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Steroids/Actemra/Addison’s = GCA
So after 6 years on steroids Actemra finally enabled me to get down to 6.5. Started August 2017 once a week. No reaction. Inflammation immediately dropped. CRP and ESR almost none existent. Recently went to every Other week and blood markers still down no change. I am now going to wait a third week
So after 6 years on steroids Actemra finally enabled me to get down to 6.5. Started August 2017 once a week. No reaction. Inflammation immediately dropped. CRP and ESR almost none existent. Recently went to every Other week and blood markers still down no change. I am now going to wait a third week
Nap1
in
PMRGCAuk
6 years ago
ACTEMRA Update
I tried. Unfortunately it is not the answer for me. As I am writing this I am itching all over, no energy and coughing. My last blood test my ESR has gone up to 26. I think it has gone up more now the way I feel. Is it possible to manage this disease without a rhumy? With all the information and
I tried. Unfortunately it is not the answer for me. As I am writing this I am itching all over, no energy and coughing. My last blood test my ESR has gone up to 26. I think it has gone up more now the way I feel. Is it possible to manage this disease without a rhumy? With all the information and
shazstep
in
PMRGCAuk
6 years ago
PolyBursitis Rheumatica & Bacon Sandwiches
Hello everyone, Had my 2 month visit with my Rheumatologist last week. My first question was what exactly happens in the body with PMR? She said PMR is really not a good name for this disorder because the inflammation affects the bursa, the small fluid-filled sacs that cushion joints. Then I asked
Hello everyone, Had my 2 month visit with my Rheumatologist last week. My first question was what exactly happens in the body with PMR? She said PMR is really not a good name for this disorder because the inflammation affects the bursa, the small fluid-filled sacs that cushion joints. Then I asked
Marie1479
in
PMRGCAuk
6 years ago
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Things are looking up
I went to the dr this week. My numbers are in the normal range. Happy me . I didn't even mention Rochester and neither did he. I am now at 20mg. I know it doesn't seem like a change but it is. I was up to 25 then 221/2 then 20 . This week I am going to try 18. With dr ok. Then a 10% reduction. I think
I went to the dr this week. My numbers are in the normal range. Happy me . I didn't even mention Rochester and neither did he. I am now at 20mg. I know it doesn't seem like a change but it is. I was up to 25 then 221/2 then 20 . This week I am going to try 18. With dr ok. Then a 10% reduction. I think
mngirl
in
PMRGCAuk
6 years ago
Salumibab
At a recent scheduled appointment I had a new rheumatologist. He seemed excellent and listened to my woes about my recently diagnosed fibromyalgia, which is impacting very badly on my life. He then was looking at the plan to put me on Actemra, and said that this other new drug called Salumibab was actually
At a recent scheduled appointment I had a new rheumatologist. He seemed excellent and listened to my woes about my recently diagnosed fibromyalgia, which is impacting very badly on my life. He then was looking at the plan to put me on Actemra, and said that this other new drug called Salumibab was actually
venezia1
in
PMRGCAuk
6 years ago
Actemra
Actemra has been really keeping my pain tolerable, however I needed a crown and was advised to discontinue my weekly shot two weeks prior to procedure. That was on February 26. I’m still off because the crown is not back from lab. I’m struggling severely with pain the last two days. This certainly
Actemra has been really keeping my pain tolerable, however I needed a crown and was advised to discontinue my weekly shot two weeks prior to procedure. That was on February 26. I’m still off because the crown is not back from lab. I’m struggling severely with pain the last two days. This certainly
Leeleep
in
PMRGCAuk
6 years ago
Actemra Update
Things were going so well with the Actemra. A headache one day a week I was handling. Why have things gone so wrong????? I have been back on preds for the last week. No Actemra until next week and I come off preds again. My body was itching all over and I came out in a rash. That part is over now
Things were going so well with the Actemra. A headache one day a week I was handling. Why have things gone so wrong????? I have been back on preds for the last week. No Actemra until next week and I come off preds again. My body was itching all over and I came out in a rash. That part is over now
shazstep
in
PMRGCAuk
6 years ago
For the moment, Prednisone free!
The latest update on my Mom. She is a week of being Prednisone Free. THAT was one very long taper ( 1 year, 8 months ) which was very close to her Doctors thoughts that it would be about 2 years. Mom continues to receive the Actemra infusions every month, and at this point we are all unsure as to when
The latest update on my Mom. She is a week of being Prednisone Free. THAT was one very long taper ( 1 year, 8 months ) which was very close to her Doctors thoughts that it would be about 2 years. Mom continues to receive the Actemra infusions every month, and at this point we are all unsure as to when
Joyismami
in
PMRGCAuk
6 years ago
Actemra side effects
Not sure if I am suffering side effects from Actemra. The last few days I have been itchy all over the body, also had symptoms similar to coming down with the flu. I saw a gp this morning and he said it was an allergy and no injection until I feel better. I wonder what side effects there are not having
Not sure if I am suffering side effects from Actemra. The last few days I have been itchy all over the body, also had symptoms similar to coming down with the flu. I saw a gp this morning and he said it was an allergy and no injection until I feel better. I wonder what side effects there are not having
shazstep
in
PMRGCAuk
6 years ago
3rd injection of ACTEMRA
So far I don’t see any difference in pain level. Noticed small sores in my mouth a lip feels a little swollen has anyone else Experienced this?
So far I don’t see any difference in pain level. Noticed small sores in my mouth a lip feels a little swollen has anyone else Experienced this?
mpl615
in
PMRGCAuk
6 years ago
I'll Have What She's Having...
I'm not saying I will ever be approved for ACTEMRA; or that I believe it's the "end all, do all," panacea for complicated GCA cases (Hell, I don't even know if I am a "complicated" GCA Case, but it sure feels like I am!) ...however after everything I've read and after talking to people in the USA who
I'm not saying I will ever be approved for ACTEMRA; or that I believe it's the "end all, do all," panacea for complicated GCA cases (Hell, I don't even know if I am a "complicated" GCA Case, but it sure feels like I am!) ...however after everything I've read and after talking to people in the USA who
Hidden
in
PMRGCAuk
6 years ago
Actemra Update
So far I have had 5 injections weekly. At over $200 it is not cheap, however I am off steroids and able to do things. I am slowly building my muscles back up. I was so depressed on steroids and I just could not handle all the side effects. I have noticed just one side effect with the Actemra. I have
So far I have had 5 injections weekly. At over $200 it is not cheap, however I am off steroids and able to do things. I am slowly building my muscles back up. I was so depressed on steroids and I just could not handle all the side effects. I have noticed just one side effect with the Actemra. I have
shazstep
in
PMRGCAuk
6 years ago
New to GCA at age 50
Hi all, I live in Taiwan, born in Holland, and was diagnosed this January, on my 50th birthday with GCA. I am at the low point of my steroid taper, trying to do the impossible by keeping only 2.5mg steroids per day, combined with the unaffordable Actemra shots, first 2 shots in Feb, now every month,
Hi all, I live in Taiwan, born in Holland, and was diagnosed this January, on my 50th birthday with GCA. I am at the low point of my steroid taper, trying to do the impossible by keeping only 2.5mg steroids per day, combined with the unaffordable Actemra shots, first 2 shots in Feb, now every month,
Hidden
in
PMRGCAuk
6 years ago
NEW to this site
Started Actemra injection last Friday is any else on this drug for the treatment of PMR? How is it working for you? any side effects? I also suffer from IBS and had a flair up a couple of days after taking the drug. I was on Embrel and Prednisone and then stopped the prednisone due to the side effects
Started Actemra injection last Friday is any else on this drug for the treatment of PMR? How is it working for you? any side effects? I also suffer from IBS and had a flair up a couple of days after taking the drug. I was on Embrel and Prednisone and then stopped the prednisone due to the side effects
mpl615
in
PMRGCAuk
6 years ago
Severe muscle pain strains sprains and weakness
So I have been on 6.5 mg for a month now and Actemra every 10 days. The muscle problems are out of hand I bought a walker but can’t use it too much. Developed spur between toes aside from neck shoulder arms, knees and back. Cortisol is at level 1. My New Jersey rheumatologist suggesting going up to
So I have been on 6.5 mg for a month now and Actemra every 10 days. The muscle problems are out of hand I bought a walker but can’t use it too much. Developed spur between toes aside from neck shoulder arms, knees and back. Cortisol is at level 1. My New Jersey rheumatologist suggesting going up to
Nap1
in
PMRGCAuk
6 years ago
Weight gain on Tocilizumab / Actemra
Having a terrible time right now with body confidence. Only trying to lose a stone or half a stone. This used to be so easy for me!!!! Fed up of my joints being in pain and the doctors suggesting I lose weight to take the pressure of my knees but I am unable to exercise at the moment, I live in Scotland
Having a terrible time right now with body confidence. Only trying to lose a stone or half a stone. This used to be so easy for me!!!! Fed up of my joints being in pain and the doctors suggesting I lose weight to take the pressure of my knees but I am unable to exercise at the moment, I live in Scotland
AmyDee207
in
NRAS
6 years ago
Methotrexate for GCA
Does anyone take methotrexate for GCA? I was on prednisone for 2 1/2 years. My new Dr. wanted me off of it so I took methotrexate along with the prednisone. I am off of the prednisone for 8 weeks now. I was going to start actemra but decided against it after reading it could cause holes in the stomach
Does anyone take methotrexate for GCA? I was on prednisone for 2 1/2 years. My new Dr. wanted me off of it so I took methotrexate along with the prednisone. I am off of the prednisone for 8 weeks now. I was going to start actemra but decided against it after reading it could cause holes in the stomach
bonnielm1
in
PMRGCAuk
6 years ago
Another detour
Hi all, I took the plunge and started Actemra in January (PMR in 2011, then GCA in May 2018). As I started tapering the Prednisone my resting heart rate increased. For several weeks I blamed it on Pred withdrawal. Then could feel it pounding in my chest and swishing in my ears. Made it tough to sleep
Hi all, I took the plunge and started Actemra in January (PMR in 2011, then GCA in May 2018). As I started tapering the Prednisone my resting heart rate increased. For several weeks I blamed it on Pred withdrawal. Then could feel it pounding in my chest and swishing in my ears. Made it tough to sleep
PMR2011
in
PMRGCAuk
6 years ago
Websites - useful stuff, articles, resources
Articles on Tocilizumab (Actemra) https://www.nice.org.uk/guidance/TA518 An Efficacy and Safety Study of Tocilizumab (
RoActemra
/Actemra) in Participants with Giant Cell Arteritis (GCA) https://clinicaltrials.gov/ct2/show/results/NCT01791153?
Articles on Tocilizumab (Actemra) https://www.nice.org.uk/guidance/TA518 An Efficacy and Safety Study of Tocilizumab (
RoActemra
/Actemra) in Participants with Giant Cell Arteritis (GCA) https://clinicaltrials.gov/ct2/show/results/NCT01791153?
Insight329
in
PMRGCAuk
6 years ago
Anyone else on Actemra for PMR?
After two and a half years of trying to reduce pred doseage for PRM (I’m 72 and have osteoporosis) my rheumatologist got me approved for Actemra. Before adding Actemra, I couldn’t get below 10 mg pred daily (along with weekly methotrdxate) without a flare. I began monthly Actemra infusions in August
After two and a half years of trying to reduce pred doseage for PRM (I’m 72 and have osteoporosis) my rheumatologist got me approved for Actemra. Before adding Actemra, I couldn’t get below 10 mg pred daily (along with weekly methotrdxate) without a flare. I began monthly Actemra infusions in August
Terry615
in
PMRGCAuk
6 years ago
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