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choosing an alternative to Actemra
hello everyone! And thank you for your usual wise and knowledgeable input which helped me to decide to stop taking Actemra after about 6 months following two episodes of diverticulitis in as many months. Now I need some more help! Fortunately my Rheumy finds my decision understandable. I’d have had
hello everyone! And thank you for your usual wise and knowledgeable input which helped me to decide to stop taking Actemra after about 6 months following two episodes of diverticulitis in as many months. Now I need some more help! Fortunately my Rheumy finds my decision understandable. I’d have had
Japsquar
in
PMRGCAuk
4 months ago
Update on severe skin lesions
Hi everyone. Just wanted to give an update with regard to the severe skin rash/lesions I experienced in November My GP diagnosed it as urticarial vasculitis but my rheumatologist thought it might be an adverse drug reaction (belated) to actemra. She stopped the infusions and had me on an increased dose
Hi everyone. Just wanted to give an update with regard to the severe skin rash/lesions I experienced in November My GP diagnosed it as urticarial vasculitis but my rheumatologist thought it might be an adverse drug reaction (belated) to actemra. She stopped the infusions and had me on an increased dose
Charkha
in
PMRGCAuk
4 months ago
How I reinvented my life after GCA.
I had already retired as a Flight Attendant from a large commercial airline. I then went on to a part time job which I absolutely loved. I always said I was never going to stop working. I was healthy and could literally run rings around the younger employees. Life was good and I was so happy. 4 months
I had already retired as a Flight Attendant from a large commercial airline. I then went on to a part time job which I absolutely loved. I always said I was never going to stop working. I was healthy and could literally run rings around the younger employees. Life was good and I was so happy. 4 months
nallufl24
in
PMRGCAuk
4 months ago
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PMR flare, how much pain?
First, happy new year to the community Have not posted in a while, but wondering what a PMR flare feels like, how much pain should you expect vs something else? Not an easy question of course but have to try and determine if I have a PMR flare or something else. Stiff neck, right shoulder and sometimes
First, happy new year to the community Have not posted in a while, but wondering what a PMR flare feels like, how much pain should you expect vs something else? Not an easy question of course but have to try and determine if I have a PMR flare or something else. Stiff neck, right shoulder and sometimes
Gilmor
in
PMRGCAuk
4 months ago
Slight Cold and Actemra
I caught a slight cold over the holidays which I’ve had for about a week and a half. It’s been nothing more than a runny nose and congestion. Very mild. I decided to skip my 6th Actemra dose last Friday until it clears up. It’s almost gone but has settled in my sinuses. Tomorrow is Friday and that’s
I caught a slight cold over the holidays which I’ve had for about a week and a half. It’s been nothing more than a runny nose and congestion. Very mild. I decided to skip my 6th Actemra dose last Friday until it clears up. It’s almost gone but has settled in my sinuses. Tomorrow is Friday and that’s
Lenore58
in
PMRGCAuk
5 months ago
GCA Concerns, Cold and Eyes
I hope everyone had as wonderful a Christmas as I did, despite our health battles. I flew to Arkansas where 2 of my adult kids and 4 of my grandkids live. 2 other adult kids and their spouse and fiancé came, and it’s been a wonderful time. A cold was going around, and I caught it. Just the sniffles,
I hope everyone had as wonderful a Christmas as I did, despite our health battles. I flew to Arkansas where 2 of my adult kids and 4 of my grandkids live. 2 other adult kids and their spouse and fiancé came, and it’s been a wonderful time. A cold was going around, and I caught it. Just the sniffles,
Lenore58
in
PMRGCAuk
5 months ago
Actemra Side Effects?
After 4.5 years of PMR I was diagnosed with GCA September 2023. In late November my insurance approved me for receiving Actemra. I did not receive my first dose till last week, Dec. 14. I felt fine that day. The next day I could hardly get out of bed, felt very bloated and nauseous. After eating
After 4.5 years of PMR I was diagnosed with GCA September 2023. In late November my insurance approved me for receiving Actemra. I did not receive my first dose till last week, Dec. 14. I felt fine that day. The next day I could hardly get out of bed, felt very bloated and nauseous. After eating
Mooreby
in
PMRGCAuk
5 months ago
Eye:Broken Blood Vessel?
I traveled by air out of state yesterday. All went well; except I barely slept the night before traveling due to excitement and details. Last night my left eye stung, and tonight I just noticed red in the conjunctiva; looks like a broken blood vessel. Is this a known side effect of prednisone?(Currently
I traveled by air out of state yesterday. All went well; except I barely slept the night before traveling due to excitement and details. Last night my left eye stung, and tonight I just noticed red in the conjunctiva; looks like a broken blood vessel. Is this a known side effect of prednisone?(Currently
Lenore58
in
PMRGCAuk
5 months ago
Methotrexate or Prednisone which is more damaging?(also update on eyes)
Hi, it's me again. During an eye exam, I was told my optic nerve was narrow, and that I needed to be seen asap due to the risk of blindness with GCA. I got in to see a neuro ophthalmologist who told me that my optic nerve isn't narrow, it's just turned on an angle. Probably from my connective disease
Hi, it's me again. During an eye exam, I was told my optic nerve was narrow, and that I needed to be seen asap due to the risk of blindness with GCA. I got in to see a neuro ophthalmologist who told me that my optic nerve isn't narrow, it's just turned on an angle. Probably from my connective disease
potterylady
in
PMRGCAuk
5 months ago
Stopping Actemra
Good day all: Well, I called and canceled my Actemra infusion for today. I was recently diagnosed with something called MGRS (Monoclonal Gammopathy of renal Significance), It is related to Multiple Myeloma. I start chemotherapy for the MGRS next week, which is the same as the chemo for full
Good day all: Well, I called and canceled my Actemra infusion for today. I was recently diagnosed with something called MGRS (Monoclonal Gammopathy of renal Significance), It is related to Multiple Myeloma. I start chemotherapy for the MGRS next week, which is the same as the chemo for full
phebamom
in
PMRGCAuk
5 months ago
I was fine till doctor claimed I’m in remission
I need your advice again. I have been doing great on only Actemra for the last 2 years. 8 months ago rheumatologist cut my dose in half. I was still doing great til he wanted me to get my infusions every 8 weeks instead of 4. I lasted 6 weeks before my symptoms came back. I called and because my inflammation
I need your advice again. I have been doing great on only Actemra for the last 2 years. 8 months ago rheumatologist cut my dose in half. I was still doing great til he wanted me to get my infusions every 8 weeks instead of 4. I lasted 6 weeks before my symptoms came back. I called and because my inflammation
nallufl24
in
PMRGCAuk
6 months ago
Update on skin lesions
Hi everyone, just thought I would give update on the serious skin lesions I developed that were unlike the normal prednisone related ones. Sheffield Jane mentioned it could be urticaria vasculitis and my GP thought that the symptoms and duration of the lesions indicated that this is what it is. He did
Hi everyone, just thought I would give update on the serious skin lesions I developed that were unlike the normal prednisone related ones. Sheffield Jane mentioned it could be urticaria vasculitis and my GP thought that the symptoms and duration of the lesions indicated that this is what it is. He did
Kt1943
in
PMRGCAuk
6 months ago
Actemra and aches and pains!
I was put on Actemra about 3 months ago and have dropped as prescribed i.e. 1mg per month. I have had GCA for 14 years and was stuck on 14mgs of prednisolone for some time. It has been a struggle at times but a few weeks ago I noted I was beginning to ache in my muscles and joints similar to fourteen
I was put on Actemra about 3 months ago and have dropped as prescribed i.e. 1mg per month. I have had GCA for 14 years and was stuck on 14mgs of prednisolone for some time. It has been a struggle at times but a few weeks ago I noted I was beginning to ache in my muscles and joints similar to fourteen
Stkeyna
in
PMRGCAuk
6 months ago
GCA and Vision update
As you all may recall, I was started in 60 mg. Prednisone in October. I am currently on 40 mg. I have now had 3 (weekly) injections of Actemra. I am still very concerned about my eyesight. I still see double at a distance, though it’s not as divergent as it was, I can read again up close, though, without
As you all may recall, I was started in 60 mg. Prednisone in October. I am currently on 40 mg. I have now had 3 (weekly) injections of Actemra. I am still very concerned about my eyesight. I still see double at a distance, though it’s not as divergent as it was, I can read again up close, though, without
Lenore58
in
PMRGCAuk
6 months ago
Optic nerve narrowing
Hi everyone, I've had PMR & GCA for 16 months. Currently on 15mg prednisone. Stopped Actemra 2 months ago. My eyesight in my left eye has been changing rapidly over the past several months. It's gotten really blurry. I've never needed glasses for distance, but now it's hard to drive at night or see
Hi everyone, I've had PMR & GCA for 16 months. Currently on 15mg prednisone. Stopped Actemra 2 months ago. My eyesight in my left eye has been changing rapidly over the past several months. It's gotten really blurry. I've never needed glasses for distance, but now it's hard to drive at night or see
potterylady
in
PMRGCAuk
6 months ago
skin lesions that are not typical bruising from prednisone
Hi everyone, has anyone experienced skin lesions that begin by appearing to be some kind of an insect bite with tremendous itching and irritation and a lot of redness and then develop dark patches that look almost like scabs but aren’t. One of these had redness going all around my arm and another goes
Hi everyone, has anyone experienced skin lesions that begin by appearing to be some kind of an insect bite with tremendous itching and irritation and a lot of redness and then develop dark patches that look almost like scabs but aren’t. One of these had redness going all around my arm and another goes
Kt1943
in
PMRGCAuk
6 months ago
Let’s see? Bowel perforation and GCA Flare ?
I’ve been absent for a while…Reader’s Digest Version to follow. Though I haven’t been posting, I’ve been reading for a bit, and as usual….” You raise me up,” and I’m grateful. You may recall I had shoulder replacement surgery in July, and my arm is in amazing condition considering the interruptions
I’ve been absent for a while…Reader’s Digest Version to follow. Though I haven’t been posting, I’ve been reading for a bit, and as usual….” You raise me up,” and I’m grateful. You may recall I had shoulder replacement surgery in July, and my arm is in amazing condition considering the interruptions
Grammy80
in
PMRGCAuk
6 months ago
Doctor reinstated infusions every 4 weeks instead of 8
I recently commented that my rheumatologist said I’m in remission. After 6 weeks of my last infusion. I started to get dull headaches and ear pain. I waited the 8 weeks and my ESR had risen but was still in normal range. He still said I’m in remission because of the bloodwork. I got an Actemra infusion
I recently commented that my rheumatologist said I’m in remission. After 6 weeks of my last infusion. I started to get dull headaches and ear pain. I waited the 8 weeks and my ESR had risen but was still in normal range. He still said I’m in remission because of the bloodwork. I got an Actemra infusion
nallufl24
in
PMRGCAuk
7 months ago
"Scientists achieve breakthrough in treating 'neglected' polymyalgia rheumatica" - that's the headline but don't get too excited ...
https://www.news-medical.net/news/20231025/Scientists-achieve-breakthrough-in-treating-neglected-polymyalgia-rheumatica.aspx?utm_source=news_medical_newsletter&utm_medium=email&utm_campaign=rheumatology_newsletter_3_november_2023 The study is using sarilumab, aka Kevzara - not the first study, I'm sure
https://www.news-medical.net/news/20231025/Scientists-achieve-breakthrough-in-treating-neglected-polymyalgia-rheumatica.aspx?utm_source=news_medical_newsletter&utm_medium=email&utm_campaign=rheumatology_newsletter_3_november_2023 The study is using sarilumab, aka Kevzara - not the first study, I'm sure
PMRpro
Ambassador
in
PMRGCAuk
7 months ago
Actemra
hi I started the injection on Tuesday and haven’t felt right since. Lightheaded dizzy at times and on and of sickness. Has anyone els had side effects from this, and how long did they last. Iv been on a lot of injections for RA but my body seems to reject them I’m just hoping this isn’t the case and
hi I started the injection on Tuesday and haven’t felt right since. Lightheaded dizzy at times and on and of sickness. Has anyone els had side effects from this, and how long did they last. Iv been on a lot of injections for RA but my body seems to reject them I’m just hoping this isn’t the case and
Larachez2102
in
NRAS
7 months ago
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