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Travelling with refrigerated Meds
Hi fellow travellers, Afew weeks ago I asked if anyone had a fool proof way of carrying refrigerated meds internationally, in my case Actemra, from Aus to UK. I thought I’d let you know that everything went without a hitch and I was way over prepared!! Firstly I asked my Rheumy to write a letter
Hi fellow travellers, Afew weeks ago I asked if anyone had a fool proof way of carrying refrigerated meds internationally, in my case Actemra, from Aus to UK. I thought I’d let you know that everything went without a hitch and I was way over prepared!! Firstly I asked my Rheumy to write a letter
Happyexplorer
in
PMRGCAuk
2 years ago
Sleep Apnea
Does any one have issues with sleep apnea with this illness? PMR 20 years, GCA at least 10. Pred 12 years, Actemra 2 years. My blood pressure goes up when I sleep. I am scheduled to be tested for sleep apnea. I am wondering if this is why I can't get any remission or control of this illness?
Does any one have issues with sleep apnea with this illness? PMR 20 years, GCA at least 10. Pred 12 years, Actemra 2 years. My blood pressure goes up when I sleep. I am scheduled to be tested for sleep apnea. I am wondering if this is why I can't get any remission or control of this illness?
phebamom
in
PMRGCAuk
2 years ago
When does Pred decrease let adrenals kick in?
Hi -- I'm at 6 mg down from 60mg, hopefully with a good shot at zero by this fall. Actemra, too, once per week. So far, the move from 7mg to 6mg has been the hardest. Lots of fatigue over three days. It's a 14 percent decrease which isn't a small amount. I am sure it varies, but anyone know when
Hi -- I'm at 6 mg down from 60mg, hopefully with a good shot at zero by this fall. Actemra, too, once per week. So far, the move from 7mg to 6mg has been the hardest. Lots of fatigue over three days. It's a 14 percent decrease which isn't a small amount. I am sure it varies, but anyone know when
GCAfiveyearrelapse
in
PMRGCAuk
2 years ago
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ESR as a predictor of disease Activity while on Actemra
Hi to all you knowledgeable good people. First time post although I've been following for a bit now. I'll try to be succinct. December 2019 went for routine blood work prior to cardiology appt. CRP 84 and the game was afoot.... I had no symptoms at all but within a few weeks had battery of tests
Hi to all you knowledgeable good people. First time post although I've been following for a bit now. I'll try to be succinct. December 2019 went for routine blood work prior to cardiology appt. CRP 84 and the game was afoot.... I had no symptoms at all but within a few weeks had battery of tests
Jumpe
in
PMRGCAuk
2 years ago
Actemra injection skin reaction
A couple of weeks ago I asked if anyone had the skin reaction to weekly Actemra injections because I was getting a large itchy red rash right across my thigh that lasted about 4 days. Its a very common reaction apparently. I was advised to take an antihistamine (Loratadine) but wasn't happy with that
A couple of weeks ago I asked if anyone had the skin reaction to weekly Actemra injections because I was getting a large itchy red rash right across my thigh that lasted about 4 days. Its a very common reaction apparently. I was advised to take an antihistamine (Loratadine) but wasn't happy with that
HappyDiamonds
in
PMRGCAuk
2 years ago
After going off prednisone for GCA, how long do you continue with actemra?
hi..back with another question. I know this nay be so individualized that an answer might not be possible. But...on average after tapering off prednisone with actemra, how long do you continue taking actemra alone? Is it determined by when you have no more flares? How do they tell GCA has gone into remission
hi..back with another question. I know this nay be so individualized that an answer might not be possible. But...on average after tapering off prednisone with actemra, how long do you continue taking actemra alone? Is it determined by when you have no more flares? How do they tell GCA has gone into remission
Cobalt2sister
in
PMRGCAuk
2 years ago
Checking in: Rheumy diagnosis GCA
well, dear folks, after all this time working with Neuro-opth and retina specialist they were uncertain if GCA since negative biopsy. Had strongly considered TIA since I had 2 in Aug but all MRI etc clear. So she referred me to rheumatlogist. Today rheumy says GCA and ordered CT to check aorta for involvement
well, dear folks, after all this time working with Neuro-opth and retina specialist they were uncertain if GCA since negative biopsy. Had strongly considered TIA since I had 2 in Aug but all MRI etc clear. So she referred me to rheumatlogist. Today rheumy says GCA and ordered CT to check aorta for involvement
Cobalt2sister
in
PMRGCAuk
2 years ago
Actemra and chest discomfort
Tomorrow will be my third injection of Actemra as I attempt to taper from 40 mg daily down to 30 mg daily. I have more headaches than usual but nothing I can’t live with. But for the last two weeks I’ve had what feels like a big gas bubble in my chest and through to my back (right side). Anyone else
Tomorrow will be my third injection of Actemra as I attempt to taper from 40 mg daily down to 30 mg daily. I have more headaches than usual but nothing I can’t live with. But for the last two weeks I’ve had what feels like a big gas bubble in my chest and through to my back (right side). Anyone else
91066Jackson
in
PMRGCAuk
2 years ago
Dental work do I miss injection
Hi guys. Can anyone helper advise if possible? I am having a root filling and was wondering if I am to stop my Actemra injections prior to this. I’m not sure if it counts as invasive surgery. I’ve tried calling Rheumy but just answering machine . Thanks for your help. Enjoy the lovely bank holiday.
Hi guys. Can anyone helper advise if possible? I am having a root filling and was wondering if I am to stop my Actemra injections prior to this. I’m not sure if it counts as invasive surgery. I’ve tried calling Rheumy but just answering machine . Thanks for your help. Enjoy the lovely bank holiday.
Typsey
in
NRAS
2 years ago
2nd booster, fourth shot, all is well
Was a bit nervous getting booster shot ( worried about reactions). Received my fourth shot Friday, bit of sore arm, and flushed face in evening were only after affects. I am currently on Actemra, 9 mg prednisone, and 20mg methotrexate. I stopped the methotrexate prior week and again this week, in hoping
Was a bit nervous getting booster shot ( worried about reactions). Received my fourth shot Friday, bit of sore arm, and flushed face in evening were only after affects. I am currently on Actemra, 9 mg prednisone, and 20mg methotrexate. I stopped the methotrexate prior week and again this week, in hoping
Elephants2019
in
PMRGCAuk
2 years ago
What a difference a consultant makes!!
After having my first face to face appt in Dec 2021 (after diagnosis in Oct 2020) which went really well, sadly that particular registrar then got a consultants appt at Kings College. I think he was shocked I had not seen anyone and so arranged two futher appts for me. One which was yesterday was with
After having my first face to face appt in Dec 2021 (after diagnosis in Oct 2020) which went really well, sadly that particular registrar then got a consultants appt at Kings College. I think he was shocked I had not seen anyone and so arranged two futher appts for me. One which was yesterday was with
Sophiestree
in
PMRGCAuk
2 years ago
My GCA Story
Hi everyone. Last June I became a member of the GCA club, though not by choice. I wanted to share my story in case others experience somethig similar. It began like a common virus; sore throat, runny nose, mild fever of 100.5. I thought it might be covid, so got tested and was negative. I had been
Hi everyone. Last June I became a member of the GCA club, though not by choice. I wanted to share my story in case others experience somethig similar. It began like a common virus; sore throat, runny nose, mild fever of 100.5. I thought it might be covid, so got tested and was negative. I had been
Preacherball
in
PMRGCAuk
2 years ago
Headache in temples
I was diagnosed with GCA in 2018 but I never had the headache in my temples as a symptom. For the last 2 months I have had sharp pain in both temples and then will subside to more of an ache. My question is, could this be a symptom of GCA even though I have been treated with prednisone and Actemra
I was diagnosed with GCA in 2018 but I never had the headache in my temples as a symptom. For the last 2 months I have had sharp pain in both temples and then will subside to more of an ache. My question is, could this be a symptom of GCA even though I have been treated with prednisone and Actemra
luv2read
in
PMRGCAuk
2 years ago
Curveball: Actemra and Fosamax!
I got a second opinion on my PMR situation and the new doc immediately wanted to put me on Actemra and Fosamax. I didn't agree to do it yet, so I could query folks here about it and think on it. My first and current rheumatologist said it was unlikely that I had GCA but the second opinion guy thought
I got a second opinion on my PMR situation and the new doc immediately wanted to put me on Actemra and Fosamax. I didn't agree to do it yet, so I could query folks here about it and think on it. My first and current rheumatologist said it was unlikely that I had GCA but the second opinion guy thought
Greytree
in
PMRGCAuk
2 years ago
Long distance travel with Actemra?
Apologies if this seems lightweight, in view of the serious stresses others on this forum are suffering, but does anyone have recent info on travelling with several months supply of ACTEMRA (TCZ)? I am coming from Aus to UK for 3 mths and purchased a special medi-cold box which keeps the injections
Apologies if this seems lightweight, in view of the serious stresses others on this forum are suffering, but does anyone have recent info on travelling with several months supply of ACTEMRA (TCZ)? I am coming from Aus to UK for 3 mths and purchased a special medi-cold box which keeps the injections
Happyexplorer
in
PMRGCAuk
2 years ago
Has anyone had Covid whilst on Actemra and 20mg Prednisone?
Fingers crossed I don't get Covid but it is rampant in the area I live so am being very cautious and feeling rather vulnerable. I have GCA and am at the stage of reducing from 60 to 20mg Pred and having weekly Actemra injections. Just wanted to ask if anyone has had Covid whilst taking the same meds
Fingers crossed I don't get Covid but it is rampant in the area I live so am being very cautious and feeling rather vulnerable. I have GCA and am at the stage of reducing from 60 to 20mg Pred and having weekly Actemra injections. Just wanted to ask if anyone has had Covid whilst taking the same meds
MarksPoint
in
PMRGCAuk
2 years ago
Still have headache on 5 mg prednisone
Here comes the complainer again. I wrote over the weekend that I was on 4 mg pred and Actemra infusions. When I went on 4 mg I had a constant headache for 2 weeks. I was fine on 5. I called doctor and was told to go back up to 5 and stay til my appt in 2 weeks. I started 5 two days ago and was fine the
Here comes the complainer again. I wrote over the weekend that I was on 4 mg pred and Actemra infusions. When I went on 4 mg I had a constant headache for 2 weeks. I was fine on 5. I called doctor and was told to go back up to 5 and stay til my appt in 2 weeks. I started 5 two days ago and was fine the
nallufl24
in
PMRGCAuk
2 years ago
Pred and Actemra
Thank you to those of you who answered my questions last week about restarting Prednisone because all my symptoms had returned whilst on Actemra injections alone. I had the 3- monthly bloods taken at the medical centre last Tuesday so that my rheumatologist would see what was going on after 10 weeks
Thank you to those of you who answered my questions last week about restarting Prednisone because all my symptoms had returned whilst on Actemra injections alone. I had the 3- monthly bloods taken at the medical centre last Tuesday so that my rheumatologist would see what was going on after 10 weeks
Mahler2
in
PMRGCAuk
2 years ago
Numb toes
Anyone else with GCA having issues with toes going numb? My toes go numb when I stand for any length of time, especially standing in my sewing room, and while cooking supper. PMR/GCA at least 20 years, with relapsing and remission. On 5mg. prednisone and monthly infusion of Actemra. Age 66
Anyone else with GCA having issues with toes going numb? My toes go numb when I stand for any length of time, especially standing in my sewing room, and while cooking supper. PMR/GCA at least 20 years, with relapsing and remission. On 5mg. prednisone and monthly infusion of Actemra. Age 66
phebamom
in
PMRGCAuk
2 years ago
Ear pressure and blockage in gca
My wife is on gca treatment from last 10 months ,she took 60 mg tapering prednisone with Actemra weekly in starting 4 months , now , only on prednisone 9 mg , got two flare at 10 mg in between, and went back to 40 mg Her , main symptom are, pressure and blockage on both side of ear ( but no problem
My wife is on gca treatment from last 10 months ,she took 60 mg tapering prednisone with Actemra weekly in starting 4 months , now , only on prednisone 9 mg , got two flare at 10 mg in between, and went back to 40 mg Her , main symptom are, pressure and blockage on both side of ear ( but no problem
Rajuguide
in
PMRGCAuk
2 years ago
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