Search
Search
About
Log in
Join
Experiences with
Actemra
Posts
Communities
771 public posts
Filter results
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
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 I’m 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 I’m just frustrated with this whole GCA trip and wondering if it will ever end.
pmac22
in
PMRGCAuk
2 years ago
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 😧 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 😧 probably mycophenolate and Im not keen to do it.
HappyDiamonds
in
PMRGCAuk
1 year ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
ACTEMRA dose with prednisone
Will I have to take more prednisone since I won’t 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 won’t 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
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
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
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
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. So that’s 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 haven’t changed in 10 years.
He denied
Actemra
as the test for GCA was negative. So that’s 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 haven’t changed in 10 years.
Nightingales
in
PMRGCAuk
1 year ago
Don't blame it all on the prednisone! Check things out.👩🏻⚕️ or 👨🏻⚕️
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 grandson’s 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 grandson’s 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
Am I at wrong Prednisone level?
One rheumatologist thinks I have GCA and I had my first dose of
Actemra
two weeks ago. His nurse says the prednisone Will be reduced after more
Actemra
infusions - once a month.) But, in the meantime, should I be at a level of Prednisone that makes me feel ok? Thanks for any thoughts.
One rheumatologist thinks I have GCA and I had my first dose of
Actemra
two weeks ago. His nurse says the prednisone Will be reduced after more
Actemra
infusions - once a month.) But, in the meantime, should I be at a level of Prednisone that makes me feel ok? Thanks for any thoughts.
Greytree
in
PMRGCAuk
2 years ago
GCA Taper from 60 mg
I believe I will be starting
Actemra
soon, but for some reason not until next month? Just checking in with all of you and the Ambassadors because this site has knowledge, and has my trust! Thanks. PS: I’m in the USA
I believe I will be starting
Actemra
soon, but for some reason not until next month? Just checking in with all of you and the Ambassadors because this site has knowledge, and has my trust! Thanks. PS: I’m in the USA
Pamk1949
in
PMRGCAuk
2 years ago
Does anyone have information about or has tried the biologic Sarilumab (Kevzara) for PMR?
Unfortunately for me, one of the side effects (and there seems to be many) is possible small tears in the intestines (not unlike
Actemra
), and given that I've had diverticulitis I may not be a good candidate.
Unfortunately for me, one of the side effects (and there seems to be many) is possible small tears in the intestines (not unlike
Actemra
), and given that I've had diverticulitis I may not be a good candidate.
PMRCanada
in
PMRGCAuk
1 year ago
1
...
9
10
11
...
39
Next page
10
20
30
Filter results
Clear filters
Posted in
All communities
PMRGCAuk
663 results
NRAS
79 results
LUpus Patients Understanding and Support
8 results
View top 10 communities
Sort by
Most Relevant
Newest