Search
Search
About
Log in
Join
Experiences with
RoActemra
Posts
Communities
735 public posts
Filter results
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
10 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
10 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
10 months ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
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
10 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
10 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
10 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
10 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
10 months ago
Painful feet, back, thighs
It is now 1 1/2 years since I was diagnosed with GCA. I started on 60mg prednisolone and have now reduced to 7mg/6mg with the help of Tocilizumab/Actemra injections for one year, now stopped, and methotrexate 10mg per week, which I am still on. I have had one relaps last summer but have been ok since
It is now 1 1/2 years since I was diagnosed with GCA. I started on 60mg prednisolone and have now reduced to 7mg/6mg with the help of Tocilizumab/Actemra injections for one year, now stopped, and methotrexate 10mg per week, which I am still on. I have had one relaps last summer but have been ok since
Antschi
in
PMRGCAuk
11 months ago
GCA Relapse —Is +5 Pred Enough?
I am curently on my second bout of GCA/PMR, and curently on prednisone with every other week Actemra injections. Last week I had PMR symptoms, so I went up from 1.5 to 2 mg prednisone. Everything seemed fine until last night,( which was 1 week later) when I experienced pressure and tenderness in the
I am curently on my second bout of GCA/PMR, and curently on prednisone with every other week Actemra injections. Last week I had PMR symptoms, so I went up from 1.5 to 2 mg prednisone. Everything seemed fine until last night,( which was 1 week later) when I experienced pressure and tenderness in the
Pamk1949
in
PMRGCAuk
11 months ago
GCA Osteoarthritis
I saw the rheumatologist today and he tells me all my organs are performing normally. He did see scoliosis in my back and osteoarthritis in my neck and lower back. He did not mention PMR so presume it’s off the table. My neuro opthamologist is treating my GCA with prednisone at 5mg/day. The rheumatologist
I saw the rheumatologist today and he tells me all my organs are performing normally. He did see scoliosis in my back and osteoarthritis in my neck and lower back. He did not mention PMR so presume it’s off the table. My neuro opthamologist is treating my GCA with prednisone at 5mg/day. The rheumatologist
Kittymom7
in
PMRGCAuk
11 months ago
GFR dropping
Good day: I am new to this hub. I am also on the high blood pressure hub and a hub for Polymyalgia Rheumatica/Giant Cell Arteritis, which I have. My GFR was 42 back in the spring, 39 last month, and 36 this month. I see an oncologist for a protein I carry in my blood. The oncologist referred
Good day: I am new to this hub. I am also on the high blood pressure hub and a hub for Polymyalgia Rheumatica/Giant Cell Arteritis, which I have. My GFR was 42 back in the spring, 39 last month, and 36 this month. I see an oncologist for a protein I carry in my blood. The oncologist referred
phebamom
in
Kidney Disease
11 months ago
just a hello, an update
hi my friends...i responded to a post a short while ago, so i thought i'd say hello, miss you all and thought i'd send a one-finger update. i broke my right arm when i went to canada for granddaughter's grad...second day there.....graceful, huh! had shoulder replacement surgery 7/10. it will be a while
hi my friends...i responded to a post a short while ago, so i thought i'd say hello, miss you all and thought i'd send a one-finger update. i broke my right arm when i went to canada for granddaughter's grad...second day there.....graceful, huh! had shoulder replacement surgery 7/10. it will be a while
Grammy80
in
PMRGCAuk
11 months ago
GCA with Lupus
I was first diagnosed with PMR first about 10 years ago. That was quickly followed by diagnosis of lupus. After complaining of headache in right temple area for 3 years my rheumatologist had a biopsy done and I had GCA. Quickly put on prednisone and was on 6o mg for several weeks. Developed prednisone
I was first diagnosed with PMR first about 10 years ago. That was quickly followed by diagnosis of lupus. After complaining of headache in right temple area for 3 years my rheumatologist had a biopsy done and I had GCA. Quickly put on prednisone and was on 6o mg for several weeks. Developed prednisone
Gluten
in
PMRGCAuk
11 months ago
How long to take Actemra?
I've had PMR & GCA for a year. I've been on Actemra for almost a year. I was tapering steroids pretty well, but had a flare that lasted 2-3 months so I'm back up to 35- 32.5mg of Pred per day. I'm wondering if the Actemra shots are even working for me. I know there are risks with taking it and feel that
I've had PMR & GCA for a year. I've been on Actemra for almost a year. I was tapering steroids pretty well, but had a flare that lasted 2-3 months so I'm back up to 35- 32.5mg of Pred per day. I'm wondering if the Actemra shots are even working for me. I know there are risks with taking it and feel that
potterylady
in
PMRGCAuk
1 year ago
still no answers
I wrote in a week or so ago about rib pain and protruding left rib cage. Since then I've been to see a private rhematologist, then the practice nurse at my local NH surgery, and lastly took myself to A&E locally on Sunday. The rolling spasm I feel on and off just under the left ribs is the upper
I wrote in a week or so ago about rib pain and protruding left rib cage. Since then I've been to see a private rhematologist, then the practice nurse at my local NH surgery, and lastly took myself to A&E locally on Sunday. The rolling spasm I feel on and off just under the left ribs is the upper
Bennijax
in
PMRGCAuk
1 year ago
Actemra
I was diagnosed with GCA and PMR in 2018 and lost the vision in my right eye. I was on prednisone and methotrexate for over a year, but then I changed rheumatologists my new one recommended at Actemra actpen. I give myself a dose once every 3 weeks and it has been a great alternative to prednisone. My
I was diagnosed with GCA and PMR in 2018 and lost the vision in my right eye. I was on prednisone and methotrexate for over a year, but then I changed rheumatologists my new one recommended at Actemra actpen. I give myself a dose once every 3 weeks and it has been a great alternative to prednisone. My
brenda1207
in
PMRGCAuk
1 year ago
Biphosphonates Questions
I’m on my second go-around for GCA. I had GCA/PMR in 2017. After almost 5 years and tapering VERY slowly got off of prednisone for about year when the GCA came back suddenly, but without PMR. Currently at 2mg prednisone from 60 , and Actemra every other week. Just tapered to 2 mg quickly (one
I’m on my second go-around for GCA. I had GCA/PMR in 2017. After almost 5 years and tapering VERY slowly got off of prednisone for about year when the GCA came back suddenly, but without PMR. Currently at 2mg prednisone from 60 , and Actemra every other week. Just tapered to 2 mg quickly (one
Pamk1949
in
PMRGCAuk
1 year ago
Coming off Liothyronine
I take 18 tablets a day some of which can skew the result of my blood test such as Prednisolone which I've been on for 4 years,
Roactemra
, Lansoprazole, Loratadine, and yearly infusion of Zoletronic acid. Can anyone give me an idea when I will feel a bit better?
I take 18 tablets a day some of which can skew the result of my blood test such as Prednisolone which I've been on for 4 years,
Roactemra
, Lansoprazole, Loratadine, and yearly infusion of Zoletronic acid. Can anyone give me an idea when I will feel a bit better?
technogran
in
Thyroid UK
2 years ago
35mg Pred after a year of GCA,PMR
Hello, I've had GCA and PMR for a year. I'm on Actemra and prednisone. I was reducing and got down to 12.5mg three months ago. But the symptoms came roaring back and I kept having to increase the dose. I've been on 35mg for one month. I tried to reduce by 2.5mg but the unbearable headache came back.
Hello, I've had GCA and PMR for a year. I'm on Actemra and prednisone. I was reducing and got down to 12.5mg three months ago. But the symptoms came roaring back and I kept having to increase the dose. I've been on 35mg for one month. I tried to reduce by 2.5mg but the unbearable headache came back.
potterylady
in
PMRGCAuk
1 year ago
1
...
4
5
6
...
37
Next page
10
20
30
Filter results
Clear filters
Posted in
All communities
PMRGCAuk
624 results
NRAS
83 results
Arthritis Action
5 results
View top 10 communities
Sort by
Most Relevant
Newest