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actemra Pmr/Gca
I had my first infusion of
Actemra
two weeks ago. About a half hour after leaving the center my lip became numb. I took a Benadryl just in case it was a reaction. It did go away. I have recently noticed I am not really hungry and have lost some weight.
I had my first infusion of
Actemra
two weeks ago. About a half hour after leaving the center my lip became numb. I took a Benadryl just in case it was a reaction. It did go away. I have recently noticed I am not really hungry and have lost some weight.
Plains
in
PMRGCAuk
2 years ago
Lasix is a new friend
Hi. This is for those who have had issues with swollen ankles and calves.... My ankles have been huge since I first started feeling bad. Not much relieved the problem. In the morning they might be a smidge smaller but it was not a lot and did not last long. Enter PMR diagnosis and lots of prednisone
Hi. This is for those who have had issues with swollen ankles and calves.... My ankles have been huge since I first started feeling bad. Not much relieved the problem. In the morning they might be a smidge smaller but it was not a lot and did not last long. Enter PMR diagnosis and lots of prednisone
Wallysma
in
PMRGCAuk
1 year ago
TCZ and Psoriasis
Is it possible or coincidence, that the
Actemra
/TCZ injections are causing the psoriasis to make its reappearance? I have reported to the company that over the 2yrs of using TCZ, have noticed a few skin blotches. Just curious if anyone has noticed similar?
Is it possible or coincidence, that the
Actemra
/TCZ injections are causing the psoriasis to make its reappearance? I have reported to the company that over the 2yrs of using TCZ, have noticed a few skin blotches. Just curious if anyone has noticed similar?
jarn
in
PMRGCAuk
2 years ago
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Update on shooting pain to breast - esophagitis
Still continuing with 2 weekly
Actemra
. Lef. can cause GI disturbances but its normally diarrhea. If I get this again when I resume the Lef. they want me to try something else š§ probably mycophenolate and Im not keen to do it.
Still continuing with 2 weekly
Actemra
. Lef. can cause GI disturbances but its normally diarrhea. If I get this again when I resume the Lef. they want me to try something else š§ probably mycophenolate and Im not keen to do it.
HappyDiamonds
in
PMRGCAuk
2 years ago
Actemra?
I have been started on
Actemra
but donāt know if I need it. I question if I have GCA. The Dr who should be retired made a snap judgement. Even if I had GCA, can you wean from
Actemra
? I have had infusions (2), one in July. One in August and another is scheduled for Friday.
I have been started on
Actemra
but donāt know if I need it. I question if I have GCA. The Dr who should be retired made a snap judgement. Even if I had GCA, can you wean from
Actemra
? I have had infusions (2), one in July. One in August and another is scheduled for Friday.
Greytree
in
PMRGCAuk
2 years ago
Bronchial Pneumonia, while tapering on prednisone and Actemra.
has anyone else had bronchial pneumonia while on steroids and
Actemra
? I really worry about these secondary infections while on
Actemra
. Once again Iām just frustrated with this whole GCA trip and wondering if it will ever end.
has anyone else had bronchial pneumonia while on steroids and
Actemra
? I really worry about these secondary infections while on
Actemra
. Once again Iām just frustrated with this whole GCA trip and wondering if it will ever end.
pmac22
in
PMRGCAuk
2 years ago
Flare?
I am on weekly
Actemra
Since having the covid infection 10 weeks ago I've had on and off pain in my left temple area as well as sore spots on my scalp. I have constitutional symptoms including fatigue, chills, and blurred vision.
I am on weekly
Actemra
Since having the covid infection 10 weeks ago I've had on and off pain in my left temple area as well as sore spots on my scalp. I have constitutional symptoms including fatigue, chills, and blurred vision.
knoone
in
PMRGCAuk
2 years ago
ACTEMRA dose with prednisone
Will I have to take more prednisone since I wonāt have access to the
ACTEMRA
? Since I did not start it yet should I push the date out to day of the week it would work for my trip? Thank you for any experiences or thoughts.
Will I have to take more prednisone since I wonāt have access to the
ACTEMRA
? Since I did not start it yet should I push the date out to day of the week it would work for my trip? Thank you for any experiences or thoughts.
Plains
in
PMRGCAuk
2 years ago
CRP and ESR
I know it is a well known fact on this forum that ESR and CRP are unreliable while on
Actemra
. But most rheumatologists don't seem to know that.
I know it is a well known fact on this forum that ESR and CRP are unreliable while on
Actemra
. But most rheumatologists don't seem to know that.
Joseph14612
in
PMRGCAuk
1 year ago
Looking for short video on PMR
I am due to go on
Actemra
...just not sure when and now I have this skin thing that I thought was improving with oral and topical antibiotics that might delay that. The healing might have stalled. I need to find a derm which I am working on.
I am due to go on
Actemra
...just not sure when and now I have this skin thing that I thought was improving with oral and topical antibiotics that might delay that. The healing might have stalled. I need to find a derm which I am working on.
Wallysma
in
PMRGCAuk
1 year ago
LDN (Low Dose Naltrexone) for PMR?
My rheumatologist put me on monthly
Actemra
infusions. After five infusions it became evident that I was getting no appreciable benefit.
My rheumatologist put me on monthly
Actemra
infusions. After five infusions it became evident that I was getting no appreciable benefit.
mppk
in
PMRGCAuk
2 years ago
update on my GCA-LVV journey - back to weekly Actemra injections
I will now continue to inject
Actemra
weekly and but try to increase intervals again in summer. Not too much worried about continuing
Actemra
on a weekly basis as I have no significant side effects.
I will now continue to inject
Actemra
weekly and but try to increase intervals again in summer. Not too much worried about continuing
Actemra
on a weekly basis as I have no significant side effects.
DeepThought2
in
PMRGCAuk
1 year ago
Seven year saga.
He denied
Actemra
as the test for GCA was negative.Ā So thatās it. Thank you so much for reading, it helps to just write it down. I am trying to be positive about the DMARD. Previously he had refused because my liver enzymes are elevated from fatty liver, but they havenāt changed in 10 years.
He denied
Actemra
as the test for GCA was negative.Ā So thatās it. Thank you so much for reading, it helps to just write it down. I am trying to be positive about the DMARD. Previously he had refused because my liver enzymes are elevated from fatty liver, but they havenāt changed in 10 years.
Nightingales
in
PMRGCAuk
2 years ago
Don't blame it all on the prednisone! Check things out.š©š»āāļø or šØš»āāļø
I was diagnosed with GCA in 2019 and finally got down to single digits this summer, I'm taking 5 mg per day plus
Actemra
. I'm only dropping .5 mg every six weeks. It has been fairly smooth except the fatigue, I did nothing and was [i]so, so tired!
I was diagnosed with GCA in 2019 and finally got down to single digits this summer, I'm taking 5 mg per day plus
Actemra
. I'm only dropping .5 mg every six weeks. It has been fairly smooth except the fatigue, I did nothing and was [i]so, so tired!
Grammy80
in
PMRGCAuk
2 years ago
Does anyone have experience of having to stop Actemra after being on it for several months and the effects of that?
I suppose it is a matter of wait and see but I just wondered if anyone noticed adverse effects of stopping
Actemra
right away. Thanks.
I suppose it is a matter of wait and see but I just wondered if anyone noticed adverse effects of stopping
Actemra
right away. Thanks.
Kt1943
in
PMRGCAuk
2 years ago
I just want to quit GCA!
Last week I came down with my grandsonās croup the rheumatologist nurse said to not do my weekly injection of
Actemra
. Six days later I still have croup, primary care Dr. did chest X-ray which was fine. Just a virus.
Last week I came down with my grandsonās croup the rheumatologist nurse said to not do my weekly injection of
Actemra
. Six days later I still have croup, primary care Dr. did chest X-ray which was fine. Just a virus.
pmac22
in
PMRGCAuk
2 years ago
Stopped Tocilizumab, CRP rising, is it a GCA flare?
I'm hoping to find someone else who had GCA, has stopped taking steroids and stopped Tocilizumab (
Actemra
), to know how their journey went from then on without treatment. I was diagnosed with GCA over 3 years ago.
I'm hoping to find someone else who had GCA, has stopped taking steroids and stopped Tocilizumab (
Actemra
), to know how their journey went from then on without treatment. I was diagnosed with GCA over 3 years ago.
Frenchduck
in
PMRGCAuk
10 months ago
Help for extreme pain in thighs and arms
I have been on
Actemra
injections since October 2019, now every three weeks (until January 2023) because of low WBC and neutrophils which are now back in the normal range. All bloodwork (end of October) is good, including thyroid which I know can cause muscle pain.
I have been on
Actemra
injections since October 2019, now every three weeks (until January 2023) because of low WBC and neutrophils which are now back in the normal range. All bloodwork (end of October) is good, including thyroid which I know can cause muscle pain.
GratefulBailey
in
PMRGCAuk
2 years ago
anyone tried or recommended to use Secukinumab(cosentyx) for GCA?
The one article stated that in trial MRA findings at 52 weeks 1/3 of patients on
Actemra
showed persistent or increased late vessel wall enhancement. These findings were a bit disturbing, as I developed a Thoracic Aortic Aneurysm from GCA.
The one article stated that in trial MRA findings at 52 weeks 1/3 of patients on
Actemra
showed persistent or increased late vessel wall enhancement. These findings were a bit disturbing, as I developed a Thoracic Aortic Aneurysm from GCA.
Elephants2019
in
PMRGCAuk
2 years ago
Actemra???
My rheumatologist is suggesting monthly infusions of
Actemra
so that I can reduce the prednisone. I have read up on this drug (tocilizumab) and it seems like a good thing. I am curious about those of you on the forum who have used this drug and what your experiences have been. Thanks in advance!
My rheumatologist is suggesting monthly infusions of
Actemra
so that I can reduce the prednisone. I have read up on this drug (tocilizumab) and it seems like a good thing. I am curious about those of you on the forum who have used this drug and what your experiences have been. Thanks in advance!
RivieraWelter
in
PMRGCAuk
2 years ago
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