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Back up to 40 mg pred
I wrote here how I was down to 10mg pred in 4 months. You all said that was too fast and I didn’t want to believe you. My headaches were coming back so rheumatologist upped it to 15. It’s been 6 days and I still have headaches. Today he upped it to 40mg to get the inflammation under control. Both sed
I wrote here how I was down to 10mg pred in 4 months. You all said that was too fast and I didn’t want to believe you. My headaches were coming back so rheumatologist upped it to 15. It’s been 6 days and I still have headaches. Today he upped it to 40mg to get the inflammation under control. Both sed
nallufl24
in
PMRGCAuk
3 years ago
Any advice on GCA fatigue and treatment?
Hi, I'm new to this forum but hoping to learn from others' experience. Diagnosed with GCA 10 weeks ago, (PET/CT) on 50mg prednisone daily, dropped to 40mg 2 wks ago, tried 20mg methotrexate for 4 weeks but felt terrible so that was stopped. At diagnosis I was still quite active, kayaking and walking
Hi, I'm new to this forum but hoping to learn from others' experience. Diagnosed with GCA 10 weeks ago, (PET/CT) on 50mg prednisone daily, dropped to 40mg 2 wks ago, tried 20mg methotrexate for 4 weeks but felt terrible so that was stopped. At diagnosis I was still quite active, kayaking and walking
Happyexplorer
in
PMRGCAuk
3 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. I have benn to my GP, my eye
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. I have benn to my GP, my eye
luv2read
in
PMRGCAuk
3 years ago
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Feels like thin ice....
Yesterday I cut my Prednisone by 10mg. 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. Not GCA-related, just severely dry eyes so I picked up another
Yesterday I cut my Prednisone by 10mg. 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. Not GCA-related, just severely dry eyes so I picked up another
Grammy80
in
PMRGCAuk
3 years ago
Loosing hope
5 months ❤️the doctors are not sure how I got gbs but they THINK enbrel may have played a role in it so I am never allowed on any anti Tnfs ever again......I have been home just over a year now and I have had flare after flare after flare I have tried three new biologics the most current one being
roactemra
5 months ❤️the doctors are not sure how I got gbs but they THINK enbrel may have played a role in it so I am never allowed on any anti Tnfs ever again......I have been home just over a year now and I have had flare after flare after flare I have tried three new biologics the most current one being
roactemra
994464
in
NRAS
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 ? What other main irritable symptoms continue and experience
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 ? What other main irritable symptoms continue and experience
Rajuguide
in
PMRGCAuk
3 years ago
PMR pain vs DDD pain
Many of you know my history of multiple health issues. 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 do have mild/moderate
Many of you know my history of multiple health issues. 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 do have mild/moderate
Spanky2019
in
PMRGCAuk
3 years ago
Can not stand prednisone anymore. Can I get off the last 5 mg. adap?
On since 2017. I am at 5 mg and really would like to be off as soon as possible. Also on Actrmra. I am not happy with the advice of my endocrinologist. Can I just cut back 1 mg every 2 to 3 weeks Do I need to be at normal levels cortisol snd acth? I I will be just fine without it. My primary care
On since 2017. I am at 5 mg and really would like to be off as soon as possible. Also on Actrmra. I am not happy with the advice of my endocrinologist. Can I just cut back 1 mg every 2 to 3 weeks Do I need to be at normal levels cortisol snd acth? I I will be just fine without it. My primary care
Aleish
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
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
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
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. Medicare only pays for
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. Medicare only pays for
phebamom
in
PMRGCAuk
3 years ago
Dosing off prednisone.
I have not posted in years. My cortisol is low at 2.0 and the ACTH is low at 1.5. 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
I have not posted in years. My cortisol is low at 2.0 and the ACTH is low at 1.5. 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
Leeleep
in
PMRGCAuk
3 years ago
KEVZARA® (sarilumab)
Anybody have any experience with Kevzara for LVV/GCA/PMR? 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. Could find very little
Anybody have any experience with Kevzara for LVV/GCA/PMR? 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. Could find very little
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
Visit to rheumy today re: vision loss GCA
I'd put so much deep thought into the decision of whether I should choose sight or steroids; I chose sight. Today I had my visit with the rheumatologist and brought in the tests from the ophthalmologist that showed the diminished sight over the last 60 days. Initially, my rheumatologist felt it 'unlikely
I'd put so much deep thought into the decision of whether I should choose sight or steroids; I chose sight. Today I had my visit with the rheumatologist and brought in the tests from the ophthalmologist that showed the diminished sight over the last 60 days. Initially, my rheumatologist felt it 'unlikely
Grammy80
in
PMRGCAuk
3 years ago
An update …
I have a Rheumy appointment this afternoon because I started to feel horrible about two weeks ago. She called me yesterday after receiving my latest bloods that showed ESR and CRP had both risen, for the second time. I sat down and did my analysis of what has been going on, and I have my own recommendation
I have a Rheumy appointment this afternoon because I started to feel horrible about two weeks ago. She called me yesterday after receiving my latest bloods that showed ESR and CRP had both risen, for the second time. I sat down and did my analysis of what has been going on, and I have my own recommendation
LemonZest11
in
PMRGCAuk
3 years ago
Change in medications
Hi! I was diagnosed with RA 4 years ago. I have been on Methotrexate the whole time and on Prednisone off and on. 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
Hi! I was diagnosed with RA 4 years ago. I have been on Methotrexate the whole time and on Prednisone off and on. 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
beasehorn
in
NRAS
3 years ago
Update on my GCA/Large vessel vasculitis journey: off pred and back to normal (with TCZ)
I have been diagnosed with GCA/LVV in February of this year. My main symptoms were fever and fatigue and I had CRP values of up to 80 and an ESR of 100. I am living in Germany and here it is a standard scheme to start with pred (40 mg in my case) and Actemra (Tocilizumab) weekly injections. I feel that
I have been diagnosed with GCA/LVV in February of this year. My main symptoms were fever and fatigue and I had CRP values of up to 80 and an ESR of 100. I am living in Germany and here it is a standard scheme to start with pred (40 mg in my case) and Actemra (Tocilizumab) weekly injections. I feel that
DeepThought2
in
PMRGCAuk
3 years ago
Recently diagnosed with GCA. What the hell ! Update !
Hello everyone. It’s been a roller coaster of a ride the last 2 months. I am starting to feel better. I am taking the Actemra and am down to 20 mg of prednisone a day. The headaches had continued and even seemed to get worse. The rheumatologist said my inflammation levels had returned to normal and he
Hello everyone. It’s been a roller coaster of a ride the last 2 months. I am starting to feel better. I am taking the Actemra and am down to 20 mg of prednisone a day. The headaches had continued and even seemed to get worse. The rheumatologist said my inflammation levels had returned to normal and he
GlennStephen
in
PMRGCAuk
3 years ago
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