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Off Prednisone for 3 weeks but.......
I have been on prednisone since May of 2021. 10 months ago my rheumatologist added Actemra infusions to my regimen. 3 weeks ago I finally was completely weaned off of prednisone. This past week, and just one day after my infusion, I started having severe stomach cramping, diarrhea, shoulder joint pains
I have been on prednisone since May of 2021. 10 months ago my rheumatologist added Actemra infusions to my regimen. 3 weeks ago I finally was completely weaned off of prednisone. This past week, and just one day after my infusion, I started having severe stomach cramping, diarrhea, shoulder joint pains
A77bruin
in
PMRGCAuk
4 months ago
GCA-Diagnosis
So far on my journey after diagnosis of GCA was put on 60 mg Prednisone and went down slowly to none. Have been on Actemra shot weekly for 16 months now with no flare. Has anyone gotten of Actemra as well as Prednisone with no problems?
So far on my journey after diagnosis of GCA was put on 60 mg Prednisone and went down slowly to none. Have been on Actemra shot weekly for 16 months now with no flare. Has anyone gotten of Actemra as well as Prednisone with no problems?
LRevell
in
PMRGCAuk
4 months ago
I know I’m having a flare-rheum disagrees
Hi Friends- I was diagnosed with GCA in April ‘23 after a five day hospitalization. My symptoms: severe headaches, teeth and jaw pain and excruciating right ear pain. Finally they figured it out. Started on 60 mgs of Pred and Actemra. Dr. withdrew Actemra in Feb. as she was concerned about a neuropathy
Hi Friends- I was diagnosed with GCA in April ‘23 after a five day hospitalization. My symptoms: severe headaches, teeth and jaw pain and excruciating right ear pain. Finally they figured it out. Started on 60 mgs of Pred and Actemra. Dr. withdrew Actemra in Feb. as she was concerned about a neuropathy
Birdfriend
in
PMRGCAuk
4 months ago
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Spoke too soon
After I posted, I found some chatter from four years ago addressing my concerns. It seems like I just need to wait to taper until I have better control of my symptoms. Admittedly, I am feeling pressure from my provider to reduce five mg every week or so, since I have been on Actemra. Which I am not
After I posted, I found some chatter from four years ago addressing my concerns. It seems like I just need to wait to taper until I have better control of my symptoms. Admittedly, I am feeling pressure from my provider to reduce five mg every week or so, since I have been on Actemra. Which I am not
Bummed24
in
PMRGCAuk
5 months ago
Should it take this long to taper with PMR/GCA?
I am so sorry to be needing advice again, but I am wondering if anyone else has struggled to wean from higher doses of Prednisone for PMR and GCA. Since late January I have been on dosages of 65mg. and weaned down to 45mg. by early April. Since then I can't seem to get below 45mg. as I have a return
I am so sorry to be needing advice again, but I am wondering if anyone else has struggled to wean from higher doses of Prednisone for PMR and GCA. Since late January I have been on dosages of 65mg. and weaned down to 45mg. by early April. Since then I can't seem to get below 45mg. as I have a return
Bummed24
in
PMRGCAuk
5 months ago
Antibiotic and Actemra
Hello folks, I have an infection in my tooth and need to take an antibiotic for 10 days. If I'm understanding the guidelines for Actemra correctly, apparently, I am supposed to stop my Actemra injection (which is every two weeks) while I am on an antibiotic. My question is, is that really necessary
Hello folks, I have an infection in my tooth and need to take an antibiotic for 10 days. If I'm understanding the guidelines for Actemra correctly, apparently, I am supposed to stop my Actemra injection (which is every two weeks) while I am on an antibiotic. My question is, is that really necessary
ILbbHpmr
in
PMRGCAuk
5 months ago
Generic TCZ---is it available in the UK?
My friends, Without this forum, my GCA journey would have been entirely different. You have all been there to support me, educate me, and reinforce me when I thought I was sinking. It has always made me sad that TCZ is only available to GCA patients for one year, subject to review for an additional
My friends, Without this forum, my GCA journey would have been entirely different. You have all been there to support me, educate me, and reinforce me when I thought I was sinking. It has always made me sad that TCZ is only available to GCA patients for one year, subject to review for an additional
Grammy80
in
PMRGCAuk
5 months ago
Trip to the Er/ED
A day or 2 ago, I wrote in about experiencing vertigo. I tried the Epley Maneuver on myself, and have not had any more episodes of such extreme, dramatic vertigo. However, I was left with mild dizziness, such as when one has the flu and it feels like you are swimming underwater and everything seems unsteady
A day or 2 ago, I wrote in about experiencing vertigo. I tried the Epley Maneuver on myself, and have not had any more episodes of such extreme, dramatic vertigo. However, I was left with mild dizziness, such as when one has the flu and it feels like you are swimming underwater and everything seems unsteady
Lenore58
in
PMRGCAuk
5 months ago
giant Cell
I’m off Prednisone and on Actemra only now. I inject it once a week. Lately been feeling a little light headed and woozy. My blood pressure is fine!
I’m off Prednisone and on Actemra only now. I inject it once a week. Lately been feeling a little light headed and woozy. My blood pressure is fine!
LRevell
in
PMRGCAuk
5 months ago
GCA Questions
Hi Kind Friends, My GCA hit last October, about 6 months ago, and I was put on 60 mg. Prednisone. (I’ve also been on Actemra since November.) I’m doing pretty well, but I wanted to check in regarding my tapering. I’m down to 8 mg. (from 9, about a week ago), and will have stayed there 1 month when
Hi Kind Friends, My GCA hit last October, about 6 months ago, and I was put on 60 mg. Prednisone. (I’ve also been on Actemra since November.) I’m doing pretty well, but I wanted to check in regarding my tapering. I’m down to 8 mg. (from 9, about a week ago), and will have stayed there 1 month when
Lenore58
in
PMRGCAuk
5 months ago
testing for IL6
Is it possible to test for the IL 6 factor before starting Actemra to see if Actemra will work for you?
Is it possible to test for the IL 6 factor before starting Actemra to see if Actemra will work for you?
Mstiles
in
PMRGCAuk
5 months ago
Jaw locking while tapering for GCA
I am in the process of tapering from 65 mg of Prednisone for GCA. Tonight the right side of my jaw temporarily locked while brushing my teeth. If I am honest, my scalp is becoming a bit tender again, and my tinnitus has increased a notch. I was on the high doses of Prednisone for six weeks, and began
I am in the process of tapering from 65 mg of Prednisone for GCA. Tonight the right side of my jaw temporarily locked while brushing my teeth. If I am honest, my scalp is becoming a bit tender again, and my tinnitus has increased a notch. I was on the high doses of Prednisone for six weeks, and began
Bummed24
in
PMRGCAuk
5 months ago
Confused
Hello to all, I am a 61 year old man living in Madrid (Spain). At the beginning of December 2023 I had a loss of vision in my left eye, as well as a terrible headache. I went to the hospital and was diagnosed with GCA. I was treated with high doses of corticosteroids. After fourteen days I was discharged
Hello to all, I am a 61 year old man living in Madrid (Spain). At the beginning of December 2023 I had a loss of vision in my left eye, as well as a terrible headache. I went to the hospital and was diagnosed with GCA. I was treated with high doses of corticosteroids. After fourteen days I was discharged
Azulmarino
in
PMRGCAuk
6 months ago
Tyenne /Tocilizumab
Hi just to say I be just received a letter to say I’m changing from actemra to this brand. Hopefully a lower price will make it an option for more people.
Hi just to say I be just received a letter to say I’m changing from actemra to this brand. Hopefully a lower price will make it an option for more people.
Devoid
in
PMRGCAuk
6 months ago
Can't squat or raise arms without pain?
I have tapered down to 1 mg Prednisone over three years (from 15mg). I have the same weird symptoms that I've always had. If I squat, my legs feel an extreme fatigue/deadness. I can't raise my arms for more than 15-20 seconds without them feeling an extreme fatigue/pain/deadness. Does anyone else have
I have tapered down to 1 mg Prednisone over three years (from 15mg). I have the same weird symptoms that I've always had. If I squat, my legs feel an extreme fatigue/deadness. I can't raise my arms for more than 15-20 seconds without them feeling an extreme fatigue/pain/deadness. Does anyone else have
Greytree
in
PMRGCAuk
6 months ago
Tapering Regime while on Kevzara (or other biologic)
I'm in the U.S. getting Kevzara (third injection is this Tuesday i.e. week six). I am grateful I was allowed to try Kevzara after 9 years on prednisone and never being able to get below 5 mg without a flare amongst other reasons. I have tried to look up the tapering regime for attempting a taper with
I'm in the U.S. getting Kevzara (third injection is this Tuesday i.e. week six). I am grateful I was allowed to try Kevzara after 9 years on prednisone and never being able to get below 5 mg without a flare amongst other reasons. I have tried to look up the tapering regime for attempting a taper with
artfingers
in
PMRGCAuk
6 months ago
Tapering Pred from 2mg....to 1.5 or 1mg~?
To complete the picture, I do take an injection of Actemra weekly. My GCA started in 2019 and getting this low is a first. My dosage was increased last fall due to other health issues and being off my Actemra. Since September 2023, I've gone down from 60mg per day with no issue. I've been on 2
To complete the picture, I do take an injection of Actemra weekly. My GCA started in 2019 and getting this low is a first. My dosage was increased last fall due to other health issues and being off my Actemra. Since September 2023, I've gone down from 60mg per day with no issue. I've been on 2
Grammy80
in
PMRGCAuk
6 months ago
Another Pred journey
I have been 5 years on Pred and 3 years on Actemra A bit of up’s and downs but did very well with no side effects ( except bone loss) Lately got to 3 and poof back to square one again after major flare. Up to 20 mg with a probable 2 year tapering schedule. Probably same thing will happen again below
I have been 5 years on Pred and 3 years on Actemra A bit of up’s and downs but did very well with no side effects ( except bone loss) Lately got to 3 and poof back to square one again after major flare. Up to 20 mg with a probable 2 year tapering schedule. Probably same thing will happen again below
Sunny1947
in
PMRGCAuk
7 months ago
Methotrexate added to Pred now
Hello lovely support group, 20 months into my PMR GCA journey now. I saw my rheumy yesterday and she wants me to get lower on the Pred. She suggested Methotrexate before, but I pushed back. I was on Actemra before but it was causing worse headaches so I had to stop it. This past week, I was on 10.5mg
Hello lovely support group, 20 months into my PMR GCA journey now. I saw my rheumy yesterday and she wants me to get lower on the Pred. She suggested Methotrexate before, but I pushed back. I was on Actemra before but it was causing worse headaches so I had to stop it. This past week, I was on 10.5mg
potterylady
in
PMRGCAuk
7 months ago
Pain in Left Eye
Hi Kind Friends, I am currently on 12.5 mg prednisone (tapering from 60 in Oct.) and weekly Actemra injections (about 4 months) Double vision from high prednisone has resolved as I have tapered. Occasionally I feel pain in my left eye, in the outer lower corner. It will hurt when I move my eye,
Hi Kind Friends, I am currently on 12.5 mg prednisone (tapering from 60 in Oct.) and weekly Actemra injections (about 4 months) Double vision from high prednisone has resolved as I have tapered. Occasionally I feel pain in my left eye, in the outer lower corner. It will hurt when I move my eye,
Lenore58
in
PMRGCAuk
7 months ago
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