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Polymyositis with visible swelling
My friend is still struggling to get a diagnosis. 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
My friend is still struggling to get a diagnosis. 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
Angebuck
in
Myositis UK
1 year ago
GCA now TIA, irregular heartbeat
Early August I was diagnosed with a ‘left front ischaemic stroke secondary to new atrial fibrillation…heartbeat irregularly irregular’. It was quite scary as I lost language and ability to order numbers for a short time. Hot foot to A & E, cue ECG, bloods, MRI. Cholesterol 8.0. Prescribed Edoxaban,
Early August I was diagnosed with a ‘left front ischaemic stroke secondary to new atrial fibrillation…heartbeat irregularly irregular’. It was quite scary as I lost language and ability to order numbers for a short time. Hot foot to A & E, cue ECG, bloods, MRI. Cholesterol 8.0. Prescribed Edoxaban,
Bluey-1
in
PMRGCAuk
1 year ago
Constant skin rashes
As some may know I have been fighting constant skin rash since November, antibiotics help clear it up along with steroid cream but not quite get rid of it . Then a few weeks later I'm back on the same treatment. Attended AE last night due to it spreading on my body and down my arms skin inflammation
As some may know I have been fighting constant skin rash since November, antibiotics help clear it up along with steroid cream but not quite get rid of it . Then a few weeks later I'm back on the same treatment. Attended AE last night due to it spreading on my body and down my arms skin inflammation
cartwheels
in
CLL Support
1 year ago
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Periods delayed after steroid injections
Hi,Has anyone had the experience of their periods being delayed after having steroid injections. If so, for how long? I'm a week late. They haven't been this late in a long while. I have an IVF consultation next month so I'm worried they won't return Thanks
Hi,Has anyone had the experience of their periods being delayed after having steroid injections. If so, for how long? I'm a week late. They haven't been this late in a long while. I have an IVF consultation next month so I'm worried they won't return Thanks
ABFr23
in
NRAS
8 months ago
Possible allergy to b12
Good morning! I developed a rash a week ago that covered my body and made my lips swell. The doctor suggested stopping b12 and cofactors. He felt it was an allergy to meds and wanted to try these before my heart meds as they would have to be eliminated at the hospital Anyway! I have had the course of
Good morning! I developed a rash a week ago that covered my body and made my lips swell. The doctor suggested stopping b12 and cofactors. He felt it was an allergy to meds and wanted to try these before my heart meds as they would have to be eliminated at the hospital Anyway! I have had the course of
brenanddave
in
Pernicious Anaemia Society
1 year ago
Pain management Team
I have been waiting for 4 years to see someone in the pain management clinic at our local hospital. What a complete joke. When are the doctors and so called specialists going to help a patient who is in considerable pain and saying to him I want to cut my foot off. He was a complete waste of time, why
I have been waiting for 4 years to see someone in the pain management clinic at our local hospital. What a complete joke. When are the doctors and so called specialists going to help a patient who is in considerable pain and saying to him I want to cut my foot off. He was a complete waste of time, why
Imagine1
in
Pain Concern
8 months ago
Starting therapy 5 yrs post CAR-T with another immunotherapy trial, now epcoritamab
Making my exercise "rounds" at the hospital
It was a nice long run and far exceeded the average duration of response to CAR-T in CLL, but as we all have grown to accept, essentially all therapies in CLL are palliative. If you live long enough, most but not all of us will eventually relapse.
Making my exercise "rounds" at the hospital
It was a nice long run and far exceeded the average duration of response to CAR-T in CLL, but as we all have grown to accept, essentially all therapies in CLL are palliative. If you live long enough, most but not all of us will eventually relapse.
bkoffman
CLL CURE Hero
in
CLL Support
1 year ago
Any advice apprecaited
My husband was dx with a grade 4 glioblastoma wild type Feb 2023. Since then the full round of chemo and radiation and 3 five day cycles of TMZ. we started to taper down the steroids to 1 mg but he was sleeping 21 hours a day. His repeat scan showed increased swelling with a midline shift. His steroids
My husband was dx with a grade 4 glioblastoma wild type Feb 2023. Since then the full round of chemo and radiation and 3 five day cycles of TMZ. we started to taper down the steroids to 1 mg but he was sleeping 21 hours a day. His repeat scan showed increased swelling with a midline shift. His steroids
Buffalolove
in
Glioblastoma Support
1 year ago
Prednisolone and Surgery
Hi, I have been taking steroids now for at least 6 years. I am currently taking 20mg daily. I have read several articles on this site regarding the need for extra doses when undergoing surgery. Is this correct and if so what are the likely consequences of extra not given.Your expert knowledge would be
Hi, I have been taking steroids now for at least 6 years. I am currently taking 20mg daily. I have read several articles on this site regarding the need for extra doses when undergoing surgery. Is this correct and if so what are the likely consequences of extra not given.Your expert knowledge would be
maxxgarry
in
PMRGCAuk
1 year ago
I think my mum might have PMR how can we get it diagnosed?
Hi, my mum started getting pain in her upper arm which then went upto her shoulder, she could barely raise her arm and it was extremely painful, she now has this in both upper arms and shoulders and has done since early/mid October. She has completely lost her appetite, has lost over a stone and is
Hi, my mum started getting pain in her upper arm which then went upto her shoulder, she could barely raise her arm and it was extremely painful, she now has this in both upper arms and shoulders and has done since early/mid October. She has completely lost her appetite, has lost over a stone and is
Nmbchelsea
in
PMRGCAuk
8 months ago
Methotrexate
I was wondering what others experience has been using Methotrexate. I’m currently on 20mg which I self administer by injection. I’ve been using it for about 8 months and still suffer from moderately painful headaches that start within a few hours of the injection but subside after 24hrs. It’s been reasonably
I was wondering what others experience has been using Methotrexate. I’m currently on 20mg which I self administer by injection. I’ve been using it for about 8 months and still suffer from moderately painful headaches that start within a few hours of the injection but subside after 24hrs. It’s been reasonably
Medical61
in
NRAS
1 year ago
GCA relapse?
I finally tapered off steroids April 2023 after 18 months. Over the last few weeks my headaches have returned daily- bilateral temples. My head just feels woozy and ‘full’ . Hard to describe. Scalp ‘burns’ but is not sensitive to touch. So fatigued I just can’t do much of anything. Went to rheum and
I finally tapered off steroids April 2023 after 18 months. Over the last few weeks my headaches have returned daily- bilateral temples. My head just feels woozy and ‘full’ . Hard to describe. Scalp ‘burns’ but is not sensitive to touch. So fatigued I just can’t do much of anything. Went to rheum and
Jsaoughs
in
PMRGCAuk
1 year ago
Stress
Hi everyone Not posted for a while but my life recently has been interesting to say the least. I've had a house move back to my home town alone I might add been involved in a car crash and receiving physio for back shoulder injuries my niece died in a separate car accident I've had police involved when
Hi everyone Not posted for a while but my life recently has been interesting to say the least. I've had a house move back to my home town alone I might add been involved in a car crash and receiving physio for back shoulder injuries my niece died in a separate car accident I've had police involved when
soulboy118
in
COPD Friends
1 year ago
Staying on 5mg indefinitely.....
Forgive me if I've brought this up before but after my rheumatologist advised me that there are little or no side effects when on 7.5mg prednisolone providing one takes the right precautions - Calcium, Vit D supplements and healthy eating habits e.g. low or no sugar, low or no carbs, etc. I thought I
Forgive me if I've brought this up before but after my rheumatologist advised me that there are little or no side effects when on 7.5mg prednisolone providing one takes the right precautions - Calcium, Vit D supplements and healthy eating habits e.g. low or no sugar, low or no carbs, etc. I thought I
Pr0jection
in
PMRGCAuk
1 year ago
GCA symptoms normal CRP
I have arrived at a place I never thought I would - 1mg Pred reduced from 60mg in early 2020 when I was diagnosed with GCA. It’s taken me a long time to reduce due to recurrent symptoms when reducing. It’s been a slow process but I’ve been helped my members of this community and my consultant. I have
I have arrived at a place I never thought I would - 1mg Pred reduced from 60mg in early 2020 when I was diagnosed with GCA. It’s taken me a long time to reduce due to recurrent symptoms when reducing. It’s been a slow process but I’ve been helped my members of this community and my consultant. I have
Phoenix51
in
PMRGCAuk
1 year ago
problems after ablation
my husband had his ablation on 12th June and has had problems every since. He didn’t have any episodes in the year leading up to it but was advised to have it as he can’t tolerate the medication. He has been getting episodes every day then 6 weeks post ablation developed a chronic cough and breathing
my husband had his ablation on 12th June and has had problems every since. He didn’t have any episodes in the year leading up to it but was advised to have it as he can’t tolerate the medication. He has been getting episodes every day then 6 weeks post ablation developed a chronic cough and breathing
Oak321
in
AF Association
1 year ago
Shingles - does anyone have any advice?
morning all It’s been quite a ride…my ear started bothering me a bit on Monday . Just a small uptick in tinnitus which I tried to ignore. By Tuesday I was a bit worried because I have had total hearing loss in the past due to auto immune attack which was only (partially) restored due to mega doses of
morning all It’s been quite a ride…my ear started bothering me a bit on Monday . Just a small uptick in tinnitus which I tried to ignore. By Tuesday I was a bit worried because I have had total hearing loss in the past due to auto immune attack which was only (partially) restored due to mega doses of
Bon1
in
NRAS
1 year ago
Can pred cause dementia-like symptoms?
Hi everyone, Something is very wrong with me. I feel like I have some kind of dementia. I work from home (mostly phone, emails and internet, nothing physical), but I can't seem to manage it anymore. My career is falling apart. Tasks that have always been easy for me now make me want to scream, and
Hi everyone, Something is very wrong with me. I feel like I have some kind of dementia. I work from home (mostly phone, emails and internet, nothing physical), but I can't seem to manage it anymore. My career is falling apart. Tasks that have always been easy for me now make me want to scream, and
sferios
in
PMRGCAuk
1 year ago
Tattoo /steroids
My rheumatologist mentioned I might need steroid injections into my feet/toes specifically (guided by ultrasound). I have a large foot tattoo (well, I have fairly small feet but tattoo is across a fairly large proportion). She said they'd inject just beside it. I'm quite anxious about damaging my tattoo
My rheumatologist mentioned I might need steroid injections into my feet/toes specifically (guided by ultrasound). I have a large foot tattoo (well, I have fairly small feet but tattoo is across a fairly large proportion). She said they'd inject just beside it. I'm quite anxious about damaging my tattoo
Flowersaregreat
in
NRAS
11 months ago
no pred. before an ultrasound? And increasing dose of pred.
Next week I am having an ultrasound test on my hands and wrists which have become very painful after a flare in May. Should I not take any pred. on the day of the test? Also, I have recently increased my pred. dose from 3 to 5 mg because my hands are so painful and useless. I have been on 5 for 4 days
Next week I am having an ultrasound test on my hands and wrists which have become very painful after a flare in May. Should I not take any pred. on the day of the test? Also, I have recently increased my pred. dose from 3 to 5 mg because my hands are so painful and useless. I have been on 5 for 4 days
humlies
in
PMRGCAuk
1 year ago
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