OOh that hurts! Rogue surfboards and thoughts on ... - PMRGCAuk

PMRGCAuk

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OOh that hurts! Rogue surfboards and thoughts on rapid weight loss.

Slowdown profile image
11 Replies

Litany of boring stuff first: Awoke at 4a.m. with painful headache/ eyeache which appeared out of the blue. I took a paracetamol to see if that would shift it but nothing doing so with the spectre of GCA in mind took 2x5mg uncoated (I'm on 9mg e/c split a.m. p.m. which has worked well). In 2 hours my head felt somewhat better. I also have a large leg wound from a rogue surfboard crashing into my shin, (yes, I was in the sea at the time) which had to be dressed so thoughts of sepsis crept in - a proper early morning, still-dark collection of panics.. phoned Doc who said all the usual well it isn't recommended splitting, don't take more than 15mg finishing up with, well it's up to you ... she's lovely, but we all know the realities a little better!

Looking back over my history just before I was dx with PMR in July 2015 I had rapidly, over 2 months, lost a stone and a half (Idid regain most of it, thanks, pred) due to caring for a terminally ill friend with oesophageal cancer and just recently in 3 weeks have lost almost the same, due to IBS, diverticulitis and constipation. I suppose it's all tied up with the infamous stress, but I did wonder whether unusual and rapid weight loss caused what I assume is this flare. Also gut microbiome must be all over the place and we know that plays a large part in a properly functioning immune system.

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jinasc profile image
jinasc

You need to go to your GP now and ask for an urgent referral (which means she makes a telephone call) for a Consultant Rheumatologist appt for today.

If s/he won't take action then off you go to A&E and ask to see the Consultant in Charge.............take a note of all the meds you are taking presently with you. Do not leave the A&E until you have been seen and you know it is not GCA.

Fever and weight loss are a couple of the symptoms on GCA, you already have had the headache/eye ache but you need to ensure that it is NOT GCA........... You do not mess with this one.

You cannot afford to take that chance.......think 'eyesight'. If it goes it is gone. No getting it back.

Your small dose of pred might be holding it at present, but that inflammation can be, not all in your head. It mainly presents in the head and temple area but it can be in other places in your body.

To help you follow this link, read, download and take with youto your GP (who in my humble opinion), knows nothing about GCA.

pmr-gca-northeast.org.uk/us...

BSR Guidelines on the Diagnosis and Treatment for GCA.

These guidelines were prepared by a working group consisting of members of the rheumatology and general practice communities, together with patient representatives. They are now officially accepted as BSR guidelines.

It does not matter if I am wrong, you just don't take that chance.

Come back and if necessary, I will eat humble pie.......................

Slowdown profile image
Slowdown in reply tojinasc

thank you for your swift reply - I have an appointment this afternoon and will follow your advice, very much appreciated. Better safe than sorry in the humble pie department x

jinasc profile image
jinasc in reply toSlowdown

Good.

When you come back and know what is what, post and remind me to tell you about VSL#3 to help solve the gut problems. But if you are taking any-anti-biotics, then you will have to wait till the full course is finished. VSL#3 is a bit expensive, but give you back billions of good guys in each little packet. Anti- biotics knock out good guys as well as bad and you need those good guys back asap.

Normally Yeo Valley Organic Prio-biotic (L.Acidopolous) short life, will help get you back on track after a seven day course. But with your gash etc going to take a billion or so.........for a few days.

Me: GCA 5 years Remission 6 years.

Slowdown profile image
Slowdown in reply tojinasc

Will get back to you tomorrow with info when I have it .. re. antibiotics I eat a lot of Rachel's Organic full fat Greek yog with probiotics. I used to make kefir with about 14 billion 'good guys' but somehow stopped when I had colonoscopy which is when they discovered IBS, diverticulitis (probably exactly the time I needed it most). Will look up VSL#3, jinasc, and many thanks.

PMRpro profile image
PMRproAmbassador

You HAVE had the IBS/diverticulitis and constipation properly investigated haven't you?

Otherwise - what jinasc said.

And do try to dodge the board next time! But it could have been worse - could have been your head...

Slowdown profile image
Slowdown in reply toPMRpro

might have blown away the brain fog... IBS and diverticulitis dx in July during colonoscopy, although my notes don't mention IBS but I was told at the time. My GP keeps telling me 'just a tomato seed can get into those little pockets', which leaves me looking ruefully at a garden full of luscious cherry toms (I've read that it's a myth, anyway, but who to believe?) Colon investigated with gentle 'hands on' by Dr and sachets of Laxido, which did the trick in 2 days. Is there something else I should be doing, seems as though 50% of the population has it .. Thank you as always for your advice, very much appreciated.

Surfing over with for the summer-that-never-was...

PMRpro profile image
PMRproAmbassador in reply toSlowdown

Lots of Italian recipes remove the seeds...

Slowdown profile image
Slowdown in reply toPMRpro

true, and I love Italian food .. and wine... better get picking ! I'll grow bigger ones next year instead of chasing the little blighters all over the cutting board..

PMRpro profile image
PMRproAmbassador in reply toSlowdown

OTOH - you can send them to me! They are my snack food...

Slowdown profile image
Slowdown in reply toPMRpro

Mine too until recently, like little jewels full of sunshine .. now destined for roast Med. veg with a glass of Barolo. Saluti :-)

jinasc profile image
jinasc in reply toPMRpro

No, they are coming to me, I have just eaten the last Santini, M&S tomorrow methinks.

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