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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
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
3 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
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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
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
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
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
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
3 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
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
Acterma - Side Effects
I am taking
Actemra
after having been diagnosed with GCA several months ago. A week ago, I developed bags under my eyes and swelling on both my feet. Has anyone else experienced this? Is it a common side effect of the medication?
I am taking
Actemra
after having been diagnosed with GCA several months ago. A week ago, I developed bags under my eyes and swelling on both my feet. Has anyone else experienced this? Is it a common side effect of the medication?
Emira1
in
PMRGCAuk
3 years ago
Terrible timing - 2 hour power cut this morning when I had 3 fruit cakes in the oven!
Fortunately, I took the paperwork (that comes with the Ro-
actemra
injection packs) and passed them on to the nurse as proof that I needed the non-live jab. (I wasn’t intending to marzipan/ ice the fruit cakes but the big dents in the middle sadly make it necessary! Hey ho) .
Fortunately, I took the paperwork (that comes with the Ro-
actemra
injection packs) and passed them on to the nurse as proof that I needed the non-live jab. (I wasn’t intending to marzipan/ ice the fruit cakes but the big dents in the middle sadly make it necessary! Hey ho) .
Suzita76
in
PMRGCAuk
3 years ago
An update …
I continued on and at the point of reducing to .5mgs, just after my first 4weekly
Actemra
, I started to feel the old signs. That was about two weeks ago. I pressed on with .5mgs, due for my second 4 weekly
Actemra
on Saturday, but decided to check my blood to see what was going on. Bingo!
I continued on and at the point of reducing to .5mgs, just after my first 4weekly
Actemra
, I started to feel the old signs. That was about two weeks ago. I pressed on with .5mgs, due for my second 4 weekly
Actemra
on Saturday, but decided to check my blood to see what was going on. Bingo!
LemonZest11
in
PMRGCAuk
3 years ago
Update on my GCA/Large vessel vasculitis journey: off pred and back to normal (with TCZ)
I am off prednisolone since mid of July (i.e., after 5 months) and continue with weekly
Actemra
injections. I have fortunately no side effects from
Actemra
(neither subjective nor indicated by blood parameters).
I am off prednisolone since mid of July (i.e., after 5 months) and continue with weekly
Actemra
injections. I have fortunately no side effects from
Actemra
(neither subjective nor indicated by blood parameters).
DeepThought2
in
PMRGCAuk
3 years ago
Visit to rheumy today re: vision loss GCA
After 4-6 weeks, he probably will reintroduce
Actemra
and then hope to taper.
After 4-6 weeks, he probably will reintroduce
Actemra
and then hope to taper.
Grammy80
in
PMRGCAuk
3 years ago
Change in medications
I also have been on Enbrel, Humira and recently started
Actemra
. In May I was in the hospital with a Pulmonary Embolism and a DVT on my right knee. I was supposed to have surgery on my right knee but it got postponed until 8/16.
I also have been on Enbrel, Humira and recently started
Actemra
. In May I was in the hospital with a Pulmonary Embolism and a DVT on my right knee. I was supposed to have surgery on my right knee but it got postponed until 8/16.
beasehorn
in
NRAS
3 years ago
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