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RoActemra
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Curly hair?
Right now, my memory is not my strong suit~~~but I think I have been on Actemra injections weekly for about three months for GCA, along with Medrol. My hair has gotten a bit thinner, not too bad, but quite curly, ringlets. I was just curious if anyone else had experienced this? Finally, yesterday I
Right now, my memory is not my strong suit~~~but I think I have been on Actemra injections weekly for about three months for GCA, along with Medrol. My hair has gotten a bit thinner, not too bad, but quite curly, ringlets. I was just curious if anyone else had experienced this? Finally, yesterday I
Grammy80
in
PMRGCAuk
4 years ago
Question about actemra
On 4th week (1 autoinject shot/ wk) of actemra. Treated for gca for nearly a year. I have other diseases including osteoporosis, multiple gastro problems. Been at 80 mg a couple of times during this journey. Tapering down and just went to 15 mg prednisone. I've just (woke this morning with it) developed
On 4th week (1 autoinject shot/ wk) of actemra. Treated for gca for nearly a year. I have other diseases including osteoporosis, multiple gastro problems. Been at 80 mg a couple of times during this journey. Tapering down and just went to 15 mg prednisone. I've just (woke this morning with it) developed
Spanky2019
in
PMRGCAuk
4 years ago
Adrenal Fatigue
I had a specialty lab test done through a holistic doc office. I saw one of the nurse practitioners and I was not given much help. My regular NP was away. These labs are more. explicit then the traditional , I believe but maybe I would of got them from an endocrinologist too. My pregnenalone is
I had a specialty lab test done through a holistic doc office. I saw one of the nurse practitioners and I was not given much help. My regular NP was away. These labs are more. explicit then the traditional , I believe but maybe I would of got them from an endocrinologist too. My pregnenalone is
Aleish
in
PMRGCAuk
4 years ago
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Anyone have experience with Actemra?
I have been reading about this drug and looking for input from anyone with GCA using it.
I have been reading about this drug and looking for input from anyone with GCA using it.
Luciejc
in
PMRGCAuk
4 years ago
Actemra taper
I know that this is a little premature as I still have a long way to go tapering my Prednisone, but does anyone have info on tapering Actemra.
I know that this is a little premature as I still have a long way to go tapering my Prednisone, but does anyone have info on tapering Actemra.
Blackcatlover
in
PMRGCAuk
4 years ago
Cold tingling feet with Prednisone and Actemra? (GCA)
Hello, has anyone experienced tingling feet while on prednisone? I mentioned the tingling to my rheumatologist last July, but he didn’t think it was prednisone related. I was on 50 mg prednisone at the time. I am currently on Actemra since late October and doing the DSNS taper protocol - on 8mg trying
Hello, has anyone experienced tingling feet while on prednisone? I mentioned the tingling to my rheumatologist last July, but he didn’t think it was prednisone related. I was on 50 mg prednisone at the time. I am currently on Actemra since late October and doing the DSNS taper protocol - on 8mg trying
GratefulBailey
in
PMRGCAuk
4 years ago
Taper
What is the dead slow and stop method. I am new to this site. I have had P M R for three years with four flares. Now on 4mg of Actemra and wonder how I taper. My numbers have been good for four months now. I am so impressed with your knowledge as well as your ability to communicate. Any help would be
What is the dead slow and stop method. I am new to this site. I have had P M R for three years with four flares. Now on 4mg of Actemra and wonder how I taper. My numbers have been good for four months now. I am so impressed with your knowledge as well as your ability to communicate. Any help would be
Blackcatlover
in
PMRGCAuk
4 years ago
On Actemra and 8mg Prednisone....trouble with tapering. Please help!
I started Actemra at the end of October and was on 10mg Prednisone. I was able to taper to 8 mg with good results - first few days of reduction was tough (dull headache, nausea, fatigue) but rallied after that. I have tried to taper to 7.5 three times now; the first time, I lasted 3 days because of a
I started Actemra at the end of October and was on 10mg Prednisone. I was able to taper to 8 mg with good results - first few days of reduction was tough (dull headache, nausea, fatigue) but rallied after that. I have tried to taper to 7.5 three times now; the first time, I lasted 3 days because of a
GratefulBailey
in
PMRGCAuk
4 years ago
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
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
5 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
5 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
5 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
5 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
5 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
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