Posts - PMRGCAuk | HealthUnlocked

PMRGCAuk

20,336 members • 38,102 posts

All posts for December 2020

GCA Second opinions Ontario Canada

Hello Ontario. Have you tried to get a second opinion ? I feel awful. Tired. Weepy. Taking Actemra and reducing prednisone 2 per week. Tried to talk to my...

Hello Ontario. Have you tried to get a second opinion ? I feel awful. Tired. W...

alvertta

•3 years ago

16 Replies

Covid vaccine in vasculitis patients (GCA/LVV/PMR is a spectrum of an arteritis, a vasculitis found in arteries)

This link https://www.vasculitis.org.uk/wp-content/uploads/2020/12/Vaccine-advice-from-Vasculitis-UK-7-Dec-2020.pdf has just been put up on the VasculitisUK...

This link https://www.vasculitis.org.uk/wp-content/uploads/2020/12/Vaccine-advic...

PMRpro

Ambassador•3 years ago

50 Replies

Jittery muscles

Morning All Hope everyone is well? Can anyone suggest anything to help. I have been off Steroids for a week now having tapered slowly , my hips and thighs are...

Morning All Hope everyone is well? Can anyone suggest anything to help. I have ...

carolBF

•3 years ago

33 Replies

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changes to hair on prednisilone

I went to the hairdressers to have my roots done a few days ago, something I have been doing regularly for many years. No sooner had she started applying the...

I went to the hairdressers to have my roots done a few days ago, something I hav...

polyputthekettleon

•3 years ago

23 Replies

Low Anion Gap

Anyone have experience with a Low Anion Gap in their bloodwork? My ESR was 110+, I have hand, neck, back pain (upper, mid & lower) and hip pain, but CRP was...

Anyone have experience with a Low Anion Gap in their bloodwork? My ESR was 110+...

IvoryDancer

•3 years ago

12 Replies

Brain function

Friends, I was diagnosed almost 5 years ago with GCA. Like many of you I tended toward type A overachiever. I was progressing nicely and looking forward to the...

Friends, I was diagnosed almost 5 years ago with GCA. Like many of you I tended ...

fmkkm

•3 years ago

43 Replies

Pain in left Arm

Harrywogan here with a question after reading some posts from a few people who all have a painful deft arm including myself Why.

Harrywogan here with a question after reading some posts from a few people who a...

Harrywogan

•3 years ago

9 Replies

Painful thighs

I was diagnosed with PMR and GCA a couple of years ago and am now have tapered down to 3 mgs of prednisone. I have been having terrible muscle pains in my...

I was diagnosed with PMR and GCA a couple of years ago and am now have tapered d...

Luvtostitch

•3 years ago

27 Replies

Out of breath.

Hi.am just wondering why I get out of breath so quick,and my legs dont want to go for a walk,had a flu virus a week or so,dr.said it could last any thing upto...

Hi.am just wondering why I get out of breath so quick,and my legs dont want to g...

Flosy

•3 years ago

13 Replies

A little information

I just returned from hospital after 2 days, I had a TAVR aortic valve repair on my heart. For weeks before procedure I agonized over whether to raise my...

I just returned from hospital after 2 days, I had a TAVR aortic valve repair on...

Noosat

•3 years ago

12 Replies

Trying to break free from PMR and the treatment

Can anyone say weather bullrich salt is ok as a substitute for omeprazole,also is either worth using while on 2mg of prednisolone started with 20mg...

Can anyone say weather bullrich salt is ok as a substitute for omeprazole,also i...

Mdetector

•3 years ago

15 Replies

Still stuck at 13 and overwhelmed

Thank you everyone who replied to me a few weeks ago about being stuck. I’m sorry I didn’t reply to all the responses. Things have only gotten more...

Thank you everyone who replied to me a few weeks ago about being stuck. I’m...

Mstiles

•3 years ago

11 Replies

Nausea and prednisone

I have been off methotrexate for 7 weeks now due to waves of nausea. I am transitioning 1mg/month of prednisone and 2 days ago came down to 9mg then back to 10...

I have been off methotrexate for 7 weeks now due to waves of nausea. I am transi...

Caloo650

•3 years ago

17 Replies

Motivation for exercise

I unilaterally abandoned exercise in my later days at school on the grounds that it was A) tedious, B) usually associated with discomfort or pain. This...

I unilaterally abandoned exercise in my later days at school on the grounds that...

Matt_Finish

•3 years ago

53 Replies

Varicose Veins and Pred

Hi, I just wondered if anyone else has had trouble with varicose veins and whether or not we think Pred may have something to do with it. Or is it that I am...

Hi, I just wondered if anyone else has had trouble with varicose veins and wheth...

Thelmarina

•3 years ago

10 Replies

Advice for times to take prednisone

HELP and advice greatly appreciated I have managed to reduce down to 10mgs of prednisone daily (was to taper down to 9mg on Sunday but In too much pain)which I...

HELP and advice greatly appreciated I have managed to reduce down to 10mgs of pr...

Maggie69

•3 years ago

26 Replies

Has anyone else who has GCA had tinnitus symptoms?

Newbie with as yet unconfirmed PMR/GCA. Phone call with GP on Monday and want to bring this up with her since she insisted on second lot of blood tests even...

Newbie with as yet unconfirmed PMR/GCA. Phone call with GP on Monday and want ...

merril

•3 years ago

25 Replies

Prednisone taper

How do you differentiate a prednisone taper symptoms from your poly myalgia symptoms I tapered on Tuesday and my hips and shoulders are killing me and I feel...

How do you differentiate a prednisone taper symptoms from your poly myalgia symp...

Bro-

•3 years ago

10 Replies

Telepraph article

Did anyone read on page 2 today about prednisolone and the effects it can have on the heart?

Did anyone read on page 2 today about prednisolone and the effects it can have o...

diana1998

•3 years ago

11 Replies

When to stop taking Omeprazole?

I have just stopped taking Prednisolone- yippee. As long as this remains the case, I am only taking 15mg MTX once a week, Alendronic Acid once a week and...

I have just stopped taking Prednisolone- yippee. As long as this remains the cas...

MrsChips

•3 years ago

11 Replies

Low-dose steroids ‘bad for the heart’, study finds

I don’t know if this us fake news LOW doses of steroids widely prescribed to treat a range of inflammatory diseases may be linked to an increased risk of...

I don’t know if this us fake news LOW doses of steroids widely prescribed to tr...

piglette

•3 years ago

18 Replies

Feeling strange after reduction in prednisoline

Have just reduced from 15mg to 10mg after 3 weeks. Was feeling on top of world but on reducing feel fuzzy headed and spaced iut. Go dizzy when stand up and...

Have just reduced from 15mg to 10mg after 3 weeks. Was feeling on top of world ...

Italigirl

•3 years ago

18 Replies

Government advice for the shielding group on the vaccine - including the immunocompromised

This is the link to the JCVI document issued this week:...

PMRpro

Ambassador•3 years ago

22 Replies

Where do we go from here

I have been on prednisone for 2 yrs, down to 2.5 mg although I think I feel better on 5 what is the risk to taking this dosage for long periods?

I have been on prednisone for 2 yrs, down to 2.5 mg although I think I feel bet...

desertstorm1991

•3 years ago

5 Replies

Actemra

Does anyone have any experience with actemra for treating pmr and gca? I was diagnosed with pmr in February of this year. Rheumatologist started me on 40 mg...

Does anyone have any experience with actemra for treating pmr and gca? I was dia...

Cgt1151

•3 years ago

32 Replies

Press Release: People with rare autoimmune rheumatic diseases at increased risk of death during COVID-19 pandemic.

Paul Howard of LupusUK has just posted this link and I thought it was also relevant to us as it includes GCA patients in the analysis. The National Disease...

Paul Howard of LupusUK has just posted this link and I thought it was also relev...

PMRpro

Ambassador•3 years ago

42 Replies

Phone consultation with Rheumatologist

Hi, thank you to everyone on this forum, I find it incredibly helpful reading everyone's issues and answers. I have just had my phone call with the consultant...

Hi, thank you to everyone on this forum, I find it incredibly helpful reading ev...

Sophiestree

•3 years ago

40 Replies

All going well so far.

Continuing on the Dead Slow taper. Not feeling the steps down which is very pleasing. So tempted to go faster but must not. Week 6 of The Fast 800 and Mark...

Continuing on the Dead Slow taper. Not feeling the steps down which is very ple...

IdasMum

•3 years ago

3 Replies

Yellow Card Scheme UK

I am now thinking that perhaps patients are not aware of the above as 3 people have posted re side effects today. I ask that anyone who experiences side...

I am now thinking that perhaps patients are not aware of the above as 3 people h...

jinasc

•3 years ago

5 Replies

Tapered from 15mg to 10 with new labs

So starting in Sept. I began a very slow taper from 15mg reducing 1mg every 2 weeks. I hoped by going really slowly I wouldn't be taking a chance on ever...

So starting in Sept. I began a very slow taper from 15mg reducing 1mg every 2 we...

Dydee

•3 years ago

8 Replies

Posts - PMRGCAuk | HealthUnlocked

PMRGCAuk

All posts for December 2020

GCA Second opinions Ontario Canada

Covid vaccine in vasculitis patients (GCA/LVV/PMR is a spectrum of an arteritis, a vasculitis found in arteries)

Jittery muscles

changes to hair on prednisilone

Low Anion Gap

Brain function

Pain in left Arm

Painful thighs

Out of breath.

A little information

Trying to break free from PMR and the treatment

Still stuck at 13 and overwhelmed

Nausea and prednisone

Motivation for exercise

Varicose Veins and Pred

Advice for times to take prednisone

Has anyone else who has GCA had tinnitus symptoms?

Prednisone taper

Telepraph article

When to stop taking Omeprazole?

Low-dose steroids ‘bad for the heart’, study finds

Feeling strange after reduction in prednisoline

Government advice for the shielding group on the vaccine - including the immunocompromised

Where do we go from here

Actemra

Press Release: People with rare autoimmune rheumatic diseases at increased risk of death during COVID-19 pandemic.

Phone consultation with Rheumatologist

All going well so far.

Yellow Card Scheme UK

Tapered from 15mg to 10 with new labs

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A quick SURVEY on COVID-19 & PMR/GCA/LVV Since the start of the COVID-19 pandemic have you experienced any of the following? Part 2

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