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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
flare
What is a PMR and GCA flare up symptoms? I was on prednisone X4 month, on Actemra shots weeklynow,my shoulder is painful, my ear feel stuffy, have knee pain, my Rheumatologist sees me every 3 months, when I told her about my knee pain she referred me to an orthopedic, when I told her about my ear she
What is a PMR and GCA flare up symptoms? I was on prednisone X4 month, on Actemra shots weeklynow,my shoulder is painful, my ear feel stuffy, have knee pain, my Rheumatologist sees me every 3 months, when I told her about my knee pain she referred me to an orthopedic, when I told her about my ear she
Cubanurse49
in
PMRGCAuk
7 months ago
GCA Tapering
Thanks to my kind, thoughtful, and new found wise consultants who understand, [u]all of you[/u], I developed some patience, and am finding that time and rest from your wise counsel have lessened my GCA symptoms by about 80%. Learning that Actemra needs more time to lessen the inflammation was helpful
Thanks to my kind, thoughtful, and new found wise consultants who understand, [u]all of you[/u], I developed some patience, and am finding that time and rest from your wise counsel have lessened my GCA symptoms by about 80%. Learning that Actemra needs more time to lessen the inflammation was helpful
Bummed24
in
PMRGCAuk
7 months ago
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Remission
I want to thank members of this forum for your insight and support over the past 2 1/2 years I have been dealing with GCA and everything that goes along with this disease. I have been off prednisone since last July, and Actemra since last October. I have not had any further GCA symptoms. I had an
I want to thank members of this forum for your insight and support over the past 2 1/2 years I have been dealing with GCA and everything that goes along with this disease. I have been off prednisone since last July, and Actemra since last October. I have not had any further GCA symptoms. I had an
Preacherball
in
PMRGCAuk
7 months ago
Any advice to get back on track please?
Hi kind and wise experts, I have completely stuffed up my GCA dosing regime and am an aching, weepy, exhausted (and clearly self indulgent!) mess😱😂 I wrote several months back asking for advice on coming off Actemra, after 2 yrs, and upping prednisone to cover it. I had been on 1.5mg pred daily
Hi kind and wise experts, I have completely stuffed up my GCA dosing regime and am an aching, weepy, exhausted (and clearly self indulgent!) mess😱😂 I wrote several months back asking for advice on coming off Actemra, after 2 yrs, and upping prednisone to cover it. I had been on 1.5mg pred daily
Happyexplorer
in
PMRGCAuk
7 months ago
Melanoma Surgery while taking Actemra and Prednisone
Hello, I have GCA/PMR and currently on 2.5mg prednisone and Actemra every other week. I just found out I have to have a melanoma surgery, and a surgery called “lymph node biopsy” where they remove some lymph nodes to determine if cancer has spread. My question is: should I increase/decrease prednisone
Hello, I have GCA/PMR and currently on 2.5mg prednisone and Actemra every other week. I just found out I have to have a melanoma surgery, and a surgery called “lymph node biopsy” where they remove some lymph nodes to determine if cancer has spread. My question is: should I increase/decrease prednisone
Pamk1949
in
PMRGCAuk
7 months ago
Giant Cell Arteritis
I’ve had GCA now for 14 months. Started out with failing vision in my left eye and lost most of my vision. Right eye still 20/20 thank god! Started with 60 mg Prednisone and slowly decreased after 2 months added Actemra injections once a week. Now done with Prednisone and on Actemra only. I’m doing
I’ve had GCA now for 14 months. Started out with failing vision in my left eye and lost most of my vision. Right eye still 20/20 thank god! Started with 60 mg Prednisone and slowly decreased after 2 months added Actemra injections once a week. Now done with Prednisone and on Actemra only. I’m doing
LRevell
in
PMRGCAuk
7 months ago
Actemra and Extremely Fast Taper off of Prednisone
I didn't expect the following during my last appointment with my Rheumatologist: I told her that some symptoms were resurfacing after having reduced from 20mg for 2 weeks to 17.5mg, for 2 weeks (due to go down to 15mg. 2 days after appt), slight pressure in left temple and newly developed persistent
I didn't expect the following during my last appointment with my Rheumatologist: I told her that some symptoms were resurfacing after having reduced from 20mg for 2 weeks to 17.5mg, for 2 weeks (due to go down to 15mg. 2 days after appt), slight pressure in left temple and newly developed persistent
newsusy
in
PMRGCAuk
7 months ago
Ending my Actemra next month
Ive been on the weekly Actemra syringe injections for two years. Diagnosed GCA from a biopsy in March 2022. Absolutely no side effects ever. I’m being taken off at the end of next month cold turkey. A little apprehensive (ie:scared) that a relapse may occur. Has anybody followed that same path or should
Ive been on the weekly Actemra syringe injections for two years. Diagnosed GCA from a biopsy in March 2022. Absolutely no side effects ever. I’m being taken off at the end of next month cold turkey. A little apprehensive (ie:scared) that a relapse may occur. Has anybody followed that same path or should
GCAYme
in
PMRGCAuk
7 months ago
GCA Duration Expectations
Hi All, I was diagnosed with GCA last October. Presently down to 12.5 mg. prednisone and Actemra and feeling quite well. Is it reasonable to hope that one could recover without ever flaring again? Is it unreasonable to hope to go back to life as I once knew it? Or will I always have to be extra careful
Hi All, I was diagnosed with GCA last October. Presently down to 12.5 mg. prednisone and Actemra and feeling quite well. Is it reasonable to hope that one could recover without ever flaring again? Is it unreasonable to hope to go back to life as I once knew it? Or will I always have to be extra careful
Lenore58
in
PMRGCAuk
7 months ago
Update on worsening headaches and scalp tenderness
Ten days ago, I increased my Prednisone to 65 mg. for scalp tenderness, jaw claudication for 24 hours, and headaches.My scalp tenderness, and ear pain has now diminished by about 50%. The headaches sometimes pounding, may be 30% less, and I often run a temp of 100.6. I am exercising less, and resting
Ten days ago, I increased my Prednisone to 65 mg. for scalp tenderness, jaw claudication for 24 hours, and headaches.My scalp tenderness, and ear pain has now diminished by about 50%. The headaches sometimes pounding, may be 30% less, and I often run a temp of 100.6. I am exercising less, and resting
Bummed24
in
PMRGCAuk
7 months ago
Ongoing headaches
I have been on 60 mg. of Pred x ten days for GCA/PMR and now have headaches and scalp tenderness worsening over the past 24 hours. Should I increase to maybe 62 mg. today? Second question, in looking ahead in hopes of the headaches going away.....my rheumy who advocates for shared decision making, suggests
I have been on 60 mg. of Pred x ten days for GCA/PMR and now have headaches and scalp tenderness worsening over the past 24 hours. Should I increase to maybe 62 mg. today? Second question, in looking ahead in hopes of the headaches going away.....my rheumy who advocates for shared decision making, suggests
Bummed24
in
PMRGCAuk
7 months ago
Actemra infusions approved.
Thank you so much for following me on this journey with PMR/GCA.( Diagnosis based on symptoms).I still have ongoing headaches, scalp tenderness and developed some jaw claudication a few days ago, so I am now taking sixty mg. of Pred. My fevers and night sweats went away a few days ago. My PMR symptoms
Thank you so much for following me on this journey with PMR/GCA.( Diagnosis based on symptoms).I still have ongoing headaches, scalp tenderness and developed some jaw claudication a few days ago, so I am now taking sixty mg. of Pred. My fevers and night sweats went away a few days ago. My PMR symptoms
Bummed24
in
PMRGCAuk
8 months ago
Helpful forum
Last week I posted about receiving a PMR diagnosis in December and had ongoing low level headaches and fevers along with my rheumatologist recommending a drop of Pred from 20 mg to ten over two weeks. Last weekend I developed increased scalp tenderness, and increased neck and shoulder pain, so increased
Last week I posted about receiving a PMR diagnosis in December and had ongoing low level headaches and fevers along with my rheumatologist recommending a drop of Pred from 20 mg to ten over two weeks. Last weekend I developed increased scalp tenderness, and increased neck and shoulder pain, so increased
Bummed24
in
PMRGCAuk
8 months ago
GCA Temporal/ Arteritis
I’ve had GCA for a little over a year now. I’m on Actemra injection only. It makes me feel a little woozy! Has anyone else had this feeling?
I’ve had GCA for a little over a year now. I’m on Actemra injection only. It makes me feel a little woozy! Has anyone else had this feeling?
LRevell
in
PMRGCAuk
8 months ago
GCA Ear pressure and stiff neck
I have GCA/PMR for the second time. For the past 6 weeks I’ve been taking 3mg prednisone and Actemra injections every other week. Since then, I have had ear pressure, and a throat that feels swollen. I’ve read that GCA can cause ear problems. Has anyone else experienced this? There are no visual
I have GCA/PMR for the second time. For the past 6 weeks I’ve been taking 3mg prednisone and Actemra injections every other week. Since then, I have had ear pressure, and a throat that feels swollen. I’ve read that GCA can cause ear problems. Has anyone else experienced this? There are no visual
Pamk1949
in
PMRGCAuk
8 months ago
Stress--patience--tapering going well...
I've been reading the forum almost daily but haven't posted, so I thought I'd update. After getting down to 1 mg after four years, in the fall of 2023, I had to go back to 60 mg...mostly other health issues and not really a typical GCA flare. Now, after just three months, I am at 4mg, along with my weekly
I've been reading the forum almost daily but haven't posted, so I thought I'd update. After getting down to 1 mg after four years, in the fall of 2023, I had to go back to 60 mg...mostly other health issues and not really a typical GCA flare. Now, after just three months, I am at 4mg, along with my weekly
Grammy80
in
PMRGCAuk
8 months ago
Article on blood markers & PMR/GCA
Hello, Came across this article today which I thought might be of interest. Being on Actemra I have reading up on articles that focus on alternative blood markers instead of CRP https://www.frontiersin.org/articles/10.3389/fimmu.2019.01981/full
Hello, Came across this article today which I thought might be of interest. Being on Actemra I have reading up on articles that focus on alternative blood markers instead of CRP https://www.frontiersin.org/articles/10.3389/fimmu.2019.01981/full
Gilmor
in
PMRGCAuk
9 months ago
Taking Actemra (Tocilizumab) syringes abroad
I have GCA and PMR and am currently on Actemera (Tocilizumab) . Planning to go to Australia at Easter and will need to take 6 syringes and keep them cool in transit for say 24 hours. Can anyone recommend a temperature controlled carrier case?
I have GCA and PMR and am currently on Actemera (Tocilizumab) . Planning to go to Australia at Easter and will need to take 6 syringes and keep them cool in transit for say 24 hours. Can anyone recommend a temperature controlled carrier case?
Niblick
in
PMRGCAuk
9 months ago
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
9 months ago
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