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Actemra
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Is this a flare? Pain on only one side.
(I am also on
Actemra
.) About a month ago, the pain started again in both hips and both sides of the groin. I increased by 5 mg for a few days and it got much better.
(I am also on
Actemra
.) About a month ago, the pain started again in both hips and both sides of the groin. I increased by 5 mg for a few days and it got much better.
emmamom
in
PMRGCAuk
1 year ago
eye issues
I have been on a once a month infusion for
Actemra
while reducing my prednisone. I have absolutely not head pain. The problem has been for months my eyes. I thought it was just dry eyes. I went to my eye doctor several times, the most recent he perscribed Steroid eye drops for a week.
I have been on a once a month infusion for
Actemra
while reducing my prednisone. I have absolutely not head pain. The problem has been for months my eyes. I thought it was just dry eyes. I went to my eye doctor several times, the most recent he perscribed Steroid eye drops for a week.
Plains
in
PMRGCAuk
1 year ago
Rebound headaches?
Compared to many on here I’ve been leading a pretty active life since I’ve been on
Actemra
. I recently took a trip to Italy to see my son who is in our US military. My lower back pain kept me from seeing more of that fantastic country but I managed as best as I could and for that I am grateful.
Compared to many on here I’ve been leading a pretty active life since I’ve been on
Actemra
. I recently took a trip to Italy to see my son who is in our US military. My lower back pain kept me from seeing more of that fantastic country but I managed as best as I could and for that I am grateful.
nallufl24
in
PMRGCAuk
1 year ago
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Just a thank you
I was tired of rheumatologist telling me many of my side effects were not from prednisone, GCA or
Actemra
only to find out on here that many others suffered the same things. Anyway, I have learned so much and still have a long way ahead. Merry Christmas to all of you!
I was tired of rheumatologist telling me many of my side effects were not from prednisone, GCA or
Actemra
only to find out on here that many others suffered the same things. Anyway, I have learned so much and still have a long way ahead. Merry Christmas to all of you!
nallufl24
in
PMRGCAuk
1 year ago
Totally desperate and abandoned (sorry- this is a long rant)
I was thus able to be on Ro-
Actemra
(Tocilizumab) for nearly 4 years, but my last injection was in May this year, and a blood test last week shows I am having a major relapse 10 weeks after my last injection.
I was thus able to be on Ro-
Actemra
(Tocilizumab) for nearly 4 years, but my last injection was in May this year, and a blood test last week shows I am having a major relapse 10 weeks after my last injection.
Suzita76
in
PMRGCAuk
9 months ago
Confused
I had 2
Actemra
injections(epi-pen) and my rheamy says my bloodwork shows almost normal inflammation . I am currently on 35 mg pred and going to 30 next week.
I had 2
Actemra
injections(epi-pen) and my rheamy says my bloodwork shows almost normal inflammation . I am currently on 35 mg pred and going to 30 next week.
Joseph14612
in
PMRGCAuk
1 year ago
Thank you everyone for your company over the last two years in my GCA journey
My regime starting with 80mg prednisolone, tapering slowly but steadily adding
actemra
to the mix halfway through. Although careful with my diet I did have raised blood sugar levels but the diabetes pharmacist attached to my GP practice talked me through it and I am now clear.
My regime starting with 80mg prednisolone, tapering slowly but steadily adding
actemra
to the mix halfway through. Although careful with my diet I did have raised blood sugar levels but the diabetes pharmacist attached to my GP practice talked me through it and I am now clear.
Blairmore
in
PMRGCAuk
1 year ago
Any advice on tapering prednisolone with Methotrexate and RoActemra?
hello...would be grateful for words of wisdom and experience. Feeling confused on how to manage steroid reduction. Started Methotrexate 5 weeks ago and 3rd RoActemra injection tomorrow. Was told to reduce steroids from a high of 55mg at 5mg/week back in May. Am now on 20mg, reducing to 15mg on this
hello...would be grateful for words of wisdom and experience. Feeling confused on how to manage steroid reduction. Started Methotrexate 5 weeks ago and 3rd RoActemra injection tomorrow. Was told to reduce steroids from a high of 55mg at 5mg/week back in May. Am now on 20mg, reducing to 15mg on this
tweety_pie
in
PMRGCAuk
11 months ago
Blood pressure while on ACTEMRA
Hello, I had my infusion on Wednesday. I was exposed to someone with Covid the Sunday before and thought I may have covid because of the pretty bad headache I developed in Friday. As the day went on it got worse so I decided to check my blood pressure since I did not have any other covid symptoms. My
Hello, I had my infusion on Wednesday. I was exposed to someone with Covid the Sunday before and thought I may have covid because of the pretty bad headache I developed in Friday. As the day went on it got worse so I decided to check my blood pressure since I did not have any other covid symptoms. My
Plains
in
PMRGCAuk
1 year ago
Figured out what back/side issues are BUT nothing works...
So right now I am treating a strange skin thing (waiting to see biopsy report...something about skin thickening....sounds gross) and waiting on lots of blood work so I can start
Actemra
. The doc thinks my RA might be involved. I am not so sure....but will do whatever.
So right now I am treating a strange skin thing (waiting to see biopsy report...something about skin thickening....sounds gross) and waiting on lots of blood work so I can start
Actemra
. The doc thinks my RA might be involved. I am not so sure....but will do whatever.
Wallysma
in
PMRGCAuk
1 year ago
Adrenal Insufficiency???
Hello everyone, this nightmare journey just seems to be never ending and I am so in need of some advice....... 8 days ago I took my last 1mg of Prednisone after being on it for 12 months starting at 65mg plus weekly
Actemra
injections.
Hello everyone, this nightmare journey just seems to be never ending and I am so in need of some advice....... 8 days ago I took my last 1mg of Prednisone after being on it for 12 months starting at 65mg plus weekly
Actemra
injections.
MarksPoint
in
PMRGCAuk
1 year ago
GCA Hair Loss & Skin Changes
Diagnosed with GCA ( Right Temporal artery biopsy) & placed on 50mg Prednisone daily & 10mg AMLO daily Dec 2022 commenced weekly injections of 162mg Tocilizumab (
Actemra
) & still having the injection as I write Dec 2022 commenced tapering of Prednisone as directed & last dose was taken April 2023
Diagnosed with GCA ( Right Temporal artery biopsy) & placed on 50mg Prednisone daily & 10mg AMLO daily Dec 2022 commenced weekly injections of 162mg Tocilizumab (
Actemra
) & still having the injection as I write Dec 2022 commenced tapering of Prednisone as directed & last dose was taken April 2023
driveway77
in
PMRGCAuk
1 year ago
GCA and sore lumpy tongue
I've managed to get to 5.5mg with the help of
Actemra
over the last 16 months, not as fast my my Rheumy would like but she accepts some folk are slower.
I've managed to get to 5.5mg with the help of
Actemra
over the last 16 months, not as fast my my Rheumy would like but she accepts some folk are slower.
Happyexplorer
in
PMRGCAuk
1 year ago
On Actemra now and reducing Prednisone
I live in California and I know some countries don't allow
Actemra
like here. It's super expensive! I'm grateful that my health insurance pays for most of it. I've had 5 shots of
Actemra
, one per week. I started reducing my Prednisone down from 50mg. I'm now at 30mg per day.
I live in California and I know some countries don't allow
Actemra
like here. It's super expensive! I'm grateful that my health insurance pays for most of it. I've had 5 shots of
Actemra
, one per week. I started reducing my Prednisone down from 50mg. I'm now at 30mg per day.
potterylady
in
PMRGCAuk
2 years ago
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
Actemra?
I have been started on
Actemra
but don’t 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 don’t 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
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
1 year ago
CRP and ESR
I am in US and on
Actemra
24 weeks and prednisone 12.5 and having right temple pain and right eye pain ...started at 60 mg prednisone in August-Sept 2022 ...don't remember exact month....
I am in US and on
Actemra
24 weeks and prednisone 12.5 and having right temple pain and right eye pain ...started at 60 mg prednisone in August-Sept 2022 ...don't remember exact month....
Joseph14612
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
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