in
LUPUS UK
4 years ago
Immunity
Had SLE since 2010 suffered with lots of chest and urine infections because of the medication so 2 years ago I stopped taking all, my consultant wasn’t happy but fed up with being in pain all the time , anyway now my immune system is now working overtime my ESR is currently 70 which is pretty high I
Had SLE since 2010 suffered with lots of chest and urine infections because of the medication so 2 years ago I stopped taking all, my consultant wasn’t happy but fed up with being in pain all the time , anyway now my immune system is now working overtime my ESR is currently 70 which is pretty high I
Bessy01
in
LUPUS UK
4 years ago
Do they routinely test back muscles during an MRI & EMG?
I think maybe if he was looking for
Polymyositis
they would look at back muscles? If anyone knows if they test the back muscles routinely I'd love to hear from you. Many thanks!
I think maybe if he was looking for
Polymyositis
they would look at back muscles? If anyone knows if they test the back muscles routinely I'd love to hear from you. Many thanks!
Chancery
in
Myositis UK
4 years ago
Virtual thesis seminar on 16 September at 6PM BST (1pm EDT) with Kyla Britson.
PLEASE NOTE: This event will start at 6PM UK time, not 5PM as previously advertised. Myositis UK members are invited to attend a virtual thesis seminar on 16 September with young researcher Kyla Britson. Based in the US, Kyla was one of the three young researchers awarded a speed funding grant by Myositis
PLEASE NOTE: This event will start at 6PM UK time, not 5PM as previously advertised. Myositis UK members are invited to attend a virtual thesis seminar on 16 September with young researcher Kyla Britson. Based in the US, Kyla was one of the three young researchers awarded a speed funding grant by Myositis
Jo-Goode
Administrator
in
Myositis UK
4 years ago
Newly Diagnosed
Diagnosed 6 days ago with Dermatomyositis following muscle biopsy. Have been referred to Rheumatology by Dermatologist as looking likely for Systemic Lupus Erythematosus too. I am due to commence a new teaching post (I teach Reception Class in Primary School) next Monday. The dreadfully itchy rash that
Diagnosed 6 days ago with Dermatomyositis following muscle biopsy. Have been referred to Rheumatology by Dermatologist as looking likely for Systemic Lupus Erythematosus too. I am due to commence a new teaching post (I teach Reception Class in Primary School) next Monday. The dreadfully itchy rash that
PinkLadyNo1
in
Myositis UK
4 years ago
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