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An update....vision and flare~!
Well, it seems I'm in the middle of a GCA flare and not feeling very good or very comfortable. I'm taking 20mg of prednisone per day but still having some temple pain, jaw soreness, and back pain. Actually, a lot of soreness I'd forgotten about experiencing initially back in 2019. I'm now splitting
Well, it seems I'm in the middle of a GCA flare and not feeling very good or very comfortable. I'm taking 20mg of prednisone per day but still having some temple pain, jaw soreness, and back pain. Actually, a lot of soreness I'd forgotten about experiencing initially back in 2019. I'm now splitting
Grammy80
in
PMRGCAuk
3 years ago
Adult stills disease and covid virus.
Adult stills disease and covid virus. Please i need help is it dangerous for someone with stills disease to get covid-19 even while taking actemra I'm so worried for my sister she stayed with my other sister who got infected . Is it serious please i need to know😭😭😭
Adult stills disease and covid virus. Please i need help is it dangerous for someone with stills disease to get covid-19 even while taking actemra I'm so worried for my sister she stayed with my other sister who got infected . Is it serious please i need to know😭😭😭
Hope7777
in
NRAS
3 years ago
Actemra side effects
Can't find any evidence of this anywhere else, but every time I get an infusion, I just have to crawl in bed. I usually have my infusion on Fridays, so the weekend is pretty much shot. Usually feeling better by Monday morning, just in time for work. :^( Wondering if anyone else has experienced something
Can't find any evidence of this anywhere else, but every time I get an infusion, I just have to crawl in bed. I usually have my infusion on Fridays, so the weekend is pretty much shot. Usually feeling better by Monday morning, just in time for work. :^( Wondering if anyone else has experienced something
winfong
in
PMRGCAuk
3 years ago
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Nocturnal hypertension
New to site. 66 years of age, farm wife, 5,9 tall, weight 154#. Over the last two years I have lost 30#. I watch my sodium intake, and try to watch sugar. i have an auto-immune illness called giant cell arteritis/polymyalgia rheumatica. I have been on prednisone for 10 years. I have tapered
New to site. 66 years of age, farm wife, 5,9 tall, weight 154#. Over the last two years I have lost 30#. I watch my sodium intake, and try to watch sugar. i have an auto-immune illness called giant cell arteritis/polymyalgia rheumatica. I have been on prednisone for 10 years. I have tapered
phebamom
in
High Blood Pressure Support
3 years ago
Anyone with these neurological issues and health complications?
I apologize in advance for the lengthy post!!! 8 months or so ago I started developing significant spasms in my arms and legs; sometimes so strong that it causes severe jerking. 6 months ago I started losing muscle mass - now over 40%. Three months ago a neuroquant MRI was done and they found a number
I apologize in advance for the lengthy post!!! 8 months or so ago I started developing significant spasms in my arms and legs; sometimes so strong that it causes severe jerking. 6 months ago I started losing muscle mass - now over 40%. Three months ago a neuroquant MRI was done and they found a number
TiredNerd
in
NRAS
3 years ago
Off Actemra & Fosomax on Antibiotics!...again🤷🏻♀️🤷🏻♂️
Do you know those round cages that they spin for Bingo? With all the balls tumbling around? Well, that is what my head feels like, and my body must be saying, 'What the heck is going on?" It seems the infection that invaded my body at the beginning of the month has been having fun by upsetting the balance
Do you know those round cages that they spin for Bingo? With all the balls tumbling around? Well, that is what my head feels like, and my body must be saying, 'What the heck is going on?" It seems the infection that invaded my body at the beginning of the month has been having fun by upsetting the balance
Grammy80
in
PMRGCAuk
3 years ago
Actemra approved for Covid?
Just heard about this: Genentech’s Actemra Receives FDA Emergency Use Authorization for the Treatment of COVID-19 In Hospitalized Adults and Children https://www.businesswire.com/news/home/20210624006034/en/Genentech%E2%80%99s-Actemra-Receives-FDA-Emergency-Use-Authorization-for-the-Treatment-of-COVID
Just heard about this: Genentech’s Actemra Receives FDA Emergency Use Authorization for the Treatment of COVID-19 In Hospitalized Adults and Children https://www.businesswire.com/news/home/20210624006034/en/Genentech%E2%80%99s-Actemra-Receives-FDA-Emergency-Use-Authorization-for-the-Treatment-of-COVID
winfong
in
PMRGCAuk
3 years ago
Headache, some jaw pain.... Phooey!! # &#@%^
I had written I'd been in the hospital with a bad infection and it seems to be taking me a long time to bounce back. PLUS, for the last 4-5 days I've been experiencing some jaw pain and jaw sensitivity. I've had a headache 'forever ...I know I had it June 3 and I've been taking Tylenol every day. Wondering
I had written I'd been in the hospital with a bad infection and it seems to be taking me a long time to bounce back. PLUS, for the last 4-5 days I've been experiencing some jaw pain and jaw sensitivity. I've had a headache 'forever ...I know I had it June 3 and I've been taking Tylenol every day. Wondering
Grammy80
in
PMRGCAuk
3 years ago
PMR SUCKS!!
August 2020 at 51, I was diagnosed with PMR (a condition I had never heard of before) I had all the classic symptoms. I was practically bedridden! Thankfully, I was only a couple of months before my Rheumatologist put me on 30 mgs of Prednisone for about 3 months, after that tapering down by 5mgs every
August 2020 at 51, I was diagnosed with PMR (a condition I had never heard of before) I had all the classic symptoms. I was practically bedridden! Thankfully, I was only a couple of months before my Rheumatologist put me on 30 mgs of Prednisone for about 3 months, after that tapering down by 5mgs every
Shesfromboston
in
PMRGCAuk
3 years ago
Dealing with GCA flare
i am now 6 days into a self diagnosed flare up of GCA. currently on 6 mg Pred and weekly Actemra injection (Sunday). Increased pred to 7 to help headach on Saturday and today woke up to stronger pain and soreness in temple and increased dosage to 10. plus iboprofin 600 to kill the pain and soreness
i am now 6 days into a self diagnosed flare up of GCA. currently on 6 mg Pred and weekly Actemra injection (Sunday). Increased pred to 7 to help headach on Saturday and today woke up to stronger pain and soreness in temple and increased dosage to 10. plus iboprofin 600 to kill the pain and soreness
Carver63
in
PMRGCAuk
3 years ago
Sharing so we can all be vigilant....staph and strep infection
As most know, I have GCA. About six weeks ago, I had a slight infection on my face, and my rheumy had me stop Actemra. I resumed on Friday the 28th of May. On June 3, I noticed a small pink spot on my lower right leg. About 2 PM that day, it went from intermittent pain to 'off the charts.' I'm the
As most know, I have GCA. About six weeks ago, I had a slight infection on my face, and my rheumy had me stop Actemra. I resumed on Friday the 28th of May. On June 3, I noticed a small pink spot on my lower right leg. About 2 PM that day, it went from intermittent pain to 'off the charts.' I'm the
Grammy80
in
PMRGCAuk
3 years ago
Prednisone withdrawal, Pepcid withdrawal?
I am sick as a dog. Weak as a kitten, can barely function. nausea, loss of appetite. Weight loss. Muscles feel like they are being pulled off the bone. I have PMr/GCA, Pmr 20 years, GCA 10. I am on 5th infusion of Actemra, Prednisone down to 6mg. First time down to 6mg. in 3 years. I have
I am sick as a dog. Weak as a kitten, can barely function. nausea, loss of appetite. Weight loss. Muscles feel like they are being pulled off the bone. I have PMr/GCA, Pmr 20 years, GCA 10. I am on 5th infusion of Actemra, Prednisone down to 6mg. First time down to 6mg. in 3 years. I have
phebamom
in
PMRGCAuk
3 years ago
Questioning benefit of boniva
Posted many times about gca dx that started over 2 yrs ago. Just a month into prednisone treatment a dexa showed osteoporosis- worst was right femoral neck -2.9. Just had 2 and dexa allnumbers worse. R femoral neck -3.3. Overall percentage change -8.7%. Very disappointing results for taking this poison
Posted many times about gca dx that started over 2 yrs ago. Just a month into prednisone treatment a dexa showed osteoporosis- worst was right femoral neck -2.9. Just had 2 and dexa allnumbers worse. R femoral neck -3.3. Overall percentage change -8.7%. Very disappointing results for taking this poison
Spanky2019
in
PMRGCAuk
3 years ago
Curcumin as an anti inflammatory
So many ask about tumeric’s ability to decrease inflammation, I thought this article would be of interest. It appears curcumin may actually be able to down regulate IL-6. I believe Actemra works by blocking IL-6. Maybe the stumbling block is the amount of tumeric needed? https://pubmed.ncbi.nlm.nih.gov
So many ask about tumeric’s ability to decrease inflammation, I thought this article would be of interest. It appears curcumin may actually be able to down regulate IL-6. I believe Actemra works by blocking IL-6. Maybe the stumbling block is the amount of tumeric needed? https://pubmed.ncbi.nlm.nih.gov
fmkkm
in
PMRGCAuk
3 years ago
Continuation of Tocilizumab treatment in UK needed- Help or advice needed please.
(
RoActemra
) for just a few LVV-GCA patients for whom Prednisolone is a no- no. I cannot tolerate Prednisolone and have been very lucky to have been on Tocilizumab for almost 2 years ( the pandemic has been good to me in this respect!).
(
RoActemra
) for just a few LVV-GCA patients for whom Prednisolone is a no- no. I cannot tolerate Prednisolone and have been very lucky to have been on Tocilizumab for almost 2 years ( the pandemic has been good to me in this respect!).
Suzita76
in
PMRGCAuk
3 years ago
Advice regarding use of herbal licorice to help with taper
I recently had a consult with a Naturopath for general well-being health recommendations. I also spoke of my prednisone use and my difficulties with withdrawal symptoms during the taper. She suggested using a licorice herbal supplement (Mediherb Adrenco) to ease the symptoms. I questioned her about this
I recently had a consult with a Naturopath for general well-being health recommendations. I also spoke of my prednisone use and my difficulties with withdrawal symptoms during the taper. She suggested using a licorice herbal supplement (Mediherb Adrenco) to ease the symptoms. I questioned her about this
GratefulBailey
in
PMRGCAuk
3 years ago
Slow Pred taper for PMR and GCA
Recently on top of everything else I was put on an array of heart meds for Cardiomyopathy. Plavix, Bisopropolol and temisartan for BP. I am also on Actemra . I am doing a slow taper of Pred 1 mg every 6 weeks and currently at 8 mgs and I have 2 months left on Actemra. I am always light headed and it
Recently on top of everything else I was put on an array of heart meds for Cardiomyopathy. Plavix, Bisopropolol and temisartan for BP. I am also on Actemra . I am doing a slow taper of Pred 1 mg every 6 weeks and currently at 8 mgs and I have 2 months left on Actemra. I am always light headed and it
Darcy2000
in
PMRGCAuk
3 years ago
Recently diagnosed with GCA. What the hell !
57 yo male diagnosed with biopsy for GCA May 15. Was on 120 pred for a few days in hospital. Now on 60 a day. Starting the Actemra injection 1x per week at rheum appointment In 2 days. My pain seems to be building back up quite a bit the last few days. I have a general feeling of weakness and a lot
57 yo male diagnosed with biopsy for GCA May 15. Was on 120 pred for a few days in hospital. Now on 60 a day. Starting the Actemra injection 1x per week at rheum appointment In 2 days. My pain seems to be building back up quite a bit the last few days. I have a general feeling of weakness and a lot
GlennStephen
in
PMRGCAuk
3 years ago
Adrenal insufficiency?
Hello all. I've got GCA / PMR / LVV, diagnosed last year. I've been on prednisone since last September, first at 60 mg, then at 20 for a good while, then at 10 for a while as well, before trying to reduce under that (0.5 every 2 weeks), and currently at 6.5. Also taking actemra. After my last infusion
Hello all. I've got GCA / PMR / LVV, diagnosed last year. I've been on prednisone since last September, first at 60 mg, then at 20 for a good while, then at 10 for a while as well, before trying to reduce under that (0.5 every 2 weeks), and currently at 6.5. Also taking actemra. After my last infusion
winfong
in
PMRGCAuk
3 years ago
Back to sports?
At present and on prednisolone and
RoActemra
, I am happy that I don't have fever and constitutional symptoms any more but I definitely don't feel like long distance or uphill cycling - just walking 6-8 km a day is what I can do at present.
At present and on prednisolone and
RoActemra
, I am happy that I don't have fever and constitutional symptoms any more but I definitely don't feel like long distance or uphill cycling - just walking 6-8 km a day is what I can do at present.
DeepThought2
in
PMRGCAuk
3 years ago
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