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My question has this happened anyone here on
Roactemra
I have GCA 😫
My question has this happened anyone here on
Roactemra
I have GCA 😫
Headpain24
in
PMRGCAuk
15 days ago
RoActemra
Does anyone know when the Patent for
RoActemra
(Tocilizumab) expires. The NHS will currently only pay for one year of injections. Current private costs is approx £250 per syringe. Once expired the price will go down
Does anyone know when the Patent for
RoActemra
(Tocilizumab) expires. The NHS will currently only pay for one year of injections. Current private costs is approx £250 per syringe. Once expired the price will go down
Niblick
in
PMRGCAuk
6 months ago
Cost of tocilizumab (2)
As suggested by Lemonzest I’ve exchanged a few emails with Roche UK, and here’s their response: “I have discussed your query with our Medical Affairs team and they have confirmed that unfortunately funding extensions are no longer available in the UK for
RoActemra
.
As suggested by Lemonzest I’ve exchanged a few emails with Roche UK, and here’s their response: “I have discussed your query with our Medical Affairs team and they have confirmed that unfortunately funding extensions are no longer available in the UK for
RoActemra
.
Duncoding
in
PMRGCAuk
7 months ago
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Calendar for Biologics
I started using
RoActemra
(Tocilizumab on Tuesday and the nurse said there was a calendar you could get so you could record the date and which side (my tummy) you did the injection. What do other people do who are on weekly injections? Thank you.
I started using
RoActemra
(Tocilizumab on Tuesday and the nurse said there was a calendar you could get so you could record the date and which side (my tummy) you did the injection. What do other people do who are on weekly injections? Thank you.
barbieg
in
NRAS
11 months ago
Tocilizumab (RoActemra) and low neutrophils?
I've been injecting TOC for just over a year, but in the last three months my neutrophil level has been falling and is now below normal at 1.6 x10^9. I understand that low neutrophils is a known side effect of TOC. My RA nurse asked if I have an infection but I'm not aware of one currently although
I've been injecting TOC for just over a year, but in the last three months my neutrophil level has been falling and is now below normal at 1.6 x10^9. I understand that low neutrophils is a known side effect of TOC. My RA nurse asked if I have an infection but I'm not aware of one currently although
Lolabridge
in
NRAS
4 months ago
Any advice on tapering prednisolone with Methotrexate and RoActemra?
Started Methotrexate 5 weeks ago and 3rd
RoActemra
injection tomorrow. Was told to reduce steroids from a high of 55mg at 5mg/week back in May. Am now on 20mg, reducing to 15mg on this programme at the weekend.
Started Methotrexate 5 weeks ago and 3rd
RoActemra
injection tomorrow. Was told to reduce steroids from a high of 55mg at 5mg/week back in May. Am now on 20mg, reducing to 15mg on this programme at the weekend.
tweety_pie
in
PMRGCAuk
1 year ago
Continue Forever on Low Dose Prednisone?
Hello PMR/GCA friends! I had GCA/PMR in 2017, and slowly tapered prednisone over 4 years to 0. Then after almost a full year off of prednisone, in 2021 I had a relapse. Started again on 60 mg prednisone and Actemra injections . Right now I’m taking 1.5 mg prednisone and Actemra every other
Hello PMR/GCA friends! I had GCA/PMR in 2017, and slowly tapered prednisone over 4 years to 0. Then after almost a full year off of prednisone, in 2021 I had a relapse. Started again on 60 mg prednisone and Actemra injections . Right now I’m taking 1.5 mg prednisone and Actemra every other
Pamk1949
in
PMRGCAuk
15 hours ago
actemra
rheumatologist wants me to put me on Actemra since I’m not tolerating prednisone that well, what has everyone’s experience been?
rheumatologist wants me to put me on Actemra since I’m not tolerating prednisone that well, what has everyone’s experience been?
GivenUp24
in
PMRGCAuk
16 hours ago
Finally, at zero prednisone...still Actemra~!
I've certainly been off the grid with my trip to Maine and then an eight-day visit from my 19-year-old granddaughter from Canada. My brain and heart are just full of wonderful memories. I am still doing weekly injections of Actemra and am certain my rheumatologist will continue that. I remained on .5
I've certainly been off the grid with my trip to Maine and then an eight-day visit from my 19-year-old granddaughter from Canada. My brain and heart are just full of wonderful memories. I am still doing weekly injections of Actemra and am certain my rheumatologist will continue that. I remained on .5
Grammy80
in
PMRGCAuk
1 day ago
GCA..Actemra.
Hi !I am a new to this very informative site and looking for support. I was diagnosed with GCA in December last year by a consultant and had the TA biopsy to confirm. Put on 40mg of Prednisolone and since March of this year have been on Actemra once a week. I have been off the steroids 5 weeks now
Hi !I am a new to this very informative site and looking for support. I was diagnosed with GCA in December last year by a consultant and had the TA biopsy to confirm. Put on 40mg of Prednisolone and since March of this year have been on Actemra once a week. I have been off the steroids 5 weeks now
Hidden
in
PMRGCAuk
3 days ago
GCA flair?
Hello, I have been dealing with GCA for over a year. For the last few months things have been great and I was able to reduce my prednisone, very slowly to 4 1/2 mg a day. 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
Hello, I have been dealing with GCA for over a year. For the last few months things have been great and I was able to reduce my prednisone, very slowly to 4 1/2 mg a day. 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
Plains
in
PMRGCAuk
11 days ago
What IS "Manageable" Pain?
I have been wanting to ask this particular question for well over a year I suppose, and I'm not quite sure why I haven't, but the post that I read this morning from waltztherapy has prompted me to approach the topic. What do people consider manageable pain? Are people 100% pain-free? I don't think
I have been wanting to ask this particular question for well over a year I suppose, and I'm not quite sure why I haven't, but the post that I read this morning from waltztherapy has prompted me to approach the topic. What do people consider manageable pain? Are people 100% pain-free? I don't think
enduros
in
PMRGCAuk
12 days ago
Speedy taper after relapse - safe?
I recently experienced my first GCA/PMR flare about 10 weeks after having reached zero pred. So, either went too fast, or too far or both. Rheumy has now prescribed 40mg x 12 days, then a swift, 12-day taper back to zero. I'm still on weekly Actemra. My symptoms have cleared on the 40mg, but I'm wondering
I recently experienced my first GCA/PMR flare about 10 weeks after having reached zero pred. So, either went too fast, or too far or both. Rheumy has now prescribed 40mg x 12 days, then a swift, 12-day taper back to zero. I'm still on weekly Actemra. My symptoms have cleared on the 40mg, but I'm wondering
Optim11
in
PMRGCAuk
19 days ago
GCA patient with new PMRish symptoms….
Good morning, I’m a first time poster to this forum. I’m 53, diagnosed in May 2023 with GCA after a severe, sudden headache and intense jaw pain. I started on 60 mg Pred and have tapered to 1 mg per day currently. I am doing Actemra injections weekly ans well. Over the last couple of months I’ve had
Good morning, I’m a first time poster to this forum. I’m 53, diagnosed in May 2023 with GCA after a severe, sudden headache and intense jaw pain. I started on 60 mg Pred and have tapered to 1 mg per day currently. I am doing Actemra injections weekly ans well. Over the last couple of months I’ve had
Aoakleymoore
in
PMRGCAuk
23 days ago
Facial Numbness
Having an odd symptom and wondering if you kind folks have any insights. About a week ago, I noticed numbness around my eyebrows and forehead. It was so subtle at first that I wondered if I was imagining it. But now if I touch my eyebrows I can barely feel them. I am wondering if this could be associated
Having an odd symptom and wondering if you kind folks have any insights. About a week ago, I noticed numbness around my eyebrows and forehead. It was so subtle at first that I wondered if I was imagining it. But now if I touch my eyebrows I can barely feel them. I am wondering if this could be associated
Lenore58
in
PMRGCAuk
29 days ago
IV infusion Actemra vs. SQ
Just checking...if you have a choice. Which is the better option for PMR and GCA? IV or SQ? So far, I have had five, 400mg. (6mg. /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
Just checking...if you have a choice. Which is the better option for PMR and GCA? IV or SQ? So far, I have had five, 400mg. (6mg. /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
Bummed24
in
PMRGCAuk
30 days ago
Flare dosage after tapering to zero
Hello everyone, hoping to tap your wisdom. I'm experiencing my first flare (aching neck, shoulders, temples; thankfullyno visual symptoms) since getting off pred in early March 2024. Rheumy on call wants me to take 40mg now as protection against vision loss. I was diagnosed with cranial GCA and PMR
Hello everyone, hoping to tap your wisdom. I'm experiencing my first flare (aching neck, shoulders, temples; thankfullyno visual symptoms) since getting off pred in early March 2024. Rheumy on call wants me to take 40mg now as protection against vision loss. I was diagnosed with cranial GCA and PMR
Optim11
in
PMRGCAuk
1 month ago
I'm off to Maine, down to .5mg pred and holding....
I've been on just .5mg since May 18 and so far, so good. I saw my rheumatologist on the 7th of this month, and we agreed that I would stay at this dosage until I return from my trip on June 25. I have an appointment to see him in 8 weeks. I will continue taking the Actemra weekly, I'm good with that
I've been on just .5mg since May 18 and so far, so good. I saw my rheumatologist on the 7th of this month, and we agreed that I would stay at this dosage until I return from my trip on June 25. I have an appointment to see him in 8 weeks. I will continue taking the Actemra weekly, I'm good with that
Grammy80
in
PMRGCAuk
1 month ago
Off meds: is 13 lucky?
Fingers crossed! After 13 years (7 yrs with PMR then added GCA for another 5) I am off all meds. 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
Fingers crossed! After 13 years (7 yrs with PMR then added GCA for another 5) I am off all meds. 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
PMR2011
in
PMRGCAuk
1 month ago
actemra, kevzara, tocillizumab, sarilumab
Dorset lady advised me to open a new post regarding the yes/ no’s/ maybe s of actemra, kevzara, tocillizumab and sarilumab as medications for PMR. In stead of prednisolone/ prednison. Thanks Dorset lady. may I ask to add comments re. methotrexate too…. i am embarrassed to say that I did nt even
Dorset lady advised me to open a new post regarding the yes/ no’s/ maybe s of actemra, kevzara, tocillizumab and sarilumab as medications for PMR. In stead of prednisolone/ prednison. Thanks Dorset lady. may I ask to add comments re. methotrexate too…. i am embarrassed to say that I did nt even
Kaaswinkel
in
PMRGCAuk
1 month ago
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