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Confused
I have been on high dose pred for 5 months....from60mg down to 30 and back up a few times. I had 2 Actemra injections(epi-pen) and my rheamy says my bloodwork shows almost normal inflammation . I am currently on 35 mg pred and going to 30 next week. I still get a light headache....now my problem is that
I have been on high dose pred for 5 months....from60mg down to 30 and back up a few times. I had 2 Actemra injections(epi-pen) and my rheamy says my bloodwork shows almost normal inflammation . I am currently on 35 mg pred and going to 30 next week. I still get a light headache....now my problem is that
Joseph14612
in
PMRGCAuk
2 years ago
Adrenal Insufficiency???
Hello everyone, this nightmare journey just seems to be never ending and I am so in need of some advice....... 8 days ago I took my last 1mg of Prednisone after being on it for 12 months starting at 65mg plus weekly Actemra injections. It seems that I have done well being able to get off Pred after
Hello everyone, this nightmare journey just seems to be never ending and I am so in need of some advice....... 8 days ago I took my last 1mg of Prednisone after being on it for 12 months starting at 65mg plus weekly Actemra injections. It seems that I have done well being able to get off Pred after
MarksPoint
in
PMRGCAuk
2 years ago
GCA and sore lumpy tongue
I've managed to get to 5.5mg with the help of Actemra over the last 16 months, not as fast my my Rheumy would like but she accepts some folk are slower. Getting below 10 has been very slow going with jaw stiffness, facial/eye pain and cramps recurring and after sticking it out for 2 or 3 days I go
I've managed to get to 5.5mg with the help of Actemra over the last 16 months, not as fast my my Rheumy would like but she accepts some folk are slower. Getting below 10 has been very slow going with jaw stiffness, facial/eye pain and cramps recurring and after sticking it out for 2 or 3 days I go
Happyexplorer
in
PMRGCAuk
2 years ago
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Looking for short video on PMR
Hi all. I am really reaching my limits with this. I cannot find a dose of pred that works....23.5....I had one great day but everything tanked (rinse and repeat for months). I am due to go on Actemra...just not sure when and now I have this skin thing that I thought was improving with oral and topical
Hi all. I am really reaching my limits with this. I cannot find a dose of pred that works....23.5....I had one great day but everything tanked (rinse and repeat for months). I am due to go on Actemra...just not sure when and now I have this skin thing that I thought was improving with oral and topical
Wallysma
in
PMRGCAuk
2 years ago
Thank you everyone for your company over the last two years in my GCA journey
I was diagnosed with GCA in December 2020. With the help of an excellent and very helpful Rheumatologist (who talked me through a few wobbles)support from this website and family, I have been clear since February this year. I have managed to keep working throughout so feel very blessed. My regime starting
I was diagnosed with GCA in December 2020. With the help of an excellent and very helpful Rheumatologist (who talked me through a few wobbles)support from this website and family, I have been clear since February this year. I have managed to keep working throughout so feel very blessed. My regime starting
Blairmore
in
PMRGCAuk
2 years ago
Seven year saga.
The saga continues. Thank you to anyone who takes the time to read my never ending story. I am feeling so fed up with my 7 year PMR journey. Three major flares and now another one. I have been struggling to taper over the past six months. Doing DSNS at 1/2 mg every two months from 12.5. My CRP and ESR
The saga continues. Thank you to anyone who takes the time to read my never ending story. I am feeling so fed up with my 7 year PMR journey. Three major flares and now another one. I have been struggling to taper over the past six months. Doing DSNS at 1/2 mg every two months from 12.5. My CRP and ESR
Nightingales
in
PMRGCAuk
2 years ago
Flare?
Greetings from West Michigan, USA. I was diagnosed with PMR/GCA 3.5 years ago. I have not been treated for any flares with these diseases but have gone up and down with prednisone due to infections that did not respond to antibiotics alone. The lowest dose of prednisone I was on was 2mg. I am currently
Greetings from West Michigan, USA. I was diagnosed with PMR/GCA 3.5 years ago. I have not been treated for any flares with these diseases but have gone up and down with prednisone due to infections that did not respond to antibiotics alone. The lowest dose of prednisone I was on was 2mg. I am currently
knoone
in
PMRGCAuk
2 years ago
Update on shooting pain to breast - esophagitis
I have gastritis and esophagitis to add to my woes and the shooting pain it appears was possibly my esophagus going in to spasm. It hasn't happened again today but Ive hardly ate anything as even a cup of tea is giving me problems. Have doubled my Lanzoprazole and taken gaviscon advanced after any
I have gastritis and esophagitis to add to my woes and the shooting pain it appears was possibly my esophagus going in to spasm. It hasn't happened again today but Ive hardly ate anything as even a cup of tea is giving me problems. Have doubled my Lanzoprazole and taken gaviscon advanced after any
HappyDiamonds
in
PMRGCAuk
2 years ago
Denied medical care because of GCA and Actemra.
In the US. PMr 20 plus years, GCA 12 plus. Full dose Actemra infusion monthly, 5mg. prednisone. Actemra worked great at first. Now SED rate creeping back up. I have a chronic adenoid tissue infection, at least 6 yo 8 years. Hard to remember when it really started. ENT was planning on full course
In the US. PMr 20 plus years, GCA 12 plus. Full dose Actemra infusion monthly, 5mg. prednisone. Actemra worked great at first. Now SED rate creeping back up. I have a chronic adenoid tissue infection, at least 6 yo 8 years. Hard to remember when it really started. ENT was planning on full course
phebamom
in
PMRGCAuk
2 years ago
Blood pressure while on ACTEMRA
Hello, I had my infusion on Wednesday. I was exposed to someone with Covid the Sunday before and thought I may have covid because of the pretty bad headache I developed in Friday. As the day went on it got worse so I decided to check my blood pressure since I did not have any other covid symptoms. My
Hello, I had my infusion on Wednesday. I was exposed to someone with Covid the Sunday before and thought I may have covid because of the pretty bad headache I developed in Friday. As the day went on it got worse so I decided to check my blood pressure since I did not have any other covid symptoms. My
Plains
in
PMRGCAuk
2 years ago
TCZ and Psoriasis
Historically, have had a small spot of Psoriasis on nape of neck. After a year of Prednisone, it did disappear. Yippeee I thought. Now, after being off Pred, the wee spot is back. Is it possible or coincidence, that the Actemra/TCZ injections are causing the psoriasis to make its reappearance? I have
Historically, have had a small spot of Psoriasis on nape of neck. After a year of Prednisone, it did disappear. Yippeee I thought. Now, after being off Pred, the wee spot is back. Is it possible or coincidence, that the Actemra/TCZ injections are causing the psoriasis to make its reappearance? I have
jarn
in
PMRGCAuk
2 years ago
Actemra
I have had 5 doses so far.I find the injector pens are very painful as fluid goes in. Do other people find this?
I have had 5 doses so far.I find the injector pens are very painful as fluid goes in. Do other people find this?
Hidden
in
PMRGCAuk
2 years ago
Don't blame it all on the prednisone! Check things out.👩🏻‍⚕️ or 👨🏻‍⚕️
I'm writing to add a soft warning to be mindful. I was diagnosed with GCA in 2019 and finally got down to single digits this summer, I'm taking 5 mg per day plus Actemra. I'm only dropping .5 mg every six weeks. It has been fairly smooth except the fatigue, I did nothing and was [i]so, so tired![/
I'm writing to add a soft warning to be mindful. I was diagnosed with GCA in 2019 and finally got down to single digits this summer, I'm taking 5 mg per day plus Actemra. I'm only dropping .5 mg every six weeks. It has been fairly smooth except the fatigue, I did nothing and was [i]so, so tired![/
Grammy80
in
PMRGCAuk
2 years ago
LDN (Low Dose Naltrexone) for PMR?
Has anyone had experience using LDN for their PMR? Following my initial PMR diagnosis fall of 2021 I was put on 15mg of prednisone. I couldn't tolerate it, had serious 'rhoid rage' and quickly tapered off. My rheumatologist put me on monthly Actemra infusions. After five infusions it became evident
Has anyone had experience using LDN for their PMR? Following my initial PMR diagnosis fall of 2021 I was put on 15mg of prednisone. I couldn't tolerate it, had serious 'rhoid rage' and quickly tapered off. My rheumatologist put me on monthly Actemra infusions. After five infusions it became evident
mppk
in
PMRGCAuk
2 years ago
Help for extreme pain in thighs and arms
I took my last prednisone tablet mid May (GCA diagnosed late April 2019); cortisol test in June was 203 (reference range in Canada is 135-537); 380 in September so my adrenal glands are well on their way to recovery. I have been on Actemra injections since October 2019, now every three weeks (until January
I took my last prednisone tablet mid May (GCA diagnosed late April 2019); cortisol test in June was 203 (reference range in Canada is 135-537); 380 in September so my adrenal glands are well on their way to recovery. I have been on Actemra injections since October 2019, now every three weeks (until January
GratefulBailey
in
PMRGCAuk
2 years ago
On Actemra now and reducing Prednisone
Hi everyone, I read the posts everyday and it's a comfort to me to be able to get good information about what is going on with my body, and not to feel alone in this strange situation. I was diagnosed with PMR & GCA early July, three months ago. What a confusing hell it was. I'm grateful for the Prednisone
Hi everyone, I read the posts everyday and it's a comfort to me to be able to get good information about what is going on with my body, and not to feel alone in this strange situation. I was diagnosed with PMR & GCA early July, three months ago. What a confusing hell it was. I'm grateful for the Prednisone
potterylady
in
PMRGCAuk
2 years ago
actemra Pmr/Gca
I had my first infusion of Actemra two weeks ago. About a half hour after leaving the center my lip became numb. I took a Benadryl just in case it was a reaction. It did go away. I have recently noticed I am not really hungry and have lost some weight. I also have this nervousness feeling (like my insides
I had my first infusion of Actemra two weeks ago. About a half hour after leaving the center my lip became numb. I took a Benadryl just in case it was a reaction. It did go away. I have recently noticed I am not really hungry and have lost some weight. I also have this nervousness feeling (like my insides
Plains
in
PMRGCAuk
2 years ago
ACTEMRA dose with prednisone
I was approved yesterday to start an infusion of ACTEMRA. The Rheumy is starting me on 500 mg. How much will this reduce my prednisone? I have suspected GCA with PMR. I have a trip planned in August to Ireland but will not be back by my infusion date. What will happen? Will I have to take more prednisone
I was approved yesterday to start an infusion of ACTEMRA. The Rheumy is starting me on 500 mg. How much will this reduce my prednisone? I have suspected GCA with PMR. I have a trip planned in August to Ireland but will not be back by my infusion date. What will happen? Will I have to take more prednisone
Plains
in
PMRGCAuk
2 years ago
Bronchial Pneumonia, while tapering on prednisone and Actemra.
so my croup turned into Bronchial Pneumonia, I thought I was feeling better and then bam! I missed one week of Actemra because of the croup. I did take my injection this past Friday and then yesterday found out I had pneumonia. My primary care is aware of the Actemra and also the fact that my rheumatologist
so my croup turned into Bronchial Pneumonia, I thought I was feeling better and then bam! I missed one week of Actemra because of the croup. I did take my injection this past Friday and then yesterday found out I had pneumonia. My primary care is aware of the Actemra and also the fact that my rheumatologist
pmac22
in
PMRGCAuk
2 years ago
Actemra?
I have been started on Actemra but don’t know if I need it. I question if I have GCA. The Dr who should be retired made a snap judgement. Even if I had GCA, can you wean from Actemra? I have had infusions (2), one in July. One in August and another is scheduled for Friday. I don’t want it if I don’t
I have been started on Actemra but don’t know if I need it. I question if I have GCA. The Dr who should be retired made a snap judgement. Even if I had GCA, can you wean from Actemra? I have had infusions (2), one in July. One in August and another is scheduled for Friday. I don’t want it if I don’t
Greytree
in
PMRGCAuk
2 years ago
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