Flare?

[Beddielove]

I have read previous posts and really helpful but still not sure what I need to do now..

I probably reduced Steroid more than recommend. Started on 12.5 in December 2023 very reluctantly. I don’t like taking meds generally so def didn’t want steroids. I diagnosed myself and googling symptoms & confirmed by Gp at that point, after suffering for quite a while. I’m insulin dependant diabetic so sent my bloods haywire. Not a good time. Gradually reduced, but after being told by GP ( who had missed high CRP markers) to do 4 weeks in between I found advice that differed. I eventually stopped 1mg on 15/5/24. A bit of pain each time I dropped but managed it - until recently.

I also had a a lot of shoulder & wrist pain couple of weeks ago, but told generally wear & tear. Now ok. This week and some of last, muscle weakness in arms and this week legs…

I’ve asked GP to ask hospital for permission to take alternative steroid that is more suitable for diabetics but not heard back, which is why I’ve been reluctant to start Prednisolone again. Feeling I must now & take 1mg to see if that helps. Such a long question I know! Sorry. Amy suggestions considered.

[DorsetLady PMRGCAuk volunteer]

Hi,

Think you probably will require more than 1mg…

I’d be inclined to try 5mg for a couple of weeks… you may be able then drop back to 2 or 3mg… but it’s not guaranteed.

And PMR is highly unlikely to be gone within 6 months… at least not the PMR we take about on here.

Az for an alternative steroid - a steroid is a steroid is a steroid… that’s probably why you haven’t had reply.

Other diabetics will be along shortly to help on that side of things.

[Beddielove in reply to DorsetLady]

Thanks. If I try 1mg and increase if not working? I didn’t have any issues with 1 fir a reply or is that wishful thinking..

Deflazacort is the alternate and it reportedly doesn’t send glucose off the scale apparently.

Very difficult dealing with that on top.

[DorsetLady PMRGCAuk volunteer in reply to Beddielove]

Sure it is - hope you can get Deflazacort authorised then

[Beddielove in reply to DorsetLady]

Having read a lot of posts this week I’m confused about another one today saying not to go back to ‘normal’ activity ? I have literally carried on as normal as the steroids worked to help alleviate pain. I work part time over 3 days. I have my 2.5 yr old grandaughter for 2 days 8-6 and pick up the older granddaughter (special needs) after school 2 days after a brief rest from work! I also walk dog every morning. No one said about reducing activities 😂& not sure I could 🙄.

[HeronNS in reply to Beddielove]

I certainly didn't reduce my activities when I started pred. In fact I felt so much better my husband later said I was like the Energizer bunny! I was able to do things which had been literally painful for quite a long time. However, as I reduced and got close to the dosage where adrenals have to pick up the pace again, that's when I had to learn to pace myself, which I did by making sure for every period of activity I also had a period of rest. Also that even pleasant socialising could be quite exhausting. I was on pred for close to 9 years and in that time age has claimed its due, which means I will probably have to "pace" myself for the rest of my life.

[Beddielove in reply to HeronNS]

Thank you. That helps. I have had periods when I have felt absolutely exhausted but have kept going- due to being relied on. I have used my dog walker on occasions though when walking the dog would just have been too much on top of everything else. Thanks.

[DorsetLady PMRGCAuk volunteer in reply to Beddielove]

That's not quite what you replied to me!😊

[Beddielove in reply to DorsetLady]

Only the odd concession but otherwise kept going - never been off sick and I walk the dog for an hour in the main every day.

[HeronNS in reply to Beddielove]

So that does show there are perhaps some things that have to be let go, or hopefully picked up by someone else in the family? Although I personally have not had that luxury since my younger son got a life and now has his own home! Hubby has become much more dependent on me because of problems with his eyesight, and since a bout with covid (2022) apparently no energy and some mental confusion. It does mean I cannot meet even my rather lax housekeeping standards, although I try to keep things clean, if not tidy!

[Louisa1840 in reply to HeronNS]

Heron, I can so relate to "The Energizer Bunny" it was wonderful while it lasted! Now I am down to 4.5 mgs of pred after being diagnosed in May 2017. I am beginning to feel my adrenals may be starting to pick up but, emotionally, I am a bit up and down which I guess makes sense if my adrenals are stuttering? I also totally relate to alternating between activity and rest> I just love my midday one hour rest!!! You are also right about age claiming its presence. When you've been on pred for a number of years you simply don't know what natural ageing would have done in those years.....

[HeronNS in reply to Louisa1840]

I have a strong memory from the summer I reached 4 mg. At the time our younger son spent a lot of time with us and we'd go on little road trips or explore the local urban trails. Unfortunately I forgot to wear my pedometer on this particular day so have no idea how far we actually walked, it seemed like a long time on a wide path through endless woodland. Finally we realized were not going to arrive at a natural ending place, so turned around to go back. I felt like I was walking through water and seriously wondered whether I'd make it back to the car. That walking through water thing lasted for several weeks, and then it was over. I think it's not uncommon, although by no means universal, for people to encounter "deathly fatigue" at about this dosage.

[DorsetLady PMRGCAuk volunteer in reply to Beddielove]

Well it’s good that you can… but many cannot… just be pleased. 😀 .

[PMRpro Ambassador in reply to Beddielove]

Some people starting pred immediately use the false sense of energy to catch up on all the things they haven't been able to do while waiting for a diagnosis. If that has been over a longer period, and it often is, and their activities were heavy manual work/hobbies or high level sport, diving straight into that sort of activity can result in the development of DOMS, delayed onset muscle soreness, which is far worse than you would have expected and it can take a long time to resolve because of the effect of PMR and pred on muscles. They then come to the forum worried because they think the pred isn't working or they have relapsed. No reason not to carry on with your normal relatively light activities if they DON'T cause extra fatigue or pain and stiffness but it is better to readjust over a few weeks rather than all at once.

[Louisa1840 in reply to Beddielove]

I am exhausted just thinking about your schedule Beddielove!

[PMRpro Ambassador in reply to Louisa1840]

Me too!!!

[PMRpro Ambassador]

Hi and welcome! I'm not sure what steroid you mean - all have similar effects. But how quickly were you tapering if faster than every 4 weeks? The problem is that by tapering that quickly you may not be leaving enough to e between changes in dose to know if the new dose is still enough to manage the inflammation being created on a daily basis as long as the underlying autoimmune disorder that creates it is still active. After only 5 months it is extremely unlikely it has burned out yet - 2 years is generally the minimum duration.

I would suggest you use the flare protocol that is used by many when they have overshot: take 5mg for a week and then you could try dropping to 2mg and see if that is enough and then taper slowly from there if it is. I'd suggest 1mg but if it isn't enough you will have to repeat the flare bit and creeping up rarely works well. I hope 2 will work - but it is difficult to know when you have tapered so fast.

And that isn't a long question!!

[PMRpro Ambassador in reply to PMRpro]

Ah - did you mean deflazacort? The paper that claimed that is from 1987 and another from 1991 but they are VERY small studies and appear to not have been followed up. I don't know how much it is used in the UK - and may not be approved for PMR.

[Beddielove in reply to PMRpro]

Yes it is. Apparently an Endocrinologist can approve that I was referred to. I’ve asked GP to write to him.

[PMRpro Ambassador in reply to Beddielove]

That's great - I wonder why other diabetics with problems haven't had it suggested. Or maybe not enough of them see an endocrinologist and only they know about it. Definitely worth knowing about that though.

[headgirl in reply to PMRpro]

I have been taking Deflazacort for around 6 months & it has helped me enormously. I am no longer prediabetic & it has enabled me to cut my dose of Pred down to 5mg (was on 15mg & am a longtimer). The aim of my consultant is to slowly get me off Pred completely & just take Deflazacort.

[PMRpro Ambassador in reply to headgirl]

Why do you have to taper the pred? 6mg deflazacort is the same as 5mg pred. When I had to switch to methyl pred here it was from one day to the next, and the same when I was switched back to prednisone/

[headgirl in reply to PMRpro]

As I am very sensitive to any reduction of Pred, my consultant feels this is the best course of action.

[Beddielove in reply to headgirl]

Sorry. Only just seen this.

[Beddielove in reply to headgirl]

So you take both? Is that because you are on Pred & can’t simply swap over? That’s what I’m worried about so I need to speak to Dr to see how long & keep Pred dose low I think .

[Beddielove in reply to PMRpro]

Thank you. Think I’ll try 1 and then see…

(3weeks in the beginning and then dropped to 2 weekly )

I’ll also chase up the alternative steroid.

[PMRpro Ambassador in reply to Beddielove]

2-weekly is about the limit - had you had any return of symptoms?

[Beddielove in reply to PMRpro]

Yes. That’s why I’m taking again. Sadly.

[Flivoless in reply to Beddielove]

Like many before you Beddielove, you are trying to buck the system, but the system always wins in the end. Are you absolutely sure you have PMR? Only with such a low starting dose of 12.5mg, and the speed that you have reduced, getting you pain free is extremely unusual.

[Beddielove in reply to Flivoless]

Yes definitely. Should have started on 15 but I’m so stubborn! Cut one in half. Result was good. However, ive def tried to buck the trend and its not worked….

[PMRpro Ambassador in reply to Beddielove]

It almost never does! To be fair, 12,5mg is the bottom end of the recommended range for starting dose and it was claimed to achieve symptoms relief in 75% of a small study in a month. But who wants to wait a month before deciding it wasn't enough? And if it is far too much, you will be able to taper relatively easily so even a high starting dose isn't the end of the world.

[HeronNS in reply to PMRpro]

So true! I remember grumbling that I'd started at 15 when it's possible 10 would have been enough, However I'd tapered to 10 in two months and in the big picture that was no time at all and certainly ensured that my time on pred was, although eventually lengthy, largely without problems.