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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
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
11 months 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
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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 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
6 months 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
10 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
9 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
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
6 months ago
SharonY
Wondering if anyone has had dental extraction while on
Actemra
. I was told by my dentist that it affects the jaw and I would need to see a specialist since an extraction would be problematic? I am in the UK and have weekly
Actemra
injections. Thx
Wondering if anyone has had dental extraction while on
Actemra
. I was told by my dentist that it affects the jaw and I would need to see a specialist since an extraction would be problematic? I am in the UK and have weekly
Actemra
injections. Thx
WaltzG
in
PMRGCAuk
1 year ago
Actemra..any problems when taking this..
Was wondering what problems people have when taking
Actemra
weekly. I have been on it for a couple of months, slowly reducing Prednezone. Would like some information if anyone has noticed any side effects or changes. Thanks
Was wondering what problems people have when taking
Actemra
weekly. I have been on it for a couple of months, slowly reducing Prednezone. Would like some information if anyone has noticed any side effects or changes. Thanks
Wilson1952
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
5 months ago
Anxiety again?
Am also getting monthly
Actemra
infusions and have been since last fall. I don’t know why my body/mind are reacting as they are. I also don’t know why my legs and arms still feel tight and tired, which how they became when I came down with PMR more than 2 years ago. Any thoughts?
Am also getting monthly
Actemra
infusions and have been since last fall. I don’t know why my body/mind are reacting as they are. I also don’t know why my legs and arms still feel tight and tired, which how they became when I came down with PMR more than 2 years ago. Any thoughts?
Greytree
in
PMRGCAuk
1 year ago
Stopping Tocilizumab/Actemra injections
I have been told by my Rheumy in a letter to my GP that I will not be prescribed any more
Actemra
injections once I have finished with my months supply. She also mentions that half of the patients who stop taking this medication will have a flare up.
I have been told by my Rheumy in a letter to my GP that I will not be prescribed any more
Actemra
injections once I have finished with my months supply. She also mentions that half of the patients who stop taking this medication will have a flare up.
Antschi
in
PMRGCAuk
1 year ago
just a hello, an update
i stopped my
actemra
before surgery in case i needed any antibiotics ---just resumed--- and have decided to stay put at 3 mg pred...don't need any added stress, i do have 20 hours of home help per week...50% mental lift and 50% physical need or you would get a wiff of me in london!
i stopped my
actemra
before surgery in case i needed any antibiotics ---just resumed--- and have decided to stay put at 3 mg pred...don't need any added stress, i do have 20 hours of home help per week...50% mental lift and 50% physical need or you would get a wiff of me in london!
Grammy80
in
PMRGCAuk
11 months ago
COVID and discontinuing Actemra
I am still taking my weekly
Actemra
injections, the last was Friday. The
Actemra
information sheet suggests discontinuing shots if ill.
I am still taking my weekly
Actemra
injections, the last was Friday. The
Actemra
information sheet suggests discontinuing shots if ill.
Abikitty
in
PMRGCAuk
1 year ago
GPs and Actemra
Can CGPs prescribe
Actemra
? What are your experiences? I’m in the US, and have had 3 bad experiences with rheumatologists. One good one who listened, but she left. My GP has been prescribing my prednisone, but not really managing the dose.
Can CGPs prescribe
Actemra
? What are your experiences? I’m in the US, and have had 3 bad experiences with rheumatologists. One good one who listened, but she left. My GP has been prescribing my prednisone, but not really managing the dose.
Mstiles
in
PMRGCAuk
1 year ago
OK! I'm starting to prednisone taper again...
I remained at the three milligrams to be on the safe side but had to discontinue my
Actemra
on two occasions and have only been back on it for 3 weeks.
I remained at the three milligrams to be on the safe side but had to discontinue my
Actemra
on two occasions and have only been back on it for 3 weeks.
Grammy80
in
PMRGCAuk
9 months ago
Actemra
I’ve just been reading about
Actemra
for PMR. Wondering how many of you are taking this and at what dosage of Pred.
I’ve just been reading about
Actemra
for PMR. Wondering how many of you are taking this and at what dosage of Pred.
Sumojo
in
PMRGCAuk
1 year ago
GFR dropping
(on prednisone for 13 years) ,
Actemra
infusion, 600 mg. monthly , Valsartan 80 mg. twice daily. Verapimil 40mg once daily Hydrochlorthiazide, 25mg. once daily (I just called my primary, who is newly returned from vacation.
(on prednisone for 13 years) ,
Actemra
infusion, 600 mg. monthly , Valsartan 80 mg. twice daily. Verapimil 40mg once daily Hydrochlorthiazide, 25mg. once daily (I just called my primary, who is newly returned from vacation.
phebamom
in
Kidney Disease
11 months ago
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