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New affliction with PMR/GCA
So after 8 or so months on prednisone (started at 60 mg) for PMR and GCA, along with 10weeks of
Actemra
, I am down to 25 mg pred. Noticed a new problem for the last couple weeks....pain and cramping in the hands with fingers locking up. Has anyone else experienced this? And how can it be treated?
So after 8 or so months on prednisone (started at 60 mg) for PMR and GCA, along with 10weeks of
Actemra
, I am down to 25 mg pred. Noticed a new problem for the last couple weeks....pain and cramping in the hands with fingers locking up. Has anyone else experienced this? And how can it be treated?
Joseph14612
in
PMRGCAuk
1 year ago
GCA Flare-again
/
actemra
to manage the disease. Your thoughts?
/
actemra
to manage the disease. Your thoughts?
Preacherball
in
PMRGCAuk
1 year ago
possible GCA flare post covid
I stopped weekly
Actemra
inj for 2 weeks and Per my endocrinologist instructions I doubled my prednisone from 6mg to 12mg. It was a rough couple of weeks but I am better now, just tired. I am back down to 6mg of prednisone and did my
Actemra
injection a few days ago.
I stopped weekly
Actemra
inj for 2 weeks and Per my endocrinologist instructions I doubled my prednisone from 6mg to 12mg. It was a rough couple of weeks but I am better now, just tired. I am back down to 6mg of prednisone and did my
Actemra
injection a few days ago.
pmac22
in
PMRGCAuk
1 year ago
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Calendar for Biologics
I started using RoActemra (Tocilizumab on Tuesday and the nurse said there was a calendar you could get so you could record the date and which side (my tummy) you did the injection. What do other people do who are on weekly injections? Thank you.
I started using RoActemra (Tocilizumab on Tuesday and the nurse said there was a calendar you could get so you could record the date and which side (my tummy) you did the injection. What do other people do who are on weekly injections? Thank you.
barbieg
in
NRAS
11 months ago
Actemra injection
Hi yet another question re
actemra
. Can I change time of day or day I do the weekly injection? I have tried to speak to nurse but not available ....your help appreciated
Hi yet another question re
actemra
. Can I change time of day or day I do the weekly injection? I have tried to speak to nurse but not available ....your help appreciated
WaltzG
in
PMRGCAuk
2 years ago
When do you stop Actemra
I have had four infusions of
Actemra
. I am down to 4 mg of prednisone with no real pain. I really would like to stop the Actmera due to the side affects. At what point is it okay to stop it?
I have had four infusions of
Actemra
. I am down to 4 mg of prednisone with no real pain. I really would like to stop the Actmera due to the side affects. At what point is it okay to stop it?
Plains
in
PMRGCAuk
2 years ago
GCA starting dose relapse?
Also, what is your experiences with
Actemra
/tocilizumab, side effects etc? One problem for me might be that it knocks out the inflammation markers which might be negative. And a thanks for all who contribute to the forum
Also, what is your experiences with
Actemra
/tocilizumab, side effects etc? One problem for me might be that it knocks out the inflammation markers which might be negative. And a thanks for all who contribute to the forum
Gilmor
in
PMRGCAuk
1 year ago
Worse after 2 years
I have tapered to 5.5 mg of prednisone and over the summer up until now I’ve had seven monthly infusions of
Actemra
. At this point, I maintain walking daily up to 2 1/2 miles, slowly and do some tai chi, too. Still, It’s uncomfortable to squat and makes me a bit breathless and sometimes dizzy.
I have tapered to 5.5 mg of prednisone and over the summer up until now I’ve had seven monthly infusions of
Actemra
. At this point, I maintain walking daily up to 2 1/2 miles, slowly and do some tai chi, too. Still, It’s uncomfortable to squat and makes me a bit breathless and sometimes dizzy.
Greytree
in
PMRGCAuk
1 year ago
Weaning problem
Been up and down for months ....I am taking the 6th
Actemra
inj on Monday....
Been up and down for months ....I am taking the 6th
Actemra
inj on Monday....
Joseph14612
in
PMRGCAuk
2 years ago
sweating
I have been off prednisone and
actemra
since mid July this year. I keep having sweats. On even slight activity, eating warm food. Anyone else have this post prednisone experience. thanks.
I have been off prednisone and
actemra
since mid July this year. I keep having sweats. On even slight activity, eating warm food. Anyone else have this post prednisone experience. thanks.
alvertta
in
PMRGCAuk
2 years ago
Numbness hands, face and feet
Weekly self injections of
Actemra
since August 2022. My rheumatologist has sent a referral to a neurologist to find out why the numbess is still persisting. Any members experiencing numbness?
Weekly self injections of
Actemra
since August 2022. My rheumatologist has sent a referral to a neurologist to find out why the numbess is still persisting. Any members experiencing numbness?
JuneWalker
in
PMRGCAuk
2 years ago
High BP, meds don't work
On prednisone and a drug called
Actemra
, a monthly infusion. I missed my treatment last month of
Actemra
, and went without it. Blood pressure did not improve so do not think the
Actemra
is the cause. My blood work and urine tests show blood and protein in both blood work and urine.
On prednisone and a drug called
Actemra
, a monthly infusion. I missed my treatment last month of
Actemra
, and went without it. Blood pressure did not improve so do not think the
Actemra
is the cause. My blood work and urine tests show blood and protein in both blood work and urine.
phebamom
in
High Blood Pressure Support
2 years ago
Using actemra pen
Hi I self-injected with the
actemra
pen last night for the first time on my own and today I have a bigish bruise at the site. Is this normal or did I do something wrong? It didn't happen when I did with a nurse....
Hi I self-injected with the
actemra
pen last night for the first time on my own and today I have a bigish bruise at the site. Is this normal or did I do something wrong? It didn't happen when I did with a nurse....
WaltzG
in
PMRGCAuk
2 years ago
Am I panicking?
I have been on monthly
Actemra
infusions for a little over a year. I got completely off of prednisone 6 months ago.
Actemra
helped me almost immediately. Since I started taking it I have had not one symptom of GCA until maybe now? 2 weeks ago I had a mild pain in my jaw.
I have been on monthly
Actemra
infusions for a little over a year. I got completely off of prednisone 6 months ago.
Actemra
helped me almost immediately. Since I started taking it I have had not one symptom of GCA until maybe now? 2 weeks ago I had a mild pain in my jaw.
nallufl24
in
PMRGCAuk
2 years ago
heart rate
I am on
Actemra
and 35 mg prednisone...for PMR and GCA....heart rate staying high after 5 hours.....anywhere from 75-over 100 at rest.
I am on
Actemra
and 35 mg prednisone...for PMR and GCA....heart rate staying high after 5 hours.....anywhere from 75-over 100 at rest.
Joseph14612
in
PMRGCAuk
2 years ago
Advice on a lower GI investigation with a swallowed camera as a hospital in-patient.
I gave up Tocilizumab /
Actemra
early because of lower abdominal pain and diahorrea about a year ago. My Colonoscopy showed diverticulosis and polyps which were removed. The pain etc has continued.
I gave up Tocilizumab /
Actemra
early because of lower abdominal pain and diahorrea about a year ago. My Colonoscopy showed diverticulosis and polyps which were removed. The pain etc has continued.
SheffieldJane
in
PMRGCAuk
1 year ago
forgot to take prednisone this morning, I think.
I am also on 4th shot of
Actemra
.
I am also on 4th shot of
Actemra
.
Joseph14612
in
PMRGCAuk
2 years ago
Brief update on my lower Intestinal Tract Capsule Endoscopy.
My guess is collateral damage from Prednisalone and
Actemra
that may heal when I am off the drugs. Your well wishes were my strength and stay. X
My guess is collateral damage from Prednisalone and
Actemra
that may heal when I am off the drugs. Your well wishes were my strength and stay. X
SheffieldJane
in
PMRGCAuk
1 year ago
To taper Actemra or not?
Just wondering whether to take the Rheumy’s orders or follow my own instincts. I am still on 3-weekly injections of tocilizumab and have managed to taper the pred to 0.25mg. My doctor scoffed at that, she doesn’t believe that such a small amount could make a difference, and perhaps she’s right, but
Just wondering whether to take the Rheumy’s orders or follow my own instincts. I am still on 3-weekly injections of tocilizumab and have managed to taper the pred to 0.25mg. My doctor scoffed at that, she doesn’t believe that such a small amount could make a difference, and perhaps she’s right, but
LemonZest11
in
PMRGCAuk
2 years ago
Totally desperate and abandoned (sorry- this is a long rant)
I was thus able to be on Ro-
Actemra
(Tocilizumab) for nearly 4 years, but my last injection was in May this year, and a blood test last week shows I am having a major relapse 10 weeks after my last injection.
I was thus able to be on Ro-
Actemra
(Tocilizumab) for nearly 4 years, but my last injection was in May this year, and a blood test last week shows I am having a major relapse 10 weeks after my last injection.
Suzita76
in
PMRGCAuk
1 year ago
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