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GCA, Actemra and feeling exhausted
I have been so much better since taking Tocilizumab but I still get days of aching all over and feeling really exhausted. I am really not my old self and wonder if I ever will be . My husband and I are looking after an 11 month grandchild which means a 2 1/2 hr journey each way in the rush hour - leaving
I have been so much better since taking Tocilizumab but I still get days of aching all over and feeling really exhausted. I am really not my old self and wonder if I ever will be . My husband and I are looking after an 11 month grandchild which means a 2 1/2 hr journey each way in the rush hour - leaving
christine2715
in
PMRGCAuk
6 years ago
Tapering duration for GCA and doses of Pred over time ?
I am probably asking a difficult question - but I am wondering if any research exists about the duration of tapering and 'average' effective doses of Pred at various points in time - and please let me know if this exists - especially our 'experts' here !!?? I have expressed this rather 'unscientifically
I am probably asking a difficult question - but I am wondering if any research exists about the duration of tapering and 'average' effective doses of Pred at various points in time - and please let me know if this exists - especially our 'experts' here !!?? I have expressed this rather 'unscientifically
Rimmy
in
PMRGCAuk
6 years ago
Medicare accepted my Actemra infusion claim!
Yeah, it is a good day. My Medicare part B accepted 100 %of my Actemra infusion claim. They paid everything but a little over $800, so my secondary which is AARP plan F will pay the rest. It has been two weeks now since my first infusion and so far I have not had any problems. I truly at this point
Yeah, it is a good day. My Medicare part B accepted 100 %of my Actemra infusion claim. They paid everything but a little over $800, so my secondary which is AARP plan F will pay the rest. It has been two weeks now since my first infusion and so far I have not had any problems. I truly at this point
CRW-68
in
PMRGCAuk
6 years ago
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PMR, GCA, Fibromyalgia
Hi...Is there anyone who has these illnesses? Can you tell me how you cope or your experiences? Struggle with extreme fatigue. I am at the 2 year mark. I started with 60mg Prednisone. Now I self administer a shot of Actemra every week and take 2 mg. Rayos (Prednisone) a night. Thank you for your reply
Hi...Is there anyone who has these illnesses? Can you tell me how you cope or your experiences? Struggle with extreme fatigue. I am at the 2 year mark. I started with 60mg Prednisone. Now I self administer a shot of Actemra every week and take 2 mg. Rayos (Prednisone) a night. Thank you for your reply
Dream21
in
PMRGCAuk
6 years ago
I give up!!!!!!! discouraged
sooooooooooo----Prednisone, GCA and Actemra all thave dizziness and lightheaded, as a side effect, then throw in PMR and fatigue, no wonder I feel like awful most of the time. ---I'm currently at 50 mg, and if I only decrease 5 mg a month it will take me forever to get low enough to get rid of these
sooooooooooo----Prednisone, GCA and Actemra all thave dizziness and lightheaded, as a side effect, then throw in PMR and fatigue, no wonder I feel like awful most of the time. ---I'm currently at 50 mg, and if I only decrease 5 mg a month it will take me forever to get low enough to get rid of these
pwalker801
in
PMRGCAuk
6 years ago
The beauty of the right treatment
After starting treatment with
RoActemra
I now have the use of my hands back. Loving my new hobby 😊
After starting treatment with
RoActemra
I now have the use of my hands back. Loving my new hobby 😊
Hidden
in
NRAS
6 years ago
Today's the day!
We don't know whether the teddy bears are having their picnic, but the NICE guidance for the use of tocilizumab (
Roactemra
) are published this morning on the NICE website. https://www.nice.org.uk/guidance/TA518 Criteria are tight, as we expected, but it's a start.
We don't know whether the teddy bears are having their picnic, but the NICE guidance for the use of tocilizumab (
Roactemra
) are published this morning on the NICE website. https://www.nice.org.uk/guidance/TA518 Criteria are tight, as we expected, but it's a start.
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
6 years ago
actemra
Diagnosed with PMR late Febr 2018 & GCA in April--currently taking 50 mg of prednisone daily. Started on Acterma injections, have had 4 infections, my question is for 2 days after each injection I'm very lightheaded, dizzy and fatigued. Is anyone else experiencing this, and has your body eventually
Diagnosed with PMR late Febr 2018 & GCA in April--currently taking 50 mg of prednisone daily. Started on Acterma injections, have had 4 infections, my question is for 2 days after each injection I'm very lightheaded, dizzy and fatigued. Is anyone else experiencing this, and has your body eventually
pwalker801
in
PMRGCAuk
6 years ago
Actemra update
After re-reading my Rheumatologist’s chart note I need to correct my tritration schedule that I posted earlier. So here goes. I am currently on 30 mgs of Prednisone. This Sunday I drop 10 mgs to 20 mgs for two weeks. I then drop down to 15 mgs for another two weeks. I will then have my appointment
After re-reading my Rheumatologist’s chart note I need to correct my tritration schedule that I posted earlier. So here goes. I am currently on 30 mgs of Prednisone. This Sunday I drop 10 mgs to 20 mgs for two weeks. I then drop down to 15 mgs for another two weeks. I will then have my appointment
CRW-68
in
PMRGCAuk
6 years ago
First Actemra infusion update
I made it! From beginning to end I was at the infusion center for 3 1/2 hours. All went very smoothly and without any reactions. I am now thankfully on track to reiterate down 10 mgs this Sunday, and if all continues to go well, another 10 mgs in another 2 weeks. My schedule had been to reiterate
I made it! From beginning to end I was at the infusion center for 3 1/2 hours. All went very smoothly and without any reactions. I am now thankfully on track to reiterate down 10 mgs this Sunday, and if all continues to go well, another 10 mgs in another 2 weeks. My schedule had been to reiterate
CRW-68
in
PMRGCAuk
6 years ago
First Actemra infusion today
A bit nervous, today I will be having my first Actemra infusion. In January I started on 60 mg of prednisone, am down to 30 mg currently. My Rheumatologist wants me to start the Actemra so I can titrate off of the prednisone faster due to my experiencing so many negative side effects from prednisone
A bit nervous, today I will be having my first Actemra infusion. In January I started on 60 mg of prednisone, am down to 30 mg currently. My Rheumatologist wants me to start the Actemra so I can titrate off of the prednisone faster due to my experiencing so many negative side effects from prednisone
CRW-68
in
PMRGCAuk
6 years ago
Emotional and getting muscle spasms
Hi I was just wondering if when tapering down (came from 60mg now at 8mg, also am on 162 Actemra weekly) came down to 8mg last Friday. I am finding I am fearce emotional 😩😪 also am getting muscle spasam inside my body they don’t last long but can be uncomfortable. I found today that I got headaces
Hi I was just wondering if when tapering down (came from 60mg now at 8mg, also am on 162 Actemra weekly) came down to 8mg last Friday. I am finding I am fearce emotional 😩😪 also am getting muscle spasam inside my body they don’t last long but can be uncomfortable. I found today that I got headaces
Lucylooloo
in
PMRGCAuk
6 years ago
Day two of raised dose prednisone
Yesterday I was looking for input on my situation. I’m doing much better today. I raised my prednisone 5 mgs and I’m not suffering today. I did wake up very sore but so far no headache and pain has eased up. Definitely was in a flare because of coming off the Actemra. The doc should have told me
Yesterday I was looking for input on my situation. I’m doing much better today. I raised my prednisone 5 mgs and I’m not suffering today. I did wake up very sore but so far no headache and pain has eased up. Definitely was in a flare because of coming off the Actemra. The doc should have told me
Leeleep
in
PMRGCAuk
6 years ago
Suffering severely. Cortisol too low.
I posted last around three months ago and asked about members who might be taking supplements to help restore cortisol levels. I never did see a functional MD. I have gotten much worse. However, I had a crown replaced and oral surgery to remove a molar. I was given instructions from rheumatologist
I posted last around three months ago and asked about members who might be taking supplements to help restore cortisol levels. I never did see a functional MD. I have gotten much worse. However, I had a crown replaced and oral surgery to remove a molar. I was given instructions from rheumatologist
Leeleep
in
PMRGCAuk
6 years ago
More Prednisone or Less Activity🤔
I am taking Actemra injections and prednisone. I recently flared, so I am back up to 5m daily, but now stable and feel good. I have been at this long enough to know that I could curtail a lot of my activity and continue the slow taper....but I would rather do all the activity and stay at 5m.....cannot
I am taking Actemra injections and prednisone. I recently flared, so I am back up to 5m daily, but now stable and feel good. I have been at this long enough to know that I could curtail a lot of my activity and continue the slow taper....but I would rather do all the activity and stay at 5m.....cannot
Klah
in
PMRGCAuk
6 years ago
Acid reducers
What about stomach issues while on prednisone? On Actemra? Anyone taking acid controllers such as proton pump inhibitors or h2-2 inhibitors? My rheumy and my gp feel I should be on one. Starting to have a few twinges of pain. I understand they block nutrient absorption and even contribute to fractures
What about stomach issues while on prednisone? On Actemra? Anyone taking acid controllers such as proton pump inhibitors or h2-2 inhibitors? My rheumy and my gp feel I should be on one. Starting to have a few twinges of pain. I understand they block nutrient absorption and even contribute to fractures
gtate1914
in
PMRGCAuk
6 years ago
groin pull
history---diagnosed PMR Febr 2018, GCA April 2018, on 55 mg of prednisone, just took my 2nd shot of Actemra this morning. My question is I feel like I have a groin pull, haven't done any exercises or anything because of the fatigue, this just came on suddenly, hurts to walk, even have somewhat of a
history---diagnosed PMR Febr 2018, GCA April 2018, on 55 mg of prednisone, just took my 2nd shot of Actemra this morning. My question is I feel like I have a groin pull, haven't done any exercises or anything because of the fatigue, this just came on suddenly, hurts to walk, even have somewhat of a
pwalker801
in
PMRGCAuk
6 years ago
Update- showing articles to rheumy
Continuing the story about being dismissed by my rheumy and searching for a better one. I got a referral and saw the new doctor on April 25. I’m not sure as this will be better, mixed feelings about her, and to complicate things my son who lives with me broke a bone in his foot last Friday
Continuing the story about being dismissed by my rheumy and searching for a better one. I got a referral and saw the new doctor on April 25. I’m not sure as this will be better, mixed feelings about her, and to complicate things my son who lives with me broke a bone in his foot last Friday
Mstiles
in
PMRGCAuk
6 years ago
Rising blood sugars
Now on
RoActemra
. My latest HbA1C has risen considerably. I am a Type 2 Diabetic, well controlled on tablets for many years.
Now on
RoActemra
. My latest HbA1C has risen considerably. I am a Type 2 Diabetic, well controlled on tablets for many years.
Pat9442
in
NRAS
6 years ago
temporal arteritis for two years now
I'm a 60 year old woman who is dealing with temporal arteritis for the second time. This time it has been two years now and I'm losing my mind. The first time I had it I was 57 years old and it lasted 10 months. I was on prednisone for 1 year and it went away for almost a year. Then all of a sudden
I'm a 60 year old woman who is dealing with temporal arteritis for the second time. This time it has been two years now and I'm losing my mind. The first time I had it I was 57 years old and it lasted 10 months. I was on prednisone for 1 year and it went away for almost a year. Then all of a sudden
lcove
in
PMRGCAuk
6 years ago
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