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RoActemra
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What other meds can I try?
I’m currently taking Actemra and Otrexup both by injection once a week and have been doing so for about 2 years now. I have been having severe pain and extreme swelling in both of my knees for the past two months ever since I had to discontinue temporarily due to having a full right hip replacement as
I’m currently taking Actemra and Otrexup both by injection once a week and have been doing so for about 2 years now. I have been having severe pain and extreme swelling in both of my knees for the past two months ever since I had to discontinue temporarily due to having a full right hip replacement as
Dmcquate88
in
NRAS
6 years ago
Actemra update
I haven't written or even read much on here for a while. There was a perfect storm, coming from all directions, for a depression to set in. I was completely dysfunctional, any little thing made me cry or rage and I could not concentrate on anything. I'm better now, I've talked myself out of the depression
I haven't written or even read much on here for a while. There was a perfect storm, coming from all directions, for a depression to set in. I was completely dysfunctional, any little thing made me cry or rage and I could not concentrate on anything. I'm better now, I've talked myself out of the depression
Gaijin
in
PMRGCAuk
6 years ago
Chest infection
😩 I ve had a bad enough chest infection for around two weeks now, waking up at night with palpatitions in my heart think it’s the chest infection. Anyway I have GCA since November 2017 also started injections in early February Actemra. All was going well until I went down to 8 Mg steroids it was freaky
😩 I ve had a bad enough chest infection for around two weeks now, waking up at night with palpatitions in my heart think it’s the chest infection. Anyway I have GCA since November 2017 also started injections in early February Actemra. All was going well until I went down to 8 Mg steroids it was freaky
Lucylooloo
in
PMRGCAuk
6 years ago
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GCA, Actemra and feeling exhausted
I have been so much better since taking Tocilizumab but I still get days of aching all over and feeling really exhausted. I am really not my old self and wonder if I ever will be . My husband and I are looking after an 11 month grandchild which means a 2 1/2 hr journey each way in the rush hour - leaving
I have been so much better since taking Tocilizumab but I still get days of aching all over and feeling really exhausted. I am really not my old self and wonder if I ever will be . My husband and I are looking after an 11 month grandchild which means a 2 1/2 hr journey each way in the rush hour - leaving
christine2715
in
PMRGCAuk
6 years ago
Tapering duration for GCA and doses of Pred over time ?
I am probably asking a difficult question - but I am wondering if any research exists about the duration of tapering and 'average' effective doses of Pred at various points in time - and please let me know if this exists - especially our 'experts' here !!?? I have expressed this rather 'unscientifically
I am probably asking a difficult question - but I am wondering if any research exists about the duration of tapering and 'average' effective doses of Pred at various points in time - and please let me know if this exists - especially our 'experts' here !!?? I have expressed this rather 'unscientifically
Rimmy
in
PMRGCAuk
6 years ago
Medicare accepted my Actemra infusion claim!
Yeah, it is a good day. My Medicare part B accepted 100 %of my Actemra infusion claim. They paid everything but a little over $800, so my secondary which is AARP plan F will pay the rest. It has been two weeks now since my first infusion and so far I have not had any problems. I truly at this point
Yeah, it is a good day. My Medicare part B accepted 100 %of my Actemra infusion claim. They paid everything but a little over $800, so my secondary which is AARP plan F will pay the rest. It has been two weeks now since my first infusion and so far I have not had any problems. I truly at this point
CRW-68
in
PMRGCAuk
6 years ago
PMR, GCA, Fibromyalgia
Hi...Is there anyone who has these illnesses? Can you tell me how you cope or your experiences? Struggle with extreme fatigue. I am at the 2 year mark. I started with 60mg Prednisone. Now I self administer a shot of Actemra every week and take 2 mg. Rayos (Prednisone) a night. Thank you for your reply
Hi...Is there anyone who has these illnesses? Can you tell me how you cope or your experiences? Struggle with extreme fatigue. I am at the 2 year mark. I started with 60mg Prednisone. Now I self administer a shot of Actemra every week and take 2 mg. Rayos (Prednisone) a night. Thank you for your reply
Dream21
in
PMRGCAuk
6 years ago
I give up!!!!!!! discouraged
sooooooooooo----Prednisone, GCA and Actemra all thave dizziness and lightheaded, as a side effect, then throw in PMR and fatigue, no wonder I feel like awful most of the time. ---I'm currently at 50 mg, and if I only decrease 5 mg a month it will take me forever to get low enough to get rid of these
sooooooooooo----Prednisone, GCA and Actemra all thave dizziness and lightheaded, as a side effect, then throw in PMR and fatigue, no wonder I feel like awful most of the time. ---I'm currently at 50 mg, and if I only decrease 5 mg a month it will take me forever to get low enough to get rid of these
pwalker801
in
PMRGCAuk
6 years ago
actemra
Diagnosed with PMR late Febr 2018 & GCA in April--currently taking 50 mg of prednisone daily. Started on Acterma injections, have had 4 infections, my question is for 2 days after each injection I'm very lightheaded, dizzy and fatigued. Is anyone else experiencing this, and has your body eventually
Diagnosed with PMR late Febr 2018 & GCA in April--currently taking 50 mg of prednisone daily. Started on Acterma injections, have had 4 infections, my question is for 2 days after each injection I'm very lightheaded, dizzy and fatigued. Is anyone else experiencing this, and has your body eventually
pwalker801
in
PMRGCAuk
6 years ago
Today's the day!
We don't know whether the teddy bears are having their picnic, but the NICE guidance for the use of tocilizumab (
Roactemra
) are published this morning on the NICE website. https://www.nice.org.uk/guidance/TA518 Criteria are tight, as we expected, but it's a start.
We don't know whether the teddy bears are having their picnic, but the NICE guidance for the use of tocilizumab (
Roactemra
) are published this morning on the NICE website. https://www.nice.org.uk/guidance/TA518 Criteria are tight, as we expected, but it's a start.
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
6 years ago
The beauty of the right treatment
After starting treatment with
RoActemra
I now have the use of my hands back. Loving my new hobby 😊
After starting treatment with
RoActemra
I now have the use of my hands back. Loving my new hobby 😊
Hidden
in
NRAS
6 years ago
Actemra update
After re-reading my Rheumatologist’s chart note I need to correct my tritration schedule that I posted earlier. So here goes. I am currently on 30 mgs of Prednisone. This Sunday I drop 10 mgs to 20 mgs for two weeks. I then drop down to 15 mgs for another two weeks. I will then have my appointment
After re-reading my Rheumatologist’s chart note I need to correct my tritration schedule that I posted earlier. So here goes. I am currently on 30 mgs of Prednisone. This Sunday I drop 10 mgs to 20 mgs for two weeks. I then drop down to 15 mgs for another two weeks. I will then have my appointment
CRW-68
in
PMRGCAuk
6 years ago
First Actemra infusion update
I made it! From beginning to end I was at the infusion center for 3 1/2 hours. All went very smoothly and without any reactions. I am now thankfully on track to reiterate down 10 mgs this Sunday, and if all continues to go well, another 10 mgs in another 2 weeks. My schedule had been to reiterate
I made it! From beginning to end I was at the infusion center for 3 1/2 hours. All went very smoothly and without any reactions. I am now thankfully on track to reiterate down 10 mgs this Sunday, and if all continues to go well, another 10 mgs in another 2 weeks. My schedule had been to reiterate
CRW-68
in
PMRGCAuk
6 years ago
First Actemra infusion today
A bit nervous, today I will be having my first Actemra infusion. In January I started on 60 mg of prednisone, am down to 30 mg currently. My Rheumatologist wants me to start the Actemra so I can titrate off of the prednisone faster due to my experiencing so many negative side effects from prednisone
A bit nervous, today I will be having my first Actemra infusion. In January I started on 60 mg of prednisone, am down to 30 mg currently. My Rheumatologist wants me to start the Actemra so I can titrate off of the prednisone faster due to my experiencing so many negative side effects from prednisone
CRW-68
in
PMRGCAuk
6 years ago
Emotional and getting muscle spasms
Hi I was just wondering if when tapering down (came from 60mg now at 8mg, also am on 162 Actemra weekly) came down to 8mg last Friday. I am finding I am fearce emotional 😩😪 also am getting muscle spasam inside my body they don’t last long but can be uncomfortable. I found today that I got headaces
Hi I was just wondering if when tapering down (came from 60mg now at 8mg, also am on 162 Actemra weekly) came down to 8mg last Friday. I am finding I am fearce emotional 😩😪 also am getting muscle spasam inside my body they don’t last long but can be uncomfortable. I found today that I got headaces
Lucylooloo
in
PMRGCAuk
6 years ago
Day two of raised dose prednisone
Yesterday I was looking for input on my situation. I’m doing much better today. I raised my prednisone 5 mgs and I’m not suffering today. I did wake up very sore but so far no headache and pain has eased up. Definitely was in a flare because of coming off the Actemra. The doc should have told me
Yesterday I was looking for input on my situation. I’m doing much better today. I raised my prednisone 5 mgs and I’m not suffering today. I did wake up very sore but so far no headache and pain has eased up. Definitely was in a flare because of coming off the Actemra. The doc should have told me
Leeleep
in
PMRGCAuk
6 years ago
Suffering severely. Cortisol too low.
I posted last around three months ago and asked about members who might be taking supplements to help restore cortisol levels. I never did see a functional MD. I have gotten much worse. However, I had a crown replaced and oral surgery to remove a molar. I was given instructions from rheumatologist
I posted last around three months ago and asked about members who might be taking supplements to help restore cortisol levels. I never did see a functional MD. I have gotten much worse. However, I had a crown replaced and oral surgery to remove a molar. I was given instructions from rheumatologist
Leeleep
in
PMRGCAuk
6 years ago
More Prednisone or Less Activity🤔
I am taking Actemra injections and prednisone. I recently flared, so I am back up to 5m daily, but now stable and feel good. I have been at this long enough to know that I could curtail a lot of my activity and continue the slow taper....but I would rather do all the activity and stay at 5m.....cannot
I am taking Actemra injections and prednisone. I recently flared, so I am back up to 5m daily, but now stable and feel good. I have been at this long enough to know that I could curtail a lot of my activity and continue the slow taper....but I would rather do all the activity and stay at 5m.....cannot
Klah
in
PMRGCAuk
6 years ago
Acid reducers
What about stomach issues while on prednisone? On Actemra? Anyone taking acid controllers such as proton pump inhibitors or h2-2 inhibitors? My rheumy and my gp feel I should be on one. Starting to have a few twinges of pain. I understand they block nutrient absorption and even contribute to fractures
What about stomach issues while on prednisone? On Actemra? Anyone taking acid controllers such as proton pump inhibitors or h2-2 inhibitors? My rheumy and my gp feel I should be on one. Starting to have a few twinges of pain. I understand they block nutrient absorption and even contribute to fractures
gtate1914
in
PMRGCAuk
6 years ago
groin pull
history---diagnosed PMR Febr 2018, GCA April 2018, on 55 mg of prednisone, just took my 2nd shot of Actemra this morning. My question is I feel like I have a groin pull, haven't done any exercises or anything because of the fatigue, this just came on suddenly, hurts to walk, even have somewhat of a
history---diagnosed PMR Febr 2018, GCA April 2018, on 55 mg of prednisone, just took my 2nd shot of Actemra this morning. My question is I feel like I have a groin pull, haven't done any exercises or anything because of the fatigue, this just came on suddenly, hurts to walk, even have somewhat of a
pwalker801
in
PMRGCAuk
6 years ago
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