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Numb toes
Anyone else with GCA having issues with toes going numb? My toes go numb when I stand for any length of time, especially standing in my sewing room, and while cooking supper. PMR/GCA at least 20 years, with relapsing and remission. On 5mg. prednisone and monthly infusion of Actemra. Age 66
Anyone else with GCA having issues with toes going numb? My toes go numb when I stand for any length of time, especially standing in my sewing room, and while cooking supper. PMR/GCA at least 20 years, with relapsing and remission. On 5mg. prednisone and monthly infusion of Actemra. Age 66
phebamom
in
PMRGCAuk
2 years ago
Ear pressure and blockage in gca
My wife is on gca treatment from last 10 months ,she took 60 mg tapering prednisone with Actemra weekly in starting 4 months , now , only on prednisone 9 mg , got two flare at 10 mg in between, and went back to 40 mg Her , main symptom are, pressure and blockage on both side of ear ( but no problem
My wife is on gca treatment from last 10 months ,she took 60 mg tapering prednisone with Actemra weekly in starting 4 months , now , only on prednisone 9 mg , got two flare at 10 mg in between, and went back to 40 mg Her , main symptom are, pressure and blockage on both side of ear ( but no problem
Rajuguide
in
PMRGCAuk
2 years ago
Headache for 2 weeks
I’m down to 4 mg prednisone and Actemra monthly infusions for past 4 months. My rheumatologist thinks I should be totally off of pred now but I followed his instructions til I got to 5. I went to 4 almost two weeks ago and have had a headache every day. It’s starting to worry me. I took a Tylenol 45
I’m down to 4 mg prednisone and Actemra monthly infusions for past 4 months. My rheumatologist thinks I should be totally off of pred now but I followed his instructions til I got to 5. I went to 4 almost two weeks ago and have had a headache every day. It’s starting to worry me. I took a Tylenol 45
nallufl24
in
PMRGCAuk
2 years ago
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Advice please
For the second time my rheumatologist has weaned me off prednisone using Actemra. The first time I got to 1mg but stopped it because I had experienced constant cystitis for the 6 months I had been injecting it. That was in May 2021. She put me back on it last November as I had a VSG (inflammation marker
For the second time my rheumatologist has weaned me off prednisone using Actemra. The first time I got to 1mg but stopped it because I had experienced constant cystitis for the 6 months I had been injecting it. That was in May 2021. She put me back on it last November as I had a VSG (inflammation marker
Mahler2
in
PMRGCAuk
2 years ago
When do I panic? Already did!
Thanks to all of you who responded to my first post about whether or not to go to the ER when I exhibited growing symptons of GCA - swollen and sore temples, pain migrating down to jaw when I was attempting to taper down to 17.5 mg daily of prenisone. All responses were that I should err on the side
Thanks to all of you who responded to my first post about whether or not to go to the ER when I exhibited growing symptons of GCA - swollen and sore temples, pain migrating down to jaw when I was attempting to taper down to 17.5 mg daily of prenisone. All responses were that I should err on the side
91066Jackson
in
PMRGCAuk
2 years ago
GCA since October 2020 -from Virginia
New here! Naively, I thought if I did everything doctor advised, I would be “cured” by now. Now realize this seems to be an ongoing condition, with many setbacks. I have tapered to 8mg prednisone, 10mg methotrexate, and started monthly infusion of Actemra in February. Still have symptoms, particularly
New here! Naively, I thought if I did everything doctor advised, I would be “cured” by now. Now realize this seems to be an ongoing condition, with many setbacks. I have tapered to 8mg prednisone, 10mg methotrexate, and started monthly infusion of Actemra in February. Still have symptoms, particularly
Elephants2019
in
PMRGCAuk
2 years ago
Update; pred taper and back injecitons
First of all, the back injections work because now I'm back to pain and stints of short-term standing and then the walker. So, that is good news. Now, my back feels almost as bad as before but I am due for the second round of diagnostic injecitons on March 15th, analyze the pain diary and then hopefully
First of all, the back injections work because now I'm back to pain and stints of short-term standing and then the walker. So, that is good news. Now, my back feels almost as bad as before but I am due for the second round of diagnostic injecitons on March 15th, analyze the pain diary and then hopefully
Grammy80
in
PMRGCAuk
2 years ago
Alternative to prednisone
I am about to be tapered off prednisone and put on the biologic medication Actemra (Tocilizumab) as my rheumatologist says the long term effects of prednisone are very hard on the body. The Actemra will be self injected weekly. I am interested to hear from anyone with experience with this treatment.
I am about to be tapered off prednisone and put on the biologic medication Actemra (Tocilizumab) as my rheumatologist says the long term effects of prednisone are very hard on the body. The Actemra will be self injected weekly. I am interested to hear from anyone with experience with this treatment.
Strelitzia
in
PMRGCAuk
2 years ago
Shingles is urgent!
After a post about Shingles, it is worth pointing out that if you think you have Shingles, contact GP immediately or emergency 'phone number if out of hours as the antivirals have to be prescribed as soon as possible to help. I had Shingles a couple of years ago while on Pred (no Actemra or anything
After a post about Shingles, it is worth pointing out that if you think you have Shingles, contact GP immediately or emergency 'phone number if out of hours as the antivirals have to be prescribed as soon as possible to help. I had Shingles a couple of years ago while on Pred (no Actemra or anything
Roltuba
in
PMRGCAuk
2 years ago
Actemra and immune system
For someone on has been on weekly Actemra injections for 8 months & has had numerous respiratory infections, how concerned should they feel should they test positive for Covid 19?
For someone on has been on weekly Actemra injections for 8 months & has had numerous respiratory infections, how concerned should they feel should they test positive for Covid 19?
BossHoss
in
PMRGCAuk
2 years ago
Can't get on top of this flare
HI, I have PMR/GCA and have been tapering slowly, helped by Actemra. I got to 2mg of Pred and was fine. I didn't use the Actemra on 4th Feb as I had my 4th Covid vaccination that day (I've had experience of my neutrophils dipping dramatically after vaccinations and Actemra might make the recovery slower
HI, I have PMR/GCA and have been tapering slowly, helped by Actemra. I got to 2mg of Pred and was fine. I didn't use the Actemra on 4th Feb as I had my 4th Covid vaccination that day (I've had experience of my neutrophils dipping dramatically after vaccinations and Actemra might make the recovery slower
PastelsinArt
in
PMRGCAuk
2 years ago
PMR/GCA and childhood emotional abuse
Just wondering if anybody else feels/believes there may be a connection. I have been diagnosed with complex post traumatic stress disorder. Trauma on top of trauma on top of trauma. I am age 66. I am wondering if there could be a connection between so much trauma and the development of this cluster
Just wondering if anybody else feels/believes there may be a connection. I have been diagnosed with complex post traumatic stress disorder. Trauma on top of trauma on top of trauma. I am age 66. I am wondering if there could be a connection between so much trauma and the development of this cluster
phebamom
in
PMRGCAuk
2 years ago
Root canal, two surgeries and an ablation.
Over the next two months these are all needed to give me a better quality of life. I’m on 4mg of prednisone and inject Actemra once a month. My root canal is next week, surgery to remove a bone in my thumb three weeks after that, an ablation for my Barrett’s esophagus the second week in April and surgery
Over the next two months these are all needed to give me a better quality of life. I’m on 4mg of prednisone and inject Actemra once a month. My root canal is next week, surgery to remove a bone in my thumb three weeks after that, an ablation for my Barrett’s esophagus the second week in April and surgery
Blackcatlover
in
PMRGCAuk
2 years ago
Actemra and Blood pressure
Has any one else developed high blood pressure on Actemra. My rheumatologist doubled my Actemra dose last month and now my BP is out of control.
Has any one else developed high blood pressure on Actemra. My rheumatologist doubled my Actemra dose last month and now my BP is out of control.
phebamom
in
PMRGCAuk
2 years ago
Actemra - dizziness? Nausea? Or too much wine?
Hi - I’m two weeks into Actemra for GCA (a weekly self injection) and have developed dizziness. It’s not extreme and so far it’s manageable. It occurs whether I am sitting standing or walking around. Recently I had occasion to enjoy more than a little bit of alcohol at a party. My night ended terribly
Hi - I’m two weeks into Actemra for GCA (a weekly self injection) and have developed dizziness. It’s not extreme and so far it’s manageable. It occurs whether I am sitting standing or walking around. Recently I had occasion to enjoy more than a little bit of alcohol at a party. My night ended terribly
GCAfiveyearrelapse
in
PMRGCAuk
2 years ago
My what a long journey!
Hello I’m back. After 10 years of PMR with GCA the last 4, I had done very well on Actemra. Was able to taper off Pred, then in Sept off Actemra. 4 glorious months off meds and it’s back! Classic PMR symptoms, along with niggles of GCA (hoarseness, ear aches) and elevated markers. Dang! I am lucky enough
Hello I’m back. After 10 years of PMR with GCA the last 4, I had done very well on Actemra. Was able to taper off Pred, then in Sept off Actemra. 4 glorious months off meds and it’s back! Classic PMR symptoms, along with niggles of GCA (hoarseness, ear aches) and elevated markers. Dang! I am lucky enough
PMR2011
in
PMRGCAuk
2 years ago
Need Help with Reducing Pred
Its been two years since I last wrote on this forum and quite frankly I never thought I had to as my journey with GCA and PMR has been fairly uneventful. BUT now I need some advice. I started November 2019 on 40 mg of prednisone with Actemra to follow about two months later and felt such relief from
Its been two years since I last wrote on this forum and quite frankly I never thought I had to as my journey with GCA and PMR has been fairly uneventful. BUT now I need some advice. I started November 2019 on 40 mg of prednisone with Actemra to follow about two months later and felt such relief from
BrianJR
in
PMRGCAuk
2 years ago
Long term low dose Pred if you have Osteoporosis
I have been reading with interest some other posts where its mentioned that Rheumys become less worried about Pred when you have tapered below 8mg and that some patients stay on lower doses for life. Would this apply to people such as myself who have osteoporosis caused by high dose steroids? I also
I have been reading with interest some other posts where its mentioned that Rheumys become less worried about Pred when you have tapered below 8mg and that some patients stay on lower doses for life. Would this apply to people such as myself who have osteoporosis caused by high dose steroids? I also
HappyDiamonds
in
PMRGCAuk
2 years ago
JCVI advice recommending a fourth Covid jab for LVV-GCA patients on Tocilizumab?
I have been on (self-injected) Ro Actemra (Tocilizumab) since July 2019 for LVV-GCA, and it enabled me to cease all other medications (mainly the dreadful Prednisolone) over the course of the first 9 months.( All of my blood results have been totally normal from 2 weeks after starting Tocilizumab and
I have been on (self-injected) Ro Actemra (Tocilizumab) since July 2019 for LVV-GCA, and it enabled me to cease all other medications (mainly the dreadful Prednisolone) over the course of the first 9 months.( All of my blood results have been totally normal from 2 weeks after starting Tocilizumab and
Suzita76
in
PMRGCAuk
2 years ago
Rheumatologist Visit: take Hydroxychloroquine and PMR isn't a vasculitis
Okay, I had a major flare over the past few months so upped my prednisone by adding 6 mg for 10 days, then settled back to 8 mg prednisone (3 at night 5 in morning) which has handled the flare. (Tons of stress nursing an ill husband). So I saw my rheumy 3 weeks ago during the flare and told her I had
Okay, I had a major flare over the past few months so upped my prednisone by adding 6 mg for 10 days, then settled back to 8 mg prednisone (3 at night 5 in morning) which has handled the flare. (Tons of stress nursing an ill husband). So I saw my rheumy 3 weeks ago during the flare and told her I had
artfingers
in
PMRGCAuk
2 years ago
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