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Chest infection
Anyway I have GCA since November 2017 also started injections in early February
Actemra
. All was going well until I went down to 8 Mg steroids it was freaky very emotional etc anyway, due to reading on this site I went back to 9 mg I have been much better mentally?
Anyway I have GCA since November 2017 also started injections in early February
Actemra
. All was going well until I went down to 8 Mg steroids it was freaky very emotional etc anyway, due to reading on this site I went back to 9 mg I have been much better mentally?
Lucylooloo
in
PMRGCAuk
6 years ago
GCA, Actemra and feeling exhausted
I have been so much better since taking Tocilizumab but I still get days of aching all over and feeling really exhausted. I am really not my old self and wonder if I ever will be . My husband and I are looking after an 11 month grandchild which means a 2 1/2 hr journey each way in the rush hour - leaving
I have been so much better since taking Tocilizumab but I still get days of aching all over and feeling really exhausted. I am really not my old self and wonder if I ever will be . My husband and I are looking after an 11 month grandchild which means a 2 1/2 hr journey each way in the rush hour - leaving
christine2715
in
PMRGCAuk
6 years ago
PMR, GCA, Fibromyalgia
Now I self administer a shot of
Actemra
every week and take 2 mg. Rayos (Prednisone) a night. Thank you for your reply.
Now I self administer a shot of
Actemra
every week and take 2 mg. Rayos (Prednisone) a night. Thank you for your reply.
Dream21
in
PMRGCAuk
6 years ago
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Medicare accepted my Actemra infusion claim!
I truly at this point believe that I made the right decision on going on the
Actemra
therapy. Three days after my infusionI was able to drop from 30mgs prednisone to 20mgs. This Sunday I will be able to drop down another 5mgs to 15mgs.
I truly at this point believe that I made the right decision on going on the
Actemra
therapy. Three days after my infusionI was able to drop from 30mgs prednisone to 20mgs. This Sunday I will be able to drop down another 5mgs to 15mgs.
CRW-68
in
PMRGCAuk
6 years ago
actemra
Diagnosed with PMR late Febr 2018 & GCA in April--currently taking 50 mg of prednisone daily. Started on Acterma injections, have had 4 infections, my question is for 2 days after each injection I'm very lightheaded, dizzy and fatigued. Is anyone else experiencing this, and has your body eventually
Diagnosed with PMR late Febr 2018 & GCA in April--currently taking 50 mg of prednisone daily. Started on Acterma injections, have had 4 infections, my question is for 2 days after each injection I'm very lightheaded, dizzy and fatigued. Is anyone else experiencing this, and has your body eventually
pwalker801
in
PMRGCAuk
6 years ago
First Actemra infusion today
If anyone would be interested I could keep everyone updated on my
Actemra
journey.
If anyone would be interested I could keep everyone updated on my
Actemra
journey.
CRW-68
in
PMRGCAuk
6 years ago
Actemra update
After re-reading my Rheumatologist’s chart note I need to correct my tritration schedule that I posted earlier. So here goes. I am currently on 30 mgs of Prednisone. This Sunday I drop 10 mgs to 20 mgs for two weeks. I then drop down to 15 mgs for another two weeks. I will then have my appointment
After re-reading my Rheumatologist’s chart note I need to correct my tritration schedule that I posted earlier. So here goes. I am currently on 30 mgs of Prednisone. This Sunday I drop 10 mgs to 20 mgs for two weeks. I then drop down to 15 mgs for another two weeks. I will then have my appointment
CRW-68
in
PMRGCAuk
6 years ago
I give up!!!!!!! discouraged
sooooooooooo----Prednisone, GCA and
Actemra
all thave dizziness and lightheaded, as a side effect, then throw in PMR and fatigue, no wonder I feel like awful most of the time.
sooooooooooo----Prednisone, GCA and
Actemra
all thave dizziness and lightheaded, as a side effect, then throw in PMR and fatigue, no wonder I feel like awful most of the time.
pwalker801
in
PMRGCAuk
6 years ago
Tapering duration for GCA and doses of Pred over time ?
unscientifically' - but I am interested in where others at 'at' with their tapering at various points in time say at 1, 2, 3, 4, years or more - stated simply as: I am (for example) taking
15.5mg approx 1.5 years after my diagnosis of GCA
(using no other meds like steroid sparing agents such as
Actemra
unscientifically' - but I am interested in where others at 'at' with their tapering at various points in time say at 1, 2, 3, 4, years or more - stated simply as: I am (for example) taking
15.5mg approx 1.5 years after my diagnosis of GCA
(using no other meds like steroid sparing agents such as
Actemra
Rimmy
in
PMRGCAuk
6 years ago
Day two of raised dose prednisone
Definitely was in a flare because of coming off the
Actemra
. The doc should have told me to go up a little on prednisone when off the
Actemra
. She really should not have taken me off
Actemra
.
Definitely was in a flare because of coming off the
Actemra
. The doc should have told me to go up a little on prednisone when off the
Actemra
. She really should not have taken me off
Actemra
.
Leeleep
in
PMRGCAuk
6 years ago
First Actemra infusion update
I made it! From beginning to end I was at the infusion center for 3 1/2 hours. All went very smoothly and without any reactions. I am now thankfully on track to reiterate down 10 mgs this Sunday, and if all continues to go well, another 10 mgs in another 2 weeks. My schedule had been to reiterate
I made it! From beginning to end I was at the infusion center for 3 1/2 hours. All went very smoothly and without any reactions. I am now thankfully on track to reiterate down 10 mgs this Sunday, and if all continues to go well, another 10 mgs in another 2 weeks. My schedule had been to reiterate
CRW-68
in
PMRGCAuk
6 years ago
Suffering severely. Cortisol too low.
I’m staying on 7.5 prednisone and have taken my
Actemra
last week and this week. So I now have to wait a number of weeks for the
Actemra
to start working again, but I think she should be raising my prednisone. I hate the idea of it but I’m getting desperate because I’m so I’ll.
I’m staying on 7.5 prednisone and have taken my
Actemra
last week and this week. So I now have to wait a number of weeks for the
Actemra
to start working again, but I think she should be raising my prednisone. I hate the idea of it but I’m getting desperate because I’m so I’ll.
Leeleep
in
PMRGCAuk
6 years ago
Emotional and getting muscle spasms
Hi I was just wondering if when tapering down (came from 60mg now at 8mg, also am on 162
Actemra
weekly) came down to 8mg last Friday. I am finding I am fearce emotional 😩😪 also am getting muscle spasam inside my body they don’t last long but can be uncomfortable.
Hi I was just wondering if when tapering down (came from 60mg now at 8mg, also am on 162
Actemra
weekly) came down to 8mg last Friday. I am finding I am fearce emotional 😩😪 also am getting muscle spasam inside my body they don’t last long but can be uncomfortable.
Lucylooloo
in
PMRGCAuk
6 years ago
More Prednisone or Less Activity🤔
I am taking
Actemra
injections and prednisone. I recently flared, so I am back up to 5m daily, but now stable and feel good.
I am taking
Actemra
injections and prednisone. I recently flared, so I am back up to 5m daily, but now stable and feel good.
Klah
in
PMRGCAuk
6 years ago
Acid reducers
On
Actemra
? Anyone taking acid controllers such as proton pump inhibitors or h2-2 inhibitors? My rheumy and my gp feel I should be on one. Starting to have a few twinges of pain. I understand they block nutrient absorption and even contribute to fractures over time. I also have osteoporosis.
On
Actemra
? Anyone taking acid controllers such as proton pump inhibitors or h2-2 inhibitors? My rheumy and my gp feel I should be on one. Starting to have a few twinges of pain. I understand they block nutrient absorption and even contribute to fractures over time. I also have osteoporosis.
gtate1914
in
PMRGCAuk
6 years ago
groin pull
history---diagnosed PMR Febr 2018, GCA April 2018, on 55 mg of prednisone, just took my 2nd shot of
Actemra
this morning.
history---diagnosed PMR Febr 2018, GCA April 2018, on 55 mg of prednisone, just took my 2nd shot of
Actemra
this morning.
pwalker801
in
PMRGCAuk
6 years ago
Actemra
The rheumatologist wants to start
Actemra
, the preliminary research shows class action law suits and many side effects..... would really appreciate input---thanks
The rheumatologist wants to start
Actemra
, the preliminary research shows class action law suits and many side effects..... would really appreciate input---thanks
pwalker801
in
PMRGCAuk
6 years ago
Sed rates and IVIG (gammagobulin infusion).
Normally I’m normal low sed rate because I’m being treated with low dose prednisone and
Actemra
. My sed rate day after infusion. Came back at 101. Trying to get requisition and in redo sed rate today. Just wondering if anyone knows if IVIG will cause this to happen.
Normally I’m normal low sed rate because I’m being treated with low dose prednisone and
Actemra
. My sed rate day after infusion. Came back at 101. Trying to get requisition and in redo sed rate today. Just wondering if anyone knows if IVIG will cause this to happen.
Leeleep
in
PMRGCAuk
6 years ago
Update- showing articles to rheumy
She looked at my temples, etc. she was emphatic about getting me down and off the prednisone, wanted to add
Actemra
if the tapering isn’t working. This is her taper: I was at 37.5 when I saw her Immediately drop to 30 In 8 days drop to 25.
She looked at my temples, etc. she was emphatic about getting me down and off the prednisone, wanted to add
Actemra
if the tapering isn’t working. This is her taper: I was at 37.5 when I saw her Immediately drop to 30 In 8 days drop to 25.
Mstiles
in
PMRGCAuk
6 years ago
ACTEMRA Update
I did have great hopes for the
actemra
, even though the cost would have left me with zilch money. It started off so good. Now the reaction is so bad and my numbers are increasing, what is the point? I hope my side effects from prednisolone are not as bad as they were before being a lower dosage.
I did have great hopes for the
actemra
, even though the cost would have left me with zilch money. It started off so good. Now the reaction is so bad and my numbers are increasing, what is the point? I hope my side effects from prednisolone are not as bad as they were before being a lower dosage.
shazstep
in
PMRGCAuk
6 years ago
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