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Why is this necessary?
Diagnosed GCA, on Pred , however Consultant has recommended an Endoscopy and Colonoscopy. I do not have any symptoms and feel bad enough, so I declined?
Diagnosed GCA, on Pred , however Consultant has recommended an Endoscopy and Colonoscopy. I do not have any symptoms and feel bad enough, so I declined?
Seagu11
in
PMRGCAuk
6 years ago
Hot Flushes increasing
I reduced my prednisolone from 10mg to 9mg at the beginning of February and just about coping with the soreness but have noticed an increase in facial hot flushes and night sweats. Has anyone else felt these side effects have got worse as you reduce?
I reduced my prednisolone from 10mg to 9mg at the beginning of February and just about coping with the soreness but have noticed an increase in facial hot flushes and night sweats. Has anyone else felt these side effects have got worse as you reduce?
Godrevy1960
in
PMRGCAuk
6 years ago
Cutaneous Vasculitis
Hi all Back in early 2015 I had the most awful rash and raised itchy lumps over the lower part of my legs. I went to my GP who suggested treating the whole family for Scabies. After many tests and appointments later and biopsies they confirmed Cutaneous Vasculitis. Back in 2018 from July to December
Hi all Back in early 2015 I had the most awful rash and raised itchy lumps over the lower part of my legs. I went to my GP who suggested treating the whole family for Scabies. After many tests and appointments later and biopsies they confirmed Cutaneous Vasculitis. Back in 2018 from July to December
lou1972
in
Vasculitis UK
6 years ago
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Job interview - dealing with embarrassing sweats
Hi everyone My tapering journey has been going well and the side effects of the steroids and the withdrawal on each reduction are becoming much less and bearable EXCEPT I suffer from red hot flushes to the face and terrible head sweats. I have noticed that these occur spontaneously but they are definitely
Hi everyone My tapering journey has been going well and the side effects of the steroids and the withdrawal on each reduction are becoming much less and bearable EXCEPT I suffer from red hot flushes to the face and terrible head sweats. I have noticed that these occur spontaneously but they are definitely
EscapedtoWales
in
PMRGCAuk
6 years ago
How to get some nutrition if you have IBS, Celiac, Crohn's, Ulcerative Colitis, Radiation Enteritis, or any other digestion disorder.
If you have IBS or any of its "cousin" gut diseases such as Ulcerative Colitis, you might not absorb nutrients well. Diarrhea in particular will flush out all nutrients, either natural or in supplement for. You gut microflora might also be weak from constant diarrhea, which will make things worse. I
If you have IBS or any of its "cousin" gut diseases such as Ulcerative Colitis, you might not absorb nutrients well. Diarrhea in particular will flush out all nutrients, either natural or in supplement for. You gut microflora might also be weak from constant diarrhea, which will make things worse. I
Hidden
in
IBS Network
6 years ago
GCA and black outs?
Hi I'm new to this forum. Dx with pmr April this year. CRP 106. 20mg prednisolone. Worked well so slowly down to 7mg by beginning of November when all symptoms came back within days. then fell over but thought nothing of it. Following week started to feel really unwell. Husband found me unconscious
Hi I'm new to this forum. Dx with pmr April this year. CRP 106. 20mg prednisolone. Worked well so slowly down to 7mg by beginning of November when all symptoms came back within days. then fell over but thought nothing of it. Following week started to feel really unwell. Husband found me unconscious
Devonspinner
in
PMRGCAuk
6 years ago
Could this be PMR or Steroid side effect ?
I have been on Pred for 4 years and am reducing from 7 to 6.75 mg again. I had a very strenuous and stressful day on Saturday, going to a funeral and driving home took nearly 2 hours. The longest journey I have done for 3 years is about 15/20 minutes. When I got home I was so tired I needed a rest
I have been on Pred for 4 years and am reducing from 7 to 6.75 mg again. I had a very strenuous and stressful day on Saturday, going to a funeral and driving home took nearly 2 hours. The longest journey I have done for 3 years is about 15/20 minutes. When I got home I was so tired I needed a rest
NursePeggy
in
PMRGCAuk
6 years ago
GCA and tocilizumab withdrawal
Has anyone given up taking tocilizumab (Actemra) and remained in remission or did you get GCA back. Is there a program to reduce injections in stages?
Has anyone given up taking tocilizumab (Actemra) and remained in remission or did you get GCA back. Is there a program to reduce injections in stages?
christine2715
in
PMRGCAuk
6 years ago
"9 out of 10 doctors on our payroll, recommend this product!" ~ Big Pharma : (
Oh Goody!!! Bio-Thera Solutions, a global biotechnology company based in Guangzhou, China, recently announced that it has initiated a phase 1 clinical trial for BAT1806, a proposed tocilizumab (Actemra) biosimilar. Just what the world needs another Valsartan disaster! https://www.centerforbiosimilars.com
Oh Goody!!! Bio-Thera Solutions, a global biotechnology company based in Guangzhou, China, recently announced that it has initiated a phase 1 clinical trial for BAT1806, a proposed tocilizumab (Actemra) biosimilar. Just what the world needs another Valsartan disaster! https://www.centerforbiosimilars.com
Hidden
in
PMRGCAuk
6 years ago
GCA and clinical trials
I was just diagnosed Great cell Arteritise, I am currently on prednisone. I have an opportunity to joint a clinical trial group, that combines prednisone and Stelara. Has anyone had any experience with clinical trial using drug combinations?
I was just diagnosed Great cell Arteritise, I am currently on prednisone. I have an opportunity to joint a clinical trial group, that combines prednisone and Stelara. Has anyone had any experience with clinical trial using drug combinations?
golf26
in
PMRGCAuk
6 years ago
GCA and people not understanding
I have just come back from a wonderful but tiring holiday in Cornwall. I am so much better now I am on Tocilizumab but still not my old self. This was the first time I have been taking it fortnightly, by injection. rather than weekly and I was told I was not to do too much. I had a long day visiting
I have just come back from a wonderful but tiring holiday in Cornwall. I am so much better now I am on Tocilizumab but still not my old self. This was the first time I have been taking it fortnightly, by injection. rather than weekly and I was told I was not to do too much. I had a long day visiting
christine2715
in
PMRGCAuk
6 years ago
And the good news is . . .
It took just 10 minutes final assessment yesterday for Keith (hospital rheumatologist) to tell me that Giant Cell Arteritis (GCA) is over and the lack of headaches during the final months suggests there will not be any flares. It took 18 months tapering to wipe off the slate. He predicted this, saying
It took just 10 minutes final assessment yesterday for Keith (hospital rheumatologist) to tell me that Giant Cell Arteritis (GCA) is over and the lack of headaches during the final months suggests there will not be any flares. It took 18 months tapering to wipe off the slate. He predicted this, saying
sondya
in
PMRGCAuk
6 years ago
Muscle heaviness .
Hello I can feel the PMR is active in my body ,it is a wierd feeling which I expect you all can relate too.I also have intermittent one -sided shoulder pain.The question which I would like to ask however ,concerns the muscles in my upper arms and thighs (including lower buttocks!)They feel heavy and
Hello I can feel the PMR is active in my body ,it is a wierd feeling which I expect you all can relate too.I also have intermittent one -sided shoulder pain.The question which I would like to ask however ,concerns the muscles in my upper arms and thighs (including lower buttocks!)They feel heavy and
Dewdrop456
in
PMRGCAuk
6 years ago
Radiation effects are they normal
Now I’ve researched and found it’s common to have radiation
enteritis
which most get when having pelvic bed radiated. Seeing oncologist tomorrow because he also has 5 weeks left of radiTion. My question is anyone experience such uncomfortable throbbing to the abdomen also?
Now I’ve researched and found it’s common to have radiation
enteritis
which most get when having pelvic bed radiated. Seeing oncologist tomorrow because he also has 5 weeks left of radiTion. My question is anyone experience such uncomfortable throbbing to the abdomen also?
Armywifedublin
in
Advanced Prostate Cancer
6 years ago
Pred tapering starts tomorrow
I was diagnosed with GCA/PMR May 7th and started on 60mg of prednisone. I will be lowering that dose to 50mg tomorrow. The doctor wants me to consider Tocilizumab weekly infusions. I have read the study and understand the side effects, but I would like to hear some of your thoughts and/or experiences
I was diagnosed with GCA/PMR May 7th and started on 60mg of prednisone. I will be lowering that dose to 50mg tomorrow. The doctor wants me to consider Tocilizumab weekly infusions. I have read the study and understand the side effects, but I would like to hear some of your thoughts and/or experiences
kay7954
in
PMRGCAuk
6 years ago
Eejit!!!!
Well, I guess there's a first time for everything... but feel I like a right idiot!!! It was 1:30 this afternoon, before I realised, I had forgotten to take my Prednisolone! I wondered why I felt weird and sluggish, just off... it was like I was going in slow motion and couldn't get going. Not
Well, I guess there's a first time for everything... but feel I like a right idiot!!! It was 1:30 this afternoon, before I realised, I had forgotten to take my Prednisolone! I wondered why I felt weird and sluggish, just off... it was like I was going in slow motion and couldn't get going. Not
Hidden
in
PMRGCAuk
6 years ago
Lumber puncture
So today a neurologist came in at 11:00. Did a lumber puncture right in the room. Now it’s a waiting game. Which I hate. Gave me gababapentin. For headache. I only had 2 doses and I can’t tell if it’s working. Or how long it takes to kick in. I’m hoping to go home tomorrow. But my right leg is bothering
So today a neurologist came in at 11:00. Did a lumber puncture right in the room. Now it’s a waiting game. Which I hate. Gave me gababapentin. For headache. I only had 2 doses and I can’t tell if it’s working. Or how long it takes to kick in. I’m hoping to go home tomorrow. But my right leg is bothering
Hali12
in
PMRGCAuk
6 years ago
Who the Hell is Ali ibn Isa?
He may be the guy who documented the very first written account of a TAB (Temporal Artery Biopsy) procedure; sometime between 940 to 1010 A.D!!! Go Ali! Another very technical (and to me, the layperson) mind boggling editorial about recent advances in giant cell arteritis and impacts to how the disease
He may be the guy who documented the very first written account of a TAB (Temporal Artery Biopsy) procedure; sometime between 940 to 1010 A.D!!! Go Ali! Another very technical (and to me, the layperson) mind boggling editorial about recent advances in giant cell arteritis and impacts to how the disease
Hidden
in
PMRGCAuk
6 years ago
Any bowel problems with GPA?
Hi, for several months now I've had a change in bowel habit. Colonoscopy clear thank goodness. But the problem continues and have had a couple of episodes of near incontince of faeces. And deep rectal pain. Just wondered if any one else has had similar symptoms.
Hi, for several months now I've had a change in bowel habit. Colonoscopy clear thank goodness. But the problem continues and have had a couple of episodes of near incontince of faeces. And deep rectal pain. Just wondered if any one else has had similar symptoms.
ludo
in
Vasculitis UK
6 years ago
The Lighter Side: THUNDERBIRDS are ‘GO’! At Last, the ‘Write Me Funny…’ book website goes ‘Live’ ;-)
Greetings Polymylingers and Pred Playmates everywhere. I hope you're well (or as well as can be), and bearing-up after the Icy Winter weather. :-) I know. Just when you thought (or perhaps hoped?) I’d gone away permanently, I’m BACK - and delighted to announce that the long awaited website giving
Greetings Polymylingers and Pred Playmates everywhere. I hope you're well (or as well as can be), and bearing-up after the Icy Winter weather. :-) I know. Just when you thought (or perhaps hoped?) I’d gone away permanently, I’m BACK - and delighted to announce that the long awaited website giving
markbenjamin57
in
PMRGCAuk
7 years ago
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