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Actemra
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gca&actemra&steroid myopathy
Need to message PMRpro. Story too long. Pro is familiar. I go back almost 10 years. How can I do this. Or. Can pro contact me. Thanks
Need to message PMRpro. Story too long. Pro is familiar. I go back almost 10 years. How can I do this. Or. Can pro contact me. Thanks
Nap1
in
PMRGCAuk
10 months ago
First Biologic Drug Approved for PMR
Ot acts like
Actemra
, which is only approved for GCA. At this point, it is approved in the United States. Hopefully other countries will follow.
Ot acts like
Actemra
, which is only approved for GCA. At this point, it is approved in the United States. Hopefully other countries will follow.
Knit11
in
PMRGCAuk
1 year ago
Numbness in both feet
Numbness in both feet for the last 7 months....started prednisone about a year ago,
Actemra
weekly injection 13 weeks...are the numb feet due to prednisone or something else...glucose in the morning is about 100...taking glipzide for sugar, zedia and repatha for high cholesteral due to
Actemra
...I have
Numbness in both feet for the last 7 months....started prednisone about a year ago,
Actemra
weekly injection 13 weeks...are the numb feet due to prednisone or something else...glucose in the morning is about 100...taking glipzide for sugar, zedia and repatha for high cholesteral due to
Actemra
...I have
Joseph14612
in
PMRGCAuk
1 year ago
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Returning temporal headaches after stopping Tocilizumab, what to do ?
Headaches *never* really went away. 13 months ago, I was put on Tocilizumab (
Actemra
) but only for 12 months. Although Tocilizumab is supposed to be a "steroid sparing agent" I was told to carry on as usual with the dose and taper of Prednisolone.
Headaches *never* really went away. 13 months ago, I was put on Tocilizumab (
Actemra
) but only for 12 months. Although Tocilizumab is supposed to be a "steroid sparing agent" I was told to carry on as usual with the dose and taper of Prednisolone.
ghost123uk
in
PMRGCAuk
22 days ago
RoActemra
Does anyone know when the Patent for RoActemra (Tocilizumab) expires. The NHS will currently only pay for one year of injections. Current private costs is approx £250 per syringe. Once expired the price will go down
Does anyone know when the Patent for RoActemra (Tocilizumab) expires. The NHS will currently only pay for one year of injections. Current private costs is approx £250 per syringe. Once expired the price will go down
Niblick
in
PMRGCAuk
5 months ago
Reducing prednisone to zero
I believe the reason I have been able to reduce so low is due to the infusions of
Actemra
, which I started in October. For the last several months I had been reducing 1/2 mg of prednisone every three to four weeks. I do not have body pain unless I do too much yard work.
I believe the reason I have been able to reduce so low is due to the infusions of
Actemra
, which I started in October. For the last several months I had been reducing 1/2 mg of prednisone every three to four weeks. I do not have body pain unless I do too much yard work.
Plains
in
PMRGCAuk
1 year ago
Same old question - withdrawal or flare?
I'd got down to 7mgs with the aid of
Actemra
(6 months) then two weeks on that dose the pains crept in. Rheumy insisted it couldn't be a flare even though ESR had raised from 2 to 18 in 6 weeks which is nowhere near my own 'normal' level despite her insisting it was absolutely normal.
I'd got down to 7mgs with the aid of
Actemra
(6 months) then two weeks on that dose the pains crept in. Rheumy insisted it couldn't be a flare even though ESR had raised from 2 to 18 in 6 weeks which is nowhere near my own 'normal' level despite her insisting it was absolutely normal.
strawclutching
in
PMRGCAuk
1 year ago
Actemra problems.
Does anyone have sight problems with
Actemra
? I am having trouble now with giving him his shots...which he doesn't want to take. What to do?
Does anyone have sight problems with
Actemra
? I am having trouble now with giving him his shots...which he doesn't want to take. What to do?
Wilson1952
in
PMRGCAuk
1 year ago
Stopping Actemra
What happens if you decide to stop taking
Actemra
?? Do you have flares and them have to take more prednisone?? I have to have a hip replacement and my surgeon is worried about an infection as this could be really dangerous for me.
What happens if you decide to stop taking
Actemra
?? Do you have flares and them have to take more prednisone?? I have to have a hip replacement and my surgeon is worried about an infection as this could be really dangerous for me.
calicojoy41
in
PMRGCAuk
1 year ago
PREDNISONE TAPERING WITH ACTEMRA
Now I’m at 10 mg prednisone and am just starting
Actemra
. My question is how fast can I taper prednisone with
Actemra
? PS: I feel like the PMR never came back though. I had no PMR symptoms this time around. Would that be possible?
Now I’m at 10 mg prednisone and am just starting
Actemra
. My question is how fast can I taper prednisone with
Actemra
? PS: I feel like the PMR never came back though. I had no PMR symptoms this time around. Would that be possible?
Pamk1949
in
PMRGCAuk
1 year ago
Actemra IV?
Has anybody ever had an
Actemra
IV to help with their PMR?
Has anybody ever had an
Actemra
IV to help with their PMR?
A77bruin
in
PMRGCAuk
1 year ago
Two weeks since start of flare & still in pain
I'd got down to 7mgs of Pred with the aid of
Actemra
(started 5 months ago). After 2 weeks on 7mgs, pains returned - same pattern & symptoms as first flare. ESR had jumped from 2 to 17 between December and February. Rheumy said to stick with the taper, pains could be something else.
I'd got down to 7mgs of Pred with the aid of
Actemra
(started 5 months ago). After 2 weeks on 7mgs, pains returned - same pattern & symptoms as first flare. ESR had jumped from 2 to 17 between December and February. Rheumy said to stick with the taper, pains could be something else.
strawclutching
in
PMRGCAuk
1 year ago
GCA and Ocular TIA (mini stroke)??
I was diagnosed with GCA four and a half years ago , am on my third relapse and am tapering (now 10mg prednisolone and weekly
Actemra
).
I was diagnosed with GCA four and a half years ago , am on my third relapse and am tapering (now 10mg prednisolone and weekly
Actemra
).
JulietPotion
in
PMRGCAuk
2 months ago
Repatha
I am already on a biologic,
Actemra
that I inject weekly. Thank you in advance for any insight to this drug. Peggy
I am already on a biologic,
Actemra
that I inject weekly. Thank you in advance for any insight to this drug. Peggy
pmac22
in
Cholesterol Support
1 year ago
Drug trial for GCA
I am currently on
Actemra
which is an IL-6 inhibitor. Luckily, it seems like there is an increased interest in finding solutions for GCA/PMR. Here is an article I recently came across. https://www.medscape.com/viewarticle/963473
I am currently on
Actemra
which is an IL-6 inhibitor. Luckily, it seems like there is an increased interest in finding solutions for GCA/PMR. Here is an article I recently came across. https://www.medscape.com/viewarticle/963473
Jumpe
in
PMRGCAuk
1 year ago
Cost of tocilizumab (2)
Thank you to everyone who responded to my first post a couple of months ago, regarding an extension to TCZ. An update for you….. As suggested by Lemonzest I’ve exchanged a few emails with Roche UK, and here’s their response: “I have discussed your query with our Medical Affairs team and they have
Thank you to everyone who responded to my first post a couple of months ago, regarding an extension to TCZ. An update for you….. As suggested by Lemonzest I’ve exchanged a few emails with Roche UK, and here’s their response: “I have discussed your query with our Medical Affairs team and they have
Duncoding
in
PMRGCAuk
6 months ago
Stick where I am or increase?
I was expecting inflammation markers to stay down on
Actemra
, or is 4 months on it too soon to expect this?
I was expecting inflammation markers to stay down on
Actemra
, or is 4 months on it too soon to expect this?
strawclutching
in
PMRGCAuk
1 year ago
weight gain after stopping prednisone?
Did 5 monthly
Actemra
infusions but they didn’t make any difference. Went back on prednisone September 2022, 15 mg for a couple of months. Worst symptoms of shoulder pain were mollified and my rheumy had me taper 1mg/week.
Did 5 monthly
Actemra
infusions but they didn’t make any difference. Went back on prednisone September 2022, 15 mg for a couple of months. Worst symptoms of shoulder pain were mollified and my rheumy had me taper 1mg/week.
mppk
in
PMRGCAuk
1 year ago
Adrenals are working!
Now I just have to keep fingers crossed that
Actemra
is doing its job. Has anyone here tapered off or in the process of tapering off hydrocortisone. I know it’s not the end of GCA but I’m pretty excited. Peggy
Now I just have to keep fingers crossed that
Actemra
is doing its job. Has anyone here tapered off or in the process of tapering off hydrocortisone. I know it’s not the end of GCA but I’m pretty excited. Peggy
pmac22
in
PMRGCAuk
1 year ago
Actemra and low WBC(1.9) and low Immunoglobulin levels. Asking for your thoughts.
Called rheumatologist to see if I should cease taking
Actemra
as I had read Actemtra can cause neutropenia. Her nurse called yesterday to say doctor did not think low levels from
Actemra
/ prednisone, and follow up with GP.
Called rheumatologist to see if I should cease taking
Actemra
as I had read Actemtra can cause neutropenia. Her nurse called yesterday to say doctor did not think low levels from
Actemra
/ prednisone, and follow up with GP.
Elephants2019
in
PMRGCAuk
1 year ago
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