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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
2 months 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
2 months 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
2 months ago
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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
2 months 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
2 months 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
2 months 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
Kaaswinkel72
in
PMRGCAuk
2 months ago
Off Prednisone for 3 weeks but.......
I have been on prednisone since May of 2021. 10 months ago my rheumatologist added Actemra infusions to my regimen. 3 weeks ago I finally was completely weaned off of prednisone. This past week, and just one day after my infusion, I started having severe stomach cramping, diarrhea, shoulder joint pains
I have been on prednisone since May of 2021. 10 months ago my rheumatologist added Actemra infusions to my regimen. 3 weeks ago I finally was completely weaned off of prednisone. This past week, and just one day after my infusion, I started having severe stomach cramping, diarrhea, shoulder joint pains
A77bruin
in
PMRGCAuk
3 months ago
GCA-Diagnosis
So far on my journey after diagnosis of GCA was put on 60 mg Prednisone and went down slowly to none. Have been on Actemra shot weekly for 16 months now with no flare. Has anyone gotten of Actemra as well as Prednisone with no problems?
So far on my journey after diagnosis of GCA was put on 60 mg Prednisone and went down slowly to none. Have been on Actemra shot weekly for 16 months now with no flare. Has anyone gotten of Actemra as well as Prednisone with no problems?
LRevell
in
PMRGCAuk
3 months ago
I know I’m having a flare-rheum disagrees
Hi Friends- I was diagnosed with GCA in April ‘23 after a five day hospitalization. My symptoms: severe headaches, teeth and jaw pain and excruciating right ear pain. Finally they figured it out. Started on 60 mgs of Pred and Actemra. Dr. withdrew Actemra in Feb. as she was concerned about a neuropathy
Hi Friends- I was diagnosed with GCA in April ‘23 after a five day hospitalization. My symptoms: severe headaches, teeth and jaw pain and excruciating right ear pain. Finally they figured it out. Started on 60 mgs of Pred and Actemra. Dr. withdrew Actemra in Feb. as she was concerned about a neuropathy
Birdfriend
in
PMRGCAuk
3 months ago
Spoke too soon
After I posted, I found some chatter from four years ago addressing my concerns. It seems like I just need to wait to taper until I have better control of my symptoms. Admittedly, I am feeling pressure from my provider to reduce five mg every week or so, since I have been on Actemra. Which I am not
After I posted, I found some chatter from four years ago addressing my concerns. It seems like I just need to wait to taper until I have better control of my symptoms. Admittedly, I am feeling pressure from my provider to reduce five mg every week or so, since I have been on Actemra. Which I am not
Bummed24
in
PMRGCAuk
3 months ago
Should it take this long to taper with PMR/GCA?
I am so sorry to be needing advice again, but I am wondering if anyone else has struggled to wean from higher doses of Prednisone for PMR and GCA. Since late January I have been on dosages of 65mg. and weaned down to 45mg. by early April. Since then I can't seem to get below 45mg. as I have a return
I am so sorry to be needing advice again, but I am wondering if anyone else has struggled to wean from higher doses of Prednisone for PMR and GCA. Since late January I have been on dosages of 65mg. and weaned down to 45mg. by early April. Since then I can't seem to get below 45mg. as I have a return
Bummed24
in
PMRGCAuk
3 months ago
Antibiotic and Actemra
Hello folks, I have an infection in my tooth and need to take an antibiotic for 10 days. If I'm understanding the guidelines for Actemra correctly, apparently, I am supposed to stop my Actemra injection (which is every two weeks) while I am on an antibiotic. My question is, is that really necessary
Hello folks, I have an infection in my tooth and need to take an antibiotic for 10 days. If I'm understanding the guidelines for Actemra correctly, apparently, I am supposed to stop my Actemra injection (which is every two weeks) while I am on an antibiotic. My question is, is that really necessary
ILbbHpmr
in
PMRGCAuk
4 months ago
Generic TCZ---is it available in the UK?
My friends, Without this forum, my GCA journey would have been entirely different. You have all been there to support me, educate me, and reinforce me when I thought I was sinking. It has always made me sad that TCZ is only available to GCA patients for one year, subject to review for an additional
My friends, Without this forum, my GCA journey would have been entirely different. You have all been there to support me, educate me, and reinforce me when I thought I was sinking. It has always made me sad that TCZ is only available to GCA patients for one year, subject to review for an additional
Grammy80
in
PMRGCAuk
4 months ago
Trip to the Er/ED
A day or 2 ago, I wrote in about experiencing vertigo. I tried the Epley Maneuver on myself, and have not had any more episodes of such extreme, dramatic vertigo. However, I was left with mild dizziness, such as when one has the flu and it feels like you are swimming underwater and everything seems unsteady
A day or 2 ago, I wrote in about experiencing vertigo. I tried the Epley Maneuver on myself, and have not had any more episodes of such extreme, dramatic vertigo. However, I was left with mild dizziness, such as when one has the flu and it feels like you are swimming underwater and everything seems unsteady
Lenore58
in
PMRGCAuk
4 months ago
giant Cell
I’m off Prednisone and on Actemra only now. I inject it once a week. Lately been feeling a little light headed and woozy. My blood pressure is fine!
I’m off Prednisone and on Actemra only now. I inject it once a week. Lately been feeling a little light headed and woozy. My blood pressure is fine!
LRevell
in
PMRGCAuk
4 months ago
GCA Questions
Hi Kind Friends, My GCA hit last October, about 6 months ago, and I was put on 60 mg. Prednisone. (I’ve also been on Actemra since November.) I’m doing pretty well, but I wanted to check in regarding my tapering. I’m down to 8 mg. (from 9, about a week ago), and will have stayed there 1 month when
Hi Kind Friends, My GCA hit last October, about 6 months ago, and I was put on 60 mg. Prednisone. (I’ve also been on Actemra since November.) I’m doing pretty well, but I wanted to check in regarding my tapering. I’m down to 8 mg. (from 9, about a week ago), and will have stayed there 1 month when
Lenore58
in
PMRGCAuk
4 months ago
testing for IL6
Is it possible to test for the IL 6 factor before starting Actemra to see if Actemra will work for you?
Is it possible to test for the IL 6 factor before starting Actemra to see if Actemra will work for you?
Mstiles
in
PMRGCAuk
4 months ago
Jaw locking while tapering for GCA
I am in the process of tapering from 65 mg of Prednisone for GCA. Tonight the right side of my jaw temporarily locked while brushing my teeth. If I am honest, my scalp is becoming a bit tender again, and my tinnitus has increased a notch. I was on the high doses of Prednisone for six weeks, and began
I am in the process of tapering from 65 mg of Prednisone for GCA. Tonight the right side of my jaw temporarily locked while brushing my teeth. If I am honest, my scalp is becoming a bit tender again, and my tinnitus has increased a notch. I was on the high doses of Prednisone for six weeks, and began
Bummed24
in
PMRGCAuk
4 months ago
Confused
Hello to all, I am a 61 year old man living in Madrid (Spain). At the beginning of December 2023 I had a loss of vision in my left eye, as well as a terrible headache. I went to the hospital and was diagnosed with GCA. I was treated with high doses of corticosteroids. After fourteen days I was discharged
Hello to all, I am a 61 year old man living in Madrid (Spain). At the beginning of December 2023 I had a loss of vision in my left eye, as well as a terrible headache. I went to the hospital and was diagnosed with GCA. I was treated with high doses of corticosteroids. After fourteen days I was discharged
Azulmarino
in
PMRGCAuk
4 months ago
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