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Funny Actemra experience
Last night was my third Actemra shot. This morning I was in less pain and had a lot more energy than usual. I went out early this morning and washed my car windows. Then I took windex cleaner (that you attach to a garden hose) and cleaned all but 2 of my house windows on the outside. My husband came
Last night was my third Actemra shot. This morning I was in less pain and had a lot more energy than usual. I went out early this morning and washed my car windows. Then I took windex cleaner (that you attach to a garden hose) and cleaned all but 2 of my house windows on the outside. My husband came
Linny3
in
PMRGCAuk
4 years ago
Actemra twist
Just saw my rheumatologist today. I’m having some trouble with the veins on my right arm during my monthly IV treatments of Actemra. I had a left side mastectomy so I can only use my right arm for blood pressures, injections, blood draws and IVs. Veins are not holding up too well after all that’s been
Just saw my rheumatologist today. I’m having some trouble with the veins on my right arm during my monthly IV treatments of Actemra. I had a left side mastectomy so I can only use my right arm for blood pressures, injections, blood draws and IVs. Veins are not holding up too well after all that’s been
Blackcatlover
in
PMRGCAuk
4 years ago
Question To those taking Actemra
I am wondering how long you were on Actemra before decreasing the prednisone? Thanks
I am wondering how long you were on Actemra before decreasing the prednisone? Thanks
Linny3
in
PMRGCAuk
4 years ago
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Actemra
My doctor has been trying to get me on Actemra for months. I finally agreed to try it IF I could get a blood test for possible IL-6 involvement. I am sitting in the lab at this moment waiting for the blood draw. I may have to pay for the test myself if Medicare doesn’t cover it, which is very possible
My doctor has been trying to get me on Actemra for months. I finally agreed to try it IF I could get a blood test for possible IL-6 involvement. I am sitting in the lab at this moment waiting for the blood draw. I may have to pay for the test myself if Medicare doesn’t cover it, which is very possible
Manchild
in
PMRGCAuk
4 years ago
Starting Actemra
On Wednesday I am starting Actemra and I realize that ideally no alcohol is the right prescription. I do like a couple of glasses of wine with dinner any real issues with that ? Googled it but nothing really negative to say
On Wednesday I am starting Actemra and I realize that ideally no alcohol is the right prescription. I do like a couple of glasses of wine with dinner any real issues with that ? Googled it but nothing really negative to say
Darcy2000
in
PMRGCAuk
4 years ago
Starting Actemra this week
I have both PMR and GCA . I was Wondering Actemra can also help the PMR. I am currently on 15 mg of Prednisone for the PMR.
I have both PMR and GCA . I was Wondering Actemra can also help the PMR. I am currently on 15 mg of Prednisone for the PMR.
Darcy2000
in
PMRGCAuk
4 years ago
Follow up question to high CRP
When there are few symptoms how to know if the high inflammation is from which disease? Maybe GCA is stable and no need to go on Actemra
When there are few symptoms how to know if the high inflammation is from which disease? Maybe GCA is stable and no need to go on Actemra
Darcy2000
in
PMRGCAuk
4 years ago
High CRP?
I have both PMR and GCA I am on a tapering Pred schedule very slowly and currently I am at 17.5 having started at 50 about a year ago. Feel generally well with little or no symptoms from either disease . You would almost think I was Near remission . However CRP is still high at 33 meaning there is still
I have both PMR and GCA I am on a tapering Pred schedule very slowly and currently I am at 17.5 having started at 50 about a year ago. Feel generally well with little or no symptoms from either disease . You would almost think I was Near remission . However CRP is still high at 33 meaning there is still
Darcy2000
in
PMRGCAuk
4 years ago
Update on arm pain & dizzy/faint
Completed 14 day heart monitor. Little dizzy spells but no fainting while on it. Electrophysiologist said doesn't feel pacemaker is needed. Yippee! Said it's likely vasovagal response & I need to pay attention & more slowly get out of bed, or standing it is not dangerous. So happy that another dx not
Completed 14 day heart monitor. Little dizzy spells but no fainting while on it. Electrophysiologist said doesn't feel pacemaker is needed. Yippee! Said it's likely vasovagal response & I need to pay attention & more slowly get out of bed, or standing it is not dangerous. So happy that another dx not
Spanky2019
in
PMRGCAuk
4 years ago
Reducing frequency of Actemra - how to decide this ?
Hello , I have been diagnosed with GCA in March 2019. I was put on 60 mg prednisone and then tapering and now on 4 mg by DSNS method. Since April 2019 ,I was also put parallelly on Actemra 162 mg every 15 days. I have had two small flares on the prednisone taper and otherwise uneventful taper so far
Hello , I have been diagnosed with GCA in March 2019. I was put on 60 mg prednisone and then tapering and now on 4 mg by DSNS method. Since April 2019 ,I was also put parallelly on Actemra 162 mg every 15 days. I have had two small flares on the prednisone taper and otherwise uneventful taper so far
Iwillwin123
in
PMRGCAuk
4 years ago
GCA Flair after Shingrix Vaccine
Yesterday I had my second Shingrix vaccine, and sadly, I’m having my first GCA flair. Has anyone else experienced a flair after a vaccine? After listening to Dr. Dasgupta’s wonderful presentation this morning (8am here in Austin, TX), I felt a slight headache (normal side effect of the vaccine),and
Yesterday I had my second Shingrix vaccine, and sadly, I’m having my first GCA flair. Has anyone else experienced a flair after a vaccine? After listening to Dr. Dasgupta’s wonderful presentation this morning (8am here in Austin, TX), I felt a slight headache (normal side effect of the vaccine),and
cmgarner
in
PMRGCAuk
4 years ago
Actemra
I have GCA and am now on Actemra after a bad reaction to predizone is anyone on this?
I have GCA and am now on Actemra after a bad reaction to predizone is anyone on this?
Krezan
in
PMRGCAuk
4 years ago
UP DATE
Both liver and spleen enlarged. I am on the list for colonoscopy and endoscopy, wait time is about 2 months. I still have monthly blood tests and with each one my esr is increasing. It is now 37. While I was on Actemra injections it was down to about 5. I saw gp last week and he said if it is over
Both liver and spleen enlarged. I am on the list for colonoscopy and endoscopy, wait time is about 2 months. I still have monthly blood tests and with each one my esr is increasing. It is now 37. While I was on Actemra injections it was down to about 5. I saw gp last week and he said if it is over
shazstep
in
PMRGCAuk
4 years ago
Worried about a hastened taper ...
Good morning everyone, I’m just checking back in for a bit more advice. After 5 injections of Actemra I had my Rheumatologist appt yesterday to discuss bloods and the move forward. Miracle of miracles, my CRP is 1!!!! and my ESR is 2, this after recent levels of 110 and 57 respectively. I am feeling
Good morning everyone, I’m just checking back in for a bit more advice. After 5 injections of Actemra I had my Rheumatologist appt yesterday to discuss bloods and the move forward. Miracle of miracles, my CRP is 1!!!! and my ESR is 2, this after recent levels of 110 and 57 respectively. I am feeling
LemonZest11
in
PMRGCAuk
4 years ago
Recently diagnosed with GCA
Hi everyone. It took me a couple of weeks to look at online sites as I was too scared as to what people’s experiences were, I didn’t want to read anything negative, but now I just want to inform myself on moving forward. My story is I’m a 50 year old British women, who currently lives in Florida. I
Hi everyone. It took me a couple of weeks to look at online sites as I was too scared as to what people’s experiences were, I didn’t want to read anything negative, but now I just want to inform myself on moving forward. My story is I’m a 50 year old British women, who currently lives in Florida. I
Keeping_healthy
in
PMRGCAuk
4 years ago
Update on diverticulitis and prednisone taper
I can’t find my posts so not sure what I shared so sorry for any repeats. Short version. Had cat scan showed active diverticulitis put me on IV and gave me augmentin. From 8 pm to 5 am I vomited the worst ever in my life. I had dry heaves toward the end. Back to ER which was once again empty. I
I can’t find my posts so not sure what I shared so sorry for any repeats. Short version. Had cat scan showed active diverticulitis put me on IV and gave me augmentin. From 8 pm to 5 am I vomited the worst ever in my life. I had dry heaves toward the end. Back to ER which was once again empty. I
Hidden
in
PMRGCAuk
4 years ago
Tapering UK style.....slowly~!
I've been trying to taper my prednisolone and take an injection of Actemra each week. Right now 8 mg seems to be my sweet spot and my rheumy here in the states was having me reduce by 2mg per week. I was on 60+ in December and with the exception of when I hit 8mg and stayed on it for a month, it was
I've been trying to taper my prednisolone and take an injection of Actemra each week. Right now 8 mg seems to be my sweet spot and my rheumy here in the states was having me reduce by 2mg per week. I was on 60+ in December and with the exception of when I hit 8mg and stayed on it for a month, it was
Grammy80
in
PMRGCAuk
4 years ago
What We Did Right: Israeli Doctors Explain How They Beat the Coronavirus
In the lull following the first infection wave, physicians tell Haaretz how they adjusted on the fly – and helped push Israel's number of new cases per day into the low double-digits 'We’ve also learned that you don’t have to rush into employing invasive ventilation methods. Eventually we began to
In the lull following the first infection wave, physicians tell Haaretz how they adjusted on the fly – and helped push Israel's number of new cases per day into the low double-digits 'We’ve also learned that you don’t have to rush into employing invasive ventilation methods. Eventually we began to
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
4 years ago
The Actemra journey ...
Hello Everyone, It’s been several weeks since I was on here seeking advice about the PET scan and its efficacy in regard to GCA diagnosis. Because my CRP was 110 and ESR 53, Rheumatologist suspected GCA because, at 10mgs pred, the bloods were still high. She was right, and large vessel vasculitis
Hello Everyone, It’s been several weeks since I was on here seeking advice about the PET scan and its efficacy in regard to GCA diagnosis. Because my CRP was 110 and ESR 53, Rheumatologist suspected GCA because, at 10mgs pred, the bloods were still high. She was right, and large vessel vasculitis
LemonZest11
in
PMRGCAuk
4 years ago
Actemra info
As I said in previous post I've had severe arm pain, fluctuating bp, dizziness & fainted a few times, extra heart beats. My labs came back almost normal today. ESR and CRP are normal, but arms are so painful. I'm sure I am in a flare. Rheumy wants me to see primary asap. Hmmm. Needed more info. So
As I said in previous post I've had severe arm pain, fluctuating bp, dizziness & fainted a few times, extra heart beats. My labs came back almost normal today. ESR and CRP are normal, but arms are so painful. I'm sure I am in a flare. Rheumy wants me to see primary asap. Hmmm. Needed more info. So
Spanky2019
in
PMRGCAuk
4 years ago
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