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The Drama Queen is back!
😕😬 Maybe I did have PMR and it has gone into remission thanks to
Actemra
which really did cure all my symptoms for a while and brought my CRP down to normal for the first time in years. I am still on
Actemra
as Dr. House told me to stay on it till we know for sure.
😕😬 Maybe I did have PMR and it has gone into remission thanks to
Actemra
which really did cure all my symptoms for a while and brought my CRP down to normal for the first time in years. I am still on
Actemra
as Dr. House told me to stay on it till we know for sure.
Gaijin
in
PMRGCAuk
6 years ago
Advice needed- is this normal- should I ride it out longer?
The
Actemra
does make me exhausted. I am not scheduled to go back to Rheumatica until November 29... Thanks for your input- always valuable!
The
Actemra
does make me exhausted. I am not scheduled to go back to Rheumatica until November 29... Thanks for your input- always valuable!
Mks9558
in
PMRGCAuk
6 years ago
Hope or hopeless
On prednisone,
Actemra
, beginners Plaquinil, Forteo and pain meds. Very depressed from pain and unable nor do I want to do things. Cooking is a major challenge and so I don’t do it. Hopeless and sad.
On prednisone,
Actemra
, beginners Plaquinil, Forteo and pain meds. Very depressed from pain and unable nor do I want to do things. Cooking is a major challenge and so I don’t do it. Hopeless and sad.
Leeleep
in
PMRGCAuk
6 years ago
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Sour sweat odor
Or could this be from prednisone and
Actemra
? Or some combination of the 3?
Or could this be from prednisone and
Actemra
? Or some combination of the 3?
GCA_Patien
in
PMRGCAuk
6 years ago
Prednisone VS Methylprednisolone
- she deals there is something else going on - 1) I may not be metabolizing the prednisone in my liver properly 2) may have a pinched nerve or nerve in my neck For number 1 above she wants to put me on 48 mg of methylprednisolone for 1 week then down to 40 mg and stop prednisone now(I am also on
Actemra
- she deals there is something else going on - 1) I may not be metabolizing the prednisone in my liver properly 2) may have a pinched nerve or nerve in my neck For number 1 above she wants to put me on 48 mg of methylprednisolone for 1 week then down to 40 mg and stop prednisone now(I am also on
Actemra
Mks9558
in
PMRGCAuk
6 years ago
Disappointed with Actemra
After being on
Actemra
since May 1st, I am now experiencing a full blown flare. At first it was like a miracle, my markers went down to normal and I was symptom free for weeks tapering from 6 to 5.
After being on
Actemra
since May 1st, I am now experiencing a full blown flare. At first it was like a miracle, my markers went down to normal and I was symptom free for weeks tapering from 6 to 5.
Gaijin
in
PMRGCAuk
6 years ago
CAROTID ARTERY BRUITS
He’s referring me for scan of carotid arteries now before starting
Actemra
after a trial of Leflunomide - (it didn’t do much except make my hair fall out by the handful)! Has anyone else dealt with carotid artery issues/narrowing caused by gca inflammation and not plaque?
He’s referring me for scan of carotid arteries now before starting
Actemra
after a trial of Leflunomide - (it didn’t do much except make my hair fall out by the handful)! Has anyone else dealt with carotid artery issues/narrowing caused by gca inflammation and not plaque?
Hev1964
in
PMRGCAuk
6 years ago
My Mom, Predinose, Actemra Infusions, and today a clean bill of health.
<3 My Mom and I stopped her
Actemra
infusions in May this year.
<3 My Mom and I stopped her
Actemra
infusions in May this year.
Joyismami
in
PMRGCAuk
6 years ago
Tapering Pred on Actemra Feeling Bad @4Mg... Normal?
Is anyone else on
Actemra
and tapering off Pred? (I called my doc to ask for a blood test to check markers, I feel that bad.) Thanks!
Is anyone else on
Actemra
and tapering off Pred? (I called my doc to ask for a blood test to check markers, I feel that bad.) Thanks!
PMRinsdca
in
PMRGCAuk
6 years ago
ROACTEMRA
Hi everyone. I am looking for anyones experience of taking Roactemra and well advice from anyone really! . I started weekly injections 3 weeks ago. First couple of days I felt pretty good then I got symptoms of sore roof of mouth, very dry mouth, thirst, general feeling of dehydration. My eyes began
Hi everyone. I am looking for anyones experience of taking Roactemra and well advice from anyone really! . I started weekly injections 3 weeks ago. First couple of days I felt pretty good then I got symptoms of sore roof of mouth, very dry mouth, thirst, general feeling of dehydration. My eyes began
Mouseling
in
NRAS
6 years ago
Giant Cell concerns
Was diagnosed with PMR August 2017, Giant Cell Dec. 2017...started
Actemra
injections twice monthly in May 2018. All has been good but now I am on a prednisone taper (5 mg for 10 days) along with the
Actemra
twice monthly injections. Headaches have begun again, along with jaw pain.
Was diagnosed with PMR August 2017, Giant Cell Dec. 2017...started
Actemra
injections twice monthly in May 2018. All has been good but now I am on a prednisone taper (5 mg for 10 days) along with the
Actemra
twice monthly injections. Headaches have begun again, along with jaw pain.
golfnut67
in
PMRGCAuk
6 years ago
Actemra Is Now In My Life
Hi everyone, Kentishgirl Girl Here, we I am now on
actemra
, I'm not happy about it! the possible side effects scare me to death!!, the data sheet indicates you can suffer horrific side effects, having the desese in itself is a pathway to horrible side effects!
Hi everyone, Kentishgirl Girl Here, we I am now on
actemra
, I'm not happy about it! the possible side effects scare me to death!!, the data sheet indicates you can suffer horrific side effects, having the desese in itself is a pathway to horrible side effects!
Kentishgirl
in
PMRGCAuk
6 years ago
Actermra and Pred tapering.
My Rheumatologist has said he will have me off prednisone altogether by the end of the year after 7 monthly infusions of
Actemra
. When I questioned this he told me that
Actemra
facilitates reducing pred but now I am wondering if I should taper at a slower level?
My Rheumatologist has said he will have me off prednisone altogether by the end of the year after 7 monthly infusions of
Actemra
. When I questioned this he told me that
Actemra
facilitates reducing pred but now I am wondering if I should taper at a slower level?
Hidden
in
PMRGCAuk
6 years ago
natural treatments
The next medicine we will try is
Actemra
. I have also hired a nurse who works for medical cannabis who prescribed a tincture for me to try. I have always been very sensitive to medicine. My fear is the prednisone was the only thing that actually helped thus far.
The next medicine we will try is
Actemra
. I have also hired a nurse who works for medical cannabis who prescribed a tincture for me to try. I have always been very sensitive to medicine. My fear is the prednisone was the only thing that actually helped thus far.
naturalchoice
in
PMRGCAuk
6 years ago
I’d like to introduce myself
Next I was put on
Actemra
. Bingo! Relief! Only it dramatically lowered my white count. But it really really worked , I was put on Nuprogen injections to bring up the white count....except, the Nuprogen caused a 3 day flare.
Next I was put on
Actemra
. Bingo! Relief! Only it dramatically lowered my white count. But it really really worked , I was put on Nuprogen injections to bring up the white count....except, the Nuprogen caused a 3 day flare.
sara1215
in
NRAS
6 years ago
Adrenal insufficiency or what?
I've just had my 16th weekly shot of
Actemra
and I am tapering 0.5 mg of pred every 2 weeks, now on 5/5.5.
I've just had my 16th weekly shot of
Actemra
and I am tapering 0.5 mg of pred every 2 weeks, now on 5/5.5.
Gaijin
in
PMRGCAuk
6 years ago
HELP...TCA,PMR, FIBRO Actemra
My doctor told me you cannot have a flare on
Actemra
. Did anyone else have return of TCA symptoms while on
Actemra
though inflammatory markers were fine. These array of symptoms can be so confusing.
My doctor told me you cannot have a flare on
Actemra
. Did anyone else have return of TCA symptoms while on
Actemra
though inflammatory markers were fine. These array of symptoms can be so confusing.
Dream21
in
PMRGCAuk
6 years ago
Actemra and hair loss
Kia ora I have been on monthly infusions of Actermra for 6 months now and recently noticed daily hair loss and that my hair has become straighter. I am wondering if anyone had any experience of this or suggestions to minimise this?
Kia ora I have been on monthly infusions of Actermra for 6 months now and recently noticed daily hair loss and that my hair has become straighter. I am wondering if anyone had any experience of this or suggestions to minimise this?
Hidden
in
PMRGCAuk
6 years ago
Slight puffy face at 4 mgs. Prednisone and skin breakout on face.
I’m on
Actemra
and was under the belief my pain would just go away but 38 shots later and I still take pain medication. I thought 36 years of fibromyalgia was dreadful but compared to this disease, that was a walk in the park. I have a rheumatologist appt. Tuesday and hope she has some answers.
I’m on
Actemra
and was under the belief my pain would just go away but 38 shots later and I still take pain medication. I thought 36 years of fibromyalgia was dreadful but compared to this disease, that was a walk in the park. I have a rheumatologist appt. Tuesday and hope she has some answers.
Leeleep
in
PMRGCAuk
6 years ago
Apple Cider
Some one said to me due to been on high tec medication (
Actemra
) that I would have to check it out? Has anyone taken this with medication for GCA🤔🤔. 🙏 thanks
Some one said to me due to been on high tec medication (
Actemra
) that I would have to check it out? Has anyone taken this with medication for GCA🤔🤔. 🙏 thanks
Lucylooloo
in
PMRGCAuk
6 years ago
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