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Actemra
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ESR as a predictor of disease Activity while on Actemra
Started
Actemra
in March 2021 and have been on monthly infusions since. Subsequent MRAs show improvement. On November 1, 2021 I stopped Prednisone.
Started
Actemra
in March 2021 and have been on monthly infusions since. Subsequent MRAs show improvement. On November 1, 2021 I stopped Prednisone.
Jumpe
in
PMRGCAuk
2 years ago
Actemra injection skin reaction
A couple of weeks ago I asked if anyone had the skin reaction to weekly
Actemra
injections because I was getting a large itchy red rash right across my thigh that lasted about 4 days. Its a very common reaction apparently.
A couple of weeks ago I asked if anyone had the skin reaction to weekly
Actemra
injections because I was getting a large itchy red rash right across my thigh that lasted about 4 days. Its a very common reaction apparently.
HappyDiamonds
in
PMRGCAuk
2 years ago
When does Pred decrease let adrenals kick in?
Actemra
, too, once per week. So far, the move from 7mg to 6mg has been the hardest. Lots of fatigue over three days. It's a 14 percent decrease which isn't a small amount. I am sure it varies, but anyone know when my adrenals will start functioning?
Actemra
, too, once per week. So far, the move from 7mg to 6mg has been the hardest. Lots of fatigue over three days. It's a 14 percent decrease which isn't a small amount. I am sure it varies, but anyone know when my adrenals will start functioning?
GCAfiveyearrelapse
in
PMRGCAuk
2 years ago
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Actemra and chest discomfort
Tomorrow will be my third injection of
Actemra
as I attempt to taper from 40 mg daily down to 30 mg daily. I have more headaches than usual but nothing I can’t live with. But for the last two weeks I’ve had what feels like a big gas bubble in my chest and through to my back (right side).
Tomorrow will be my third injection of
Actemra
as I attempt to taper from 40 mg daily down to 30 mg daily. I have more headaches than usual but nothing I can’t live with. But for the last two weeks I’ve had what feels like a big gas bubble in my chest and through to my back (right side).
91066Jackson
in
PMRGCAuk
2 years ago
Dental work do I miss injection
I am having a root filling and was wondering if I am to stop my
Actemra
injections prior to this. I’m not sure if it counts as invasive surgery. I’ve tried calling Rheumy but just answering machine . Thanks for your help. Enjoy the lovely bank holiday.
I am having a root filling and was wondering if I am to stop my
Actemra
injections prior to this. I’m not sure if it counts as invasive surgery. I’ve tried calling Rheumy but just answering machine . Thanks for your help. Enjoy the lovely bank holiday.
Typsey
in
NRAS
2 years ago
2nd booster, fourth shot, all is well
I am currently on
Actemra
, 9 mg prednisone, and 20mg methotrexate. I stopped the methotrexate prior week and again this week, in hoping to improve efficacy of booster. Always grateful for post and information found here. 🙏
I am currently on
Actemra
, 9 mg prednisone, and 20mg methotrexate. I stopped the methotrexate prior week and again this week, in hoping to improve efficacy of booster. Always grateful for post and information found here. 🙏
Elephants2019
in
PMRGCAuk
2 years ago
My GCA Story
I started tapering off prednisone, a six month taper, along with beginning weekly
Actemra
injections. Fortunately, I qualified for getting
Actemra
for free, as it is ridiculously expensive. I got off prednisone in January and was doing great on
Actemra
only.
I started tapering off prednisone, a six month taper, along with beginning weekly
Actemra
injections. Fortunately, I qualified for getting
Actemra
for free, as it is ridiculously expensive. I got off prednisone in January and was doing great on
Actemra
only.
Preacherball
in
PMRGCAuk
2 years ago
Curveball: Actemra and Fosamax!
I got a second opinion on my PMR situation and the new doc immediately wanted to put me on
Actemra
and Fosamax. I didn't agree to do it yet, so I could query folks here about it and think on it.
I got a second opinion on my PMR situation and the new doc immediately wanted to put me on
Actemra
and Fosamax. I didn't agree to do it yet, so I could query folks here about it and think on it.
Greytree
in
PMRGCAuk
2 years ago
What a difference a consultant makes!!
The implication was I was only given a further 6 months of
Actemra
TCZ when I thought it was a year, so have emailed the company to check that. If it's a year, I will definitely ignore them. Arghhhhh
The implication was I was only given a further 6 months of
Actemra
TCZ when I thought it was a year, so have emailed the company to check that. If it's a year, I will definitely ignore them. Arghhhhh
Sophiestree
in
PMRGCAuk
2 years ago
Long distance travel with Actemra?
Apologies if this seems lightweight, in view of the serious stresses others on this forum are suffering, but does anyone have recent info on travelling with several months supply of
ACTEMRA
(TCZ)?
Apologies if this seems lightweight, in view of the serious stresses others on this forum are suffering, but does anyone have recent info on travelling with several months supply of
ACTEMRA
(TCZ)?
Happyexplorer
in
PMRGCAuk
2 years ago
Pred and Actemra
Thank you to those of you who answered my questions last week about restarting Prednisone because all my symptoms had returned whilst on
Actemra
injections alone.
Thank you to those of you who answered my questions last week about restarting Prednisone because all my symptoms had returned whilst on
Actemra
injections alone.
Mahler2
in
PMRGCAuk
2 years ago
Checking in: Rheumy diagnosis GCA
I'm at 40, down from 80. ( prednisone) She suggested
Actemra
(tocilizumab) but only if after I read about it, I felt comfortable with if. Am a little nervous about another new drug and self administrating injection...yikes! What's your experience?
I'm at 40, down from 80. ( prednisone) She suggested
Actemra
(tocilizumab) but only if after I read about it, I felt comfortable with if. Am a little nervous about another new drug and self administrating injection...yikes! What's your experience?
Cobalt2sister
in
PMRGCAuk
2 years ago
Numb toes
On 5mg. prednisone and monthly infusion of
Actemra
. Age 66.
On 5mg. prednisone and monthly infusion of
Actemra
. Age 66.
phebamom
in
PMRGCAuk
2 years ago
Has anyone had Covid whilst on Actemra and 20mg Prednisone?
I have GCA and am at the stage of reducing from 60 to 20mg Pred and having weekly
Actemra
injections. Just wanted to ask if anyone has had Covid whilst taking the same meds ? And if so how did you cope and do you have any suggestions to help ease things?
I have GCA and am at the stage of reducing from 60 to 20mg Pred and having weekly
Actemra
injections. Just wanted to ask if anyone has had Covid whilst taking the same meds ? And if so how did you cope and do you have any suggestions to help ease things?
MarksPoint
in
PMRGCAuk
2 years ago
Headache in temples
My question is, could this be a symptom of GCA even though I have been treated with prednisone and
Actemra
for 3 1/2 years. back in 2018, they did do a temporal biopsy which was negative, but that was after the fact that I was diagnosed with GCA after a PET scan.
My question is, could this be a symptom of GCA even though I have been treated with prednisone and
Actemra
for 3 1/2 years. back in 2018, they did do a temporal biopsy which was negative, but that was after the fact that I was diagnosed with GCA after a PET scan.
luv2read
in
PMRGCAuk
2 years ago
Ear pressure and blockage in gca
My wife is on gca treatment from last 10 months ,she took 60 mg tapering prednisone with
Actemra
weekly in starting 4 months , now , only on prednisone 9 mg , got two flare at 10 mg in between, and went back to 40 mg Her , main symptom are, pressure and blockage on both side of ear ( but no problem
My wife is on gca treatment from last 10 months ,she took 60 mg tapering prednisone with
Actemra
weekly in starting 4 months , now , only on prednisone 9 mg , got two flare at 10 mg in between, and went back to 40 mg Her , main symptom are, pressure and blockage on both side of ear ( but no problem
Rajuguide
in
PMRGCAuk
2 years ago
Still have headache on 5 mg prednisone
I wrote over the weekend that I was on 4 mg pred and
Actemra
infusions. When I went on 4 mg I had a constant headache for 2 weeks. I was fine on 5. I called doctor and was told to go back up to 5 and stay til my appt in 2 weeks.
I wrote over the weekend that I was on 4 mg pred and
Actemra
infusions. When I went on 4 mg I had a constant headache for 2 weeks. I was fine on 5. I called doctor and was told to go back up to 5 and stay til my appt in 2 weeks.
nallufl24
in
PMRGCAuk
2 years ago
Alternative to prednisone
I am about to be tapered off prednisone and put on the biologic medication
Actemra
(Tocilizumab) as my rheumatologist says the long term effects of prednisone are very hard on the body. The
Actemra
will be self injected weekly.
I am about to be tapered off prednisone and put on the biologic medication
Actemra
(Tocilizumab) as my rheumatologist says the long term effects of prednisone are very hard on the body. The
Actemra
will be self injected weekly.
Strelitzia
in
PMRGCAuk
2 years ago
Headache for 2 weeks
I’m down to 4 mg prednisone and
Actemra
monthly infusions for past 4 months. My rheumatologist thinks I should be totally off of pred now but I followed his instructions til I got to 5. I went to 4 almost two weeks ago and have had a headache every day. It’s starting to worry me.
I’m down to 4 mg prednisone and
Actemra
monthly infusions for past 4 months. My rheumatologist thinks I should be totally off of pred now but I followed his instructions til I got to 5. I went to 4 almost two weeks ago and have had a headache every day. It’s starting to worry me.
nallufl24
in
PMRGCAuk
2 years ago
Advice please
For the second time my rheumatologist has weaned me off prednisone using
Actemra
. The first time I got to 1mg but stopped it because I had experienced constant cystitis for the 6 months I had been injecting it. That was in May 2021.
For the second time my rheumatologist has weaned me off prednisone using
Actemra
. The first time I got to 1mg but stopped it because I had experienced constant cystitis for the 6 months I had been injecting it. That was in May 2021.
Mahler2
in
PMRGCAuk
2 years ago
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