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Anxiety again?
I have gone from 4 mg of prednisone to 3.5 and am experiencing mild anxiety and depression. I was on 4 for a month. Am also getting monthly Actemra infusions and have been since last fall. I don’t know why my body/mind are reacting as they are. I also don’t know why my legs and arms still feel tight
I have gone from 4 mg of prednisone to 3.5 and am experiencing mild anxiety and depression. I was on 4 for a month. Am also getting monthly Actemra infusions and have been since last fall. I don’t know why my body/mind are reacting as they are. I also don’t know why my legs and arms still feel tight
Greytree
in
PMRGCAuk
1 year ago
Finishing with Actemra
Hi everybody, once again I'm asking a question of you all before I see my Rheumo. In a few weeks I will have been on Actemra injections for 18 months. I managed to finish taking Pred 7 months ago after a 12 month stint with no relapses. I consider myself to be very lucky so far. I would like to
Hi everybody, once again I'm asking a question of you all before I see my Rheumo. In a few weeks I will have been on Actemra injections for 18 months. I managed to finish taking Pred 7 months ago after a 12 month stint with no relapses. I consider myself to be very lucky so far. I would like to
MarksPoint
in
PMRGCAuk
1 year ago
Stopping Tocilizumab/Actemra injections
I have been told by my Rheumy in a letter to my GP that I will not be prescribed any more Actemra injections once I have finished with my months supply. She also mentions that half of the patients who stop taking this medication will have a flare up. The medication is only prescribed for one year due
I have been told by my Rheumy in a letter to my GP that I will not be prescribed any more Actemra injections once I have finished with my months supply. She also mentions that half of the patients who stop taking this medication will have a flare up. The medication is only prescribed for one year due
Antschi
in
PMRGCAuk
1 year ago
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Nerve pain in."girdle" area...started as shocks now constant severe pain.
For a month I have had trouble walking. I use a cane and do a lot of leaning. It started because of pain in my left leg, mid-calf. Rheumy nurse said it was due to newly diagnosed venous stasis; cardiologist said no it doesn't cause pain. Anyway things just got worse...need wheelchairs at doctor offices
For a month I have had trouble walking. I use a cane and do a lot of leaning. It started because of pain in my left leg, mid-calf. Rheumy nurse said it was due to newly diagnosed venous stasis; cardiologist said no it doesn't cause pain. Anyway things just got worse...need wheelchairs at doctor offices
Wallysma
in
PMRGCAuk
1 year ago
Info onActemra
Hi everyone, I was diagnosed with GCA Dec 21 and put on 65mg Pred. Then March 22 I started Actemra weekly injections. I have been very fortunate so far as I tapered and stopped Pred in Dec 22 but still taking Actemra shots - fortnightly now. My question is how long have others had to take Actemra
Hi everyone, I was diagnosed with GCA Dec 21 and put on 65mg Pred. Then March 22 I started Actemra weekly injections. I have been very fortunate so far as I tapered and stopped Pred in Dec 22 but still taking Actemra shots - fortnightly now. My question is how long have others had to take Actemra
MarksPoint
in
PMRGCAuk
1 year ago
Actemra..any problems when taking this..
Was wondering what problems people have when taking Actemra weekly. I have been on it for a couple of months, slowly reducing Prednezone. Would like some information if anyone has noticed any side effects or changes. Thanks
Was wondering what problems people have when taking Actemra weekly. I have been on it for a couple of months, slowly reducing Prednezone. Would like some information if anyone has noticed any side effects or changes. Thanks
Wilson1952
in
PMRGCAuk
1 year ago
GCA flair?
I have been on Actemra since October. I recently reduced my prednisone to 1mg a day. I am starting to get sharpe pain, they only last for a second but come and go mostly at night. One night they actually woke me up. I notice if I sleep on my right side my head feels odd in the morning. It’s like a feeling
I have been on Actemra since October. I recently reduced my prednisone to 1mg a day. I am starting to get sharpe pain, they only last for a second but come and go mostly at night. One night they actually woke me up. I notice if I sleep on my right side my head feels odd in the morning. It’s like a feeling
Plains
in
PMRGCAuk
1 year ago
GCA and starting Actemra at 10 mg
Hello this is my second time with GCA. The first time (2017) I also had PMR and tapered prednisone over 4 years, very slowly. After almost a year off of prednisone completely I contacted GCA again and started again at 60mg prednisone. Actemra was not started until I was at 10 mg. currently I’m
Hello this is my second time with GCA. The first time (2017) I also had PMR and tapered prednisone over 4 years, very slowly. After almost a year off of prednisone completely I contacted GCA again and started again at 60mg prednisone. Actemra was not started until I was at 10 mg. currently I’m
Pamk1949
in
PMRGCAuk
1 year ago
Thinking of our conversation on pred level and how to handle stressful moments to keep adrenal drama at bay....
So things for me and PMR and pred have not gone the way a lot of folks have. I read about when you take the pred in the beginning most have amazing relief then begin the journey of slowly reducing to find the next good dose. Then reading the symptom tea leaves of symptoms to make decisions on the next
So things for me and PMR and pred have not gone the way a lot of folks have. I read about when you take the pred in the beginning most have amazing relief then begin the journey of slowly reducing to find the next good dose. Then reading the symptom tea leaves of symptoms to make decisions on the next
Wallysma
in
PMRGCAuk
1 year ago
GPs and Actemra
Can CGPs prescribe Actemra? What are your experiences? I’m in the US, and have had 3 bad experiences with rheumatologists. One good one who listened, but she left. My GP has been prescribing my prednisone, but not really managing the dose. I’ve been stuck at 9 mg for a year
Can CGPs prescribe Actemra? What are your experiences? I’m in the US, and have had 3 bad experiences with rheumatologists. One good one who listened, but she left. My GP has been prescribing my prednisone, but not really managing the dose. I’ve been stuck at 9 mg for a year
Mstiles
in
PMRGCAuk
1 year ago
SharonY
Wondering if anyone has had dental extraction while on Actemra. I was told by my dentist that it affects the jaw and I would need to see a specialist since an extraction would be problematic? I am in the UK and have weekly Actemra injections. Thx
Wondering if anyone has had dental extraction while on Actemra. I was told by my dentist that it affects the jaw and I would need to see a specialist since an extraction would be problematic? I am in the UK and have weekly Actemra injections. Thx
WaltzG
in
PMRGCAuk
1 year ago
Actemra frequency query
Hi Everyone, I’m wondering if there is anyone on here who is managing their Actemra injection pen shots four-weekly? I’m interested to know why your shots are spaced out to 4 weekly (or more), and for how long and how successfully you are managing this. Thanks. 😘
Hi Everyone, I’m wondering if there is anyone on here who is managing their Actemra injection pen shots four-weekly? I’m interested to know why your shots are spaced out to 4 weekly (or more), and for how long and how successfully you are managing this. Thanks. 😘
LemonZest11
in
PMRGCAuk
1 year ago
Same old question - withdrawal or flare?
Hi folks. I've been through two flares already since the start of this GCA journey in September 2020, hoping I'm wiser to spot them. However this time if it is a flare, it's slightly uncharacteristic. I only just got over my second one five weeks ago. I'd got down to 7mgs with the aid of Actemra (6 months
Hi folks. I've been through two flares already since the start of this GCA journey in September 2020, hoping I'm wiser to spot them. However this time if it is a flare, it's slightly uncharacteristic. I only just got over my second one five weeks ago. I'd got down to 7mgs with the aid of Actemra (6 months
strawclutching
in
PMRGCAuk
1 year ago
GCA flare dosage
Hello, I'm back with another question. I've had GCA and PMR for 10 months, on Actemra and was down to 9mg prednisone. When I went from 9 to 8.5mg I had a major flare and went up to 15mg. The flare continued and Rheumatologist said go to 20mg, maybe 25mg. After 2 and a half weeks on 20mg I thought I
Hello, I'm back with another question. I've had GCA and PMR for 10 months, on Actemra and was down to 9mg prednisone. When I went from 9 to 8.5mg I had a major flare and went up to 15mg. The flare continued and Rheumatologist said go to 20mg, maybe 25mg. After 2 and a half weeks on 20mg I thought I
potterylady
in
PMRGCAuk
1 year ago
Tapering
I am in the US, started at 60 mg prednisone last summer 2022, 20 weeks of Actemra for PMR/GCA, and many back up and down tapering ...and after 8 days of headache at 16 mg, headache went away and I started 15 mg today. Is this what I am to expect going forward? I have so many side effects from prednisone
I am in the US, started at 60 mg prednisone last summer 2022, 20 weeks of Actemra for PMR/GCA, and many back up and down tapering ...and after 8 days of headache at 16 mg, headache went away and I started 15 mg today. Is this what I am to expect going forward? I have so many side effects from prednisone
Joseph14612
in
PMRGCAuk
1 year ago
Has anyone had to stop actemra?
I am two years into GCA, was down to 5mg of prednisone, had adrenal tests to if glands were working or trying to and had positive results. Last week I was hospitalized with acute diverticulitis (not my first time) and adrenal insufficiency. I learned the hard way that just because they say your adrenal
I am two years into GCA, was down to 5mg of prednisone, had adrenal tests to if glands were working or trying to and had positive results. Last week I was hospitalized with acute diverticulitis (not my first time) and adrenal insufficiency. I learned the hard way that just because they say your adrenal
pmac22
in
PMRGCAuk
1 year ago
COVID and discontinuing Actemra
Have been off prednisone for over a month now and doing well. Tested positive Saturday for COVID (thought it was a cold). I am still taking my weekly Actemra injections, the last was Friday. The Actemra information sheet suggests discontinuing shots if ill. My last few blood tests have had extremely
Have been off prednisone for over a month now and doing well. Tested positive Saturday for COVID (thought it was a cold). I am still taking my weekly Actemra injections, the last was Friday. The Actemra information sheet suggests discontinuing shots if ill. My last few blood tests have had extremely
Abikitty
in
PMRGCAuk
1 year ago
Actemra
I’ve just been reading about Actemra for PMR. Wondering how many of you are taking this and at what dosage of Pred.
I’ve just been reading about Actemra for PMR. Wondering how many of you are taking this and at what dosage of Pred.
Sumojo
in
PMRGCAuk
1 year ago
Stop Actemra for good?
I am down to 4.5 mg of Prednisone. Started at 15 a couple of years ago. Have had about a year of monthly Actemra infusions (monthly infusions not weekly shots). I don’t feel different after them. Why shouldn’t I stop taking them? I still have some heaviness in arms/legs and some minor pains on occasion
I am down to 4.5 mg of Prednisone. Started at 15 a couple of years ago. Have had about a year of monthly Actemra infusions (monthly infusions not weekly shots). I don’t feel different after them. Why shouldn’t I stop taking them? I still have some heaviness in arms/legs and some minor pains on occasion
Greytree
in
PMRGCAuk
1 year ago
Major GCA Headache with 1/2mg taper
Hello, diagnosed late July 2022. I'm on TCZ (Actemra) and Prednisone. I've been tapering from 55mg August 2022 to 9mg currently. I was trying to go down 1mg per month, but when tapering just a half mg from 9 to 8.5mg, I got horrible unbearable headaches. Is it possible that I have to stay at 9mg longterm
Hello, diagnosed late July 2022. I'm on TCZ (Actemra) and Prednisone. I've been tapering from 55mg August 2022 to 9mg currently. I was trying to go down 1mg per month, but when tapering just a half mg from 9 to 8.5mg, I got horrible unbearable headaches. Is it possible that I have to stay at 9mg longterm
potterylady
in
PMRGCAuk
1 year ago
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