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Radiation treatments and PMR/GCA
PMR 2016, GCA OCT 2017. Necessary to stop Actemra 11/18 preop work up for Lumpectomy and Sentinal node biopsy done 1/23/19. Current dose Prednisone 14 mg. Results positive for invasive ductal cancer. Good news chemotherapy not needed. Will start radiation treatments in 2 weeks. Any experience or information
PMR 2016, GCA OCT 2017. Necessary to stop Actemra 11/18 preop work up for Lumpectomy and Sentinal node biopsy done 1/23/19. Current dose Prednisone 14 mg. Results positive for invasive ductal cancer. Good news chemotherapy not needed. Will start radiation treatments in 2 weeks. Any experience or information
LCHRISTOP10
in
PMRGCAuk
5 years ago
Managing pain and failing biological agents
Hello all, I’m wondering if your management plan includes opioid pain management. I was diagnosed 5 yrs ago. I have worked through the baseline meds to four biological agents. I currently have gained a significant amount of weight and my cholesterol and blood pressure has become elivated, during this
Hello all, I’m wondering if your management plan includes opioid pain management. I was diagnosed 5 yrs ago. I have worked through the baseline meds to four biological agents. I currently have gained a significant amount of weight and my cholesterol and blood pressure has become elivated, during this
Rasux
in
NRAS
5 years ago
I’m so excited
Okay, I know it’s too soon to celebrate, but this is the first day
[u]in 8 years[/u]
I did not take Prednisone! Have been on weekly Actemra for a year and DSNS tapered. I had to tell someone and I knew you all would understand! (Feels strange...like not having your Teddy Bear or security blanket
Okay, I know it’s too soon to celebrate, but this is the first day
[u]in 8 years[/u]
I did not take Prednisone! Have been on weekly Actemra for a year and DSNS tapered. I had to tell someone and I knew you all would understand! (Feels strange...like not having your Teddy Bear or security blanket
PMR2011
in
PMRGCAuk
5 years ago
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Clinic Note: GCA patient is completely non compliant with my excellent treatment plan.
I'm disappointed. Even though I'm not completely surprised by the viewpoints expressed by my rheumatologist, seeing his judgement of me written in a clinic note feels bad; pure and simple. He wrote, that He " recommended fosomax for my bones-I declined. Recommended see neurologist for bilateral headaches
I'm disappointed. Even though I'm not completely surprised by the viewpoints expressed by my rheumatologist, seeing his judgement of me written in a clinic note feels bad; pure and simple. He wrote, that He " recommended fosomax for my bones-I declined. Recommended see neurologist for bilateral headaches
Blurry62
in
PMRGCAuk
5 years ago
ACTEMRA
Is it true new drug for GCA available on NHS available in England not Scotland? If not why not ? Scots Wahae!
Is it true new drug for GCA available on NHS available in England not Scotland? If not why not ? Scots Wahae!
Seagu11
in
PMRGCAuk
5 years ago
Biologics and appetite
For the past few years I've been on biologics. First Humira, then Actemra and recently I started Xeljanz. The curious thing is my diet over the last few years has been awful as all the healthy foods I liked turned my stomach. Prior to biolgics I enjoyed cooking and clean eating with fresh fruit, vegetables
For the past few years I've been on biologics. First Humira, then Actemra and recently I started Xeljanz. The curious thing is my diet over the last few years has been awful as all the healthy foods I liked turned my stomach. Prior to biolgics I enjoyed cooking and clean eating with fresh fruit, vegetables
Hidden
in
NRAS
5 years ago
Actemra and Managing Infections
I have been taking Actemra since June 2018. It allowed me to taper more quickly all through the summer; the Actemra side effects were manageable. In October it began. I had 2 ear infections about a month apart. Both times I had to take Amoxicillin. Then I had a toothache. It turned out to be an infection
I have been taking Actemra since June 2018. It allowed me to taper more quickly all through the summer; the Actemra side effects were manageable. In October it began. I had 2 ear infections about a month apart. Both times I had to take Amoxicillin. Then I had a toothache. It turned out to be an infection
Lauren103
in
PMRGCAuk
5 years ago
Actemra new drug treatment for Behcet Vasculitis
Has anyone taken Actemra infusions for Behcet Vasculitis? If yes how did it help
Has anyone taken Actemra infusions for Behcet Vasculitis? If yes how did it help
ksidhu79
in
Behçet's UK
5 years ago
GCA Prednisone and Depression- Help?
Hi everyone At the start of last year (2018) my mom was diagnosed with GCA. Unfortunately, her GCA diagnosis came only after some ophthalmologist prescribed her steroid eye drops which she used and within a few short days she lost vision in her right eye. Needless to say, the steroids didn't stop her
Hi everyone At the start of last year (2018) my mom was diagnosed with GCA. Unfortunately, her GCA diagnosis came only after some ophthalmologist prescribed her steroid eye drops which she used and within a few short days she lost vision in her right eye. Needless to say, the steroids didn't stop her
alfabetgrl
in
NRAS
5 years ago
Prednisone tapering and mood
Has anyone shared my experience? I was diagnosed with Large Vessel GCA in October 2017. I am on monthly Actemra infusions and now down to 2mg prednisone with no ill effects except that I have noticed my mood is quite low and dull. When I started on 100mg and as I reduced I felt positive and and energized
Has anyone shared my experience? I was diagnosed with Large Vessel GCA in October 2017. I am on monthly Actemra infusions and now down to 2mg prednisone with no ill effects except that I have noticed my mood is quite low and dull. When I started on 100mg and as I reduced I felt positive and and energized
Hidden
in
PMRGCAuk
6 years ago
“The system is broken, and all the financial incentives are lined up to keep it broken.”
Actemra - most disturbing. Being considered for GCA medication. https://www.statnews.com/2017/06/05/actemra-rheumatoid-arthritis-fda/ For all the questions about Actemra, its market and Genentech’s profit potential keep growing. In May, the FDA approved Actemra to treat giant cell arteritis, an inflammation
Actemra - most disturbing. Being considered for GCA medication. https://www.statnews.com/2017/06/05/actemra-rheumatoid-arthritis-fda/ For all the questions about Actemra, its market and Genentech’s profit potential keep growing. In May, the FDA approved Actemra to treat giant cell arteritis, an inflammation
Ruadh
in
PMRGCAuk
6 years ago
ROACTEMRA
I had been on Cimzia previously which didn't seem to work so I had had 8 weeks off that before I began
Roactemra
. I had had to have a steroid injection at the beginning of September due to a bad flare when off Cimzia.
I had been on Cimzia previously which didn't seem to work so I had had 8 weeks off that before I began
Roactemra
. I had had to have a steroid injection at the beginning of September due to a bad flare when off Cimzia.
Mouseling
in
NRAS
6 years ago
Has Actemra been helpful for PMR?
I haven't posted for a while. I'm a 74 year old working psychologist in California. I was diagnosed with PMR one year ago. I have had a flare of PMR when I got down to 7 mg reducing by 1 mg per month. I went back up to 10 mg, And then started down by .5 mg per month. I got a new rheumatologist who wanted
I haven't posted for a while. I'm a 74 year old working psychologist in California. I was diagnosed with PMR one year ago. I have had a flare of PMR when I got down to 7 mg reducing by 1 mg per month. I went back up to 10 mg, And then started down by .5 mg per month. I got a new rheumatologist who wanted
lew49
in
PMRGCAuk
6 years ago
Weakness in Thighs - how to remedy
I have started to have weakness in my thighs. I notice it when attempting to stand from a seated position, going up stairs, even just a few, and walking a short distance- like to the kitchen. I understand it is a side effect of prednisone. Any advice on how to resolve? I have things to do😊. I have
I have started to have weakness in my thighs. I notice it when attempting to stand from a seated position, going up stairs, even just a few, and walking a short distance- like to the kitchen. I understand it is a side effect of prednisone. Any advice on how to resolve? I have things to do😊. I have
Mks9558
in
PMRGCAuk
6 years ago
The Drama Queen is back!
I wish I could honestly claim to be a new member of "Club Zero" but it would be false news because even though I no longer take my favorite drug, prednisone, as the dose that I was dxed to stay on(2.5mgs)for a month before was not controlling any of my symptoms. I am much worse than I've ever been, so
I wish I could honestly claim to be a new member of "Club Zero" but it would be false news because even though I no longer take my favorite drug, prednisone, as the dose that I was dxed to stay on(2.5mgs)for a month before was not controlling any of my symptoms. I am much worse than I've ever been, so
Gaijin
in
PMRGCAuk
6 years ago
GP Visit
Today is a God awful day on the pain scale. I have an appt with my GP tomorrow to discuss my current situation. This is at her request as she is now sharing my care. In my previous posts I mentioned I would stay on 5mgs of Pred until I see the Rheumy on January 9th! The reason being she wanted to see
Today is a God awful day on the pain scale. I have an appt with my GP tomorrow to discuss my current situation. This is at her request as she is now sharing my care. In my previous posts I mentioned I would stay on 5mgs of Pred until I see the Rheumy on January 9th! The reason being she wanted to see
Laurapc
in
PMRGCAuk
6 years ago
Everything hurts - almost.
This is my first time posting here. I have posted on the PMR board which was very helpful. I have been convinced I have it in addition to RA because of chronic shoulder pain, particularly the right one. Up until 2 years ago I had been pain free on Enbrel followed by Remicade and then it all went pear-shaped
This is my first time posting here. I have posted on the PMR board which was very helpful. I have been convinced I have it in addition to RA because of chronic shoulder pain, particularly the right one. Up until 2 years ago I had been pain free on Enbrel followed by Remicade and then it all went pear-shaped
Laurapc
in
Arthritis Action
6 years ago
Advice needed- is this normal- should I ride it out longer?
You may know I was diagnosed September 17 with PMR/GMA by my GP who put me on 20 mg prednisone which I stayed on for 5 days. SED rate 95 and CRP 341. After 5 days I was upped to 60 mg of prednisone due to headache but other symptoms had resolved. Saw Rheumatologist on September 26 she confirmed GCA
You may know I was diagnosed September 17 with PMR/GMA by my GP who put me on 20 mg prednisone which I stayed on for 5 days. SED rate 95 and CRP 341. After 5 days I was upped to 60 mg of prednisone due to headache but other symptoms had resolved. Saw Rheumatologist on September 26 she confirmed GCA
Mks9558
in
PMRGCAuk
6 years ago
Hope or hopeless
I’m not doing well after 17 months since diagnosed. Im 74 but had a fibromyalgia diagnosis for 36 years before GCA/PMR. On prednisone, Actemra, beginners Plaquinil, Forteo and pain meds. Very depressed from pain and unable nor do I want to do things. Cooking is a major challenge and so I don’t do
I’m not doing well after 17 months since diagnosed. Im 74 but had a fibromyalgia diagnosis for 36 years before GCA/PMR. On prednisone, Actemra, beginners Plaquinil, Forteo and pain meds. Very depressed from pain and unable nor do I want to do things. Cooking is a major challenge and so I don’t do
Leeleep
in
PMRGCAuk
6 years ago
Sour sweat odor
Has anyone experienced a change in perspiration odor? I have GCA and the smallest of physical tasks makes me sweat profusely it seems now and my sweat turns to a sour like odor as it dries. Not the worst smell but none the less an odor which was never there before. Could this be from GCA itself? Or
Has anyone experienced a change in perspiration odor? I have GCA and the smallest of physical tasks makes me sweat profusely it seems now and my sweat turns to a sour like odor as it dries. Not the worst smell but none the less an odor which was never there before. Could this be from GCA itself? Or
GCA_Patien
in
PMRGCAuk
6 years ago
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