Newbe to the site: Hi All Diagnosed October 201... - PMRGCAuk

PMRGCAuk

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Rover25
Rover25

Hi All

Diagnosed October 2015, started on 30mg pred, after several relapses managed to get off pred in May this year.

Fine for 3+ months, then In Mid-Sept started with symptons again which increased in discomfort to an unbearable level on Thursday (Oct 11)

Really reluctant to go back on pred so have taken 200mg ibuprofen three times daily for past three days - no pain, feel great, but obviously cannot stay on this med long term so i itend to taper off over next few days and see what happens.

In addition taking tumeric and mussel extract supplements.

Would greatly appreciate any advice or thoughts from the community.

I wish you all a positive day :)

14 Replies

Hi Rover25, How disappointing for you!, Are you taking steps to protect your digestive system? That would be my worry. It might actually be worse than Pred in the long run. I can so sympathise with you. I was tapering happily down to 5 mgs when I got hit by a bad chest infection and now I can hardly get out of the car. Diagnosed in March 2016 PMR only, top dose 20 mgs. Any theory why you relapsed - like being hit with stress. Stats show that this disease is likely to be live for 5 years plus. Low dose Pred has minimal side effects. At least you took a break. I wonder if 5 mgs would get you over this hump?

Let us know what you do.

Hi

Thank you for taking the time to respond so promptly Jane, sorry to hear you relapsed also. I think my replapse was due to tapering impatience. Really not keen on restarting Pred even at low dose but take on board your comments and will reluctantly restart if i cannot wean myself off the ibuprofen within next week or two.

All the best to you Jane :)

PS. Welcome! 🌷

PMRpro
PMRproAmbassador

If ibuprofen is making such a difference I would question whether it really is PMR. Some forms of inflammatory arthritis can present almost identically to PMR and will also respond to pred - but also to NSAIDs which don't seem to do much for PMR.

Personally I think that long term constant use of ibuprofen has more unpleasant side effects than pred so do be careful - one lady ended up in A&E with a gastric bleed after 3 doses of ibuprofen for her PMR (under instructions from her GP).

Rover25
Rover25 in reply to PMRpro

Thanks for feedback - appreciated. I dont know whether it is definitely PMR but have had since Oct 2015 and has been diagnosed by two med professionals as PMR.

Take on board comment about ibuprofen, will only take for 1-2wks max tapering during that period. If pain returns will reluctantly go back to low dose pred.

All the best with your experience :)

Daylily2000
Daylily2000 in reply to Rover25

You should probably get bloodwork done to check inflammation levels to make sure is actually is PMR returning. Low dose of prednisone is safer than ibuprofen, in my opinion.

PMRpro
PMRproAmbassador in reply to Daylily2000

I agree!

Rover25
Rover25 in reply to Daylily2000

Bloods done - all fine!!! levels normnal.

Hi Rover25,

Ibuprofen helped me a little while I was awaiting diagnosis but it isn't something one would want to take long-term. In addition, if your body is used to ibuprofen, be prepared to ache a little more, for a few days when you come off the Ibuprofen.

If you really, definitely do not want to start or restart pred, then this is a long-shot, but you could try going on a "no-starch diet". It's a difficult diet because it means no bread, no cakes, no pasta and no potatoes, no chips, no crisps, no cereals, no starch-based thickening agents, etc. You can read about it in the book "The Keystone Approach" by Rebecca Fett. The diet was first used by people with ankylosing spondylitis but, as it was also being used by folk with other autoimmune conditions, I gave it a go for my PMR.

I got my formal PMR diagnosis last week, but, by then, I'd been on the diet for 2-3 weeks and my aches and pains were so reduced that my rheumatologist and I agreed to try a little longer without medication, to see how things went.

If you want to try the no-starch diet, then there are various lists on the internet giving the starch-content of foods.

It's cheaper and easier just to restart pred.

That's interesting. I hope you manage to avoid pred then. I've been taking it for over a year now and have read on here about low carb diet to avoid the weight gain which often comes with steroids and certainly happened to me. Makes me wonder if your suggestion would also help. Definitely worth a try.

PMRpro
PMRproAmbassador in reply to Hollyseden

I don't eat "no starch" - I eat some but no wheat. Although I still have PMR and every few years it will flare enough to required a return to 15mg pred for while, I generally do not have many of the complaints of pain and stiffness others have. I've always put it down to being unwilling to compromise on the dose of pred I take, it must be enough, but maybe it is due to the lack of starch. Many people on low carb diets do find that they suffer badly after a splurge on "treats" in the form of cakes and so on.

Thanks for comments/suggestions.

Just had bloods results - all normal, so i am a confused as to pain in neck, chest and back that has gradually built in intensity over the past 5-6wks!!

Welcome Rover25,sorry to hear you are having symptoms.I've been on this journey since Nov15.I agree with others about getting blood tests done to check for inflammation.Please let us know how you get on.

Rover25
Rover25 in reply to Sandradsn

Hi Sandra

Bloods done, all ok, so confused as to origin of pain in neck, back and chest that has built in intensity over past 5-6wks.

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