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Difficulty tapering and questions~!
After my initial infusions of steroids, I was on 125 mg per day of prednisone, then 100 mg for a month before switching to 85 mg per day of Methylprednisolone tabs plus
Actemra
, about 10/2019. I've gotten near 10 twice and had vision issues, but by July 2020, I was on 20 mg daily. Hoorah!
After my initial infusions of steroids, I was on 125 mg per day of prednisone, then 100 mg for a month before switching to 85 mg per day of Methylprednisolone tabs plus
Actemra
, about 10/2019. I've gotten near 10 twice and had vision issues, but by July 2020, I was on 20 mg daily. Hoorah!
Grammy80
in
PMRGCAuk
3 years ago
Dont work out after JaB, heres my story
It was decided not to start taper again, until off antibiotics and also to skip
Actemra
shot, until ESR/CRP dropped significantly and off antibiotics.........so we did that. NO FLARE!! so amazing.......I even had a reaction to Vancomycin and got the Redman syndrome, which my wife caught happening!!
It was decided not to start taper again, until off antibiotics and also to skip
Actemra
shot, until ESR/CRP dropped significantly and off antibiotics.........so we did that. NO FLARE!! so amazing.......I even had a reaction to Vancomycin and got the Redman syndrome, which my wife caught happening!!
weatherman69
in
PMRGCAuk
3 years ago
COVID Vaccination while taking Actemra
I am currently taking 2 mg Prednisone and
Actemra
. My Rheumatologist said it was not necessary to stop the
Actemra
before my vaccination. However, I will be off
Actemra
for 3 weeks after my vaccination as I need to stop the
Actemra
for my Cataract surgery.
I am currently taking 2 mg Prednisone and
Actemra
. My Rheumatologist said it was not necessary to stop the
Actemra
before my vaccination. However, I will be off
Actemra
for 3 weeks after my vaccination as I need to stop the
Actemra
for my Cataract surgery.
misha453
in
PMRGCAuk
4 years ago
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I'm sort of back...
I've added the delicacies of isosorbide and Lipitor to my list BUT I'M ONLY TAKING 13 MG OF PREDNISONE PER DAY along with
Actemra
. I'm scheduled for a few more tests, a cardiac MRI a few others.
I've added the delicacies of isosorbide and Lipitor to my list BUT I'M ONLY TAKING 13 MG OF PREDNISONE PER DAY along with
Actemra
. I'm scheduled for a few more tests, a cardiac MRI a few others.
Grammy80
in
PMRGCAuk
3 years ago
Update on GCA and thickening of internal carotid artery
Diagnosed February 2018 and currently tapering to 6mg of prednisone with no methotrexate or
actemra
. I opt not to take either. If I were to relapse I would consider
actemra
depending on how much prednisone I'd need to control the flare. I very much hope, of course, that this doesn't happen.
Diagnosed February 2018 and currently tapering to 6mg of prednisone with no methotrexate or
actemra
. I opt not to take either. If I were to relapse I would consider
actemra
depending on how much prednisone I'd need to control the flare. I very much hope, of course, that this doesn't happen.
Blurry62
in
PMRGCAuk
4 years ago
any info about using cobimetinib, an IL-6 inhibitor, for PMR?
I've been reading the posts on this forum about
Actemra
(tocilizumab) and suppression of IL-6, the cytokine causing the negative symptoms of PMR. Searching the web led me to a scientific conjecture from 2018 that combimetinib may be useful for treating PMR.
I've been reading the posts on this forum about
Actemra
(tocilizumab) and suppression of IL-6, the cytokine causing the negative symptoms of PMR. Searching the web led me to a scientific conjecture from 2018 that combimetinib may be useful for treating PMR.
benhemp
in
PMRGCAuk
4 years ago
Prednisone Induced Myopathy PIM
Til then, stick w the current prednisone and cut out the
Actemra
. Then she will do blood tests to see where I am at. Feeling like there is light at the end of my exhausted tunnel.
Til then, stick w the current prednisone and cut out the
Actemra
. Then she will do blood tests to see where I am at. Feeling like there is light at the end of my exhausted tunnel.
alvertta
in
PMRGCAuk
4 years ago
Vision Issues
I have been on
Actemra
for a year. I see various specialists for all my different medical issues but they all communicate through a data base. I get bloodwork every month and last month I found out that my WBC were very low.
I have been on
Actemra
for a year. I see various specialists for all my different medical issues but they all communicate through a data base. I get bloodwork every month and last month I found out that my WBC were very low.
baxternoni
in
PMRGCAuk
4 years ago
Should You Get the COVID-19 Vaccine During a Disease Flare-Up?
Plaquenil) IVIG Low-dose glucocorticoids (ex: prednisone, daily dose < 20 mg) Sulfasalazine (Azulfidine) Leflunomide (Arava) Mycophenolate (CellCept) Azathioprine (Imuran) Cyclophosphamide (Cytoxan) (oral) TNF biologics (ex: Cimzia, Enbrel, Humira, Remicade, Simponi and Simponi Aria) IL-6 biologics (ex:
Actemra
Plaquenil) IVIG Low-dose glucocorticoids (ex: prednisone, daily dose < 20 mg) Sulfasalazine (Azulfidine) Leflunomide (Arava) Mycophenolate (CellCept) Azathioprine (Imuran) Cyclophosphamide (Cytoxan) (oral) TNF biologics (ex: Cimzia, Enbrel, Humira, Remicade, Simponi and Simponi Aria) IL-6 biologics (ex:
Actemra
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
4 years ago
7 Questions to Ask Your Rheumatologist If You’re Nervous About Getting the COVID-19 Vaccine
Plaquenil) IVIG Low-dose glucocorticoids (ex: prednisone, daily dose < 20 mg) Sulfasalazine (Azulfidine) Leflunomide (Arava) Mycophenolate (CellCept) Azathioprine (Imuran) Cyclophosphamide (Cytoxan) (oral) TNF biologics (ex: Cimzia, Enbrel, Humira, Remicade, Simponi and Simponi Aria) IL-6 biologics (ex:
Actemra
Plaquenil) IVIG Low-dose glucocorticoids (ex: prednisone, daily dose < 20 mg) Sulfasalazine (Azulfidine) Leflunomide (Arava) Mycophenolate (CellCept) Azathioprine (Imuran) Cyclophosphamide (Cytoxan) (oral) TNF biologics (ex: Cimzia, Enbrel, Humira, Remicade, Simponi and Simponi Aria) IL-6 biologics (ex:
Actemra
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
4 years ago
Actemra and weight
I have a very strict low carb high protein diet but I gain on
Actemra
regardless of diet. Is there anyone on
Actemra
that hasn't gained weight on it?
I have a very strict low carb high protein diet but I gain on
Actemra
regardless of diet. Is there anyone on
Actemra
that hasn't gained weight on it?
Spanky2019
in
PMRGCAuk
4 years ago
Vaccine
I’m taking 7mg of prednisone and due to give myself my
Actemra
shot two days later. Is there any info about delaying your injection? Tried to contact my rheumatologist but he is away. His nurse didn’t have an answer for me.
I’m taking 7mg of prednisone and due to give myself my
Actemra
shot two days later. Is there any info about delaying your injection? Tried to contact my rheumatologist but he is away. His nurse didn’t have an answer for me.
Blackcatlover
in
PMRGCAuk
4 years ago
Information for people in the UK on Tocilizumab (Ro-Actemra) injections
Hello, and apologies for not posting for such a long time. As one of the few (and greatly privileged) LVV-GCA sufferers in the UK lucky enough to have been prescribed subcutaneous Tocilizumab injections, I have a couple of items of news. First of all, along with my husband, I have been a participant
Hello, and apologies for not posting for such a long time. As one of the few (and greatly privileged) LVV-GCA sufferers in the UK lucky enough to have been prescribed subcutaneous Tocilizumab injections, I have a couple of items of news. First of all, along with my husband, I have been a participant
Suzita76
in
PMRGCAuk
3 years ago
Out of Remission. Starting over...
So my doctor put me back on
Actemra
and all symptoms disappeared. My dr believes that the adjuvant in the flu shot was the culprit.
So my doctor put me back on
Actemra
and all symptoms disappeared. My dr believes that the adjuvant in the flu shot was the culprit.
Marie1479
in
PMRGCAuk
4 years ago
PMR and Covid vaccine experience
Prednisone and
Actemra
injections weekly. Curious what others are experiencing. Thank you in advance!
Prednisone and
Actemra
injections weekly. Curious what others are experiencing. Thank you in advance!
Jumpshot
in
PMRGCAuk
4 years ago
Smooth so far~
My
Actemra
shots are no longer causing bleeding or bruising~! So I am coasting smoothly. What more can a gal ask for? 👩🏽🤝👩🏼👩🏿🤝👩🏼👩🏿🤝👩🏽👩🏿🤝👩🏼👩🏿🤝👩🏻👩🏾🤝👩🏾👩🏾🤝👩🏻👩🏾🤝👩🏼👫💖
My
Actemra
shots are no longer causing bleeding or bruising~! So I am coasting smoothly. What more can a gal ask for? 👩🏽🤝👩🏼👩🏿🤝👩🏼👩🏿🤝👩🏽👩🏿🤝👩🏼👩🏿🤝👩🏻👩🏾🤝👩🏾👩🏾🤝👩🏻👩🏾🤝👩🏼👫💖
Grammy80
in
PMRGCAuk
4 years ago
Officially tapering as of today~!
Since November 2020 I've been on 12 Medrol per day along with
Actemra
. I had mentioned in a post, my present rheumy in Indiana switched me to prednisone, 15 mg per day. Today I took 14 mg and shall for a month.
Since November 2020 I've been on 12 Medrol per day along with
Actemra
. I had mentioned in a post, my present rheumy in Indiana switched me to prednisone, 15 mg per day. Today I took 14 mg and shall for a month.
Grammy80
in
PMRGCAuk
4 years ago
Getting a COVID-19 Vaccine with Autoimmune or Inflammatory Rheumatic Disease: New Guidance from the American College of Rheumatology
Plaquenil) IVIG Low-dose glucocorticoids (ex: prednisone, daily dose < 20 mg) Sulfasalazine (Azulfidine) Leflunomide (Arava) Mycophenolate (CellCept) Azathioprine (Imuran) Cyclophosphamide (Cytoxan) (oral) TNF biologics (ex: Cimzia, Enbrel, Humira, Remicade, Simponi and Simponi Aria) IL-6 biologics (ex:
Actemra
Plaquenil) IVIG Low-dose glucocorticoids (ex: prednisone, daily dose < 20 mg) Sulfasalazine (Azulfidine) Leflunomide (Arava) Mycophenolate (CellCept) Azathioprine (Imuran) Cyclophosphamide (Cytoxan) (oral) TNF biologics (ex: Cimzia, Enbrel, Humira, Remicade, Simponi and Simponi Aria) IL-6 biologics (ex:
Actemra
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
4 years ago
Started Actemra... a few questions if that's ok!
I also believe that
Actemra
can take a while to kick in. The other thing I wanted to ask is, if I forgot to do it on the correct day will the following day be ok? I am forgetful at the best of times, hence having Mon-Fri medication dispensers, but obviously this is different.
I also believe that
Actemra
can take a while to kick in. The other thing I wanted to ask is, if I forgot to do it on the correct day will the following day be ok? I am forgetful at the best of times, hence having Mon-Fri medication dispensers, but obviously this is different.
Sophiestree
in
PMRGCAuk
4 years ago
I'd love your thoughts...
I was on 12 mg of Prednisolone and weekly injections of
Actemra
until September13, 2020, when the
Actemra
was stopped due to a staph infection in my right leg which is all cleared up now.
I was on 12 mg of Prednisolone and weekly injections of
Actemra
until September13, 2020, when the
Actemra
was stopped due to a staph infection in my right leg which is all cleared up now.
Grammy80
in
PMRGCAuk
4 years ago
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