Just signed up and fed up with PMR

Hello All

I'm in my sixties and diagnosed with PMR at the end of May 2017. I have seen so many different stories and experiences here which have increased my understanding of this vile condition.

I think I may be more fortunate than I realised as I started on 15mg of pred, last year, and have managed to taper to 3mg. However an attempt to drop to 2.5 mg produced a severe reaction, so it's back to 3mg.

My main problem is a complete intolerance of Omeprazole and Lansoprazole. I stupidly took the steroids without PPIs for some time, resulting in severe indigestion, resulting in weight loss because I couldn't eat properly. I'm trying an older drug called Ranitidine which has eased the stomach problems.

Looking at this forum I think I should count myself lucky to be only on 3mg.

I have discovered that swimming is better than any tablet form of pain relief. Many times I have eased myself painfully into swimming pools and open water, thinking this is a really stupid idea, but after 10 minutes the pain dissolves (often for the rest of that day).

[SheffieldJane]

What a marvellous discovery, I must try it again. Side effects should be negligible at your level of Pred. Live yoghurt before my dose seems to have worked for me.

[Hidden in reply to SheffieldJane]

Great idea, I bought some yesterday.

[Longtimer]

I have never in 6 years fingers crossed, had any gastric problems, and take nothing to prevent it, but like SheffieldJane...I smother my breakfast in live yoghurt, maybe there is something in that.....

As for the swimming, I can just about get in a Jacusi....hate having to get out....the steps!

[Hidden in reply to Longtimer]

I'm hearing and reading more and more about the benefits of live yoghurt. I must try this more often as I have to be very careful of what I eat and have to eat very slowly. I've pushed myself to a low dose of prednisolone because I can't cope with the side effects.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Hi,

Once you get below 7mg (equivalent to the cortisol level your body would naturally produce) or thereabouts you shouldn’t be getting any side effects from Pred. And “pushing yourself” lower than the amount you actually need is really counterproductive - it just brings on a flare - as your drop from 3mg to 2.5mg unfortunately has proved.

Just get back to an even keel, hopefully 3mg may do it, maybe not, and then take things more slowly. If you’ve only been diagnosed since May 2017 then I would think your PMR is still active. If it is, then you need the correct amount of Pred. Easy as!

Actually, you may think PMR is vile, but there are a lot worse ones out there, at least it’s not life threatening!

[PMRpro Ambassador in reply to DorsetLady]

Couldn't agree more - and I have never had a pred side effect I thought was worse than PMR. And I've had a few...

[Hidden]

Hi

Yes the yogurt is really helpful & possibly your GP could prescribe you ‘enteric coated’ Pred to help ease your stomach issues, they are available in 5mg; 2.5mg & 1mg (some GP’s don’t know about the 1mg ones though)

Congratulations on getting down to 3mg you are amongst the very few that can achieve that so ‘Well Done’ but take it steady now as you don’t want to undo all the good work so far.

Glad the swimming 🏊🏻‍♀️ helps too!

Best Wishes

Mrs N 💅🏼

[Leilagirl]

So good to hear. I’m planning on incorporating that tomorrow into my plan. Thanks!

[Rugger]

I don't think you were 'stupid' to avoid a PPI. I took the prednisolone and a PPI for 8 months, only to discover I had osteoporosis. I'll never know if I had it before I took the drugs, but both are not good for bone health. I hope you are on a calcium and vitamin D preparation?

I take 'gastro-resistant' pred - available in 1mg, 2.5mg and 5mg tablets (UK), but they can't be cut. I adopt a belt and braces approach and always take them with porridge or yoghurt.

Me: PMR diagnosed May 2016. 1 flare at 12 months and another recent flare. On 8mg pred.

[Hidden in reply to Rugger]

These gastro-resistant, enteric coated pred seem a good idea. I'm awaiting the results of a dexa scan and will need to consider supplements.

I want to have a good talk with my doctor about all these things but I've had serious trouble with him. I've just discovered he "forgot" to forward 2 referrals for eye problems. Long story but I received a huge apology a couple of days ago. The PMR has taken away my fight and energy and I feel too weary to have another consultation at present. Apart from the dexa scan there has been no monitoring of my progress.

[Rugger in reply to Hidden]

You shouldn't be 'considering' supplements (calcium and vitamin D) - you should have been on them from Day 1! I wasn't prescribed them until a 'new-to-me' GP took over my care after 8 months and realised that his colleague hadn't! We need to protect our bones when on pred. Fingers crossed for the results of your DEXA scan. Also, ask for a blood test to check your vitamin D level.

In view of the trouble with your GP and the HUGE apology, you should be in a good position to demand a thorough review of your health, on your terms, with a GP of your choice, if you have a choice. Can you speak to the Practice Manager? You don't have to fight - they should bend over backwards to look after you having forgotten about your eye referrals. They should be ashamed, nay scared, that they've neglected you in this way. (I will NEVER again see the original GP who kept me on a high dose of pred for longer than recommended, prescribed a PPI and didn't mention a word about my bones, nor a word about GCA......)

What a blessing this forum is - I've learnt so much in the past 2 years.

Stay strong x.

[PMRpro Ambassador in reply to Hidden]

Take a bit more pred - that'll bring your mood to fight back!!!

[Hidden in reply to PMRpro]

I fear the return of that awful stomach pain. However I should pursue the enteric coated pred. One problem, although I feel tired now, during the period of taking 15mg tapering to 10 mg I felt alternately depressed and manic. At the time I put it down to reaction to the diagnosis of PMR. However I'm not sure now. I must talk to my doctor.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Please do, unfortunately not all doctors are equal- especially in the PMR stakes!

If you haven't already, have a read of attached, it may put this a bit more into prospective -

healthunlocked.com/pmrgcauk...

[Hidden in reply to DorsetLady]

Thanks so much for this. I feel I have been thrashing around in the dark trying to understand what’s happening and how can I manage this.

However if I lose hope that recovery is somewhere in sight, I’m not sure if I can keep going. I’m a glass half empty type of gal and struggle with melancholy at the best of times.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Hi,

I think we all feel like that at the beginning - there’s so little information generally about our illnesses.

If you don’t already know, I only discovered I had GCA after 18 months of increasing pain and fatigue unfortunately culminating in sight loss in right eye over a period of about 4 days!

I was very ‘down” initially coming to terms with the loss of one eye and the huge level of steroids required to save the other one. But after a while I realised that the saving of my remaining eye made me feel better that the loss of the other (if that makes sense). So I decided I needed to get on with life and make the most of what I did have.

Unlike you, I’ve always been a glass half full person (we are what we are) and although the journey was very difficult at times (I lost my beloved husband during it) I have come through unscathed (well relatively). You will too!

These may help you, I do hope so - take care

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Zebedee44]

Hello, I just wanted to add that I take kefir every morning with my uncoated tablets and have had fewer stomach and gut problems than ever before. I am lucky that there is a Polish community near my village in West Wales and Polish kefir is cheep and available (about £1.39 per litre even at the local branch of Co-op). It tastes like plain yoghurt used to taste and of course is very good for my microbiomes and gut function. I recommend it.

I am impressed that you have tapered to 3mg so fast. My not very sympathetic doctor would have liked a faster taper so I changed to a more understanding one who accepts that my body and state of mind need 8.5 mg at the moment. And like Rugger, some of my tablets are gastro resistant so I take part of my dose at night for better sleep. Haha, it doesn't always work, the hot sweats see to that!!

Best wishes, Chrissie