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Actemra
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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
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
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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
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
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
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
Kidney or bladder
Am wondering of BP meds did this, or possibly
Actemra
. Or, can PMR/GCA cause kidney issues, not to mention prednisone. Anyone else have similar issues.
Am wondering of BP meds did this, or possibly
Actemra
. Or, can PMR/GCA cause kidney issues, not to mention prednisone. Anyone else have similar issues.
phebamom
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
Coming off Liothyronine
Ive had thyroid probs for more than 20 years first hyperactive then following radio iodine treatment hypo, since then Ive been on Levothyroxine 125-150mg daily. I've never felt really satified with the treatment but had settle into a kind of acceptance and was self dosing at times. That is until 2/3
Ive had thyroid probs for more than 20 years first hyperactive then following radio iodine treatment hypo, since then Ive been on Levothyroxine 125-150mg daily. I've never felt really satified with the treatment but had settle into a kind of acceptance and was self dosing at times. That is until 2/3
technogran
in
Thyroid UK
1 year ago
Preparation for Actemra infusion?
I will have a two hour infusion with
Actemra
(Tocilizumab)Monday morning. It is the first time I’ve done this and I’m supposed to have one each month. Are there any suggestions on how I might prepare myself so I won’t be made sick by the Infusion? What questions do I need to ask?
I will have a two hour infusion with
Actemra
(Tocilizumab)Monday morning. It is the first time I’ve done this and I’m supposed to have one each month. Are there any suggestions on how I might prepare myself so I won’t be made sick by the Infusion? What questions do I need to ask?
Greytree
in
PMRGCAuk
2 years ago
Help with Lupus-RA Overlap biologics treatment options
The doctor says Orencia is her first pick of a drug to try, but could prescribe
Actemra
or Benlysta instead. She asked to choose between continuing with the Orencia injections weekly, switching to Orencia monthly infusion, weekly
Actemra
, or weekly Benlysta.
The doctor says Orencia is her first pick of a drug to try, but could prescribe
Actemra
or Benlysta instead. She asked to choose between continuing with the Orencia injections weekly, switching to Orencia monthly infusion, weekly
Actemra
, or weekly Benlysta.
KevDog41
in
LUpus Patients Understanding and Support
2 years ago
My fatigue is turning into coma-like sleep. What's up?
I've been on steroids since August of 2019, along with
Actemra
. I've decreased to 8mg (taper every six weeks) and will go to 7 next week. This is the first time in these past years I have ever gotten below ten ~! I have not had
Actemra
, TCZ, for four weeks because I'm healing a wound on my leg.
I've been on steroids since August of 2019, along with
Actemra
. I've decreased to 8mg (taper every six weeks) and will go to 7 next week. This is the first time in these past years I have ever gotten below ten ~! I have not had
Actemra
, TCZ, for four weeks because I'm healing a wound on my leg.
Grammy80
in
PMRGCAuk
2 years ago
Diarrhea while weaning pred and on actemra
Take one
actemra
shot a week. I take imodium with the diarrhea and it helps somewhat. I might have a solid stool for one day and then diarrhea for several. Has anyone else had this experience while tapering or while on
Actemra
?
Take one
actemra
shot a week. I take imodium with the diarrhea and it helps somewhat. I might have a solid stool for one day and then diarrhea for several. Has anyone else had this experience while tapering or while on
Actemra
?
emmamom
in
PMRGCAuk
2 years ago
Actemra Advice and Help!
I’m in need of advice now from anyone who has experienced taking
Actemra
with GCA. I was diagnosed clinically on symptoms 5 years ago. temporal biopsy was negative—I took prednisone for four years tapering very slowly. I’ve been off prednisone for a year now, but started again with symptoms.
I’m in need of advice now from anyone who has experienced taking
Actemra
with GCA. I was diagnosed clinically on symptoms 5 years ago. temporal biopsy was negative—I took prednisone for four years tapering very slowly. I’ve been off prednisone for a year now, but started again with symptoms.
Pamk1949
in
PMRGCAuk
2 years ago
Question? Methotrexate and Actemra
Grateful to all of you🙏 Currently doctor has me on prednisone(slowly tapering currently at 8mg, next week will begin taper to 7.5) methotrexate (10mg weekly) and monthly infusion of
Actemra
equal to the weekly auto injection of
Actemra
.
Grateful to all of you🙏 Currently doctor has me on prednisone(slowly tapering currently at 8mg, next week will begin taper to 7.5) methotrexate (10mg weekly) and monthly infusion of
Actemra
equal to the weekly auto injection of
Actemra
.
Elephants2019
in
PMRGCAuk
2 years ago
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