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Actemra
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Trip to the Er/ED
Things I'm nervous about:
Actemra
-induced MS,
Actemra
-induced diabetes,
Actemra
-induced damage to liver and/or kidneys. And that there might be something on the MRI that indicated further testing, but was dismissed.
Things I'm nervous about:
Actemra
-induced MS,
Actemra
-induced diabetes,
Actemra
-induced damage to liver and/or kidneys. And that there might be something on the MRI that indicated further testing, but was dismissed.
Lenore58
in
PMRGCAuk
5 months ago
Antibiotic and Actemra
If I'm understanding the guidelines for
Actemra
correctly, apparently, I am supposed to stop my
Actemra
injection (which is every two weeks) while I am on an antibiotic. My question is, is that really necessary? What if I had just given myself the injection yesterday?
If I'm understanding the guidelines for
Actemra
correctly, apparently, I am supposed to stop my
Actemra
injection (which is every two weeks) while I am on an antibiotic. My question is, is that really necessary? What if I had just given myself the injection yesterday?
ILbbHpmr
in
PMRGCAuk
5 months ago
GCA flair?
I am also on
Actemra
infusions once a month. This past week, on two occasions I was eating and my jaw made hard cracking sound. I have never experienced anything like it. Reading about GCA flairs, could this be an issue for me. No other symptoms. Thank you
I am also on
Actemra
infusions once a month. This past week, on two occasions I was eating and my jaw made hard cracking sound. I have never experienced anything like it. Reading about GCA flairs, could this be an issue for me. No other symptoms. Thank you
Plains
in
PMRGCAuk
3 months ago
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Speedy taper after relapse - safe?
I'm still on weekly
Actemra
. My symptoms have cleared on the 40mg, but I'm wondering if anyone has insights regarding this proposed pace of pred reduction here. Is the taper for a relapse approached differently than the original illness? Many thanks,
I'm still on weekly
Actemra
. My symptoms have cleared on the 40mg, but I'm wondering if anyone has insights regarding this proposed pace of pred reduction here. Is the taper for a relapse approached differently than the original illness? Many thanks,
Optim11
in
PMRGCAuk
3 months ago
IV infusion Actemra vs. SQ
/kg. )
Actemra
infusions which have helped a bit, but I still have scalp tenderness, intermittent headaches, ear and jaw soreness, tongue just a bit sore, and elevated tinnitus. One rheumatologist thought irregular absorption rates with SQ would make it less potent than the infusion.
/kg. )
Actemra
infusions which have helped a bit, but I still have scalp tenderness, intermittent headaches, ear and jaw soreness, tongue just a bit sore, and elevated tinnitus. One rheumatologist thought irregular absorption rates with SQ would make it less potent than the infusion.
Bummed24
in
PMRGCAuk
4 months ago
GCA flare?
I am also on
Actemra
inj. yesterday afternoon my ectopic heart beats starting increasing as did pain and pressure in both temples and tenderness on scalp. Extremely tired too. Of course it is week end so can’t reach rheumatologist or endo til Monday. Is this a possible flare ?
I am also on
Actemra
inj. yesterday afternoon my ectopic heart beats starting increasing as did pain and pressure in both temples and tenderness on scalp. Extremely tired too. Of course it is week end so can’t reach rheumatologist or endo til Monday. Is this a possible flare ?
pmac22
in
PMRGCAuk
2 months ago
clueless rheumo
I can’t take
Actemra
because I’ve had cancer. I don’t know what to do, except to ask for help from you experts. Thank you
I can’t take
Actemra
because I’ve had cancer. I don’t know what to do, except to ask for help from you experts. Thank you
GivenUp24
in
PMRGCAuk
4 days ago
Tyenne /Tocilizumab
Hi just to say I be just received a letter to say I’m changing from
actemra
to this brand. Hopefully a lower price will make it an option for more people.
Hi just to say I be just received a letter to say I’m changing from
actemra
to this brand. Hopefully a lower price will make it an option for more people.
Devoid
in
PMRGCAuk
6 months ago
Finally, at zero prednisone...still Actemra~!
I am still doing weekly injections of
Actemra
and am certain my rheumatologist will continue that. I remained on .5 mg of prednisone until I returned from Maine and unpacked. I stopped pred on June 27; so far, so good.
I am still doing weekly injections of
Actemra
and am certain my rheumatologist will continue that. I remained on .5 mg of prednisone until I returned from Maine and unpacked. I stopped pred on June 27; so far, so good.
Grammy80
in
PMRGCAuk
3 months ago
Off meds: is 13 lucky?
Pred came off in 2020 and have been on just
Actemra
. Tapered that to monthly and last dose was April 17th. So far so good. I wanted to say this site and all you lovely folks has been a Godsend along the journey. You taught me so much about my diseases and about myself!
Pred came off in 2020 and have been on just
Actemra
. Tapered that to monthly and last dose was April 17th. So far so good. I wanted to say this site and all you lovely folks has been a Godsend along the journey. You taught me so much about my diseases and about myself!
PMR2011
in
PMRGCAuk
4 months ago
PMR or Rheumatoid Arthritis?
I have had 13 infusions of
Actemra
over the past year. I have had many ups and downs, including being weaned very slowly off prednisone and having to go back on it.
I have had 13 infusions of
Actemra
over the past year. I have had many ups and downs, including being weaned very slowly off prednisone and having to go back on it.
A77bruin
in
PMRGCAuk
12 days ago
A flare of GCA
My husband was diagnosed in June of this year (2024) with GCA, unfortunately, lost complete and permanent sight in one eye, was treated with three days of prednisone infusions, started at 80 mg of oral preds, went on
Actemra
weekly injection and had been tapering off until down to 12 1/2.
My husband was diagnosed in June of this year (2024) with GCA, unfortunately, lost complete and permanent sight in one eye, was treated with three days of prednisone infusions, started at 80 mg of oral preds, went on
Actemra
weekly injection and had been tapering off until down to 12 1/2.
janno
in
PMRGCAuk
23 days ago
Melanoma Surgery while taking Actemra and Prednisone
My question is: should I increase/decrease prednisone or
Actemra
for this? I’ll have two incisions for this, and wear machine that helps healing for a week? 🤨 I would be great full for your experiences and opinions
My question is: should I increase/decrease prednisone or
Actemra
for this? I’ll have two incisions for this, and wear machine that helps healing for a week? 🤨 I would be great full for your experiences and opinions
Pamk1949
in
PMRGCAuk
7 months ago
Well, I just took 60 mg of prednisone~Wednesday night in the States~
After five years, on June 27, I got to zero pred, though I am continuing
Actemra
. It was July 26 when I started having a headache, which over the next few days had progressed to sharp pain down the left forehead and was needle-like in my left eye, my blind eye.
After five years, on June 27, I got to zero pred, though I am continuing
Actemra
. It was July 26 when I started having a headache, which over the next few days had progressed to sharp pain down the left forehead and was needle-like in my left eye, my blind eye.
Grammy80
in
PMRGCAuk
2 months ago
GCA concerns
I have had 5
Actemra
infusions of 400 mg. since February and began weekly
Actemra
SQ injections earlier this month. Five injections so far. I seemed to have flared after two weeks at 30 mg.
I have had 5
Actemra
infusions of 400 mg. since February and began weekly
Actemra
SQ injections earlier this month. Five injections so far. I seemed to have flared after two weeks at 30 mg.
Bummed24
in
PMRGCAuk
2 months ago
Actemra and Extremely Fast Taper off of Prednisone
It seems that her thoughts are that
Actemra
be used in lieu of Prednisone not in conjunction with, and from what I've read
Actemra
is a steroid reducing drug (at least at first) that will allow for a gradual but quicker taper off of Prednisone until such time that one would only be using
Actemra
.
It seems that her thoughts are that
Actemra
be used in lieu of Prednisone not in conjunction with, and from what I've read
Actemra
is a steroid reducing drug (at least at first) that will allow for a gradual but quicker taper off of Prednisone until such time that one would only be using
Actemra
.
newsusy
in
PMRGCAuk
7 months ago
I know I’m having a flare-rheum disagrees
Started on 60 mgs of Pred and
Actemra
. Dr. withdrew
Actemra
in Feb. as she was concerned about a neuropathy that I developed in my left leg. Anyway, after several months ( Jan, Feb, March) of muscle , nerve and joint pain, I started feeling better- I was swimming in therapy and doing Pilates.
Started on 60 mgs of Pred and
Actemra
. Dr. withdrew
Actemra
in Feb. as she was concerned about a neuropathy that I developed in my left leg. Anyway, after several months ( Jan, Feb, March) of muscle , nerve and joint pain, I started feeling better- I was swimming in therapy and doing Pilates.
Birdfriend
in
PMRGCAuk
4 months ago
Ongoing headaches
Second question, in looking ahead in hopes of the headaches going away.....my rheumy who advocates for shared decision making, suggests I be able to wean quicker off the Pred because I am starting on monthly
Actemra
infusions. What is your advice for weaning with
Actemra
?
Second question, in looking ahead in hopes of the headaches going away.....my rheumy who advocates for shared decision making, suggests I be able to wean quicker off the Pred because I am starting on monthly
Actemra
infusions. What is your advice for weaning with
Actemra
?
Bummed24
in
PMRGCAuk
8 months ago
adrenals not working
After getting down to 3 mg of prednisone (still doing
Actemra
injections) my endo switched me to hydrocortisone for a couple of months. I got down to two 5mg tablets in AM and one 5mg tab in PM, the PM dose kept my blood pressure from going too low.
After getting down to 3 mg of prednisone (still doing
Actemra
injections) my endo switched me to hydrocortisone for a couple of months. I got down to two 5mg tablets in AM and one 5mg tab in PM, the PM dose kept my blood pressure from going too low.
pmac22
in
PMRGCAuk
2 months ago
GCA patient with new PMRish symptoms….
I am doing
Actemra
injections weekly ans well. Over the last couple of months I’ve had extremely puffy and swollen hands overnight which improve over a few hours. My arms also ache overnight and make it difficult to sleep in my usual way (arm under my head).
I am doing
Actemra
injections weekly ans well. Over the last couple of months I’ve had extremely puffy and swollen hands overnight which improve over a few hours. My arms also ache overnight and make it difficult to sleep in my usual way (arm under my head).
Aoakleymoore
in
PMRGCAuk
3 months ago
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