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Actemra
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I share concerns, I'm sharing some good news!!
I'd been on 40 mg of prednisone and dropped 10mg in October and restarted
Actemra
. I sure didn't feel great but in early November, my rheumatologist thought we should drop another 10mg....I was nervous and just felt lousy.
I'd been on 40 mg of prednisone and dropped 10mg in October and restarted
Actemra
. I sure didn't feel great but in early November, my rheumatologist thought we should drop another 10mg....I was nervous and just felt lousy.
Grammy80
in
PMRGCAuk
2 years ago
Hair falling in gca treatment
My wife 70 years is on prednisone and
actemra
from last 5 months for GCA treatment.She has too much hair loss. She scare she will become bald after few months .she is depressed. Any one will guide me . Is this a permanent loss of hairs ? is there any way to stop falling of hairs.
My wife 70 years is on prednisone and
actemra
from last 5 months for GCA treatment.She has too much hair loss. She scare she will become bald after few months .she is depressed. Any one will guide me . Is this a permanent loss of hairs ? is there any way to stop falling of hairs.
Rajuguide
in
PMRGCAuk
2 years ago
Has anyone in US have a hard time paying for Actemra?
Rheumatologist wants me to take
Actemra
because pred is causing too many adverse side effects. No sure how it is in other countries but extremely expensive here. My insurance will pay half but I still have to pay over $1600 a month. I cannot afford it.
Rheumatologist wants me to take
Actemra
because pred is causing too many adverse side effects. No sure how it is in other countries but extremely expensive here. My insurance will pay half but I still have to pay over $1600 a month. I cannot afford it.
nallufl24
in
PMRGCAuk
2 years ago
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Dose pack of methyl prednisone while on 4 mg of prednisone
I am currently on 4mg of prednisone daily and auto injections of
Actemra
once a month. This is my sixth year trying to keep my PMR under control. Things have been going well for the last four months. Unfortunately I have two herniated disc’s due to a kayak trip.
I am currently on 4mg of prednisone daily and auto injections of
Actemra
once a month. This is my sixth year trying to keep my PMR under control. Things have been going well for the last four months. Unfortunately I have two herniated disc’s due to a kayak trip.
Blackcatlover
in
PMRGCAuk
2 years ago
Just curious on who has been on pred and Actemora for long periods of time and if you successfully got off it
Who on this forum has been on prednisone and
Actemra
for long periods of time and successfully got off it/them? I remember PREMPRO said 12 years and I am assuming still on it. Can GCA go into remission? I am currently on 4mg of pred and weekly injections of
Actemra
.
Who on this forum has been on prednisone and
Actemra
for long periods of time and successfully got off it/them? I remember PREMPRO said 12 years and I am assuming still on it. Can GCA go into remission? I am currently on 4mg of pred and weekly injections of
Actemra
.
luv2read
in
PMRGCAuk
3 years ago
Back up to 40 mg pred
Doctors office is now going to try to get my insurance to pay for
Actemra
so I can taper down again from pred. It’s going to take a while for that to happen since my insurance won’t pay for it and I’m not sure what they have to do to try to get it approved. So, you were all correct!
Doctors office is now going to try to get my insurance to pay for
Actemra
so I can taper down again from pred. It’s going to take a while for that to happen since my insurance won’t pay for it and I’m not sure what they have to do to try to get it approved. So, you were all correct!
nallufl24
in
PMRGCAuk
2 years ago
Any advice on GCA fatigue and treatment?
What with the steroid moon face, palpitations and this crippling fatigue, life is pretty bleak (tho I know I am lucky to have no actual pain, just jaw/tongue and limb claudication, headaches have stopped) I start
Actemra
this week, and am hoping for a miracle!
What with the steroid moon face, palpitations and this crippling fatigue, life is pretty bleak (tho I know I am lucky to have no actual pain, just jaw/tongue and limb claudication, headaches have stopped) I start
Actemra
this week, and am hoping for a miracle!
Happyexplorer
in
PMRGCAuk
2 years ago
Feels like thin ice....
I've taken injections of
Actemra
on the 5th, 12th and yesterday. Last night I noticed bleeding in my left (blind) eye. It was a bit worse this a.m. so I made an appointment with the ophthalmologist.
I've taken injections of
Actemra
on the 5th, 12th and yesterday. Last night I noticed bleeding in my left (blind) eye. It was a bit worse this a.m. so I made an appointment with the ophthalmologist.
Grammy80
in
PMRGCAuk
3 years ago
Efficiency of Actemra injection in GCA
Are
actemra
injection weekly with prednisone have better control of GCA, compare with prednisone alone in treatment of GCA ?
Are
actemra
injection weekly with prednisone have better control of GCA, compare with prednisone alone in treatment of GCA ?
Rajuguide
in
PMRGCAuk
3 years ago
My GCA/LVV experience
I was immediately put on 40 mgs of Prednisalone and once it became available and my Rheumatologist successfully applied for it, I began Tocilizumab/
Actemra
injections. This enabled me to reduce Prednisalone in a few weeks to 10 mgs - no flares.
I was immediately put on 40 mgs of Prednisalone and once it became available and my Rheumatologist successfully applied for it, I began Tocilizumab/
Actemra
injections. This enabled me to reduce Prednisalone in a few weeks to 10 mgs - no flares.
SheffieldJane
in
PMRGCAuk
2 years ago
Carry on actemra injection while traveling in flight out of USA
My wife is under weekly course of
actemra
injection for GCA , she will be travelling to India next month for 2 months . Can she carry 8 injection with her in flight . Any one experience and guidance will help me lot .
My wife is under weekly course of
actemra
injection for GCA , she will be travelling to India next month for 2 months . Can she carry 8 injection with her in flight . Any one experience and guidance will help me lot .
Rajuguide
in
PMRGCAuk
3 years ago
Actemra Side effects
Due to a mix up between my doctor and pharmacy I have not had my
Actemra
for 2.5 weeks. I usually was having one shot weekly. Has anyone had side effects from stopping
Actemra
? I feel very tired but I am not sure if that is my GCA or the loss of that drug. I am on 7 mg prednisone daily.
Due to a mix up between my doctor and pharmacy I have not had my
Actemra
for 2.5 weeks. I usually was having one shot weekly. Has anyone had side effects from stopping
Actemra
? I feel very tired but I am not sure if that is my GCA or the loss of that drug. I am on 7 mg prednisone daily.
alvertta
in
PMRGCAuk
3 years ago
Pressure on eye while reading and watching tv , is common in GCA ?
My wife 71 on
actemra
and prednisone from last 3 months for GCA . On watching tv or reading , she get pressure on eye and ear . Eye are checked by two eye dr it seems normal . Is this can be due to GCA ? Is this normally experienced by GCA patients ?
My wife 71 on
actemra
and prednisone from last 3 months for GCA . On watching tv or reading , she get pressure on eye and ear . Eye are checked by two eye dr it seems normal . Is this can be due to GCA ? Is this normally experienced by GCA patients ?
Rajuguide
in
PMRGCAuk
3 years ago
no Actemra
Been on
Actemra
for 9 months. Finally kicked in and was helping me feel better. This week my appt. for infusion was cancelled. The
Actemra
is on back order and had to get. All of the IV is being used for treating Covid patients here in the US. I can't take the shots.
Been on
Actemra
for 9 months. Finally kicked in and was helping me feel better. This week my appt. for infusion was cancelled. The
Actemra
is on back order and had to get. All of the IV is being used for treating Covid patients here in the US. I can't take the shots.
phebamom
in
PMRGCAuk
3 years ago
Tocilizumab/Actemra extension to March 2022
Hi, I have searched past posts and can't find it anywhere, but am pretty sure someone posted that TCZ had been extended to March 2022. I am seeing my consultant (for the first time EVER) tomorrow, and feel I need to back up this statement. Can anyone help. I am wondering if it was a response to another
Hi, I have searched past posts and can't find it anywhere, but am pretty sure someone posted that TCZ had been extended to March 2022. I am seeing my consultant (for the first time EVER) tomorrow, and feel I need to back up this statement. Can anyone help. I am wondering if it was a response to another
Sophiestree
in
PMRGCAuk
2 years ago
Can not stand prednisone anymore. Can I get off the last 5 mg. adap?
I need off and
actemra
works well for me. All input appreciated.🙏
I need off and
actemra
works well for me. All input appreciated.🙏
Aleish
in
PMRGCAuk
3 years ago
Keeping Tocilizumab (and insulin, and food!) cool in a powercut
I have stored my supply of Ro -
Actemra
in a coolbox in the boot of my car (along with food items that also needed to be kept chilled) because the temperature outside the house was as cool as my fridge.
I have stored my supply of Ro -
Actemra
in a coolbox in the boot of my car (along with food items that also needed to be kept chilled) because the temperature outside the house was as cool as my fridge.
Suzita76
in
NRAS
2 years ago
PMR pain vs DDD pain
I've been on
Actemra
off & on (mostly on) since early 2020. Discontinued prednisone July 2021. Braces on knees, walking helps lower back, P.T. & pain rx is all helping, except nothing helps pain in both shoulders and arms.
I've been on
Actemra
off & on (mostly on) since early 2020. Discontinued prednisone July 2021. Braces on knees, walking helps lower back, P.T. & pain rx is all helping, except nothing helps pain in both shoulders and arms.
Spanky2019
in
PMRGCAuk
3 years ago
Dosing off prednisone.
I am on 5 mgs prednisone and on
actemra
. I am having trouble getting off 4 yrs prednisone. Working with endo but she is too main stream. Gaia has an Adrenal supplement and I figure there are many ways to help get my numbers better while trying to get off prednisone. I am in pain all the time.
I am on 5 mgs prednisone and on
actemra
. I am having trouble getting off 4 yrs prednisone. Working with endo but she is too main stream. Gaia has an Adrenal supplement and I figure there are many ways to help get my numbers better while trying to get off prednisone. I am in pain all the time.
Leeleep
in
PMRGCAuk
3 years ago
KEVZARA® (sarilumab)
My rheumy is switching me to that because
Actemra
1) doesn't interact well with my recently-diagnose diverticulitis and 2) has been approved for Covid (and is, thus, harder to get). It sounds like Kevzara is mostly for RA.
My rheumy is switching me to that because
Actemra
1) doesn't interact well with my recently-diagnose diverticulitis and 2) has been approved for Covid (and is, thus, harder to get). It sounds like Kevzara is mostly for RA.
winfong
in
PMRGCAuk
3 years ago
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