Update on tapering, plantar fasciitis and kefir.

[Ebiker]

Following the helpful advice from DL , PMR Pro and others 4 mths ago I increased my pred to 11mg per day in early September for 1 week, then dropped to10mg for 1 week and 9mg for 2 weeks and finally back to 8.5mg, the dose I had been comfortable on.

I was doing well but plantar fasciitis kicked in. I had a touch of this a few years ago and it sorted itself by using rubber inset heels. This time it was altogether more painful so I did all the right things, had moulded insoles made, ice and exercises 3 times daily etc and there has been some improvement, probably because I stopped my short exercise walks.

I tried slow taper again, 0.5mg in November but by week 3 that it was a mistake so I have been on 8.5mg again for over 3 weeks.

However, l am stiff in the morning and a bit uncomfortable most days, if I have used any muscles even gently ( ie sweeping, up and down ladder to put up lights) and I am feeling sore back again. This happens when I don't walk regularly...catch 22 situation.

Apart from the physical niggles my mood is "can't really be bothered, lost my spark ".

I guess that as I am less than 2 years on pred I am being too hopeful in thinking I can get to 7.5/8 mg and be in great form as I was earlier this year in early lock down.

Any thoughts ....Did I do better because of sunny dry weather? - (we have awful wet and damp weather here in north west England In winter). Am I getting too hung up on the need to reduce?

Reasoning does not work with PMR, it just doesn't listen! However I do listen to my body and my doctor is happy with that.

I think I should go up again but to what dose, (not sure) and stay there till spring at least. What would be sensible.. try going only to 9mg and see?

For information for others I am on 10 mg daily of omeprazole and still need to take tablets with yoghurt, keep a low fat diet and so on, but I have started drinking kefir after reading posts on here and l am now reducing the omeprazole gradually AND gut is a lot happier.

Happy Christmas? For most of us yes but sadly not for all. We must stay positive 👍🌞.

Good wishes to all.

[PMRpro Ambassador]

I don't think time has much to do with whether you are too optimistic - many people do get lower after 2 years, a few do get off pred in that time. But your symptoms suggest you simply aren't ready to go lower yet. It took me over 4 years to get reliably below 10mg - I have been down to 5mg and even 4mg but then had a major flare (happens for me very few years) and currently am fairly happy at 15mg - of course I would like to be at a lower dose, but I need to be able to function. In my experience - and I'm not alone - trying to force a reduction for any reason and then "manage" isn't good in the longer term. This latest needing 15mg is a combination of reducing for a PET-CT scan, Covid and a very unwell husband, before 11 or 12mg covered everything.

[Ebiker in reply to PMRpro]

Thanks for your thoughts PMRpro. It is always reassuring to hear from those with years of experience. Accepting that going up to 10mg and staying there for a while seems a good now.I feel better already this morning after splitting my dose and taking 5mg enteric before bedtime and 5mg plain with breakfast. Will see how it goes.

[Kendrew]

Hi Ebiker. Isn't it all a minefield of new and changing twists and turns! Each day seems different and you just get used to understanding why one ache or pain is occurring, when something else pops up! I'm less than 2years on pred also, and despite thinking I was doing all the right things in getting down to 2.5mg, this disease still got the better of me and I'm back up to 10mg. In Sept I was feeling great, but I feel back to square one again now and that's very frustrating. However, I've learnt so much about this condition and feel much more able to manage it, and that is a definite bonus.

I do think to some degree the weather affects how we feel. I've felt more aches during the damp cold weather of recent weeks.

Unfortunately, the things we really need to know, we're often not told by our GP or rheumatologist. Unless we're lucky enough to find this forum, we'll miss out on so much helpful and reassuring advice.

[Ebiker in reply to Kendrew]

Good to read your thoughts Kendrew. Yes indeed I cannot imagine what sort of mess I would be in without this site and the long-timers' experience.I have increased to 10mg and feel quite relieved really ad the info on here tells me that is ok. Fortunately my doctor goes along with what I feel and think as I have told her about the site.

[SheffieldJane]

I think you are doing a marvellous job of reading and managing your condition. Yes I do think that it is harder in the cold wet of winter, coupled with the sheer stress of the Pandemic and the measures to contain it. I think sitting tight an a good middling dose like 9 or 10 mgs is a wise idea. I could never get on with omeprazole and managed with yoghurt or Kefir until finally I moved to gastric coated tablets. They really suit me. I take them at bedtime and feel at my best in the morning ( about 6 hours to get into my system). I hope you have a happy Christmas too! PS It is not possible to hurry PMR, it just blows up in your face. Cultivate a calm acceptance and carry on listening to your body.

[Ebiker in reply to SheffieldJane]

Thanks Sheffield Jane. I have had gastric and reflux problems for some years but gradually improved matters once I realised that additives in processed food were a problem. The tablets added to the problem.However, I am on a mix of enteric and non-enteric tablets depending on dose as coated are only in 5mg and 2.5mg so last night after reading your reply I decided to take the 5mg coated before bedtime (with kefir) and I woke much easier this morning. So far so good!Have now taken 5mg uncoated for a speedier action to top up to 10mg. I will repeat this for another 24hrs and hopefully then take both enteric.

[PMRpro Ambassador in reply to Ebiker]

No they are not - there are also 1mg enteric coated tablets and after a hiccup due to a switch from one manufacturer to another they are now available again. You could try searching past posts (if you have an hour or so to waste) or you could post a new thread with a shout out for details. There is no need to make up the dose with ordinary pred if that causes a problem.

Right - google came up trumps!

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

should explain all ...

[Ebiker in reply to PMRpro]

Thanks. Will look at links and follow up next time I order repeat prescription. Good to know.

[PMRpro Ambassador in reply to Ebiker]

I'd start educating the pharmacy now - some of them are very slow learners ...

[Hildalew in reply to Ebiker]

I was SO p[eased to read, in your original post, that you had 'started drinking kefir after reading posts on here' and were 'reducing the omeprazole gradually AND gut is a lot happier'.

I do not take Omeprazole and realise that I was lucky that it wasn't prescribed for me before I found this forum.

Before Pred I wasn't on any medication but knew enough about the general benefits of live yoghurt (and kefir) to believe that it would be a good thing to take yoghurt (or kefir) with the Pred- as a balance for my digestive system. I have had no digestive problems in the two years I've been on Pred. (Apart from a rare moment when I ate grapefruit)

Reading posts on this forum I have come to the conclusion that, for many people, Omeprazole does exactly the opposite of what it is prescribed for - it worsens any gastric problems that people may suffer as a side-effect of Pred or that they may already have had before Pred.

But of course that conclusion is based only on 'anecdote' and absolutely no formal research.

[Ebiker in reply to Hildalew]

Hi Hildalew. Interested to read your comments on omeprazole.In some way I am more concerned about the effects of it than pred.

I was prescribed 20mg daily but after some months I reduced to 10mg and tried to miss every third day, not with success. Now with kefir I am trying g that reduction again.

[PMRpro Ambassador in reply to Ebiker]

Halve the dose every day first, then if possible halve again, then miss days - it can be as tricky to taper as pred.

[Ebiker in reply to PMRpro]

Would like to but cannot halve the capsules???

[PMRpro Ambassador in reply to Ebiker]

Hum - does it come in smaller doses? Here I would get my pharmacist to make up smaller doses - the joys of having a compounding chemist on hand!

[Ebiker in reply to PMRpro]

Thanks PMRpro. I can ask the pharmacist who works in our Health Centre. She is someone I know well and lives very close - the joys of living in a rural, friendly community!☺

[PMRpro Ambassador in reply to Ebiker]

Definitely!!! What you know is important - but so is WHO you know

[Griggser]

Regarding your diet, you say you’re on a low fat diet and the issue with that it can often be higher in sugar which is not good for inflammation. There is a lot of talk about low carb diets being good for reducing inflammation, along with type two diabetes and losing weight. Weight loss certainly worked for me, 3 stone, and I feel better for it. I’m not sure that the pain levels have decreased for me though. Certainly I feel better in the warmer weather and normally I’d be looking to go to Lanzarote for January and February as the climate there makes me feel better and you can walk every day without getting drenched!

[Ebiker in reply to Griggser]

Yes Griggser you are right about increased sugar levels. I should have said that low fat is only part of carefully changing my diet. I found I had to avoid processed foods and additives where possible, as well as keep sugar levels low. The worst things were cheese and wine!Fortunately I am able to have home cooked meals and be selective. This summer the garden has given me plenty of home grown veggies!

[whitefishbay]

Regarding your plantar fasciitis- I wear crocs when I get out of bed which helped first thing in the morning and then I was given a Strassberg sock (goggle it) which cured it after some time. It is annoying. Good luck & Happy Christmas.

[Ebiker in reply to whitefishbay]

Thanks for your comments. I guess the moulded insoles in my Hotter slippers do the same job as far as the foot pain goes. I do feel that it will however lessen with increased pred also and I will then be able to have a daily short walk for exercise. We will see. I have increased to 10mg daily.

[Amkoffee]

You may need to stretch your feet more following your walking excursions. There are exercises you can do that stretch the muscles in your feet and the time to do it as after your walk not before. You might also try walking slower. A treadmill would be ideal since it is softer than the road. Or perhaps try walking in grass or on the ground instead of cement.

[Ebiker in reply to Amkoffee]

Thanks Amkoffee. I am looking forward to walking again soon as I hope the increased pred will help the foot pain. It is very easy for me to walk on a softer surface as I have my fields. It would make sense to do so. I will try doing the exercises after walking. Never thought of that.