Posts - PMRGCAuk | HealthUnlocked

PMRGCAuk

20,922 members • 39,411 posts

All posts for June 2024

dropping from 15 to 10

9 weeks in to my Pred journey and following DorsetLady’s excellent tapering plan. Got to 12.5: then started intermittent change to10. Result headache,...

9 weeks in to my Pred journey and following DorsetLady’s excellent tapering plan...

Scaredofpred

•3 months ago

7 Replies

Update

Hi everyone, not sure if you remember I’ve been getting horrendous headaches which went into my left side, rheumi checked and not GCA also MRI ok but now GP...

Hi everyone, not sure if you remember I’ve been getting horrendous headaches whi...

Numptybrain

•3 months ago

6 Replies

Mycophenolate Mofetil Anyone?

I saw a different Rheumatologist in the clinic recently. He appeared satisfied that I was on long term 5.5 Prednisolone (I had previously run into trouble at...

I saw a different Rheumatologist in the clinic recently. He appeared satisfied t...

Katiecatweazel

•3 months ago

21 Replies

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should pred last 24 hours?

I only started Pred 3 days ago. Day one I was only in a little pain in the evening and on Day two virtually no pain. Day 3 did not seem to work so well and I...

I only started Pred 3 days ago. Day one I was only in a little pain in the eveni...

Gooner12

•3 months ago

25 Replies

Intermittent fasting

Does anyone have experience with intermittent fasting? It is supposed to help with autoimmune diseases.

Does anyone have experience with intermittent fasting? It is supposed to help wi...

Swizzly

•3 months ago

9 Replies

Difficulty in reducing steroid dose

Thank you to the many people who provided help about my difficulty in taking plain pred, I have now managed to take the coated pred. If I took it in the day,...

Thank you to the many people who provided help about my difficulty in taking pla...

Hidcote

•3 months ago

11 Replies

To increase Pred or not, is it a flare

Hello all you helpful people. I am feeling a bit of a whimp and think I know the answers to some of my questions but here goes. I am still taking 3.5 EC...

Hello all you helpful people. I am feeling a bit of a whimp and think I know th...

Noraflorence

•3 months ago

4 Replies

Increasing dose again

Feeling disappointed as have followed DL slow taper advice, down to 3 mg of Prednisalone stuck to that dose for last 4 weeks but pain in hips and shoulders...

Feeling disappointed as have followed DL slow taper advice, down to 3 mg of Pred...

granofthewest

•3 months ago

6 Replies

Kevzara

Who has had experience with Kevara? I have been approved for the "free" program, but I am hesitant.

Who has had experience with Kevara? I have been approved for the "free" program,...

Maggieart

•3 months ago

5 Replies

increased pain, fatigue

diagnosed Oct 2022 PMR over 18 months have reduced from 12.5 to 2.5 seen rheumatologist for a different problem (erosive arthritis in hands ) discussed PMR...

diagnosed Oct 2022 PMR over 18 months have reduced from 12.5 to 2.5 seen rheumat...

Harry8388

•3 months ago

5 Replies

Pacing Activity with GCA

I was diagnosed with GCA in April 2024 and am currently on 40 mg of prednisone and methotrexate. I have not felt “normal” by any means but recently I was able...

I was diagnosed with GCA in April 2024 and am currently on 40 mg of prednisone a...

Moaningxcat

•3 months ago

38 Replies

reflexology

is it safe to have Reflexology when undergoing treatment for GCA

Bluemoon2023

•3 months ago

3 Replies

pectoralis major discomfort ??

Hi, For a few months before I was diagnosed with PMR I had discomfort across my upper chest. I attributed it to everything from poor posture to muscle...

Hi, For a few months before I was diagnosed with PMR I had discomfort across m...

Fishtacoqueen

•3 months ago

11 Replies

Just Another Hurdle or We Like The Hills.

These are mantras we say to ourselves either in silence or out loud. I don't know about you, but for me discovering I had something that couldn't be cured but...

These are mantras we say to ourselves either in silence or out loud. I don't kno...

cycli

•3 months ago

13 Replies

Confused.

Morning all, I was diagnosed with Polymyalgia onset Rheumatoid Arthritis in Dec 2020 which came on suddenly . I was prescribed 15 mgs Prednisolone and...

Morning all, I was diagnosed with Polymyalgia onset Rheumatoid Arthritis in Dec...

Oscardoggy

•3 months ago

9 Replies

Severe jaw pain

Hi, I’ve woken up at 5am with sudden, severe jaw pain on the left side. It’s definitely in my jaw and halfway across top and bottom of my mouth and into my...

Hi, I’ve woken up at 5am with sudden, severe jaw pain on the left side. It’s de...

Bramble2000

•3 months ago

9 Replies

Scientists achieve breakthrough in treating 'neglected' polymyalgia rheumatica

While looking for something on PHIND, this heading came up. I am not sure of the our policy in uploading longish articles or links to them. I found the...

While looking for something on PHIND, this heading came up. I am not sure of th...

Motida

•3 months ago

11 Replies

Fatigue

My challenge is that around the same time i was diagnosed with Pmr i was experiencing mobility issues which resulted in a hip replacement followed by a year...

My challenge is that around the same time i was diagnosed with Pmr i was experi...

Ritz02

•3 months ago

8 Replies

Flare?

I have read previous posts and really helpful but still not sure what I need to do now.. I probably reduced Steroid more than recommend. Started on 12.5 in...

I have read previous posts and really helpful but still not sure what I need to ...

Beddielove

•3 months ago

31 Replies

pmr almost gone

but still lots of problems Just one a day now. Feel as I could probably go without now. but my problem now is still breathing,strange thing I can’t get......

but still lots of problems Just one a day now. Feel as I could probably go wit...

Ronzy

•3 months ago

8 Replies

Gooner12

just diagnosed with PMR following 5 weeks of painful legs and arms. First day yesterday of Pred and can’t believe how quickly the pain has improved. Bit...

just diagnosed with PMR following 5 weeks of painful legs and arms. First day y...

Gooner12

•3 months ago

7 Replies

Off Prednisone for 3 weeks but.......

I have been on prednisone since May of 2021. 10 months ago my rheumatologist added Actemra infusions to my regimen. 3 weeks ago I finally was completely weaned...

I have been on prednisone since May of 2021. 10 months ago my rheumatologist add...

A77bruin

•3 months ago

9 Replies

New to all this

I was diagnosed 3 weeks ago with pmr, aged 81 I was extremely active, dancing class included. I am very pleased to join this group . Am a helping out...

I was diagnosed 3 weeks ago with pmr, aged 81 I was extremely active, dancing cl...

Book_lover365

•3 months ago

4 Replies

With humility and respect, some PMR lessons learned

Hello everyone, After about five years with PMR and following a very slow taper regime, I have been off prednisone since January, and I have had no...

Hello everyone, After about five years with PMR and following a very slow taper...

Marinescience

•3 months ago

17 Replies

Neutropenia whilst on Tocilizumab

Hi. Just wondering if anyone has had a similar experience. Diagnosed with PMR and GCA Nov. 2021. For last 2 months I have been on weekly Tocilizumab...

Hi. Just wondering if anyone has had a similar experience. Diagnosed with PMR an...

Magsters123

•3 months ago

6 Replies

adrenal cocktails

has anyone tried these to help when tapering? That all seem to be based on orange juice, coconut water and a pinch of salt?

has anyone tried these to help when tapering? That all seem to be based on orang...

Northernarcher

•3 months ago

18 Replies

blood tests

haven’t posted in a while. Coping on 2 mg a day for a few years. I haven’t had a blood test since before covid. I have requested from time to time but been...

haven’t posted in a while. Coping on 2 mg a day for a few years. I haven’t had a...

Pongo13

•3 months ago

16 Replies

Is it ok to let PMR get worse before starting treatment?

I’m 85, normally active and fit for my age and a good weight. I had GCA in 2015 and started on 60mg prednisolone. The usual side effects but quite extreme -...

I’m 85, normally active and fit for my age and a good weight. I had GCA in 2015 ...

Willowherb35

•3 months ago

22 Replies

Flare length?

I seem to be experiencing what I assume is a flare, currently I'm sticking to the 5mg Pred a day, but this flare? Had been going on for weeks now, perhaps...

I seem to be experiencing what I assume is a flare, currently I'm sticking to th...

Southmead

•3 months ago

20 Replies

fatigue as I taper

many thanks for the reply’s at least I know I am not going mad my intention is to stay at 10mg for at least 8 weeks the try for 9mg this is assuming things...

many thanks for the reply’s at least I know I am not going mad my intention is t...

Northernarcher

•3 months ago

1 Reply

Posts - PMRGCAuk | HealthUnlocked

PMRGCAuk

All posts for June 2024

dropping from 15 to 10

Update

Mycophenolate Mofetil Anyone?

should pred last 24 hours?

Intermittent fasting

Difficulty in reducing steroid dose

To increase Pred or not, is it a flare

Increasing dose again

Kevzara

increased pain, fatigue

Pacing Activity with GCA

reflexology

pectoralis major discomfort ??

Just Another Hurdle or We Like The Hills.

Confused.

Severe jaw pain

Scientists achieve breakthrough in treating 'neglected' polymyalgia rheumatica

Fatigue

Flare?

pmr almost gone

Gooner12

Off Prednisone for 3 weeks but.......

New to all this

With humility and respect, some PMR lessons learned

Neutropenia whilst on Tocilizumab

adrenal cocktails

blood tests

Is it ok to let PMR get worse before starting treatment?

Flare length?

fatigue as I taper

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