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Actemra
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GCA is vision damage permanent?
I was put on Pred for a few months and then phased off and now receive monthly tranfusions of
Actemra
.
I was put on Pred for a few months and then phased off and now receive monthly tranfusions of
Actemra
.
Dknutson1944
in
PMRGCAuk
5 years ago
Cannabidiol (CBD) and GCA treatment - all narratives welcome
I have started on
Actemra
weekly SC at 162 mg since last week as treatment for my GCA with 45 mg pred daily currently. Thankyou
I have started on
Actemra
weekly SC at 162 mg since last week as treatment for my GCA with 45 mg pred daily currently. Thankyou
Iwillwin123
in
PMRGCAuk
5 years ago
For our GCAPro. Surgery/relapse
My question here is how quickly can I continue to reduce while still on
Actemra
? Dr. will not operate until I am down to 10.Was scheduled for surgery three days ago but that went by the wayside. I am aware that
Actemra
is not used as much in England or Europe.
My question here is how quickly can I continue to reduce while still on
Actemra
? Dr. will not operate until I am down to 10.Was scheduled for surgery three days ago but that went by the wayside. I am aware that
Actemra
is not used as much in England or Europe.
Nap1
in
PMRGCAuk
5 years ago
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Suffering on Humira
Then I was on
Actemra
for seven years with zero side effects and excellent results until it ran it’s course. So here I am on my third treatment option with far less positive results 😪
Then I was on
Actemra
for seven years with zero side effects and excellent results until it ran it’s course. So here I am on my third treatment option with far less positive results 😪
SufferingOnHumira
in
NRAS
5 years ago
Hose me down!
Having just got to club zero in February ( am on
Actemra
) I wanted to cry! Intellectually I know what it’s for but emotionally I just don’t want to do it!
Having just got to club zero in February ( am on
Actemra
) I wanted to cry! Intellectually I know what it’s for but emotionally I just don’t want to do it!
PMR2011
in
PMRGCAuk
5 years ago
Actemra - What is the subcutaneous injection duration for GCA - urgent Info request
I must start on
Actemra
subcutaneous injection of 162 mg . I very urgently need the following information 1. What should be the duration of the injection ? 2. What was the experience short term or long term ? 3. How many injections were given to you and continued injection at what dosage ?
I must start on
Actemra
subcutaneous injection of 162 mg . I very urgently need the following information 1. What should be the duration of the injection ? 2. What was the experience short term or long term ? 3. How many injections were given to you and continued injection at what dosage ?
Iwillwin123
in
PMRGCAuk
6 years ago
Pain and methotrexate.
I’m just struggling all the time without the
Actemra
, that I was on for over a year. I refuse to go back to double digits prednisone. As long as I’m just in pain without any life threatening stuff, I will not go above the 7ngs that I came up to when taken off
Actemra
. This disease is from hell.
I’m just struggling all the time without the
Actemra
, that I was on for over a year. I refuse to go back to double digits prednisone. As long as I’m just in pain without any life threatening stuff, I will not go above the 7ngs that I came up to when taken off
Actemra
. This disease is from hell.
Aleish
in
PMRGCAuk
6 years ago
Travelling with RoActemra (Tocilizumab)
Hi -does anyone have any experience with travelling with RoActemra (Tocilizumab) . I need to be able to keep it at 2 - 8 degrees C for approximately 8-10 hours (to airport on plane etc.) before getting somewhere with a fridge. Any ideas would be great thanks
Hi -does anyone have any experience with travelling with RoActemra (Tocilizumab) . I need to be able to keep it at 2 - 8 degrees C for approximately 8-10 hours (to airport on plane etc.) before getting somewhere with a fridge. Any ideas would be great thanks
TTCC
in
NRAS
5 years ago
Me and biologics
Then I had
Actemra
, taken off after 5 injections. Fingers crossed, Orancia next. My white cells kept dropping. 0.5. The last one seemed to be working too. What a shame. My white cells, neutrophils, are very sensitive apparently.
Then I had
Actemra
, taken off after 5 injections. Fingers crossed, Orancia next. My white cells kept dropping. 0.5. The last one seemed to be working too. What a shame. My white cells, neutrophils, are very sensitive apparently.
crazylady57
in
NRAS
6 years ago
Tocilizumab and demyelination
Actemra
for PMR and maybe even for GCA is IMO, a huge, completely unnecessary risk. Just wanted to warn anyone who is wishing or considering taking
Actemra
. Will update when I know something new..
Actemra
for PMR and maybe even for GCA is IMO, a huge, completely unnecessary risk. Just wanted to warn anyone who is wishing or considering taking
Actemra
. Will update when I know something new..
Gaijin
in
PMRGCAuk
6 years ago
Radiation treatments and PMR/GCA
Necessary to stop
Actemra
11/18 preop work up for Lumpectomy and Sentinal node biopsy done 1/23/19. Current dose Prednisone 14 mg. Results positive for invasive ductal cancer. Good news chemotherapy not needed. Will start radiation treatments in 2 weeks.
Necessary to stop
Actemra
11/18 preop work up for Lumpectomy and Sentinal node biopsy done 1/23/19. Current dose Prednisone 14 mg. Results positive for invasive ductal cancer. Good news chemotherapy not needed. Will start radiation treatments in 2 weeks.
LCHRISTOP10
in
PMRGCAuk
6 years ago
ACTEMRA
Is it true new drug for GCA available on NHS available in England not Scotland? If not why not ? Scots Wahae!
Is it true new drug for GCA available on NHS available in England not Scotland? If not why not ? Scots Wahae!
Seagu11
in
PMRGCAuk
6 years ago
Very Important information for GCA sufferers
https://www.statnews.com/2017/06/05/
actemra
-rheumatoid-arthritis-fda/ Anyway, Spring is definitely here ( in the UK), and we must all make the most of everything eh?! Best Wishes, Suzita
https://www.statnews.com/2017/06/05/
actemra
-rheumatoid-arthritis-fda/ Anyway, Spring is definitely here ( in the UK), and we must all make the most of everything eh?! Best Wishes, Suzita
Suzita76
in
PMRGCAuk
6 years ago
I’m so excited
Have been on weekly
Actemra
for a year and DSNS tapered. I had to tell someone and I knew you all would understand! (Feels strange...like not having your Teddy Bear or security blanket). Cheers all!
Have been on weekly
Actemra
for a year and DSNS tapered. I had to tell someone and I knew you all would understand! (Feels strange...like not having your Teddy Bear or security blanket). Cheers all!
PMR2011
in
PMRGCAuk
6 years ago
Actemra and Managing Infections
My doctor recommended- even though I would be scheduled to take
Actemra
- a very slow classic taper when I reach 10 mg of prednisone. Frankly, I don’t know if I’m going to continue with
Actemra
.
Actemra
places a second hit on my already suppressed immune system. Its been a real battle.
My doctor recommended- even though I would be scheduled to take
Actemra
- a very slow classic taper when I reach 10 mg of prednisone. Frankly, I don’t know if I’m going to continue with
Actemra
.
Actemra
places a second hit on my already suppressed immune system. Its been a real battle.
Lauren103
in
PMRGCAuk
6 years ago
Managing pain and failing biological agents
I currently have gained a significant amount of weight and my cholesterol and blood pressure has become elivated, during this last month of use with
Actemra
so not sure how this will impact my continued use. I have always used pain management past a year of being strictly against them.
I currently have gained a significant amount of weight and my cholesterol and blood pressure has become elivated, during this last month of use with
Actemra
so not sure how this will impact my continued use. I have always used pain management past a year of being strictly against them.
Rasux
in
NRAS
6 years ago
Abatacept
Hi Just been prescribed abatacept and sulfasalazine after roactemra stopped working.Anybody taking this and is it successful? Tracy
Hi Just been prescribed abatacept and sulfasalazine after roactemra stopped working.Anybody taking this and is it successful? Tracy
Trace1974
in
NRAS
6 years ago
Clinic Note: GCA patient is completely non compliant with my excellent treatment plan.
Patient refused methotrexate and
actemra
. Patient had researched gca on online forums and mayo clinic website.."
Patient refused methotrexate and
actemra
. Patient had researched gca on online forums and mayo clinic website.."
Blurry62
in
PMRGCAuk
6 years ago
Actemra new drug treatment for Behcet Vasculitis
Has anyone taken
Actemra
infusions for Behcet Vasculitis? If yes how did it help
Has anyone taken
Actemra
infusions for Behcet Vasculitis? If yes how did it help
ksidhu79
in
Behçet's UK
6 years ago
Anyone had low blood platelets?
My blood platelets are 131 the range is usually 150 up can't remember what it is measured in or the range. So I need to be monitored so another blood test in a month. Causes range from medication, another autoimmune condition, infection, having Rheumatoid Arthritis, the C word, and more. Been on the
My blood platelets are 131 the range is usually 150 up can't remember what it is measured in or the range. So I need to be monitored so another blood test in a month. Causes range from medication, another autoimmune condition, infection, having Rheumatoid Arthritis, the C word, and more. Been on the
Mouseling
in
NRAS
6 years ago
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