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Actemra
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Reducing Pred with additional medication
I spoke to my very nice sensible rheumy this morning who suggested the possibility of adding another medication - Methotrexate, Leflunomide or Tocilizumab (
Actemra
) which I was told is only offered for 1 year and 50% of patients relapse once discontinued.
I spoke to my very nice sensible rheumy this morning who suggested the possibility of adding another medication - Methotrexate, Leflunomide or Tocilizumab (
Actemra
) which I was told is only offered for 1 year and 50% of patients relapse once discontinued.
notsoperfect
in
PMRGCAuk
6 days ago
Immunosuppressed on Actemra???
Does anyone know if being on
Actemra
puts you more or less at risk of covid complications? I had one doctor tell me I was actually safer on
Actemra
bc it is being used as a treatment for Covid. And, anyone know if
Actemra
affects our ability to mount an immune response to vaccines?
Does anyone know if being on
Actemra
puts you more or less at risk of covid complications? I had one doctor tell me I was actually safer on
Actemra
bc it is being used as a treatment for Covid. And, anyone know if
Actemra
affects our ability to mount an immune response to vaccines?
emmamom
in
PMRGCAuk
1 year ago
Stop Actemra for good?
Have had about a year of monthly
Actemra
infusions (monthly infusions not weekly shots). I don’t feel different after them. Why shouldn’t I stop taking them? I still have some heaviness in arms/legs and some minor pains on occasion. Just wonder if they are still needed.
Have had about a year of monthly
Actemra
infusions (monthly infusions not weekly shots). I don’t feel different after them. Why shouldn’t I stop taking them? I still have some heaviness in arms/legs and some minor pains on occasion. Just wonder if they are still needed.
Greytree
in
PMRGCAuk
1 year ago
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Tapering
I am in the US, started at 60 mg prednisone last summer 2022, 20 weeks of
Actemra
for PMR/GCA, and many back up and down tapering ...and after 8 days of headache at 16 mg, headache went away and I started 15 mg today. Is this what I am to expect going forward?
I am in the US, started at 60 mg prednisone last summer 2022, 20 weeks of
Actemra
for PMR/GCA, and many back up and down tapering ...and after 8 days of headache at 16 mg, headache went away and I started 15 mg today. Is this what I am to expect going forward?
Joseph14612
in
PMRGCAuk
1 year ago
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
2 months ago
GCA flare dosage
I've had GCA and PMR for 10 months, on
Actemra
and was down to 9mg prednisone. When I went from 9 to 8.5mg I had a major flare and went up to 15mg. The flare continued and Rheumatologist said go to 20mg, maybe 25mg. After 2 and a half weeks on 20mg I thought I started to stabilize.
I've had GCA and PMR for 10 months, on
Actemra
and was down to 9mg prednisone. When I went from 9 to 8.5mg I had a major flare and went up to 15mg. The flare continued and Rheumatologist said go to 20mg, maybe 25mg. After 2 and a half weeks on 20mg I thought I started to stabilize.
potterylady
in
PMRGCAuk
1 year 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
6 months ago
Nerve pain in."girdle" area...started as shocks now constant severe pain.
I started
Actemra
2 months ago and have normal inflammation markers...been many years since that happened. Based on that I was told to drop from 30 to 25 pred and it was ok. Most of the things I was dealing with were my lower legs.and knees which were not PMR issues.
I started
Actemra
2 months ago and have normal inflammation markers...been many years since that happened. Based on that I was told to drop from 30 to 25 pred and it was ok. Most of the things I was dealing with were my lower legs.and knees which were not PMR issues.
Wallysma
in
PMRGCAuk
1 year ago
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
11 months ago
Major GCA Headache with 1/2mg taper
Last night my head hurt SO badly--no relief after 2 tylenol and 1 motrin, so I took my
Actemra
shot (was supposed to take it this morning) and it helped the headache. Also, the day before the shot is due, my hips, shoulders, neck are on fire.
Last night my head hurt SO badly--no relief after 2 tylenol and 1 motrin, so I took my
Actemra
shot (was supposed to take it this morning) and it helped the headache. Also, the day before the shot is due, my hips, shoulders, neck are on fire.
potterylady
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
3 months ago
very high cholesterol
I already inject
Actemra
weekly. I’m a bit hesitant to start a second biologic. My question is has anyone else had to inject repatha and how did it work for you. I am still on hydrocortisone tablets twice a day and
Actemra
weekly. Thank you. Peggy
I already inject
Actemra
weekly. I’m a bit hesitant to start a second biologic. My question is has anyone else had to inject repatha and how did it work for you. I am still on hydrocortisone tablets twice a day and
Actemra
weekly. Thank you. Peggy
pmac22
in
PMRGCAuk
1 year ago
Possibly new on Actemra, what should I know?
Hi, I will likely be on
Actemra
in a week, providing OK tests. Sofar been on only pred in moderate dose (strated at 80 due to eye involvement and tapered down to 2 in about a year.
Hi, I will likely be on
Actemra
in a week, providing OK tests. Sofar been on only pred in moderate dose (strated at 80 due to eye involvement and tapered down to 2 in about a year.
Gilmor
in
PMRGCAuk
1 year 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
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
7 months 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
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
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
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
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
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