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Severe pain
I also take weekly methotrexate and
Actemra
injections which I don’t think is helping as well as it should but am afraid to start the process of a new medication from scratch again. I’ve already been through humira and enbrel as well neither of which worked for me.
I also take weekly methotrexate and
Actemra
injections which I don’t think is helping as well as it should but am afraid to start the process of a new medication from scratch again. I’ve already been through humira and enbrel as well neither of which worked for me.
Dmcquate88
in
NRAS
6 years ago
Struggling for answers 😞😔
I was diagnoised with GCA last November after a PET Scan starting 60 mg and also with RoActemra injection once weekly. Was doing ok and came down to 8mg and struggling to go down with 7mg so back to 8 and will stay for while. Having neck pains, hip,leg pains today and fatigue quiet bad so had to go
I was diagnoised with GCA last November after a PET Scan starting 60 mg and also with RoActemra injection once weekly. Was doing ok and came down to 8mg and struggling to go down with 7mg so back to 8 and will stay for while. Having neck pains, hip,leg pains today and fatigue quiet bad so had to go
Lucylooloo
in
PMRGCAuk
6 years ago
Hmmm?
"Tocilizumab helps patients achieve better control of this illness and fills what has been an unmet need," says Professor Dasgupta. http://www.dailymail.co.uk/health/article-5935559/New-jab-help-patients-risk-going-blind-common-condition.html <<<<< July 2018 https://www.statnews.com/2017/06/05/
actemra
-rheumatoid-arthritis-fda
"Tocilizumab helps patients achieve better control of this illness and fills what has been an unmet need," says Professor Dasgupta. http://www.dailymail.co.uk/health/article-5935559/New-jab-help-patients-risk-going-blind-common-condition.html <<<<< July 2018 https://www.statnews.com/2017/06/05/
actemra
-rheumatoid-arthritis-fda
Hidden
in
PMRGCAuk
6 years ago
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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 very emotional etc anyway, due to reading on this site I went back to 9 mg I have been much better mentally?
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 very emotional etc anyway, due to reading on this site I went back to 9 mg I have been much better mentally?
Lucylooloo
in
PMRGCAuk
6 years ago
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
PMR, GCA, Fibromyalgia
Now I self administer a shot of
Actemra
every week and take 2 mg. Rayos (Prednisone) a night. Thank you for your reply.
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
Medicare accepted my Actemra infusion claim!
I truly at this point believe that I made the right decision on going on the
Actemra
therapy. Three days after my infusionI was able to drop from 30mgs prednisone to 20mgs. This Sunday I will be able to drop down another 5mgs to 15mgs.
I truly at this point believe that I made the right decision on going on the
Actemra
therapy. Three days after my infusionI was able to drop from 30mgs prednisone to 20mgs. This Sunday I will be able to drop down another 5mgs to 15mgs.
CRW-68
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
First Actemra infusion today
If anyone would be interested I could keep everyone updated on my
Actemra
journey.
If anyone would be interested I could keep everyone updated on my
Actemra
journey.
CRW-68
in
PMRGCAuk
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
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.
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.
pwalker801
in
PMRGCAuk
6 years ago
Tapering duration for GCA and doses of Pred over time ?
unscientifically' - but I am interested in where others at 'at' with their tapering at various points in time say at 1, 2, 3, 4, years or more - stated simply as: I am (for example) taking
15.5mg approx 1.5 years after my diagnosis of GCA
(using no other meds like steroid sparing agents such as
Actemra
unscientifically' - but I am interested in where others at 'at' with their tapering at various points in time say at 1, 2, 3, 4, years or more - stated simply as: I am (for example) taking
15.5mg approx 1.5 years after my diagnosis of GCA
(using no other meds like steroid sparing agents such as
Actemra
Rimmy
in
PMRGCAuk
6 years ago
Day two of raised dose prednisone
Definitely was in a flare because of coming off the
Actemra
. The doc should have told me to go up a little on prednisone when off the
Actemra
. She really should not have taken me off
Actemra
.
Definitely was in a flare because of coming off the
Actemra
. The doc should have told me to go up a little on prednisone when off the
Actemra
. She really should not have taken me off
Actemra
.
Leeleep
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
Suffering severely. Cortisol too low.
I’m staying on 7.5 prednisone and have taken my
Actemra
last week and this week. So I now have to wait a number of weeks for the
Actemra
to start working again, but I think she should be raising my prednisone. I hate the idea of it but I’m getting desperate because I’m so I’ll.
I’m staying on 7.5 prednisone and have taken my
Actemra
last week and this week. So I now have to wait a number of weeks for the
Actemra
to start working again, but I think she should be raising my prednisone. I hate the idea of it but I’m getting desperate because I’m so I’ll.
Leeleep
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.
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.
Lucylooloo
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 am taking
Actemra
injections and prednisone. I recently flared, so I am back up to 5m daily, but now stable and feel good.
Klah
in
PMRGCAuk
6 years ago
Acid reducers
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 over time. I also have osteoporosis.
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 over time. I also have osteoporosis.
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.
history---diagnosed PMR Febr 2018, GCA April 2018, on 55 mg of prednisone, just took my 2nd shot of
Actemra
this morning.
pwalker801
in
PMRGCAuk
6 years ago
Actemra
The rheumatologist wants to start
Actemra
, the preliminary research shows class action law suits and many side effects..... would really appreciate input---thanks
The rheumatologist wants to start
Actemra
, the preliminary research shows class action law suits and many side effects..... would really appreciate input---thanks
pwalker801
in
PMRGCAuk
6 years ago
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