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Actemra
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What a difference a consultant makes!!
The implication was I was only given a further 6 months of
Actemra
TCZ when I thought it was a year, so have emailed the company to check that. If it's a year, I will definitely ignore them. Arghhhhh
The implication was I was only given a further 6 months of
Actemra
TCZ when I thought it was a year, so have emailed the company to check that. If it's a year, I will definitely ignore them. Arghhhhh
Sophiestree
in
PMRGCAuk
2 years ago
Checking in: Rheumy diagnosis GCA
I'm at 40, down from 80. ( prednisone) She suggested
Actemra
(tocilizumab) but only if after I read about it, I felt comfortable with if. Am a little nervous about another new drug and self administrating injection...yikes! What's your experience?
I'm at 40, down from 80. ( prednisone) She suggested
Actemra
(tocilizumab) but only if after I read about it, I felt comfortable with if. Am a little nervous about another new drug and self administrating injection...yikes! What's your experience?
Cobalt2sister
in
PMRGCAuk
2 years ago
Long distance travel with Actemra?
Apologies if this seems lightweight, in view of the serious stresses others on this forum are suffering, but does anyone have recent info on travelling with several months supply of
ACTEMRA
(TCZ)?
Apologies if this seems lightweight, in view of the serious stresses others on this forum are suffering, but does anyone have recent info on travelling with several months supply of
ACTEMRA
(TCZ)?
Happyexplorer
in
PMRGCAuk
2 years ago
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Pred and Actemra
Thank you to those of you who answered my questions last week about restarting Prednisone because all my symptoms had returned whilst on
Actemra
injections alone.
Thank you to those of you who answered my questions last week about restarting Prednisone because all my symptoms had returned whilst on
Actemra
injections alone.
Mahler2
in
PMRGCAuk
2 years ago
Numb toes
On 5mg. prednisone and monthly infusion of
Actemra
. Age 66.
On 5mg. prednisone and monthly infusion of
Actemra
. Age 66.
phebamom
in
PMRGCAuk
2 years ago
Has anyone had Covid whilst on Actemra and 20mg Prednisone?
I have GCA and am at the stage of reducing from 60 to 20mg Pred and having weekly
Actemra
injections. Just wanted to ask if anyone has had Covid whilst taking the same meds ? And if so how did you cope and do you have any suggestions to help ease things?
I have GCA and am at the stage of reducing from 60 to 20mg Pred and having weekly
Actemra
injections. Just wanted to ask if anyone has had Covid whilst taking the same meds ? And if so how did you cope and do you have any suggestions to help ease things?
MarksPoint
in
PMRGCAuk
2 years ago
Headache in temples
My question is, could this be a symptom of GCA even though I have been treated with prednisone and
Actemra
for 3 1/2 years. back in 2018, they did do a temporal biopsy which was negative, but that was after the fact that I was diagnosed with GCA after a PET scan.
My question is, could this be a symptom of GCA even though I have been treated with prednisone and
Actemra
for 3 1/2 years. back in 2018, they did do a temporal biopsy which was negative, but that was after the fact that I was diagnosed with GCA after a PET scan.
luv2read
in
PMRGCAuk
2 years ago
Ear pressure and blockage in gca
My wife is on gca treatment from last 10 months ,she took 60 mg tapering prednisone with
Actemra
weekly in starting 4 months , now , only on prednisone 9 mg , got two flare at 10 mg in between, and went back to 40 mg Her , main symptom are, pressure and blockage on both side of ear ( but no problem
My wife is on gca treatment from last 10 months ,she took 60 mg tapering prednisone with
Actemra
weekly in starting 4 months , now , only on prednisone 9 mg , got two flare at 10 mg in between, and went back to 40 mg Her , main symptom are, pressure and blockage on both side of ear ( but no problem
Rajuguide
in
PMRGCAuk
2 years ago
Still have headache on 5 mg prednisone
I wrote over the weekend that I was on 4 mg pred and
Actemra
infusions. When I went on 4 mg I had a constant headache for 2 weeks. I was fine on 5. I called doctor and was told to go back up to 5 and stay til my appt in 2 weeks.
I wrote over the weekend that I was on 4 mg pred and
Actemra
infusions. When I went on 4 mg I had a constant headache for 2 weeks. I was fine on 5. I called doctor and was told to go back up to 5 and stay til my appt in 2 weeks.
nallufl24
in
PMRGCAuk
2 years ago
Alternative to prednisone
I am about to be tapered off prednisone and put on the biologic medication
Actemra
(Tocilizumab) as my rheumatologist says the long term effects of prednisone are very hard on the body. The
Actemra
will be self injected weekly.
I am about to be tapered off prednisone and put on the biologic medication
Actemra
(Tocilizumab) as my rheumatologist says the long term effects of prednisone are very hard on the body. The
Actemra
will be self injected weekly.
Strelitzia
in
PMRGCAuk
2 years ago
Headache for 2 weeks
I’m down to 4 mg prednisone and
Actemra
monthly infusions for past 4 months. My rheumatologist thinks I should be totally off of pred now but I followed his instructions til I got to 5. I went to 4 almost two weeks ago and have had a headache every day. It’s starting to worry me.
I’m down to 4 mg prednisone and
Actemra
monthly infusions for past 4 months. My rheumatologist thinks I should be totally off of pred now but I followed his instructions til I got to 5. I went to 4 almost two weeks ago and have had a headache every day. It’s starting to worry me.
nallufl24
in
PMRGCAuk
2 years ago
Advice please
For the second time my rheumatologist has weaned me off prednisone using
Actemra
. The first time I got to 1mg but stopped it because I had experienced constant cystitis for the 6 months I had been injecting it. That was in May 2021.
For the second time my rheumatologist has weaned me off prednisone using
Actemra
. The first time I got to 1mg but stopped it because I had experienced constant cystitis for the 6 months I had been injecting it. That was in May 2021.
Mahler2
in
PMRGCAuk
2 years ago
Can't get on top of this flare
I didn't use the
Actemra
on 4th Feb as I had my 4th Covid vaccination that day (I've had experience of my neutrophils dipping dramatically after vaccinations and
Actemra
might make the recovery slower). A week later I took the
Actemra
again and reduced pred to 1.5mg, on 10th Feb.
I didn't use the
Actemra
on 4th Feb as I had my 4th Covid vaccination that day (I've had experience of my neutrophils dipping dramatically after vaccinations and
Actemra
might make the recovery slower). A week later I took the
Actemra
again and reduced pred to 1.5mg, on 10th Feb.
PastelsinArt
in
PMRGCAuk
2 years ago
Actemra and immune system
For someone on has been on weekly
Actemra
injections for 8 months & has had numerous respiratory infections, how concerned should they feel should they test positive for Covid 19?
For someone on has been on weekly
Actemra
injections for 8 months & has had numerous respiratory infections, how concerned should they feel should they test positive for Covid 19?
BossHoss
in
PMRGCAuk
2 years ago
GCA since October 2020 -from Virginia
I have tapered to 8mg prednisone, 10mg methotrexate, and started monthly infusion of
Actemra
in February. Still have symptoms, particularly in jaw….face feels active! I find the information posted here most helpful, as the disease, along with Covid has been a bit isolating.
I have tapered to 8mg prednisone, 10mg methotrexate, and started monthly infusion of
Actemra
in February. Still have symptoms, particularly in jaw….face feels active! I find the information posted here most helpful, as the disease, along with Covid has been a bit isolating.
Elephants2019
in
PMRGCAuk
2 years ago
Actemra and Blood pressure
Has any one else developed high blood pressure on
Actemra
. My rheumatologist doubled my
Actemra
dose last month and now my BP is out of control.
Has any one else developed high blood pressure on
Actemra
. My rheumatologist doubled my
Actemra
dose last month and now my BP is out of control.
phebamom
in
PMRGCAuk
2 years ago
When do I panic? Already did!
And he is starting me on
Actemra
injections once a week as well. I have my fingers - and toes - crossed that this will work. Again, so grateful for your responses and support through this journey.
And he is starting me on
Actemra
injections once a week as well. I have my fingers - and toes - crossed that this will work. Again, so grateful for your responses and support through this journey.
91066Jackson
in
PMRGCAuk
2 years ago
Shingles is urgent!
I had Shingles a couple of years ago while on Pred (no
Actemra
or anything) , luckily OH recognised it and I got referred straight away on a Sunday and emergency prescription supplied. It wasn't pleasant but not too bad, mostly on my head, though I still have a strange skin patch on my neck.
I had Shingles a couple of years ago while on Pred (no
Actemra
or anything) , luckily OH recognised it and I got referred straight away on a Sunday and emergency prescription supplied. It wasn't pleasant but not too bad, mostly on my head, though I still have a strange skin patch on my neck.
Roltuba
in
PMRGCAuk
2 years ago
My what a long journey!
After 10 years of PMR with GCA the last 4, I had done very well on
Actemra
. Was able to taper off Pred, then in Sept off
Actemra
. 4 glorious months off meds and it’s back! Classic PMR symptoms, along with niggles of GCA (hoarseness, ear aches) and elevated markers. Dang!
After 10 years of PMR with GCA the last 4, I had done very well on
Actemra
. Was able to taper off Pred, then in Sept off
Actemra
. 4 glorious months off meds and it’s back! Classic PMR symptoms, along with niggles of GCA (hoarseness, ear aches) and elevated markers. Dang!
PMR2011
in
PMRGCAuk
2 years ago
Root canal, two surgeries and an ablation.
I am not injecting my
Actemra
two weeks before and two weeks after my procedures. That was a tough schedule to come up with. I’m trying to deal with all my pain not associated with PMR.
I am not injecting my
Actemra
two weeks before and two weeks after my procedures. That was a tough schedule to come up with. I’m trying to deal with all my pain not associated with PMR.
Blackcatlover
in
PMRGCAuk
2 years ago
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