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The Actemra journey ...
Hello Everyone, It’s been several weeks since I was on here seeking advice about the PET scan and its efficacy in regard to GCA diagnosis. Because my CRP was 110 and ESR 53, Rheumatologist suspected GCA because, at 10mgs pred, the bloods were still high. She was right, and large vessel vasculitis
Hello Everyone, It’s been several weeks since I was on here seeking advice about the PET scan and its efficacy in regard to GCA diagnosis. Because my CRP was 110 and ESR 53, Rheumatologist suspected GCA because, at 10mgs pred, the bloods were still high. She was right, and large vessel vasculitis
LemonZest11
in
PMRGCAuk
4 years ago
Actemra info
As I said in previous post I've had severe arm pain, fluctuating bp, dizziness & fainted a few times, extra heart beats. My labs came back almost normal today. ESR and CRP are normal, but arms are so painful. I'm sure I am in a flare. Rheumy wants me to see primary asap. Hmmm. Needed more info. So
As I said in previous post I've had severe arm pain, fluctuating bp, dizziness & fainted a few times, extra heart beats. My labs came back almost normal today. ESR and CRP are normal, but arms are so painful. I'm sure I am in a flare. Rheumy wants me to see primary asap. Hmmm. Needed more info. So
Spanky2019
in
PMRGCAuk
4 years ago
BP labile & dizzy spells & arm pain
My bp has been extremely labile for about 3 months. Occasional dizzy spells and even fainted 3 times (always going from lying down to standing). Just got 48 hr heart monitor results. Msg from primary said "monitor shows several extra heart beats from both upper & lower heart chambers. These are probably
My bp has been extremely labile for about 3 months. Occasional dizzy spells and even fainted 3 times (always going from lying down to standing). Just got 48 hr heart monitor results. Msg from primary said "monitor shows several extra heart beats from both upper & lower heart chambers. These are probably
Spanky2019
in
PMRGCAuk
4 years ago
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Update
Just been told my last post is being deleted. My bad.... it is good that it is because two dear friends here are all worried about me so that post did not go the way I thought. You would think by now I would realize I am not funny while trying to be serious. My GP diagnosed gastritis about 4 weeks
Just been told my last post is being deleted. My bad.... it is good that it is because two dear friends here are all worried about me so that post did not go the way I thought. You would think by now I would realize I am not funny while trying to be serious. My GP diagnosed gastritis about 4 weeks
Hidden
in
PMRGCAuk
4 years ago
Tired and weak
For the last two months I have felt very tired and weak. I’m tired getting up in the morning and I can’t wait to hit the bed at 8:00pm. Listening to all the great advice from everyone on this site, I had my adrenals tested. I’m down to 4mg of Prednisone and having Actemra 4mg by IV every month. I’ve
For the last two months I have felt very tired and weak. I’m tired getting up in the morning and I can’t wait to hit the bed at 8:00pm. Listening to all the great advice from everyone on this site, I had my adrenals tested. I’m down to 4mg of Prednisone and having Actemra 4mg by IV every month. I’ve
Blackcatlover
in
PMRGCAuk
4 years ago
I have a question, GCA type😎🤔😏
....and a little bit of 😔 I'm on 6 mg of Medrol per day, I was still having some intermittent jaw and temple discomfort so my rheumatologist sent me for bloodwork. My CRP and sed rate were not just good, they were awesome, frustratingly awesome. The Doctor emailed me with the news and said that 'sometimes
....and a little bit of 😔 I'm on 6 mg of Medrol per day, I was still having some intermittent jaw and temple discomfort so my rheumatologist sent me for bloodwork. My CRP and sed rate were not just good, they were awesome, frustratingly awesome. The Doctor emailed me with the news and said that 'sometimes
Grammy80
in
PMRGCAuk
4 years ago
low numbers (roactemra)
I have diabetes (type 2 insulin based) and rheumatoid arthritis and am on a new medication called
roactemra
for arthritis. since it has been working properly my numbers have been low, almost normal. problem is I´m still on cortisone too (which put my numbers high) and am afraid when I come off the cortisone
I have diabetes (type 2 insulin based) and rheumatoid arthritis and am on a new medication called
roactemra
for arthritis. since it has been working properly my numbers have been low, almost normal. problem is I´m still on cortisone too (which put my numbers high) and am afraid when I come off the cortisone
sibby2813
in
Diabetes Research & Wellness Foundation
4 years ago
GCA - PMR doing great after 2 months
To recap, I had left temporal headache and PMR symptoms of hip, wrist and elbow arthralgias beginning in January of this year. I had no visual symptoms or jaw claudication. My sed rate was normal and CRP was slightly elevated. Prednisone 40 mg daily resulted in rapid resolution of all symptoms except
To recap, I had left temporal headache and PMR symptoms of hip, wrist and elbow arthralgias beginning in January of this year. I had no visual symptoms or jaw claudication. My sed rate was normal and CRP was slightly elevated. Prednisone 40 mg daily resulted in rapid resolution of all symptoms except
Rv8apilot
in
PMRGCAuk
4 years ago
Prednisone or not
Hi everyone I have tried so many of the best drugs and most expensive eg.cellcept, cyclosporin to name a few including the biological injection actemra but have just relapsed my only saving grace is prednisone but it comes with the obvious side effects is anybody in the same predicament do you just
Hi everyone I have tried so many of the best drugs and most expensive eg.cellcept, cyclosporin to name a few including the biological injection actemra but have just relapsed my only saving grace is prednisone but it comes with the obvious side effects is anybody in the same predicament do you just
Rika2020
in
NRAS
4 years ago
A bit of a GCA flare...not bad
I know PMPro won't be surprised to hear this....😊 My rheumatologist had been reducing my methylprednisolone quite rapidly compared to most of you...maybe all of you. I can sort of understand why because I was on 125mg of Prednisone for two months and then 68 of methylprednisolone from October 2019
I know PMPro won't be surprised to hear this....😊 My rheumatologist had been reducing my methylprednisolone quite rapidly compared to most of you...maybe all of you. I can sort of understand why because I was on 125mg of Prednisone for two months and then 68 of methylprednisolone from October 2019
Grammy80
in
PMRGCAuk
4 years ago
Covid-19 and Actemra
This is an interesting account from an American doctor... https://youtu.be/m2MEvswdXxE
This is an interesting account from an American doctor... https://youtu.be/m2MEvswdXxE
Bonnie-ma
in
PMRGCAuk
4 years ago
Rheumatoid arthritis info wanted
Does anyone know if St Mary’s Rheumatology Dept on the Isle of Wight administer the biological infusion of
Roactemra
.? I am in the process of returning to UK from France and need to continue with my present treatment . Any info would be most welcome
Does anyone know if St Mary’s Rheumatology Dept on the Isle of Wight administer the biological infusion of
Roactemra
.? I am in the process of returning to UK from France and need to continue with my present treatment . Any info would be most welcome
Hopegalore
in
Arthritis Action
4 years ago
Boniva with side effects or something else?
Need opinions about continuing Boniva i.v. every 3 months. Started Sept 2019. I've had 3 tx so far. No vertebral fractures but dexa shows clearly osteoporosis dx. Severe, intermittent back pain after 1st tx but wasn't sure from boniva b/c on high dose prednisone since last April due to giant cell arteritis
Need opinions about continuing Boniva i.v. every 3 months. Started Sept 2019. I've had 3 tx so far. No vertebral fractures but dexa shows clearly osteoporosis dx. Severe, intermittent back pain after 1st tx but wasn't sure from boniva b/c on high dose prednisone since last April due to giant cell arteritis
Spanky2019
in
Bone Health and Osteoporosis UK
4 years ago
Too much prednisone?
I know it is bad, but I was so desperate. I've felt pain in the PMR places for a week, and today it was just too much. I'd taken my25 mg in the morning, but about 12, I was still hurting so much in my hips, legs, shoulders, that I took 20 more pred. Now I am sweating and hoping I didn't overdose.
I know it is bad, but I was so desperate. I've felt pain in the PMR places for a week, and today it was just too much. I'd taken my25 mg in the morning, but about 12, I was still hurting so much in my hips, legs, shoulders, that I took 20 more pred. Now I am sweating and hoping I didn't overdose.
Trevgrrl
in
PMRGCAuk
4 years ago
Actemra side effects
I had to be taken off of Actemra, it caused Diverticulitis & a abscesses on My bowl & stomach, way to many side effects. Sorry for the negative reply but I was in hospital a long time over these side effects, & they all seem to hit You at the same time.. Good luck with Your decision..
I had to be taken off of Actemra, it caused Diverticulitis & a abscesses on My bowl & stomach, way to many side effects. Sorry for the negative reply but I was in hospital a long time over these side effects, & they all seem to hit You at the same time.. Good luck with Your decision..
beringer
in
PMRGCAuk
4 years ago
Actemra
Has anyone been on it for GCA? What was your experience?
Has anyone been on it for GCA? What was your experience?
Darcy2000
in
PMRGCAuk
4 years ago
PMR and coronavirus
I’m like most of us that are seniors and have symptoms, thinking I could have this virus. For Almost two weeks now I am intermittently running a low grade fever with normals. I have an intermittent sore throat. Because I fell on my cement patio I injured my shoulder. Been too worried to go to an
I’m like most of us that are seniors and have symptoms, thinking I could have this virus. For Almost two weeks now I am intermittently running a low grade fever with normals. I have an intermittent sore throat. Because I fell on my cement patio I injured my shoulder. Been too worried to go to an
Aleish
in
PMRGCAuk
4 years ago
Puzzled
I have PMR and possibly GCA. I’ve struggled for almost four years to control my pain and decrease my Prednisone. Adding the drug Actemra has really helped. I am currently down to 4.5mg of Prednisone and 4mg of Actemra by IV once a month. I get headaches off and on all through the month. Some are pretty
I have PMR and possibly GCA. I’ve struggled for almost four years to control my pain and decrease my Prednisone. Adding the drug Actemra has really helped. I am currently down to 4.5mg of Prednisone and 4mg of Actemra by IV once a month. I get headaches off and on all through the month. Some are pretty
Blackcatlover
in
PMRGCAuk
4 years ago
Faint & dizzy with GCA
Feel guilty asking about my illness when so many others are so ill throughout the world. But here goes... I'm now on 10 mg prednisone. Actemra was stopped a couple weeks b/c I have a cold. Had Boniva i.v. 10 days ago for osteo. The past 7 days I've had 4 episodes of dizziness, nausea & actually fainted
Feel guilty asking about my illness when so many others are so ill throughout the world. But here goes... I'm now on 10 mg prednisone. Actemra was stopped a couple weeks b/c I have a cold. Had Boniva i.v. 10 days ago for osteo. The past 7 days I've had 4 episodes of dizziness, nausea & actually fainted
Spanky2019
in
PMRGCAuk
4 years ago
China Approves Use of Actemra in Battle Against Coronavirus Complications.
I thought the forum might find this interesting. https://www.nytimes.com/reuters/2020/03/04/world/europe/04reuters-health-coronavirus-china-roche-hldg.html
I thought the forum might find this interesting. https://www.nytimes.com/reuters/2020/03/04/world/europe/04reuters-health-coronavirus-china-roche-hldg.html
cdenoncourt
in
PMRGCAuk
4 years ago
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