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Not always Polymyalgia!
I am lucky with my rheumatologist. At a recent appointment I mentioned that turning my head from side to side was painful. She set me up for an immediate neck x-ray, saying that if the stiffness was due to another cause it would give me confidence to continue reducing the steroids - I’m currently on
I am lucky with my rheumatologist. At a recent appointment I mentioned that turning my head from side to side was painful. She set me up for an immediate neck x-ray, saying that if the stiffness was due to another cause it would give me confidence to continue reducing the steroids - I’m currently on
Thelmarina
in
PMRGCAuk
8 months ago
immunotherapy damaging kidneys
hi My mother has been having successful treatment for stage 3 lung cancer, but the immunotherapy has negatively affected her kidneys, so she is having steroids and they have said they cannot continue to offer the immunotherapy. We are awaiting a scan appointment & they may then discuss radiotherapy,
hi My mother has been having successful treatment for stage 3 lung cancer, but the immunotherapy has negatively affected her kidneys, so she is having steroids and they have said they cannot continue to offer the immunotherapy. We are awaiting a scan appointment & they may then discuss radiotherapy,
SharonTan
in
The Roy Castle Lung Cancer Foundation
8 months ago
Sweet Syndrome With Vasculitis
Sweet Syndrome With Vasculitis: Time To Adopt a New Criteria? https://www.cureus.com/articles/170637#!/ Existing diagnostic criteria excludes vasculitis (inflammation of the blood vessels which is normally absent on biopsy), despite more and more cases of Sweet's syndrome with vasculitis being reported
Sweet Syndrome With Vasculitis: Time To Adopt a New Criteria? https://www.cureus.com/articles/170637#!/ Existing diagnostic criteria excludes vasculitis (inflammation of the blood vessels which is normally absent on biopsy), despite more and more cases of Sweet's syndrome with vasculitis being reported
Shell567
Sweet's Syndrome UK
in
Sweet's Syndrome UK
8 months ago
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CGM blood sugar monitors now available witout having to do the ZOE pogramme
I recently wrote a post about what I'd learned about how steroids and what and how you eat affects blood sugars from the Zoe programme (link to post below). https://healthunlocked.com/pmrgcauk/posts/149873534/what-i-learned-about-steroids-and-blood-sugar-levels-from-wearing-a-continuous-glucose-monitor-cgm-on-the-zoe-program
I recently wrote a post about what I'd learned about how steroids and what and how you eat affects blood sugars from the Zoe programme (link to post below). https://healthunlocked.com/pmrgcauk/posts/149873534/what-i-learned-about-steroids-and-blood-sugar-levels-from-wearing-a-continuous-glucose-monitor-cgm-on-the-zoe-program
tangocharlie
in
PMRGCAuk
8 months ago
Newbie
I started having neck stiffness which then went to shoulders and then stiffness all over. Im 61, but used to be very flexible. I went to docs who did blood tests and they came back all normal, apart from infection markers which were higher than normal. I suggested either RA or PMR. Doctor has not specified
I started having neck stiffness which then went to shoulders and then stiffness all over. Im 61, but used to be very flexible. I went to docs who did blood tests and they came back all normal, apart from infection markers which were higher than normal. I suggested either RA or PMR. Doctor has not specified
pastamaid
in
PMRGCAuk
8 months ago
Omeprazole ...side effects...
Update of last post...all now settled thank you.Regarding omeprazole...spoke to GP this morning for steroid script, and asked if I still needed to take omeprazole on such a low dose of pred. He asked if I had ever had indigestion or stomach ulcers in the past...no. He was willing to try me on half my
Update of last post...all now settled thank you.Regarding omeprazole...spoke to GP this morning for steroid script, and asked if I still needed to take omeprazole on such a low dose of pred. He asked if I had ever had indigestion or stomach ulcers in the past...no. He was willing to try me on half my
Temoral
in
PMRGCAuk
8 months ago
adalimubab
I was diagnosed with RA. Twenty years ago. Managed fine after settling on 15mg of methotrexate until about two years ago. Constant flares since then and I am currently on 25mg of methotrexate and due to finish my first 6 months on Adalimubab coming Thursday. (40mg every 2 weeks ). I have also been on
I was diagnosed with RA. Twenty years ago. Managed fine after settling on 15mg of methotrexate until about two years ago. Constant flares since then and I am currently on 25mg of methotrexate and due to finish my first 6 months on Adalimubab coming Thursday. (40mg every 2 weeks ). I have also been on
Barrcroom
in
NRAS
8 months ago
Where should I go from here? Reduced by doc from 6 Pred to 2 and now suffering
Having been told by 3 doctors to try to get off Prednisolone so I could be assessed by specialist at hospital (as no doctor felt able to confirm I really had PMR although on steroids for 2 years!) I reduced from 6 to 2 Pred in 8 weeks. Result: much itching when reducing down from 4 to 3 and now, at 2
Having been told by 3 doctors to try to get off Prednisolone so I could be assessed by specialist at hospital (as no doctor felt able to confirm I really had PMR although on steroids for 2 years!) I reduced from 6 to 2 Pred in 8 weeks. Result: much itching when reducing down from 4 to 3 and now, at 2
CupcakeGalore
in
PMRGCAuk
8 months ago
would be grateful for some help please
Have had pmr for 3 and half years and recently stopped taking steroids for the condition. Have been exhausted for two years and short walks leaves me breathless, nauseous and shaky legs., bit like car sickness. Bloods done by Doctor showed up 3 months ago, T4 16.9 and serum TSH level 7.7. Recent blood
Have had pmr for 3 and half years and recently stopped taking steroids for the condition. Have been exhausted for two years and short walks leaves me breathless, nauseous and shaky legs., bit like car sickness. Bloods done by Doctor showed up 3 months ago, T4 16.9 and serum TSH level 7.7. Recent blood
Dorsetgirl17
in
Thyroid UK
8 months ago
% of patients getting off steroids in 2 years?
I’m due a medication review so can someone please remind me of the percentages for 2, 3 and 4 years for getting off Pred? Young GPs in training are told remission after 2 years. I’m towards the end of year 4, and thought 1/2mg was good at this stage (I developed bilateral upper arm pain at wk5 of a
I’m due a medication review so can someone please remind me of the percentages for 2, 3 and 4 years for getting off Pred? Young GPs in training are told remission after 2 years. I’m towards the end of year 4, and thought 1/2mg was good at this stage (I developed bilateral upper arm pain at wk5 of a
Exflex
in
PMRGCAuk
8 months ago
medication
hi Been on sulpasazine and methotrexate since June. I have increased to full dose 25mg methotrexate 2 weeks ago so they have gradually upped my dose . I still not really finding any relief . Whilst not all joints are painful everyday , my hands are becoming difficult to use and have hand weakness .
hi Been on sulpasazine and methotrexate since June. I have increased to full dose 25mg methotrexate 2 weeks ago so they have gradually upped my dose . I still not really finding any relief . Whilst not all joints are painful everyday , my hands are becoming difficult to use and have hand weakness .
Teddyboy17
in
NRAS
9 months ago
Steroids
Hi.i am just wondering when you come off steroids,do you still have to see drs at the hospital,because I haven't see one 8 months.i am am doing well.also does G.C.A.COME BACK.
Hi.i am just wondering when you come off steroids,do you still have to see drs at the hospital,because I haven't see one 8 months.i am am doing well.also does G.C.A.COME BACK.
Flosy
in
PMRGCAuk
9 months ago
There’s no point to this post
Hi everyone, hope you’re all as well as can be. I’m approximately 3 1/2 years into this PMR. Sometimes it gets me down. I’ve been trying to start Humira for Ankylosing Spondylitis again, but the delivery company have been an absolute NIGHTMARE! It’s been so long since I last took it that I’m wondering
Hi everyone, hope you’re all as well as can be. I’m approximately 3 1/2 years into this PMR. Sometimes it gets me down. I’ve been trying to start Humira for Ankylosing Spondylitis again, but the delivery company have been an absolute NIGHTMARE! It’s been so long since I last took it that I’m wondering
Bramble2000
in
PMRGCAuk
9 months ago
Help with "sick day rules"
Hello, It's been a while. I am struggling and need some dose guidance please. My normal dose is 10mg per day. I delivered Mark to hospital on Sunday for a planned Total Knee Replacement which took place on Monday morning. He's doing very well, no pain (typical of him lol) and he was discharged yesterday
Hello, It's been a while. I am struggling and need some dose guidance please. My normal dose is 10mg per day. I delivered Mark to hospital on Sunday for a planned Total Knee Replacement which took place on Monday morning. He's doing very well, no pain (typical of him lol) and he was discharged yesterday
IdasMum
in
PMRGCAuk
9 months ago
Normal cortisol levels
Hello, I'm 52, lost my job and my way as a human. I was diagnosed with PMR in Sept 2022. I have been prescribed higher mg of prednisolone however 10mg/7.5mg alternate days for the last year until a PET scan in Sept this year. I was advised to drop to 4mg immediately for the scan. The scan showed no
Hello, I'm 52, lost my job and my way as a human. I was diagnosed with PMR in Sept 2022. I have been prescribed higher mg of prednisolone however 10mg/7.5mg alternate days for the last year until a PET scan in Sept this year. I was advised to drop to 4mg immediately for the scan. The scan showed no
Bargin_ninja
in
PMRGCAuk
9 months ago
when to call your neurologist
I recently started seeing a new neurologist this year. Since then I’ve had a flare up of eye problems. I have been having severe double vision and eye pain. I contacted my neurologist a few months ago and they (the Pa) ordered a 3 day round of steroids which didn’t help at all. I called them back and
I recently started seeing a new neurologist this year. Since then I’ve had a flare up of eye problems. I have been having severe double vision and eye pain. I contacted my neurologist a few months ago and they (the Pa) ordered a 3 day round of steroids which didn’t help at all. I called them back and
Littledeer
in
My MSAA Community
9 months ago
Slow healing.
Have been on Prednisolone for 5years , have currently tried dropping to 7mg. I had a bad leg wound on August 15th .It is taking a long time to heal . My wound clinic girl 's say it is my age and because I am on steriods .I will try to keep dropping steadily Will it be better to have painkillers and
Have been on Prednisolone for 5years , have currently tried dropping to 7mg. I had a bad leg wound on August 15th .It is taking a long time to heal . My wound clinic girl 's say it is my age and because I am on steriods .I will try to keep dropping steadily Will it be better to have painkillers and
Barbaracole
in
PMRGCAuk
9 months ago
Busy day today - O + show + interviews
Full day but all good. - Ocrevus infusion went well as expected. This time around, they gave me the steroids 5-10 min before Benadryl and I did not feel any effect from the Benadryl. - then tonight my husband took me to see a Jerry Seinfeld show. So much laughing. He's so good. This was great. I
Full day but all good. - Ocrevus infusion went well as expected. This time around, they gave me the steroids 5-10 min before Benadryl and I did not feel any effect from the Benadryl. - then tonight my husband took me to see a Jerry Seinfeld show. So much laughing. He's so good. This was great. I
anaishunter
in
My MSAA Community
9 months ago
lowering prednisolone
I have had pmg since last September and have very gradually lowered my dose from 15mg to 1mg. which I have been on for the last six weeks. I decided to try to go without steroids for the last two days and apart from the usual shoulder ach when getting up, so far so good, I am now worried about getting
I have had pmg since last September and have very gradually lowered my dose from 15mg to 1mg. which I have been on for the last six weeks. I decided to try to go without steroids for the last two days and apart from the usual shoulder ach when getting up, so far so good, I am now worried about getting
Guilluame
in
PMRGCAuk
9 months ago
prednisone and antibiotics
Has anyone had a problem with antibiotics wiping out prednisone. Was down to 2.5-lowest in 8 years. Took antibiotics (Bactrim) and all old PMR symptoms came back. Hurt all over. Read Bactrim and Cipro are quinolones and do not work well with Steroids. Neither Dr or pharmacist knew this. Not sure how
Has anyone had a problem with antibiotics wiping out prednisone. Was down to 2.5-lowest in 8 years. Took antibiotics (Bactrim) and all old PMR symptoms came back. Hurt all over. Read Bactrim and Cipro are quinolones and do not work well with Steroids. Neither Dr or pharmacist knew this. Not sure how
Cycles4fun
in
PMRGCAuk
9 months ago
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