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Doctor reinstated infusions every 4 weeks instead of 8
I recently commented that my rheumatologist said I’m in remission. After 6 weeks of my last infusion. I started to get dull headaches and ear pain. I waited the 8 weeks and my ESR had risen but was still in normal range. He still said I’m in remission because of the bloodwork. I got an Actemra infusion
I recently commented that my rheumatologist said I’m in remission. After 6 weeks of my last infusion. I started to get dull headaches and ear pain. I waited the 8 weeks and my ESR had risen but was still in normal range. He still said I’m in remission because of the bloodwork. I got an Actemra infusion
nallufl24
in
PMRGCAuk
7 months ago
"Scientists achieve breakthrough in treating 'neglected' polymyalgia rheumatica" - that's the headline but don't get too excited ...
https://www.news-medical.net/news/20231025/Scientists-achieve-breakthrough-in-treating-neglected-polymyalgia-rheumatica.aspx?utm_source=news_medical_newsletter&utm_medium=email&utm_campaign=rheumatology_newsletter_3_november_2023 The study is using sarilumab, aka Kevzara - not the first study, I'm sure
https://www.news-medical.net/news/20231025/Scientists-achieve-breakthrough-in-treating-neglected-polymyalgia-rheumatica.aspx?utm_source=news_medical_newsletter&utm_medium=email&utm_campaign=rheumatology_newsletter_3_november_2023 The study is using sarilumab, aka Kevzara - not the first study, I'm sure
PMRpro
Ambassador
in
PMRGCAuk
7 months ago
Actemra
hi I started the injection on Tuesday and haven’t felt right since. Lightheaded dizzy at times and on and of sickness. Has anyone els had side effects from this, and how long did they last. Iv been on a lot of injections for RA but my body seems to reject them I’m just hoping this isn’t the case and
hi I started the injection on Tuesday and haven’t felt right since. Lightheaded dizzy at times and on and of sickness. Has anyone els had side effects from this, and how long did they last. Iv been on a lot of injections for RA but my body seems to reject them I’m just hoping this isn’t the case and
Larachez2102
in
NRAS
7 months ago
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melatonin
Having a hard time sleeping. I’m on 7 mg. Prednisone and on Actemra . Would it be ok for me to take melatonin?? Thanks for your replies. Shoshana
Having a hard time sleeping. I’m on 7 mg. Prednisone and on Actemra . Would it be ok for me to take melatonin?? Thanks for your replies. Shoshana
Brooklynbridge
in
PMRGCAuk
7 months ago
Back again
Hello All, I have not been on this site for several years. I was diagnosed with GCA and PMR back in 2016/2017. Life has been stressful…our neighborhood burned down and our house was the only one which was saved by the fire department…only until this year a huge redwood tree (8ft in diameter) fell
Hello All, I have not been on this site for several years. I was diagnosed with GCA and PMR back in 2016/2017. Life has been stressful…our neighborhood burned down and our house was the only one which was saved by the fire department…only until this year a huge redwood tree (8ft in diameter) fell
Tj2017
in
PMRGCAuk
7 months ago
Cogentyx
The recent interview with Dr Mackie posted here mentioned Cogentyx (Secukinumab) as a possible treatment for GCA. Just curious if anyone's tried it. I've tried Actemra, Leflunomide and Rinvoq without much luck.
The recent interview with Dr Mackie posted here mentioned Cogentyx (Secukinumab) as a possible treatment for GCA. Just curious if anyone's tried it. I've tried Actemra, Leflunomide and Rinvoq without much luck.
winfong
in
PMRGCAuk
7 months ago
Quantiferon TB Golf test before starting Actemra
Hi . this is Groda again. My Rheum wants me to start on Actemra for my GCA. He prescribed a Quantiferon TB Golf test (IGRA) before starting Actemra. Would like to know if anyone else had to have this test before starting Actemra. Also, for those that were on Actemra, how long where you on it? Infusion
Hi . this is Groda again. My Rheum wants me to start on Actemra for my GCA. He prescribed a Quantiferon TB Golf test (IGRA) before starting Actemra. Would like to know if anyone else had to have this test before starting Actemra. Also, for those that were on Actemra, how long where you on it? Infusion
Groda
in
PMRGCAuk
8 months ago
Lab Tests Indicate High Lipase
Has anyone taking prednisone and Actemra had a high lipase on their routine lab tests. I’m on 4 mg prednisone and bi-weekly injections of Actemra for GCA. I get lab tests every month, and the past several months Lipase is high (usually around 60-70). I’ve done a CT scan with the dye, and was told
Has anyone taking prednisone and Actemra had a high lipase on their routine lab tests. I’m on 4 mg prednisone and bi-weekly injections of Actemra for GCA. I get lab tests every month, and the past several months Lipase is high (usually around 60-70). I’ve done a CT scan with the dye, and was told
Pamk1949
in
PMRGCAuk
8 months ago
Actemra Anxiety
I just got a message from a pharmacy to get my approval for shipping Actemra. My doctor said I will be having one injection a week as a steroid sparing agent. I read about how it lowers your immunity further. I feel nervous. Any thoughts?
I just got a message from a pharmacy to get my approval for shipping Actemra. My doctor said I will be having one injection a week as a steroid sparing agent. I read about how it lowers your immunity further. I feel nervous. Any thoughts?
Lenore58
in
PMRGCAuk
8 months ago
Broken record head pain
I am once again at my wits end. Sharpe pains in my head on the right side near the temple. I had this a few weeks back and upped my dose to 20 mg of prednisone. I am now down to 9 mg. I have the Actemra injections once a month. I cannot help but feel there is something else going on in my head, not
I am once again at my wits end. Sharpe pains in my head on the right side near the temple. I had this a few weeks back and upped my dose to 20 mg of prednisone. I am now down to 9 mg. I have the Actemra injections once a month. I cannot help but feel there is something else going on in my head, not
Plains
in
PMRGCAuk
8 months ago
Questioning my doctors decision that I’m in remission
I’ve been on Actemra for almost 2 years with excellent results. I felt like myself pretty quickly. 6 months ago rheumatologist halved my dosage of monthly infusions. Still felt great. Then he wanted me on infusions every 8 weeks instead of 4. After the 6th week with no Actemra I started with headache
I’ve been on Actemra for almost 2 years with excellent results. I felt like myself pretty quickly. 6 months ago rheumatologist halved my dosage of monthly infusions. Still felt great. Then he wanted me on infusions every 8 weeks instead of 4. After the 6th week with no Actemra I started with headache
nallufl24
in
PMRGCAuk
8 months ago
Stopped Actemra, new questions
Hi community, I decided to stop Actemra after 1 year so I am not on so many drugs. I was concerned about the risk of infections, diverticulitis, etc. I figured that so many people have done this with only Prednisone, that I can too. Here's what has happened since. I stopped Actemra 1 month ago. I
Hi community, I decided to stop Actemra after 1 year so I am not on so many drugs. I was concerned about the risk of infections, diverticulitis, etc. I figured that so many people have done this with only Prednisone, that I can too. Here's what has happened since. I stopped Actemra 1 month ago. I
potterylady
in
PMRGCAuk
8 months ago
OK! I'm starting to prednisone taper again...
Yesterday I saw my rheumatologist after 4 months. I'd been doing really well on my tapering every three weeks and was at 3mg when I had the shoulder replacement surgery in July. We scheduled my follow-up for September since I was doing so well at my last visit in early June. I remained at the three
Yesterday I saw my rheumatologist after 4 months. I'd been doing really well on my tapering every three weeks and was at 3mg when I had the shoulder replacement surgery in July. We scheduled my follow-up for September since I was doing so well at my last visit in early June. I remained at the three
Grammy80
in
PMRGCAuk
9 months ago
prolia and Actemra.
Hi everyone. I recently had an X-ray on my hip as I am having hip pain which causes my leg to give way when I transfer from my wheelchair. I have MS and GCA. The result of the X-ray was Osteoarthritis and “probable demineralization.” So when I saw my rheumatologist today I asked if I should have a DEXA
Hi everyone. I recently had an X-ray on my hip as I am having hip pain which causes my leg to give way when I transfer from my wheelchair. I have MS and GCA. The result of the X-ray was Osteoarthritis and “probable demineralization.” So when I saw my rheumatologist today I asked if I should have a DEXA
Charkha
in
PMRGCAuk
9 months ago
Doing what is necessary....skipping Actemra
I just thought I'd share this experience in case others have to make the same decisions. I'd had shoulder surgery, replacement, on July 10th and had to wear what they call an immobilizer to keep my arms close to my body. The only way I could sleep at all was in a recliner. Next 6 weeks I spent most
I just thought I'd share this experience in case others have to make the same decisions. I'd had shoulder surgery, replacement, on July 10th and had to wear what they call an immobilizer to keep my arms close to my body. The only way I could sleep at all was in a recliner. Next 6 weeks I spent most
Grammy80
in
PMRGCAuk
9 months ago
9 years PMR and counting!
Hello all, firstly, I cannot express my gratitude for this site well enough. It has educated me, waylaid my apprehensions and relieved my moments of aloneness - thank you all. My background is ICU nursing and then psychologist in private practice specialising in aged competency issues, head injuries
Hello all, firstly, I cannot express my gratitude for this site well enough. It has educated me, waylaid my apprehensions and relieved my moments of aloneness - thank you all. My background is ICU nursing and then psychologist in private practice specialising in aged competency issues, head injuries
AussieKid
in
PMRGCAuk
9 months ago
Tapering while on Actemra
Hello, one year into GCA PMR journey. Been on Actemra and Pred one year. Tapered too fast in March (also very stressful event happened) then flared horribly. Back up to 35mg. Now down to 30mg and tapering to 25 using DSDL method. I was going to taper to 27.5mg first, but I'm going to try 25mg slowly
Hello, one year into GCA PMR journey. Been on Actemra and Pred one year. Tapered too fast in March (also very stressful event happened) then flared horribly. Back up to 35mg. Now down to 30mg and tapering to 25 using DSDL method. I was going to taper to 27.5mg first, but I'm going to try 25mg slowly
potterylady
in
PMRGCAuk
9 months ago
GCA and Ear Swelling, Pressure
Can GCA cause ear swelling ? I have GCA and constant ear pressure, soreness. My general practitioner couldn’t find any thing that would cause it, nor could an ear-nose-throat doctor. Even did a hearing test and all said everything is good. Would this be a flare? I’m on Actemra and 4 mg prednisone
Can GCA cause ear swelling ? I have GCA and constant ear pressure, soreness. My general practitioner couldn’t find any thing that would cause it, nor could an ear-nose-throat doctor. Even did a hearing test and all said everything is good. Would this be a flare? I’m on Actemra and 4 mg prednisone
Pamk1949
in
PMRGCAuk
9 months ago
Actemra; The elephant in the room. Is it working or not working for you?
GCA Feb 2018 Prednisone therapy only. Here I am 6 and half years later and still trying to find the sweet spot with prednisone--not too much/not too little---Just right. I am trying to reduce slowly using the DSNS program because it has always worked for me. I am, however, struggling now at 4.25/4.0
GCA Feb 2018 Prednisone therapy only. Here I am 6 and half years later and still trying to find the sweet spot with prednisone--not too much/not too little---Just right. I am trying to reduce slowly using the DSNS program because it has always worked for me. I am, however, struggling now at 4.25/4.0
Blurry62
in
PMRGCAuk
9 months ago
Alendronic acid
I have stopped taking weekly alendronic acid, as I have started getting sharp pains at the base of my oesophagus. I am on 4 and a half mg of prednisone and biweekly Actemra. No pain. Feel great. I eat calcium laden foods and take daily supplements. Any opinions as I feel guilty?!!
I have stopped taking weekly alendronic acid, as I have started getting sharp pains at the base of my oesophagus. I am on 4 and a half mg of prednisone and biweekly Actemra. No pain. Feel great. I eat calcium laden foods and take daily supplements. Any opinions as I feel guilty?!!
Strelitzia
in
PMRGCAuk
9 months ago
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