Search
Search
About
Log in
Join
Experiences with
Actemra
Posts
Communities
769 public posts
Filter results
Tapering Pred from 2mg....to 1.5 or 1mg~?
To complete the picture, I do take an injection of
Actemra
weekly. My GCA started in 2019 and getting this low is a first. My dosage was increased last fall due to other health issues and being off my
Actemra
. Since September 2023, I've gone down from 60mg per day with no issue.
To complete the picture, I do take an injection of
Actemra
weekly. My GCA started in 2019 and getting this low is a first. My dosage was increased last fall due to other health issues and being off my
Actemra
. Since September 2023, I've gone down from 60mg per day with no issue.
Grammy80
in
PMRGCAuk
2 months ago
Stress--patience--tapering going well...
Now, after just three months, I am at 4mg, along with my weekly
Actemra
. I will drop by 1 mg each month now, and the bloodwork I did a few days ago looked awesome. The
Actemra
keeps the markers in check, but everything, including my kidney numbers, was well into the normal range~!
Now, after just three months, I am at 4mg, along with my weekly
Actemra
. I will drop by 1 mg each month now, and the bloodwork I did a few days ago looked awesome. The
Actemra
keeps the markers in check, but everything, including my kidney numbers, was well into the normal range~!
Grammy80
in
PMRGCAuk
4 months ago
Actemra Side Effects?
In late November my insurance approved me for receiving
Actemra
. I did not receive my first dose till last week, Dec. 14. I felt fine that day. The next day I could hardly get out of bed, felt very bloated and nauseous.
In late November my insurance approved me for receiving
Actemra
. I did not receive my first dose till last week, Dec. 14. I felt fine that day. The next day I could hardly get out of bed, felt very bloated and nauseous.
Mooreby
in
PMRGCAuk
5 months ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Slight Cold and Actemra
I decided to skip my 6th
Actemra
dose last Friday until it clears up. It’s almost gone but has settled in my sinuses. Tomorrow is Friday and that’s the day I take my
Actemra
. Do you all think I should skip it a second time or does it sound safe to go ahead and get back on schedule?
I decided to skip my 6th
Actemra
dose last Friday until it clears up. It’s almost gone but has settled in my sinuses. Tomorrow is Friday and that’s the day I take my
Actemra
. Do you all think I should skip it a second time or does it sound safe to go ahead and get back on schedule?
Lenore58
in
PMRGCAuk
4 months ago
Confused
At home I continued with oral corticoids, 60 mg. and at the moment I take 5 mg. a day and one injection of
Actemra
(Tocilizumab) a week, in Spain we are lucky,
Actemra
is free indefinitely as long as you need it.
At home I continued with oral corticoids, 60 mg. and at the moment I take 5 mg. a day and one injection of
Actemra
(Tocilizumab) a week, in Spain we are lucky,
Actemra
is free indefinitely as long as you need it.
Azulmarino
in
PMRGCAuk
21 days ago
GCA Duration Expectations
Presently down to 12.5 mg. prednisone and
Actemra
and feeling quite well. Is it reasonable to hope that one could recover without ever flaring again? Is it unreasonable to hope to go back to life as I once knew it?
Presently down to 12.5 mg. prednisone and
Actemra
and feeling quite well. Is it reasonable to hope that one could recover without ever flaring again? Is it unreasonable to hope to go back to life as I once knew it?
Lenore58
in
PMRGCAuk
2 months ago
Actemra and aches and pains!
As well as being on
Actemra
I have had to take a drug called entecavir as it was discovered that I am a hepatitis B carrier - non-active. No idea I had it until I was given a general blood test before going on the
Actemra
.
As well as being on
Actemra
I have had to take a drug called entecavir as it was discovered that I am a hepatitis B carrier - non-active. No idea I had it until I was given a general blood test before going on the
Actemra
.
Stkeyna
in
PMRGCAuk
5 months ago
Stopped Actemra, new questions
What was your typical Prednisone daily dose during your second year of PMR & GCA without
Actemra
? Did you have any bad effects after stopping
Actemra
? Is
Actemra
mostly prescribed for GCA or PMR or both? As always, thank you 🌺
What was your typical Prednisone daily dose during your second year of PMR & GCA without
Actemra
? Did you have any bad effects after stopping
Actemra
? Is
Actemra
mostly prescribed for GCA or PMR or both? As always, thank you 🌺
potterylady
in
PMRGCAuk
7 months ago
GCA Ear pressure and stiff neck
For the past 6 weeks I’ve been taking 3mg prednisone and
Actemra
injections every other week. Since then, I have had ear pressure, and a throat that feels swollen. I’ve read that GCA can cause ear problems. Has anyone else experienced this?
For the past 6 weeks I’ve been taking 3mg prednisone and
Actemra
injections every other week. Since then, I have had ear pressure, and a throat that feels swollen. I’ve read that GCA can cause ear problems. Has anyone else experienced this?
Pamk1949
in
PMRGCAuk
3 months ago
flare
I was on prednisone X4 month, on
Actemra
shots weeklynow,my shoulder is painful, my ear feel stuffy, have knee pain, my Rheumatologist sees me every 3 months, when I told her about my knee pain she referred me to an orthopedic, when I told her about my ear she referred me to an Ent specialist, she never
I was on prednisone X4 month, on
Actemra
shots weeklynow,my shoulder is painful, my ear feel stuffy, have knee pain, my Rheumatologist sees me every 3 months, when I told her about my knee pain she referred me to an orthopedic, when I told her about my ear she referred me to an Ent specialist, she never
Cubanurse49
in
PMRGCAuk
2 months ago
choosing an alternative to Actemra
And thank you for your usual wise and knowledgeable input which helped me to decide to stop taking
Actemra
after about 6 months following two episodes of diverticulitis in as many months. Now I need some more help! Fortunately my Rheumy finds my decision understandable.
And thank you for your usual wise and knowledgeable input which helped me to decide to stop taking
Actemra
after about 6 months following two episodes of diverticulitis in as many months. Now I need some more help! Fortunately my Rheumy finds my decision understandable.
Japsquar
in
PMRGCAuk
4 months ago
Eye:Broken Blood Vessel?
Or
Actemra
?
Or
Actemra
?
Lenore58
in
PMRGCAuk
5 months ago
Pain in Left Eye
Hi Kind Friends, I am currently on 12.5 mg prednisone (tapering from 60 in Oct.) and weekly
Actemra
injections (about 4 months) Double vision from high prednisone has resolved as I have tapered. Occasionally I feel pain in my left eye, in the outer lower corner.
Hi Kind Friends, I am currently on 12.5 mg prednisone (tapering from 60 in Oct.) and weekly
Actemra
injections (about 4 months) Double vision from high prednisone has resolved as I have tapered. Occasionally I feel pain in my left eye, in the outer lower corner.
Lenore58
in
PMRGCAuk
2 months ago
Taking Actemra (Tocilizumab) syringes abroad
I have GCA and PMR and am currently on Actemera (Tocilizumab) . Planning to go to Australia at Easter and will need to take 6 syringes and keep them cool in transit for say 24 hours. Can anyone recommend a temperature controlled carrier case?
I have GCA and PMR and am currently on Actemera (Tocilizumab) . Planning to go to Australia at Easter and will need to take 6 syringes and keep them cool in transit for say 24 hours. Can anyone recommend a temperature controlled carrier case?
Niblick
in
PMRGCAuk
4 months ago
GCA Concerns, Cold and Eyes
I fly home this afternoon; however my rheumy is out of country till mid January, Also, are people able to recover normally from colds on pred and
Actemra
? Wondering if I should skip my next
Actemra
dose on Friday if I’m still sniffling?
I fly home this afternoon; however my rheumy is out of country till mid January, Also, are people able to recover normally from colds on pred and
Actemra
? Wondering if I should skip my next
Actemra
dose on Friday if I’m still sniffling?
Lenore58
in
PMRGCAuk
4 months ago
Actemra Anxiety
I just got a message from a pharmacy to get my approval for shipping
Actemra
. My doctor said I will be having one injection a week as a steroid sparing agent. I read about how it lowers your immunity further. I feel nervous. Any thoughts?
I just got a message from a pharmacy to get my approval for shipping
Actemra
. My doctor said I will be having one injection a week as a steroid sparing agent. I read about how it lowers your immunity further. I feel nervous. Any thoughts?
Lenore58
in
PMRGCAuk
7 months ago
melatonin
Prednisone and on
Actemra
. Would it be ok for me to take melatonin?? Thanks for your replies. Shoshana
Prednisone and on
Actemra
. Would it be ok for me to take melatonin?? Thanks for your replies. Shoshana
Brooklynbridge
in
PMRGCAuk
6 months ago
Methotrexate or Prednisone which is more damaging?(also update on eyes)
I was on
Actemra
for reducing Pred, but I cannot tolerate it. Stopped 2-3 months ago. Since stopping
Actemra
, I've been able to reduce Pred faster, because
Actemra
was causing horrific headaches which I mistakenly thought were from GCA, and was afraid to reduce steroids.
I was on
Actemra
for reducing Pred, but I cannot tolerate it. Stopped 2-3 months ago. Since stopping
Actemra
, I've been able to reduce Pred faster, because
Actemra
was causing horrific headaches which I mistakenly thought were from GCA, and was afraid to reduce steroids.
potterylady
in
PMRGCAuk
5 months ago
I was fine till doctor claimed I’m in remission
I have been doing great on only
Actemra
for the last 2 years. 8 months ago rheumatologist cut my dose in half. I was still doing great til he wanted me to get my infusions every 8 weeks instead of 4. I lasted 6 weeks before my symptoms came back.
I have been doing great on only
Actemra
for the last 2 years. 8 months ago rheumatologist cut my dose in half. I was still doing great til he wanted me to get my infusions every 8 weeks instead of 4. I lasted 6 weeks before my symptoms came back.
nallufl24
in
PMRGCAuk
5 months ago
Update on worsening headaches and scalp tenderness
I am exercising less, and resting more these days.My rheumatologist thought my symptoms should be better by now due to the Pred, and one dose of
Actemra
infusion two weeks ago. He ordered a head MRI which shows "Multifoci of T2 FLAIR hyper intensity of white matter."
I am exercising less, and resting more these days.My rheumatologist thought my symptoms should be better by now due to the Pred, and one dose of
Actemra
infusion two weeks ago. He ordered a head MRI which shows "Multifoci of T2 FLAIR hyper intensity of white matter."
Bummed24
in
PMRGCAuk
2 months ago
1
2
3
...
39
Next page
10
20
30
Filter results
Clear filters
Posted in
All communities
PMRGCAuk
661 results
NRAS
79 results
LUpus Patients Understanding and Support
8 results
View top 10 communities
Sort by
Most Relevant
Newest