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Breast pain
Feels like PMS but I'm 73 and been tapering Prednisone but today took 4th shot
Actemra
. Any other ladies getting thus side effect. Taking shit weekly. Tomorrow I will be at 20 mgs prednisone for week. Been tapering 5 mgs weekly since the
Actemra
. Feeling awful uncomfortable today.
Feels like PMS but I'm 73 and been tapering Prednisone but today took 4th shot
Actemra
. Any other ladies getting thus side effect. Taking shit weekly. Tomorrow I will be at 20 mgs prednisone for week. Been tapering 5 mgs weekly since the
Actemra
. Feeling awful uncomfortable today.
Leeleep
in
PMRGCAuk
7 years ago
Any Actemra experience?
Saw rheumie Friday who wants to try
Actemra
(good news is insurance will cover it). It's rather scary as Prednisone is a known entity. Does anyone have firsthand experience with
Actemra
? Thanks.
Saw rheumie Friday who wants to try
Actemra
(good news is insurance will cover it). It's rather scary as Prednisone is a known entity. Does anyone have firsthand experience with
Actemra
? Thanks.
PMR2011
in
PMRGCAuk
7 years ago
Angiogram
On 25mgs Prednisone and have had third
Actemra
shot . I should get an angiogram. Anyone here that can share that experience that had PMRGCA? I have to use nitroglycerin and I'm 73. Thinking that when inflammation is under control I won't get these attacks. I eat fat free and low everything.
On 25mgs Prednisone and have had third
Actemra
shot . I should get an angiogram. Anyone here that can share that experience that had PMRGCA? I have to use nitroglycerin and I'm 73. Thinking that when inflammation is under control I won't get these attacks. I eat fat free and low everything.
Leeleep
in
PMRGCAuk
7 years ago
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Actemra
Hi everyone I am Meegan 54years and I think on my 48th infusion of
Actemra
.
Hi everyone I am Meegan 54years and I think on my 48th infusion of
Actemra
.
Megsy54
in
NRAS
7 years ago
The damage unchecked PMR can do........
If it's confirmed there may be an argument for
Actemra
, she said. I apparently need something stronger to knock out the inflammation. Any shared experience would be welcome, hardly dare google yet. You wonder about all the undiagnosed months- years maybe. Keep taking the tablets!
If it's confirmed there may be an argument for
Actemra
, she said. I apparently need something stronger to knock out the inflammation. Any shared experience would be welcome, hardly dare google yet. You wonder about all the undiagnosed months- years maybe. Keep taking the tablets!
SheffieldJane
in
PMRGCAuk
7 years ago
My journey continues
If all goes to plan my doctor expects that I should be off steroids by Christmas and off
Actemra
by April 2018. The puffiness in my fingers has gone down, my range of motion in my arms has improved and I lost some weight.
If all goes to plan my doctor expects that I should be off steroids by Christmas and off
Actemra
by April 2018. The puffiness in my fingers has gone down, my range of motion in my arms has improved and I lost some weight.
Marie1479
in
PMRGCAuk
7 years ago
Calling ALL patients on Actemra/tocilizumab, wherever you are!
John Mills of Vasculitis UK is urgently seeking anecdotal evidence to present at a NICE meeting over the use of
Actemra
/tocilizumab in GCA.
John Mills of Vasculitis UK is urgently seeking anecdotal evidence to present at a NICE meeting over the use of
Actemra
/tocilizumab in GCA.
PMRpro
Ambassador
in
PMRGCAuk
7 years ago
White cell counts on Actemra
I have been doing a bit of research on my bloodwork and have noticed something you folk on
Actemra
might like. The last couple if infusions of
Actemra
I have received, i have had the dosage lowered. I started at 600mg IV q4weeks (7 months), 2 have been at 480mg and the last at 400mg.
I have been doing a bit of research on my bloodwork and have noticed something you folk on
Actemra
might like. The last couple if infusions of
Actemra
I have received, i have had the dosage lowered. I started at 600mg IV q4weeks (7 months), 2 have been at 480mg and the last at 400mg.
dwsurquhart
in
NRAS
7 years ago
Any have dizziness/light headedness?
And from the USA and on the
actemra
infusions monthly...my dosage is 386 a month. In 1 1/2 years I have found only one other person who has GCA so when I found this group they was a real blessing. I'm wondering if anyone else experiences a fair amount of light headedness/dizziness?
And from the USA and on the
actemra
infusions monthly...my dosage is 386 a month. In 1 1/2 years I have found only one other person who has GCA so when I found this group they was a real blessing. I'm wondering if anyone else experiences a fair amount of light headedness/dizziness?
Buddyk
in
PMRGCAuk
7 years ago
Actemra and Prednisone and next reduction
So after 6 shots of
Actemra
down to 12.5 with an ESR of 5 and CRP of 1. For me it's a miracle. Been on each reduction 2 weeks. Following protocol. Love when New Rhuemy says "12.5 what do you think"?
So after 6 shots of
Actemra
down to 12.5 with an ESR of 5 and CRP of 1. For me it's a miracle. Been on each reduction 2 weeks. Following protocol. Love when New Rhuemy says "12.5 what do you think"?
Nap1
in
PMRGCAuk
7 years ago
I need help deciding:
*How long were you on
Actemra
. Did you stop and have to re-start? *Were there flares while you were taking
Actemra
? What is your theory about why you flared? *When you stopped the Prednisone did you also stop the
Actemra
or did you continue with the
Actemra
alone?
*How long were you on
Actemra
. Did you stop and have to re-start? *Were there flares while you were taking
Actemra
? What is your theory about why you flared? *When you stopped the Prednisone did you also stop the
Actemra
or did you continue with the
Actemra
alone?
Hindags
in
PMRGCAuk
7 years ago
Treatment of Systemic Onset JIA with Actemra (Tocilizumab)
Any case studies of
Actemra
/ medicine for exactly 2 year old child SJIA ? 2.) what are chances of remission & how many injections may be needed before remission? 3.) what is chance of re occurring of symptoms after some time in teenage/adulthood ? 4.)
Any case studies of
Actemra
/ medicine for exactly 2 year old child SJIA ? 2.) what are chances of remission & how many injections may be needed before remission? 3.) what is chance of re occurring of symptoms after some time in teenage/adulthood ? 4.)
Siva_Uddanti
in
JIA-at-NRAS
7 years ago
Taper Update
I successfully tapered to 6MGs (dropped 1/2mg) and have continued my weekly
Actemra
shots. Here's an interesting question and observation. The year before I was diagnosed with PMR my nails were a mess. Splitting, ridges and very thin.
I successfully tapered to 6MGs (dropped 1/2mg) and have continued my weekly
Actemra
shots. Here's an interesting question and observation. The year before I was diagnosed with PMR my nails were a mess. Splitting, ridges and very thin.
Marie1479
in
PMRGCAuk
7 years ago
Enan Illuc
I am now on 14 mg of Prednisone and
Actemra
. I am retired and married. My education includes an MBA and a D.Sc. (AM).
I am now on 14 mg of Prednisone and
Actemra
. I am retired and married. My education includes an MBA and a D.Sc. (AM).
enan-illuc
in
PMRGCAuk
7 years ago
Recovered from Flare, tapering resumes...
I requested my dr. to run the bloodwork again and if the same result I told her I wanted to rule out
Actemra
first before going on Plaquenil. Turns out I don't have Lupus.
Actemra
causes low C3 &C4 levels mimicking Lupus and some of the disease's symptoms.
I requested my dr. to run the bloodwork again and if the same result I told her I wanted to rule out
Actemra
first before going on Plaquenil. Turns out I don't have Lupus.
Actemra
causes low C3 &C4 levels mimicking Lupus and some of the disease's symptoms.
Marie1479
in
PMRGCAuk
7 years ago
Medicare and Actemra
Is Medicare coverage available for
Actemra
?
Is Medicare coverage available for
Actemra
?
Aleish
in
PMRGCAuk
7 years ago
How much to push yourself
I've had GCA for 16 months....took prednisone and progressed to only
actemra
infusions once a month. My main problem has been extreme fatigue. I have been feeling better the last 2 weeks. I am fairly strong until middle of afternoon then begin to feel fatigued again.
I've had GCA for 16 months....took prednisone and progressed to only
actemra
infusions once a month. My main problem has been extreme fatigue. I have been feeling better the last 2 weeks. I am fairly strong until middle of afternoon then begin to feel fatigued again.
Buddyk
in
PMRGCAuk
7 years ago
Prednisone taper, breast pain
I am tapering themprednisone while on
Actemra
infusions...also on hrt. Has anyone experienced breast pain while tapering down to 5m?
I am tapering themprednisone while on
Actemra
infusions...also on hrt. Has anyone experienced breast pain while tapering down to 5m?
Klah
in
PMRGCAuk
7 years ago
Need help, I am very confused
Isn't
Actemra
better for me ?
Isn't
Actemra
better for me ?
Ihsandaakur
in
PMRGCAuk
7 years ago
Anyone outside the USA on actemra yet? Looking for reactions to the drug here in USA and abroad. Heard anything PMRGCApro?
So I had my third shot of
Actemra
on Thursday. Luckily I was approved for funding. I want to mention the side effects which I found after the third shot which is more muscle fatigue than the steroid myopathy rather debilitating. Lots of muscle pain and headache.
So I had my third shot of
Actemra
on Thursday. Luckily I was approved for funding. I want to mention the side effects which I found after the third shot which is more muscle fatigue than the steroid myopathy rather debilitating. Lots of muscle pain and headache.
Nap1
in
PMRGCAuk
7 years ago
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