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Actemra
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GCA and Ear Swelling, Pressure
I’m on
Actemra
and 4 mg prednisone.
I’m on
Actemra
and 4 mg prednisone.
Pamk1949
in
PMRGCAuk
11 months ago
Alendronic acid
I am on 4 and a half mg of prednisone and biweekly
Actemra
. No pain. Feel great. I eat calcium laden foods and take daily supplements. Any opinions as I feel guilty?!!
I am on 4 and a half mg of prednisone and biweekly
Actemra
. No pain. Feel great. I eat calcium laden foods and take daily supplements. Any opinions as I feel guilty?!!
Strelitzia
in
PMRGCAuk
11 months ago
"Scientists achieve breakthrough in treating 'neglected' polymyalgia rheumatica" - that's the headline but don't get too excited ...
However - it is still a monoclonal antibody, a biologic, which does the same as tocilizumab/
Actemra
, and I imagine that means it is still pretty pricey.
However - it is still a monoclonal antibody, a biologic, which does the same as tocilizumab/
Actemra
, and I imagine that means it is still pretty pricey.
PMRpro
Ambassador
in
PMRGCAuk
9 months ago
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Doing what is necessary....skipping Actemra
I'm not really sure if
Actemra
was to blame for that??? I will finally be seeing my rheumatologist on the 14th of September. I had blood work done this week and of course, everything is normal since I am back on the
Actemra
.
I'm not really sure if
Actemra
was to blame for that??? I will finally be seeing my rheumatologist on the 14th of September. I had blood work done this week and of course, everything is normal since I am back on the
Actemra
.
Grammy80
in
PMRGCAuk
11 months ago
How long to take Actemra?
I've been on
Actemra
for almost a year. I was tapering steroids pretty well, but had a flare that lasted 2-3 months so I'm back up to 35- 32.5mg of Pred per day. I'm wondering if the
Actemra
shots are even working for me.
I've been on
Actemra
for almost a year. I was tapering steroids pretty well, but had a flare that lasted 2-3 months so I'm back up to 35- 32.5mg of Pred per day. I'm wondering if the
Actemra
shots are even working for me.
potterylady
in
PMRGCAuk
1 year ago
Actemra
Just wondered if anyone on this side has ever tried
Actemra
?
Just wondered if anyone on this side has ever tried
Actemra
?
brenda1207
in
PMRGCAuk
1 year ago
Broken record head pain
I have the
Actemra
injections once a month. I cannot help but feel there is something else going on in my head, not just possible GCA. I have asked for a PET scan by my Rhumy but he does not see the need. A year ago my GP ordered a MRI do to ear pain and hearing a heart beat in my head.
I have the
Actemra
injections once a month. I cannot help but feel there is something else going on in my head, not just possible GCA. I have asked for a PET scan by my Rhumy but he does not see the need. A year ago my GP ordered a MRI do to ear pain and hearing a heart beat in my head.
Plains
in
PMRGCAuk
9 months ago
Let’s see? Bowel perforation and GCA Flare ?
Since I was still on antibiotics for three weeks after discharge…no
Actemra
for me!
Since I was still on antibiotics for three weeks after discharge…no
Actemra
for me!
Grammy80
in
PMRGCAuk
8 months ago
GCA with Lupus
Nothing was working until I started the
Actemra
shots once a week. Seemed to be going great. Then diagnosed with a sarcoma and rheumatologist took me off
Actemra
and left me on minimum prednisone. After treatment of radiation and three surgeries I was back on
Actemra
.
Nothing was working until I started the
Actemra
shots once a week. Seemed to be going great. Then diagnosed with a sarcoma and rheumatologist took me off
Actemra
and left me on minimum prednisone. After treatment of radiation and three surgeries I was back on
Actemra
.
Gluten
in
PMRGCAuk
1 year ago
GCA and Vision update
I have now had 3 (weekly) injections of
Actemra
. I am still very concerned about my eyesight. I still see double at a distance, though it’s not as divergent as it was, I can read again up close, though, without it, being double.
I have now had 3 (weekly) injections of
Actemra
. I am still very concerned about my eyesight. I still see double at a distance, though it’s not as divergent as it was, I can read again up close, though, without it, being double.
Lenore58
in
PMRGCAuk
8 months ago
GCA Relapse —Is +5 Pred Enough?
I am curently on my second bout of GCA/PMR, and curently on prednisone with every other week
Actemra
injections. Last week I had PMR symptoms, so I went up from 1.5 to 2 mg prednisone.
I am curently on my second bout of GCA/PMR, and curently on prednisone with every other week
Actemra
injections. Last week I had PMR symptoms, so I went up from 1.5 to 2 mg prednisone.
Pamk1949
in
PMRGCAuk
11 months ago
GCA Osteoarthritis
The rheumatologist wants to treat the osteoarthritis with 30mg of prednisone and he also mentioned
Actemra
infusion. Not really sure what to do. Vision is opthamologist area but arthritis is rheumatologist specialty.
The rheumatologist wants to treat the osteoarthritis with 30mg of prednisone and he also mentioned
Actemra
infusion. Not really sure what to do. Vision is opthamologist area but arthritis is rheumatologist specialty.
Kittymom7
in
PMRGCAuk
1 year ago
35mg Pred after a year of GCA,PMR
She thinks I should be way lower due to the
Actemra
. I tried to explain that
Actemra
doesn't work for everyone the same way. She wants me to see a neurologist to check for other diseases. I'd love your advice on what to do. Is this on the spectrum of normal for GCA and PMR?
She thinks I should be way lower due to the
Actemra
. I tried to explain that
Actemra
doesn't work for everyone the same way. She wants me to see a neurologist to check for other diseases. I'd love your advice on what to do. Is this on the spectrum of normal for GCA and PMR?
potterylady
in
PMRGCAuk
1 year ago
Painful feet, back, thighs
I started on 60mg prednisolone and have now reduced to 7mg/6mg with the help of Tocilizumab/
Actemra
injections for one year, now stopped, and methotrexate 10mg per week, which I am still on. I have had one relaps last summer but have been ok since, apart from the usual side- effects.
I started on 60mg prednisolone and have now reduced to 7mg/6mg with the help of Tocilizumab/
Actemra
injections for one year, now stopped, and methotrexate 10mg per week, which I am still on. I have had one relaps last summer but have been ok since, apart from the usual side- effects.
Antschi
in
PMRGCAuk
11 months ago
9 years PMR and counting!
In 2014 I was finally diagnosed with PMR and GCA in 2018 and shortly after I developed lung fibrosis around the time I was put on
Actemra
. The subsequent mucus in the lungs rapidly cleared when I adopted a gluten free diet and minimal wheat (which always did bind me up!).
In 2014 I was finally diagnosed with PMR and GCA in 2018 and shortly after I developed lung fibrosis around the time I was put on
Actemra
. The subsequent mucus in the lungs rapidly cleared when I adopted a gluten free diet and minimal wheat (which always did bind me up!).
AussieKid
in
PMRGCAuk
11 months ago
New treatment plan GCA
Initially I was told that I would be on
Actemra
for one year with Prednisone and then Methotrexate. Yesterday, I was informed that there will be no Methotrexate and from month ten, I move to fortnightly
Actemra
injections to extend it out. I am curious to know if anyone has tried this method?
Initially I was told that I would be on
Actemra
for one year with Prednisone and then Methotrexate. Yesterday, I was informed that there will be no Methotrexate and from month ten, I move to fortnightly
Actemra
injections to extend it out. I am curious to know if anyone has tried this method?
Bessyg
in
PMRGCAuk
7 months ago
Info onActemra
Then March 22 I started
Actemra
weekly injections. I have been very fortunate so far as I tapered and stopped Pred in Dec 22 but still taking
Actemra
shots - fortnightly now. My question is how long have others had to take
Actemra
after cessation of pain and no flares?
Then March 22 I started
Actemra
weekly injections. I have been very fortunate so far as I tapered and stopped Pred in Dec 22 but still taking
Actemra
shots - fortnightly now. My question is how long have others had to take
Actemra
after cessation of pain and no flares?
MarksPoint
in
PMRGCAuk
1 year ago
GCA and starting Actemra at 10 mg
Actemra
was not started until I was at 10 mg. currently I’m at 3 and a half daily with
Actemra
every other week. My question is, at this point in my taper is
Actemra
even worth it? I noticed here that people on
Actemra
are tapering just as slow as I did before
Actemra
.
Actemra
was not started until I was at 10 mg. currently I’m at 3 and a half daily with
Actemra
every other week. My question is, at this point in my taper is
Actemra
even worth it? I noticed here that people on
Actemra
are tapering just as slow as I did before
Actemra
.
Pamk1949
in
PMRGCAuk
1 year ago
Actemra and diverticulitis- a link?
I’ve been on
Actemra
for about 6 months, am still on 17.5 prednisolone and have had to increase to 20 or 25 several times for flares, stress etc, so it doesn’t seem to be helping to save the steroids.
I’ve been on
Actemra
for about 6 months, am still on 17.5 prednisolone and have had to increase to 20 or 25 several times for flares, stress etc, so it doesn’t seem to be helping to save the steroids.
Japsquar
in
PMRGCAuk
7 months ago
Finishing with Actemra
I would like to stop
Actemra
as soon as is reasonably possible, but I haven't heard anyone on this site - or anywhere else for that matter, who has ceased
Actemra
and what the criteria for cessation is.
I would like to stop
Actemra
as soon as is reasonably possible, but I haven't heard anyone on this site - or anywhere else for that matter, who has ceased
Actemra
and what the criteria for cessation is.
MarksPoint
in
PMRGCAuk
1 year ago
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