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Has anyone heard of this
I have had PMR 3 years. Could never get below 8 mgs of pred. Took methotrexate and then Actemra with no change. Few months ago my new rheumie prescribed hydroxychloroquine 200 mgs. It is a drug that prevents and treats malaria of all things but I have also read tat it is used as a steroid sparing drug
I have had PMR 3 years. Could never get below 8 mgs of pred. Took methotrexate and then Actemra with no change. Few months ago my new rheumie prescribed hydroxychloroquine 200 mgs. It is a drug that prevents and treats malaria of all things but I have also read tat it is used as a steroid sparing drug
Alfryd
in
PMRGCAuk
4 years ago
What are the expected effects of tapering?
I'm going at about half-speed today~~better than yesterday. After almost five months on high methylpred in December started tapering. I also do weekly injections of Actemra. The first taper from 64 per day to 32 I felt nothing, from 32 to 24 I had a period of a few days where I was uncomfortable and
I'm going at about half-speed today~~better than yesterday. After almost five months on high methylpred in December started tapering. I also do weekly injections of Actemra. The first taper from 64 per day to 32 I felt nothing, from 32 to 24 I had a period of a few days where I was uncomfortable and
Grammy80
in
PMRGCAuk
4 years ago
Surgery successfully next step actemra
BCC surgery successfully completed. Dr says if no sign of infection in incision, in 1 more week I should start Actemra. There's alot of negative things about Actemra, including heart issues and increased skin cancer risk. I'm at 25 mg prednisone now and feeling pretty good. Not losing weight anymore
BCC surgery successfully completed. Dr says if no sign of infection in incision, in 1 more week I should start Actemra. There's alot of negative things about Actemra, including heart issues and increased skin cancer risk. I'm at 25 mg prednisone now and feeling pretty good. Not losing weight anymore
Spanky2019
in
PMRGCAuk
4 years ago
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Is PMR possible with low markers?
Today I got a call from the rhuematologist's office telling me that my bloodwork came back and inflammatory markers are down to normal....NOW~~~~ I will learn exactly, I hope, what that means. Definitely feel better and do believe the vision I have in my right eye is a bit sharper. Here comes the but
Today I got a call from the rhuematologist's office telling me that my bloodwork came back and inflammatory markers are down to normal....NOW~~~~ I will learn exactly, I hope, what that means. Definitely feel better and do believe the vision I have in my right eye is a bit sharper. Here comes the but
Grammy80
in
PMRGCAuk
4 years ago
Good Prednisone Sparers (and Bad)?
I must not be in proper remission - docs recently encouraged tapering, and I got down to 9 mg which caused a flare that I don't seem to be able to get out of. Went back up to 10 but still feel like body is full of concrete. I'm seeing the rheumy on the 28th and in our last (first) visit she said she
I must not be in proper remission - docs recently encouraged tapering, and I got down to 9 mg which caused a flare that I don't seem to be able to get out of. Went back up to 10 but still feel like body is full of concrete. I'm seeing the rheumy on the 28th and in our last (first) visit she said she
schmuppy
in
PMRGCAuk
4 years ago
Normal Sed rate, CRP, on Actemra for 2 1/2 months, trouble with Prednisone taper
I have read several posts emphasizing the need for a slow taper, but when I tried reducing from 8 mg prednisone to 7.5, my GCA headaches returned, along with the usual prednisone withdrawal symptoms, for me the worst being fatigue, nausea and muscle pain. I went up to 8 mg after 3 days. My rheumatologist
I have read several posts emphasizing the need for a slow taper, but when I tried reducing from 8 mg prednisone to 7.5, my GCA headaches returned, along with the usual prednisone withdrawal symptoms, for me the worst being fatigue, nausea and muscle pain. I went up to 8 mg after 3 days. My rheumatologist
GratefulBailey
in
PMRGCAuk
4 years ago
Weight gain on actemra
I was diagnosed with giant cell arteritis in March of 2018 and have been on Prednisone medication ever since. I did not have a significant weight gain with the initial prednisone medication but since I started Actemra in November 2019 I've gained over 20 lb. Has anyone else had a similar experience?
I was diagnosed with giant cell arteritis in March of 2018 and have been on Prednisone medication ever since. I did not have a significant weight gain with the initial prednisone medication but since I started Actemra in November 2019 I've gained over 20 lb. Has anyone else had a similar experience?
brenda1207
in
NRAS
4 years ago
Another newbie
I’ve started 2020 well by joining the group. Much to my surprise I was diagnosed with PMR and GCA in May 2019. My GP prescribed 50 mg Prednisolone and referred me to a rheumatologist. I had tapered to 8 mg when the symptoms reappeared. The rheumatologist has suggested I may be eligible for Actemra
I’ve started 2020 well by joining the group. Much to my surprise I was diagnosed with PMR and GCA in May 2019. My GP prescribed 50 mg Prednisolone and referred me to a rheumatologist. I had tapered to 8 mg when the symptoms reappeared. The rheumatologist has suggested I may be eligible for Actemra
TasKiwi
in
PMRGCAuk
4 years ago
I’m a GCA patient who is new to this site... being treated with Actemra and having a difficult time with a prednisone taper
After being diagnosed with GCA in late April 2019, I began a low dose (5 mg) Prednisone treatment, increasing this dose until I reached 40 mg in mid May. Increased again to 50 mg by mid June, but had to begin tapering after 3 weeks because of severe side effects. I was down to10 mg by the beginning of
After being diagnosed with GCA in late April 2019, I began a low dose (5 mg) Prednisone treatment, increasing this dose until I reached 40 mg in mid May. Increased again to 50 mg by mid June, but had to begin tapering after 3 weeks because of severe side effects. I was down to10 mg by the beginning of
GratefulBailey
in
PMRGCAuk
4 years ago
I'M NEW HERE AND ON PREDNISOLONE FOR A YEAR FOR GCA
I am tapering and currently down for the second time to 15mg and am also on a drug trial of
Roactemra
which is a steroid sparing. I've had 2 xrays, a CT scan and a peak flow test at the hospital but apart from mild chronic bronchitis (which I've never had before) nothing has shown up.
I am tapering and currently down for the second time to 15mg and am also on a drug trial of
Roactemra
which is a steroid sparing. I've had 2 xrays, a CT scan and a peak flow test at the hospital but apart from mild chronic bronchitis (which I've never had before) nothing has shown up.
technogran
in
PMRGCAuk
5 years ago
Mycophenolate
Hi -anyone been given mycophenolate for GCA? My relative was put on high steroids , methotextrate and then chemotherapy and now this ( with steroids). I am very disappointed they haven’t given her actemra ( the biologic drug that is specifically for GCA rather than these old poisonous drugs that haven
Hi -anyone been given mycophenolate for GCA? My relative was put on high steroids , methotextrate and then chemotherapy and now this ( with steroids). I am very disappointed they haven’t given her actemra ( the biologic drug that is specifically for GCA rather than these old poisonous drugs that haven
Relative
in
PMRGCAuk
5 years ago
Just chatted with a gentleman with GCA
A friend told me she had a friend who's husband lost his sight completely due to GCA and gave me his phone number after giving him a heads-up. He is 79 also and lost his sight 15 years ago. He said he suddenly lost one eye but his doctor was so apprehensive about prednisone that he was never 'hit'
A friend told me she had a friend who's husband lost his sight completely due to GCA and gave me his phone number after giving him a heads-up. He is 79 also and lost his sight 15 years ago. He said he suddenly lost one eye but his doctor was so apprehensive about prednisone that he was never 'hit'
Grammy80
in
PMRGCAuk
5 years ago
Any info or help appreciated~! Methylpred and Actemra
I woke up on August 5, this year, and was blind in my left eye. I was diangosed that day with GCA. The previous week I had gone to the Doctor but was diagnosed with a sinus infection. It is a tough one...right now I am just beginning to taper (and am pretty nervous) fro 64 mg of methylprednisolone
I woke up on August 5, this year, and was blind in my left eye. I was diangosed that day with GCA. The previous week I had gone to the Doctor but was diagnosed with a sinus infection. It is a tough one...right now I am just beginning to taper (and am pretty nervous) fro 64 mg of methylprednisolone
Grammy80
in
PMRGCAuk
5 years ago
Actemra Trial Update
This is an interesting article regarding the 2 year follow up of the original Actemra trial. https://apple.news/APxvd6gUCSmeN97URVzEqVg
This is an interesting article regarding the 2 year follow up of the original Actemra trial. https://apple.news/APxvd6gUCSmeN97URVzEqVg
cmgarner
in
PMRGCAuk
5 years ago
Rheumatoid Arthritis & Actemra
Hello everyone I am new here and hope to benefit from people's experience with Actemra and specifically how it affects blood values. My son was diagnosed with Adult-Onset Still's Disease (adult form of JRA) 25 years ago. He had JRA when he was 8 years old and within a year with treatment it went into
Hello everyone I am new here and hope to benefit from people's experience with Actemra and specifically how it affects blood values. My son was diagnosed with Adult-Onset Still's Disease (adult form of JRA) 25 years ago. He had JRA when he was 8 years old and within a year with treatment it went into
paulbasel
in
NRAS
5 years ago
PMR, Actemra, and IgM antibodies
I was diagnosed with PMR about a year and a half ago. Started with methotrexate and plaquenil for a few months, and then started monthly Actemra infusions. I'm pretty much pain free these days, primarily because of the Actemra, I think, and I'm now getting an infusion every two months. Blood tests indicate
I was diagnosed with PMR about a year and a half ago. Started with methotrexate and plaquenil for a few months, and then started monthly Actemra infusions. I'm pretty much pain free these days, primarily because of the Actemra, I think, and I'm now getting an infusion every two months. Blood tests indicate
grandemr
in
PMRGCAuk
5 years ago
Burning discomfort hamstrings
PMR 2016. GCA 10/17. Actemra good results, except mouth sores and frequent upper respiratory infections. Necessary to stop due to breast cancer, 11/18. Lumpectomy, radiation and currently taking Anastrozole(estrogen and progesterone blocker) Feeling well all summer and fall. Tapering gradually Prednisone
PMR 2016. GCA 10/17. Actemra good results, except mouth sores and frequent upper respiratory infections. Necessary to stop due to breast cancer, 11/18. Lumpectomy, radiation and currently taking Anastrozole(estrogen and progesterone blocker) Feeling well all summer and fall. Tapering gradually Prednisone
LCHRISTOP10
in
PMRGCAuk
5 years ago
GCA f/u to ongoing journey.
Rheumatologist was very supportive & reminding me that this is serious disease involving strong drugs. Been to ER twice in past several days. Sed was 9 on Monday & 19 Friday- still normal range but not normal for me. CRP <2.5 on Monday & 37 Friday. So sick Friday from headache, scalp pain, arm, neck,
Rheumatologist was very supportive & reminding me that this is serious disease involving strong drugs. Been to ER twice in past several days. Sed was 9 on Monday & 19 Friday- still normal range but not normal for me. CRP <2.5 on Monday & 37 Friday. So sick Friday from headache, scalp pain, arm, neck,
Spanky2019
in
PMRGCAuk
5 years ago
Advice on RoActemra/tocilizumab infusion
Hi everyone! I'm due to have my first tocilizumab infusion on Tuesday next week and I've got a few boring logistics questions that the hospital didn't really answer for me: 1. Is it true that I should be able to work or read while being infused or is this overly optimistic? 2. How long does it typically
Hi everyone! I'm due to have my first tocilizumab infusion on Tuesday next week and I've got a few boring logistics questions that the hospital didn't really answer for me: 1. Is it true that I should be able to work or read while being infused or is this overly optimistic? 2. How long does it typically
12Chrissy34
in
NRAS
5 years ago
GCA NICE Recommendations UK Tocilizumab
https://www.nice.org.uk/guidance/ta518/chapter/1-Recommendations Paste and Go in your URL For Refractory GCA Patients, your country posted these recommendations for Actemra (Tocilizumab) for GCA. I am a refractory patient. Do not worry. I will not post again or look at comments. However, this
https://www.nice.org.uk/guidance/ta518/chapter/1-Recommendations Paste and Go in your URL For Refractory GCA Patients, your country posted these recommendations for Actemra (Tocilizumab) for GCA. I am a refractory patient. Do not worry. I will not post again or look at comments. However, this
Dream21
in
PMRGCAuk
5 years ago
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