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Actemra
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Update on my GCA/Large vessel vasculitis journey: off pred and back to normal (with TCZ)
I am off prednisolone since mid of July (i.e., after 5 months) and continue with weekly
Actemra
injections. I have fortunately no side effects from
Actemra
(neither subjective nor indicated by blood parameters).
I am off prednisolone since mid of July (i.e., after 5 months) and continue with weekly
Actemra
injections. I have fortunately no side effects from
Actemra
(neither subjective nor indicated by blood parameters).
DeepThought2
in
PMRGCAuk
3 years ago
Visit to rheumy today re: vision loss GCA
After 4-6 weeks, he probably will reintroduce
Actemra
and then hope to taper.
After 4-6 weeks, he probably will reintroduce
Actemra
and then hope to taper.
Grammy80
in
PMRGCAuk
3 years ago
Change in medications
I also have been on Enbrel, Humira and recently started
Actemra
. In May I was in the hospital with a Pulmonary Embolism and a DVT on my right knee. I was supposed to have surgery on my right knee but it got postponed until 8/16.
I also have been on Enbrel, Humira and recently started
Actemra
. In May I was in the hospital with a Pulmonary Embolism and a DVT on my right knee. I was supposed to have surgery on my right knee but it got postponed until 8/16.
beasehorn
in
NRAS
3 years ago
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I've been absent too long, beginning to feel human~LONG
I return next month, and we will continue to drop it but slower along with the
Actemra
. He wanted me to see the eye doctor and called him. He did another visual field and exam and was not comfortable saying the vision was stable.
I return next month, and we will continue to drop it but slower along with the
Actemra
. He wanted me to see the eye doctor and called him. He did another visual field and exam and was not comfortable saying the vision was stable.
Grammy80
in
PMRGCAuk
2 years ago
No Actemra
Just went to order monthly supply of tocilizumab/
Actemra
. For the first time ever I was told to call back next week to see if they have any. She said there is a shortage. Anyone else have this happen? I'm in midwest USA.
Just went to order monthly supply of tocilizumab/
Actemra
. For the first time ever I was told to call back next week to see if they have any. She said there is a shortage. Anyone else have this happen? I'm in midwest USA.
Spanky2019
in
PMRGCAuk
3 years ago
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😭😭😭
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
E- mail question.
Has anyone on
actemra
/ tocil. received an E-mail from Roche about an "adverse event" concerning this drug? I opened it and it requires permission from me to allow them to access my health professionals, and for me to answer questions.
Has anyone on
actemra
/ tocil. received an E-mail from Roche about an "adverse event" concerning this drug? I opened it and it requires permission from me to allow them to access my health professionals, and for me to answer questions.
lindyloy
in
PMRGCAuk
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
Recently diagnosed with GCA. What the hell ! Update !
I am taking the
Actemra
and am down to 20 mg of prednisone a day. The headaches had continued and even seemed to get worse. The rheumatologist said my inflammation levels had returned to normal and he was unsure why my headaches have increased.
I am taking the
Actemra
and am down to 20 mg of prednisone a day. The headaches had continued and even seemed to get worse. The rheumatologist said my inflammation levels had returned to normal and he was unsure why my headaches have increased.
GlennStephen
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
An update....vision and flare~!
No
Actemra
now and I think it will be a while. I look like a leper; one area on my leg is weeping, although I don't see any torn tissue~~and one open sore I am working on. I have been diagnosed with lymphodema and have a therapy appointment set up for August 2.
No
Actemra
now and I think it will be a while. I look like a leper; one area on my leg is weeping, although I don't see any torn tissue~~and one open sore I am working on. I have been diagnosed with lymphodema and have a therapy appointment set up for August 2.
Grammy80
in
PMRGCAuk
3 years ago
Off Actemra & Fosomax on Antibiotics!...again🤷🏻♀️🤷🏻♂️
The infection was the trigger, which X'd out the
Actemra
, which meant more steroids which threw the seizure meds off....so we are holding steady. Hopefully, those meds will be corrected tomorrow or at least played with.
The infection was the trigger, which X'd out the
Actemra
, which meant more steroids which threw the seizure meds off....so we are holding steady. Hopefully, those meds will be corrected tomorrow or at least played with.
Grammy80
in
PMRGCAuk
3 years ago
Actemra/tocilizumab
Hi, I’m looking for any of you who have experience with these infusions. I’ 14 months in and can’t seem to taper off Prednisone., also taking Methatroxate. My doc wants me to try these infusions. Does anyone have experience they would like to share?
Hi, I’m looking for any of you who have experience with these infusions. I’ 14 months in and can’t seem to taper off Prednisone., also taking Methatroxate. My doc wants me to try these infusions. Does anyone have experience they would like to share?
Suzorand
in
PMRGCAuk
3 years ago
Has anyone achieved a reduction in fatigue from PMR through the introduction of tocilizumab (Actemra) into their treatment regimen?
So I would be very much interested in hearing from anyone who has gotten relief from PMR fatigue through the use of tocilizumab (
Actemra
) or, perhaps less commonly, Kevzara (sarilumab).
So I would be very much interested in hearing from anyone who has gotten relief from PMR fatigue through the use of tocilizumab (
Actemra
) or, perhaps less commonly, Kevzara (sarilumab).
Ozark
in
PMRGCAuk
3 years ago
Headache, some jaw pain.... Phooey!! # &#@%^
Wondering....the rheumy took me off
Actemra
because of the infection and I have remained at 14mg of Pred each morning. My instincts tell me I should increase it but wondered by how much and for how long? Could the lack of
Actemra
be making these other symptoms worse?
Wondering....the rheumy took me off
Actemra
because of the infection and I have remained at 14mg of Pred each morning. My instincts tell me I should increase it but wondered by how much and for how long? Could the lack of
Actemra
be making these other symptoms worse?
Grammy80
in
PMRGCAuk
3 years ago
Prednisone withdrawal, Pepcid withdrawal?
I am on 5th infusion of
Actemra
, Prednisone down to 6mg. First time down to 6mg. in 3 years. I have to get off prednisone. Stomach bleeding last year, both biopsies from two endoscopies show likely culprit is prednisone. So, I have no choice. Feels like
Actemra
not doing much.
I am on 5th infusion of
Actemra
, Prednisone down to 6mg. First time down to 6mg. in 3 years. I have to get off prednisone. Stomach bleeding last year, both biopsies from two endoscopies show likely culprit is prednisone. So, I have no choice. Feels like
Actemra
not doing much.
phebamom
in
PMRGCAuk
3 years ago
PMR SUCKS!!
I will be on
Actemra
for a while, but I am having no side effects! Just thought I'd share because I was originally told Prednisone was the ONLY "approved" treatment for PMR. I hope my post can help someone else who's suffering with this!
I will be on
Actemra
for a while, but I am having no side effects! Just thought I'd share because I was originally told Prednisone was the ONLY "approved" treatment for PMR. I hope my post can help someone else who's suffering with this!
Shesfromboston
in
PMRGCAuk
3 years ago
Curcumin as an anti inflammatory
I believe
Actemra
works by blocking IL-6. Maybe the stumbling block is the amount of tumeric needed? https://pubmed.ncbi.nlm.nih.gov/27719643/
I believe
Actemra
works by blocking IL-6. Maybe the stumbling block is the amount of tumeric needed? https://pubmed.ncbi.nlm.nih.gov/27719643/
fmkkm
in
PMRGCAuk
3 years ago
Slow Pred taper for PMR and GCA
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 is not pleasant. Could it be the taper or the heart meds or a combination .
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 is not pleasant. Could it be the taper or the heart meds or a combination .
Darcy2000
in
PMRGCAuk
3 years ago
Dealing with GCA flare
currently on 6 mg Pred and weekly
Actemra
injection (Sunday).
currently on 6 mg Pred and weekly
Actemra
injection (Sunday).
Carver63
in
PMRGCAuk
3 years ago
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