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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
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
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
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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
11 months 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
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
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
1 year 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
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
1 year 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
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
9 months 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
Wasp Bite
Hurting in places that stopped hurting with
Actemra
. On my way to the walk in clinic to have arm looked at. Only someone else with this disease would or could understand the day to day frustration of living with this illness.
Hurting in places that stopped hurting with
Actemra
. On my way to the walk in clinic to have arm looked at. Only someone else with this disease would or could understand the day to day frustration of living with this illness.
phebamom
in
PMRGCAuk
2 years ago
Has anyone experienced interrupting Actemra for a general anaesthetic?
I take my
Actemra
injection every 3 weeks now and it's due tomorrow. I heard today that I have an appointment for a routine, 3-yearly, colonoscopy in 13 days time and I will see the anaesthetist on Monday.
I take my
Actemra
injection every 3 weeks now and it's due tomorrow. I heard today that I have an appointment for a routine, 3-yearly, colonoscopy in 13 days time and I will see the anaesthetist on Monday.
Frenchduck
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
Should I take Actemra injection when have possible cold?
I currently have sore throat and am a bit congested. Not sure if I should hold off on injection. No one to call as weekend, so asking here if anyone else has experienced this, and what their course of action was. Thank you!
I currently have sore throat and am a bit congested. Not sure if I should hold off on injection. No one to call as weekend, so asking here if anyone else has experienced this, and what their course of action was. Thank you!
Elephants2019
in
PMRGCAuk
2 years ago
Actemra infusions vs injections
Rheumatologist has me on 12mg prednisone,
Actemra
infusions & methotrexate. Is this normal? I would think I would either be on
Actemra
or methotrexate?
Rheumatologist has me on 12mg prednisone,
Actemra
infusions & methotrexate. Is this normal? I would think I would either be on
Actemra
or methotrexate?
pwalker801
in
PMRGCAuk
2 years ago
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