Posts - PMRGCAuk | HealthUnlocked

PMRGCAuk

20,342 members • 38,113 posts

All posts for January 2024

how can I sleep on my back?

I have two fractured vertebrae and need to sleep on my back, but can’t do it! Any tips? I’ve tried pillow under knees - too hot! If I ‘inadvertently’ turn on...

I have two fractured vertebrae and need to sleep on my back, but can’t do it! An...

Japsquar

•3 months ago

7 Replies

Med alert wording

I’m just starting a slow taper to 5.5mg prednisolone and aware my adrenals should be waking up but might not. I’m considering getting a medical alert bracelet...

I’m just starting a slow taper to 5.5mg prednisolone and aware my adrenals shoul...

Mfaepink1973

•3 months ago

10 Replies

New Member

I am a very active person and had never heard of PMR. My first sign of an issue was a big one and quite strange. I had just spent 8 straight hours driving...

I am a very active person and had never heard of PMR. My first sign of an issu...

NCStateLine

•3 months ago

42 Replies

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Fatigue.

I have PMR for 4 years now down to 5 mg ..started on 30 mg but can't get any lower , have felt good on 5 but recently have fatigue and dizziness for most of...

I have PMR for 4 years now down to 5 mg ..started on 30 mg but can't get any l...

Seaglassgirl

•3 months ago

17 Replies

How much pred to take?

Diagnosed with PMR in 2015. On pred since then, started at 15mg and the lowest I've ever manage to taper to is 3mg.2023 was a very stressful year and I needed...

Diagnosed with PMR in 2015. On pred since then, started at 15mg and the lowest I...

SQQQ

•3 months ago

3 Replies

Flare?

Hallo everyone. As some of you know I had a total knee replacement before Christmas and progress since has been well. I am due to see the surgeon again on...

Hallo everyone. As some of you know I had a total knee replacement before Chris...

Miserere

•3 months ago

17 Replies

Thinking in Circles on Treatment and Medication

Grief and despair can be overwhelming and lead to depression. What causes them is different for all but there are often common factors. They are however only a...

Grief and despair can be overwhelming and lead to depression. What causes them i...

cycli

•3 months ago

28 Replies

how long is a long time

hi everyone have been reading posts for a while and it seems to me that everyone's journey with PMR is different. so here is my story. I was diagnosed with...

hi everyone have been reading posts for a while and it seems to me that everyone...

bluenumbertwo

•3 months ago

27 Replies

Rituximab experience?

Hi all. I have had large vessel vasculitis for over three years which, despite several different treatments, is proving difficult to control. An FDG PET CT...

Hi all. I have had large vessel vasculitis for over three years which, despite s...

Kafkaontheshore

•3 months ago

4 Replies

First three weeks on Prednisolone !

It has been a slow start on prednisone for PMR, after three weeks there is improvement apart from right shoulder still painful, doctor thinks that could be...

It has been a slow start on prednisone for PMR, after three weeks there is impr...

Mistyfied

•3 months ago

34 Replies

?GCA diagnosis

I’m Lesa, 43 yo female. In day 22 of having a frontal left sided headache, left sided scalp tenderness, tongue deviation, feel like going to choke if do not...

I’m Lesa, 43 yo female. In day 22 of having a frontal left sided headache, left ...

MollyBeagleBum

•3 months ago

38 Replies

shortness of breath subsequent to zoledronic acid infusion

Because of GI problems, bisphosphonate tablets are not an option for me, so I have gone down the infusion path. I had my first infusion on December 28th, and...

Because of GI problems, bisphosphonate tablets are not an option for me, so I ha...

Angel_doll

•3 months ago

1 Reply

Increase dosage and taper

I have been managing my PMR for seven years, and on prednisone for five of those years after thinking I could manage it withou meds. Dumb idea. I can taper...

I have been managing my PMR for seven years, and on prednisone for five of those...

outdoornut

•3 months ago

8 Replies

Prednisolone Week 10 Update

Hi All, Been a while since I posted about my PMR/Prednisolone journey so here is an update for anyone who finds it useful and a few questions..... Quick...

Hi All, Been a while since I posted about my PMR/Prednisolone journey so here is...

Paulx222

•3 months ago

23 Replies

Your rights as a patient of the NHS

https://www.ageuk.org.uk/information-advice/health-wellbeing/health-services/healthcare-rights/ I’m sure that most people are aware of their rights as an NHS...

https://www.ageuk.org.uk/information-advice/health-wellbeing/health-services/hea...

123-go

•3 months ago

8 Replies

Alendronic Acid and ears

I have chronic ear ache in one ear - seeing private consultant soon- audiologist thinks may be bones problem. Have takes AA for 5 years. Saw on Google could...

I have chronic ear ache in one ear - seeing private consultant soon- audiologist...

Daffodilia

•3 months ago

16 Replies

Leflunomide

Hi just an update on my journey, its been about 3 yrs of not being able to reduce pred mainly being at 15mg , rheumatologist wanted me to try Leflunomide I...

Hi just an update on my journey, its been about 3 yrs of not being able to redu...

Marko666

•3 months ago

12 Replies

post Viral symptoms

I returned from Australia with a heavy cold and painful cough. I have been confined to bed mostly for 2 weeks and really quite ill. A man coughed throughout...

I returned from Australia with a heavy cold and painful cough. I have been confi...

SheffieldJane

•3 months ago

71 Replies

Has anyone heard of Parsonage Turner Syndrome? Out of interest.

Hello , I was diagnosed with PMR in September 2012 . I had returned from holiday , had my annual flu jab and noticed awful stiffness in my arms and hips...

Hello , I was diagnosed with PMR in September 2012 . I had returned from ho...

Greensleeves

•3 months ago

35 Replies

it's back

After over 5 years with no symptoms, PMR and GCA have suddenly returned. Dr has put me back on steroids, so here we go again. Nobody seems to know why this...

After over 5 years with no symptoms, PMR and GCA have suddenly returned. Dr has ...

Content1

•3 months ago

37 Replies

Methotrexate

Hi I am on Methotrexate for PMR and now have an irritating cough tests are clear and I wondered if this is a common side effect of MTX

Hi I am on Methotrexate for PMR and now have an irritating cough tests are clear...

Tijuanaman

•3 months ago

33 Replies

Update on NOT a UTI

Hi, just to update. I had the cystoscopy this morning, not a pleasant experience, but no cancer, no inflammation and no gritty substance, so that at least is...

Hi, just to update. I had the cystoscopy this morning, not a pleasant experienc...

Pusph

•3 months ago

4 Replies

RoActemra

Does anyone know when the Patent for RoActemra (Tocilizumab) expires. The NHS will currently only pay for one year of injections. Current private costs is...

Does anyone know when the Patent for RoActemra (Tocilizumab) expires. The NHS wi...

Niblick

•3 months ago

14 Replies

PMR flare and Pred advice please

Hi Everyone thanks again for all the wonderful info out there . It is now just over 2 years since I was diagnosed with PMR . When I initially started on pred...

Hi Everyone thanks again for all the wonderful info out there . It is now just...

Marek1

•3 months ago

19 Replies

Weakened hip flexor muscles

After moving to Scotland last year, I asked for referral to a Rheumatologist as I had been having pain in left hip on standing and walking.Was told they didn't...

After moving to Scotland last year, I asked for referral to a Rheumatologist as ...

Marcy47

•3 months ago

14 Replies

Horrible food and mouth taste

I am trying to find out which tablet can spoil taste a food. Dose anyone have this problem on Prednisonal ?

I am trying to find out which tablet can spoil taste a food. Dose anyone have th...

Doublef

•3 months ago

24 Replies

Pain in neck, shoulders and arms

I have been experiencing pain in my neck shoulders and arms for almost 2 years. At one point well over a year ago, I upped my Prednisone from 10 mg to 20 mg on...

I have been experiencing pain in my neck shoulders and arms for almost 2 years. ...

Miacaro45

•3 months ago

11 Replies

Massage

Hi. Could a firm handed massage cause a flare? Thanks for any input. S.

Suedeshayes

•3 months ago

10 Replies

Getting to the End of the Road...

Hi - I'm currently on .5 mg, and on Monday I will reduce down to .25 mg of prednisone for 2 weeks, AND THEN THAT'S IT (fingers crossed). Yes, I'm apprehensive...

Hi - I'm currently on .5 mg, and on Monday I will reduce down to .25 mg of predn...

canadacando

•3 months ago

35 Replies

PMR and Gluten Free Foods

I have been on a Vegan diet for over 17 years. I have recently read that there is a direct correlation between Gluten and inflammation. Has anyone with PMR...

I have been on a Vegan diet for over 17 years. I have recently read that there ...

RaisinBran

•3 months ago

44 Replies

Posts - PMRGCAuk | HealthUnlocked

PMRGCAuk

All posts for January 2024

how can I sleep on my back?

Med alert wording

New Member

Fatigue.

How much pred to take?

Flare?

Thinking in Circles on Treatment and Medication

how long is a long time

Rituximab experience?

First three weeks on Prednisolone !

?GCA diagnosis

shortness of breath subsequent to zoledronic acid infusion

Increase dosage and taper

Prednisolone Week 10 Update

Your rights as a patient of the NHS

Alendronic Acid and ears

Leflunomide

post Viral symptoms

Has anyone heard of Parsonage Turner Syndrome? Out of interest.

it's back

Methotrexate

Update on NOT a UTI

RoActemra

PMR flare and Pred advice please

Weakened hip flexor muscles

Horrible food and mouth taste

Pain in neck, shoulders and arms

Massage

Getting to the End of the Road...

PMR and Gluten Free Foods

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