More on very low Pred dose = arthritic-type pains in hands and feet …

[Hopingsail]

Further to my post last week: It was the monthly meeting of our lovely local support group yesterday and we were swapping our experiences of the past few months; three of us have been going ultra-slow withy reduction as we were getting near 0 (and one had been on 0 with no bad effects for a few weeks) but we discovered that all three of us had developed exactly the same arthritic-type pains. We had a good laugh about it for we had all been feeling a bit of failure - thinking the others had probably been getting along fine! Comfort in shared disappointment…. I think we all needed that laugh as certainly I have been been feeling really fed up - garden to attend to - boat to ready for the new season - all requiring some strength in hands and wrists…..

The Matron from the Rheumy Dept at our local hospital was there (as he often is) and was of the opinion that this was most likely arthritis which had been hitherto masked by the Pred and the best course was to take painkillers such as Paracetomol. I questioned whether it might be possible to treat the pain as a flare - up by 5mg for a fortnight and then reducing to eg 2mg in the hope that the arthritis “mask” might be restored? He expressed the view that because of the other collateral damage done by long-term Pred that he couldn’t recommend that as a course of action.

This morning I have bi-lateral stiffness in my shoulders and neck… I have taken some paracetomol. I am also using an over-the-counter topical gel recommended by GP - FlexiSEQ - which seems to have some effect.

Thoughts / suggestions / sympathy welcome! (I eat a good balanced diet with plenty of oily fish and vegetables. Any dietary suggest also welcome.)

[DorsetLady PMRGCAuk volunteer]

Agree with your Matron... as many of us have discovered, OA pain is noticeable once get to low doses of Pred. Higher doses of Pred may help you forget you have OA, but it's still there, and very often deteriorating without you realising.

I wouldn't suggest increasing Pred either.. just stick with the Flexiseq [which is drug free] but only very good when you still have synovial fluid for it to work on, once you get to bone on bone, it's not as effective. Then a tiny amount of ibuprofen gel can also be applied if necessary.

The Flexiseq site has loads of information on diet, exercises etc - and send out regular emails with lots of info, offers etc -

flexiseq.com/blogs/

[Bcol in reply to DorsetLady]

Seems to be a familiar tale for a number of us. Sadly for me none of the gels has ever made the slightest improvement. Waiting for x-ray results on feet and MRI result on the neck, perhaps they will have some answers or of course, just confirm what we already suspect.

[PMRpro Ambassador]

All sounds about right to me! I always said, if a mg or two more pred saved me from sore OA hands I'd lie about the PMR pain!!!

That said - I'm waiting for a delivery of extra-strength Flexiseq to trial for not so much painful hands as what feels like sticking joints! I know I have a couple of potentially OA points that protest now and again.

PS - don't expect instant relief with it - a couple of weeks is normal and can take longer.

[Gc2596 in reply to PMRpro]

I have bad OA in my fingers, particularly right hand but now also left as try use that more. Looks awful, no way can bend index and middle finger anything like. Yes, the benefit of being on 9mg (just started 5 week 1mg taper) is no pain. However, I'd go with the OA pain rather than have PMR. In no doubt it will rear it's head again when/if get to lower doses.

[Broseley]

It's a bit of a puzzle to me, too. Every I go down to 1mg or 1/2mg I start getting pains in my knees, hips and shoulders after about a month. Rheumy assured me it is arthritis and discharged me last April, telling me to come off pred. He said my bloods were fine (but the test was 6 weeks earlier). I requested XRays. They came back as slight mild OA in one knee, but nothing elsewhere. Meanwhile flexiseq helped a little bit but not much. So I upped my pred to 5mg for a week as the pain had become unbearable and I could hardly walk. Within 12 hours all the pain had gone. So now I find I'm yoyoing between 1/2mg and 5mg as the pains keep coming back every 4 weeks or so. One week on 5mg then back down to 2mg for a few days, then 1mg then 1/2mg for 4+ weeks until it all starts again. Luckily, my GP is happy for me to carry on with pred.

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

That begs the question.. why repeat the procedure again, when it didn’t work before?

Either stay on the increased dose of 5mg long enough [ie. 2 weeks] to clear out the inflammation, or accept that 0.5 is definitely too low.. and settle for 2.5 or 3mg for a couple of months to get back in an even keel. Continually yo-yoing is not doing any good.

[Broseley in reply to DorsetLady]

Thanks, I guess I'm trying to be a good girl for rheumy and try to get to zero pred, which according to him, I should've been on for a year now!

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

Yes but he doesn’t have your PMR does he!… and as you progress in life you realise you have to do what best for you… not anyone else.

[Broseley in reply to DorsetLady]

He is of the opinion that you should only be on pred for 2 years max otherwise your body becomes dependent on it and your PMR will never go completely.

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

Yes I am aware of who you are referring to! Making no comment on that,, 🤦🏻‍♀️

[Bcol in reply to Broseley]

As DL says if it's not working then why carry on repeating it. If it was me I'd probably go to 5mg for an absolute minimum of two weeks, but probably longer, and then come down on 0.5mg reductions on a minimum of a five week taper and see how it goes.

[PMRpro Ambassador in reply to Broseley]

How can the rheumy be so sure it is arthritis? And that the PMR is no longer active? Another with a crystal ball that doesn't actually work ...

At what dose are you stable? That is where you need to stick for now - by yoyoing you are risking it getting harder to manage the symptoms. I am on both pred and Actemra - even with Actemra I cannot get to 6mg from 7mg without bicep tendinitis reappearing within about 3 weeks and it is part of my PMR, always has been, My rheumy is perfectly satisfied that that is what I need at present.

[Broseley in reply to PMRpro]

Thanks, it's hard to tell what dose I'm stable on. When I'm on 1mg I'm fine for 4 weeks or more. 5mg works to clear out the inflammation, so I guess somewhere in between?

[PMRpro Ambassador in reply to Broseley]

You may find that 2mg is plenty if 1mg gives you 4 weeks before you feel it. If you carry on it is likely that "5mg wasn't working" could get worse - it really is a risk.

An increase in the markers is often very delayed - that's why symptoms always trump lab results.

[Broseley in reply to PMRpro]

"that's why symptoms always trump lab results." That's what rheumy said originally, bit he didn't stand by it! Right, I'll try 2mg for a few weeks then. Cheers. PS please don't swear- you used the T word!!

[PMRpro Ambassador in reply to Broseley]

with a little t ... I was playing bridge ...

[Broseley in reply to PMRpro]

Rheumy was sure it was arthritis because the CRP and ESR were normal. I recently had another "flare" and asked the GP to test my blood as the 5mg hadn't kicked in. Once again bloods were normal, though later that same day the 5mg started working, so it might have been too late...

I have to say my GP is pretty clueless and is generally happy to go along with what I suggest. However she told me to go up to 10mg this time, as the 5mg wasn't working. I planned to take it the next morning, but didn't have to.

[DorsetLady PMRGCAuk volunteer]

Upping Pred? Depends whether it’s PMR or OA..and we have given advice.

[Hopingsail]

Just to say thank you for the comments above - especially from our experts! I intend to stay at 1mg per day for a month and then try a vv slow taper again. Meanwhile am using the Flexiseq (which is beginning to help), plus turmeric and black pepper capsules, magnesium spray, paracetamol, and concentrating on a more anti-inflammatory diet. HAPPY EASTER EVERYONE!

[DorsetLady PMRGCAuk volunteer in reply to Hopingsail]

Good.. and thank you, same to you. Hope you get some sailing weather - slight swell this morning no doubt!

[Hopingsail in reply to DorsetLady]

No sailing for a couple of weeks yet I’m afraid - awaiting installation of a new engine (another ‘ouch” - but this time in my pocket!)

[DorsetLady PMRGCAuk volunteer in reply to Hopingsail]

Definitely an ouch… but needs must..😊

[Meggs01]

I couldn’t believe it when I read your post this evening.I had only been been talking to my husband a few hours earlier about how painful my hands had become over the last week and wondered if it was because I am now on 1 1/2 mg. I think I now have my answer!

[Hopingsail in reply to Meggs01]

It’s a fright isn’t it!!