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Steroid sparing agents
Could anyone tell me more about Steroid sparing agents please? I have read about Methotrexate and Tocilizumab (?) but not really sure when or if I would go on them ( I was only diagnosed with GCA at the end of January) - also, side effects etc? I see my Rheumatologist next Monday and want to armed with
Could anyone tell me more about Steroid sparing agents please? I have read about Methotrexate and Tocilizumab (?) but not really sure when or if I would go on them ( I was only diagnosed with GCA at the end of January) - also, side effects etc? I see my Rheumatologist next Monday and want to armed with
Janeval
in
PMRGCAuk
1 year ago
Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica - a very useful reference to show your doctor
https://ard.bmj.com/content/early/2023/02/23/ard-2022-223429 This is Open Access so everyone can read it. It is something I think we should all have a read of, some will be beyond most of us and some is just plain boring but there are points in it everyone will understand and can bring to the notice
https://ard.bmj.com/content/early/2023/02/23/ard-2022-223429 This is Open Access so everyone can read it. It is something I think we should all have a read of, some will be beyond most of us and some is just plain boring but there are points in it everyone will understand and can bring to the notice
PMRpro
Ambassador
in
PMRGCAuk
1 year ago
Do natural supplements work to reduce high cholesterol?
While strictly not a PMR issue I know there are a few whose cholesterol has risen markedly since being diagnosed. I am one of them. I have always had high-ish cholesterol but my last fasting blood test showed everything else perfectly normal but my cholesterol was up. I haven't seen the results
While strictly not a PMR issue I know there are a few whose cholesterol has risen markedly since being diagnosed. I am one of them. I have always had high-ish cholesterol but my last fasting blood test showed everything else perfectly normal but my cholesterol was up. I haven't seen the results
Pr0jection
in
PMRGCAuk
1 year ago
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A giant cell arteritis suffer
A giant cell arteritis suffer on methotrexate and prednisolone. Has anyone been on this combination as well? How long did it take you to get off the steroids as i'm still on 4mg as struggling to get off them as symptoms keep returning once I reduce down any further.
A giant cell arteritis suffer on methotrexate and prednisolone. Has anyone been on this combination as well? How long did it take you to get off the steroids as i'm still on 4mg as struggling to get off them as symptoms keep returning once I reduce down any further.
BM16
in
PMRGCAuk
1 year ago
Has anyone got any experience in coming off Tocilizumab to start on Methotrexate?
I have been on Tocilizumab since August 2021 but the funding for this is being withdrawn. I have been off steroids now for over 2 months so without the Toci I have nothing to ward off any flare-up of GCA. Due to being relatively asymptomatic before diagnosis and losing sight in one eye very quickly rheumatology
I have been on Tocilizumab since August 2021 but the funding for this is being withdrawn. I have been off steroids now for over 2 months so without the Toci I have nothing to ward off any flare-up of GCA. Due to being relatively asymptomatic before diagnosis and losing sight in one eye very quickly rheumatology
sequeluk
in
PMRGCAuk
2 years ago
2022 American College of Rheumatology Classification Criteria for Giant Cell Arteritis
This came to my attention in the Lancet: ‘Better tools required for biopsy negative giant cell Arteritis’ https://click.notification.elsevier.com/CL0/https:%2F%2Fwww.thelancet.com%2Fjournals%2Flanrhe%2Farticle%2FPIIS2665-9913(22)00252-1%2Ffulltext%3Fdgcid=raven_jbs_aip_email/1/01000184993a7770-46052eb1
This came to my attention in the Lancet: ‘Better tools required for biopsy negative giant cell Arteritis’ https://click.notification.elsevier.com/CL0/https:%2F%2Fwww.thelancet.com%2Fjournals%2Flanrhe%2Farticle%2FPIIS2665-9913(22)00252-1%2Ffulltext%3Fdgcid=raven_jbs_aip_email/1/01000184993a7770-46052eb1
Exflex
in
PMRGCAuk
2 years ago
Tocilizumab
Do other people find the injector pens are painful, intense stinging. Is there anything that can help this. Thank you.
Do other people find the injector pens are painful, intense stinging. Is there anything that can help this. Thank you.
Hidden
in
PMRGCAuk
2 years ago
Tocilizumab
I have GCA and PMR. I am on 40mg Pred. The inflammation markers have normalised, but I still have headaches. Doctors want to reduce Pred because of the side effects I am experiencing. I started Methotrexate injections, but they were paused for the last two weeks to see if they were causing the headaches
I have GCA and PMR. I am on 40mg Pred. The inflammation markers have normalised, but I still have headaches. Doctors want to reduce Pred because of the side effects I am experiencing. I started Methotrexate injections, but they were paused for the last two weeks to see if they were causing the headaches
PQXZT
in
PMRGCAuk
2 years ago
Pred affects glucose...what about thyroid?
i have been struggling to reduce my pred dose. Since I went from 22.5 to 20 every day has been different. The first day was ok. No real change. Then my pain was high....I was shakey, very tired/exhausted,efeated for the rest. Today my pain is a smidge better..but I am so tired. I have that out
i have been struggling to reduce my pred dose. Since I went from 22.5 to 20 every day has been different. The first day was ok. No real change. Then my pain was high....I was shakey, very tired/exhausted,efeated for the rest. Today my pain is a smidge better..but I am so tired. I have that out
Wallysma
in
PMRGCAuk
2 years ago
Here we go again!
GCA/PMR for over 5 years. Pred down to 6mg . Been taken off Tocilizumab but can’t tolerate other steroid sparers. Had appointment with Rheumie and blood test. CRP high so PET scan arranged. She has put me back up to 40mg as inflammation showing in all usual places. It feels like back to square 1. Has
GCA/PMR for over 5 years. Pred down to 6mg . Been taken off Tocilizumab but can’t tolerate other steroid sparers. Had appointment with Rheumie and blood test. CRP high so PET scan arranged. She has put me back up to 40mg as inflammation showing in all usual places. It feels like back to square 1. Has
broomfield28
in
PMRGCAuk
2 years ago
Off Tocilizumab after six months
I don't know where to start. My history will show I have GCA and PMR all diagnosed in 2019 after several misdiagnoses, and started treatment with Pred 15mg and then up to 25mg which helped the PMR and the GCA somewhat. I was then put on 20mg of Mexthetrate which did not agree with me. I change my
I don't know where to start. My history will show I have GCA and PMR all diagnosed in 2019 after several misdiagnoses, and started treatment with Pred 15mg and then up to 25mg which helped the PMR and the GCA somewhat. I was then put on 20mg of Mexthetrate which did not agree with me. I change my
redhouts
in
PMRGCAuk
2 years ago
tocilizumab after relapse
Hi having felt unwell again and 8 weeks of steroids, reducing to zero I have had a positive ct pet scan again. Now back on steroids and a plan to commence lufludomine while consultant tries to get tocilizumab again. Has anyone had any luck with getting further scripts after relapse. Grateful for any
Hi having felt unwell again and 8 weeks of steroids, reducing to zero I have had a positive ct pet scan again. Now back on steroids and a plan to commence lufludomine while consultant tries to get tocilizumab again. Has anyone had any luck with getting further scripts after relapse. Grateful for any
Devoid
in
PMRGCAuk
2 years ago
Request - Real time experience Reco for the best haematologists in Portugal please
Hello all, Will move to Portugal in the near future. Looking for excellent haematologist recommendations in Portugal. I am hoping to get reco from people who have personally had positive experience with the said haematologists. Also the names of hospitals or institutes focusing on Hematology
Hello all, Will move to Portugal in the near future. Looking for excellent haematologist recommendations in Portugal. I am hoping to get reco from people who have personally had positive experience with the said haematologists. Also the names of hospitals or institutes focusing on Hematology
Iwillwin123
in
PMRGCAuk
2 years ago
will these hot flashes ever end ?
Hi all I am grateful that after 19 months since i developed pmr symptoms I am feeling a lot better and have gradually reduced over the months from 30 mg (think gp went a bit over the top with that dose because i was on 25 and when i reported some blurred vision and headache she upped it . I saw optician
Hi all I am grateful that after 19 months since i developed pmr symptoms I am feeling a lot better and have gradually reduced over the months from 30 mg (think gp went a bit over the top with that dose because i was on 25 and when i reported some blurred vision and headache she upped it . I saw optician
Mofred
in
PMRGCAuk
2 years ago
The Polymyalgia Rheumatica Diet: The Ultimate Nutritional Guide To Reversing And Managing Polymyalgia Rheumatica And Giant Cell Arteritis
Has anyone read this book by Hunwick Debby? Did they find it useful? Generally does your diet help improve your condition?
Has anyone read this book by Hunwick Debby? Did they find it useful? Generally does your diet help improve your condition?
Yorksman
in
PMRGCAuk
2 years ago
Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition. By Kate Gilbert
Have you all read the above book by Kate Gilbert? It’s a must if you are a sufferer of PMR or GCA. So much sound practical information and we all know that knowledge is power. Good luck on your journey fellow sufferers. The light is at the end of the tunnel. XxX
Have you all read the above book by Kate Gilbert? It’s a must if you are a sufferer of PMR or GCA. So much sound practical information and we all know that knowledge is power. Good luck on your journey fellow sufferers. The light is at the end of the tunnel. XxX
SouthStrand
in
PMRGCAuk
2 years ago
Upset stomach
Said it’s a gastro
enteritis
bug . Have 0 energy and taking everything to get out of bed (which has need a dinner time ) am waking up through the night feeling sick . Have been taking paracetamol for my temp . Am on urso, steroids and about 3 weeks ago started on azathriopine.
Said it’s a gastro
enteritis
bug . Have 0 energy and taking everything to get out of bed (which has need a dinner time ) am waking up through the night feeling sick . Have been taking paracetamol for my temp . Am on urso, steroids and about 3 weeks ago started on azathriopine.
She-66
in
LIVErNORTH
2 years ago
Anal leakage - Does anyone have this problem and how are you handling it
Proctitis
Enteritis
, Radiation Proctitis, Anal Leakage October 2015 PSA 14.0 diagnosed Prostate Cancer. January 2016 - 37 Rounds of Radiation + 2 Hormone Injections.
Proctitis
Enteritis
, Radiation Proctitis, Anal Leakage October 2015 PSA 14.0 diagnosed Prostate Cancer. January 2016 - 37 Rounds of Radiation + 2 Hormone Injections.
lakeheadguy
in
Pelvic Radiation Disease Association
2 years ago
What happens when you end tocilizumab
I have GCA and PMR , plus a few other conditions.. I am on Prednisolone, Azothioprine and tocilizumab . I am getting towards the end of the tocilizumab injections as the aim is to get to 7 mg Pred and I am about to reduce to 9 mgs. The tocilizumab has done wonders with unreadably low CRP and ESR of 3
I have GCA and PMR , plus a few other conditions.. I am on Prednisolone, Azothioprine and tocilizumab . I am getting towards the end of the tocilizumab injections as the aim is to get to 7 mg Pred and I am about to reduce to 9 mgs. The tocilizumab has done wonders with unreadably low CRP and ESR of 3
Caroline2079
in
PMRGCAuk
2 years ago
Disassociated feeling
I'm currently on Tocilizumab for GCA under the direction of a specialist physician. I was on 20mg Pred when I started the Tocilizumab which I have injected every 2 weeks. I'm on my third week right now. I was instructed to reduce Pred 5mg every 2 weeks and reduce again 5mg 3 weeks , which is
I'm currently on Tocilizumab for GCA under the direction of a specialist physician. I was on 20mg Pred when I started the Tocilizumab which I have injected every 2 weeks. I'm on my third week right now. I was instructed to reduce Pred 5mg every 2 weeks and reduce again 5mg 3 weeks , which is
redhouts
in
PMRGCAuk
2 years ago
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