Fast taper again -advice please

[Coffeebeans]

Hi all, I have my MRI appointment on Christmas Eve (I know I know but this fits quite well really)

My instructions are to be below 10mg pred in the 7 days preceding but preferably closer to 5mg. I'm currently on 13mg. They don't really mind how I reduce other than those instructions.

Is there a good way to do this please? I had planned to do as follows;

13/12 - drop to 10mg

18/12 - drop to 7mg

22/12 - drop to 5mg (if possible)

I know this is going to hurt, this is second time round for this sort of taper so I want to have enough inflammation on the scan to make it worthwhile 😢.

Thanks all

[123-go]

Why are you being asked to taper before the MRI?

[Coffeebeans in reply to 123-go]

I'm being asked to taper so that any inflammation will be visible, we are still not 100% sure this is PMR.

[SnazzyD in reply to Coffeebeans]

That’s making a big assumption that the residual effects of the Pred aren’t still enough to suppress the inflammation such that the MRI doesn’t show it. I really hope so. Good luck on your second 😣 white knuckle ride reduction,

[Coffeebeans in reply to SnazzyD]

I hope so - the last time the PET scan showed inflammation highly suggestive of PMR at 5mg.

I don't taper well at all and am expecting a great deal of discomfort at or below 10mg for sure. Fingers crossed

[123-go in reply to Coffeebeans]

Thank you. I hope all goes well and that you finally get a diagnosis.

[DorsetLady PMRGCAuk volunteer]

It sounds as good as anything (well it doesn’t, but you know what I mean!)....

Hopefully only a few days of discomfort.......but if you feel really rotten at 7mg, don’t go down to 5mg and make yourself any worse.

Let’s hope the effort is worth it.😊

[Coffeebeans in reply to DorsetLady]

I'm laughing at the comment 'sounds good but not really' that describes it perfectly.

I'll proceed on that basis and see . At least my daughter is home from uni so i can get my hair washed. It's another step towards potential answers 😊

[TheMoaningViolet]

Hi, notwithstanding that there may not be enough inflammation to see on the MRI (wouldn't CT PET be better anyway) and that, as DL says, you may need to stop if you feel terrible (your adrenals are likely to get upset), I would start by dropping 1mg per day for 3 days from tomorrow and when you reach 9mg, linger for a couple of days at each dose and see how you go. If it's tolerable you will get to 5mg by 24th.

[Coffeebeans in reply to TheMoaningViolet]

Hi' I've already had Pet CT , they are looking specifically for spondyloarthritis on this one and apparently MRI is better f tor these purposes.

I'm not to drop below 5mg but yes I agree, I'm expecting the adrenals to struggle but luckily I can clear the decks for 2 weeks and take it easy.

I like the idea of tapering each day then lingering to see how I feel. Thankyou

[Coffeebeans]

I did consider that but wasn't sure. I find each mg taper acutely painful and the mood swings are unbearable. I know I will spend the next 2 weeks in a weepy mess 😢

Gradual or in drops.. hard to know which would be less of an issue to bear.

[tangocharlie]

Very tricky decision. When I did it I think if I remember right I just did it quickly over a few days as Pred doesn't stay long in your system. Interesting that inflammation didn't show on a PET CT when I was on 10 but did on 7.5 but then didn't again last time when I was on steroid injections even though they should have been wearing off by then. In my experience, adrenal problems take a while to come on so you should be OK a few days around the 5 mark for a few days. But I also know that every time I have reduced Pred to have a scan the inflammation ramps up and is then harder to get back under control, but that could just be me, but PMRPro also mentioned she had the same problem. Another option would be to switch to hydrocortisone for a week to keep the adrenals going - you could ask your rheumie. I had a CT scan with contrast a few weeks ago which didn't show inflammation in the aorta that we thought might be there, but I had been on high dose steroids so I think they had dampened things down somewhat.

[Coffeebeans in reply to tangocharlie]

That's interesting, about your results. These things are never straightforward are they. I'm glad they didn't find inflammation however I know that doesn't answer your questions on your symptoms at all.

I had to go to 20mg from 15mg after the pet scan so fully expecting a similar flare again. Although I am low carb now which has help hugely. Christmas in the way though yikes.

[krillemy in reply to tangocharlie]

Where in the body was this inflammation seen? Here in Denmark is is belived now by doctors that it is always the tendrons that is inflammed - nor fx muscles

[Coffeebeans in reply to krillemy]

I think you are correct in that some of the tendons are an issue. For me specifically the tendons near the pubic bone were inflamed and so so painful - quote normal in PMR I believe. Also round the shoulders, hips and femur. that's as much as I know.

[PMRpro Ambassador]

I tried it for a PET-CT in March - it was negative so was that because I failed to get low enough or because there is nothing there? And I need more pred now than I did in January ...

[Coffeebeans in reply to PMRpro]

Hmm, really difficult isn't it. These tapers are not nice are they. I'd be quite upset if it didn't show something after doing that.

But whatever you have going on is steroid responsive... Just wish they were easier to diagnose

[PMRpro Ambassador in reply to Coffeebeans]

Exactly - the only reason for knowing if it is something specific is that there may be a better option. In the case of spondylarthritis there may be.

[tangocharlie in reply to PMRpro]

Same thing I'm trying to figure out, I just wish I'd had the scan when I was at my worst rather than after steroids had sorted things out to an extent. In my case if LVV had shown up or inflammation in the aorta that would have given us the treatment option of TCZ. I'm just reading the Dejaco paper you have posted before which seems to be hinting that PMR is a subset of GCA, not the other way round, and for ome people, something stops full blown GCA and for others it doesn't, if my understanding is correct.

[PMRpro Ambassador in reply to tangocharlie]

I had several weeks of very typical GCA symptoms plus the start of the PMR being a real pain was massive claudication in thigh muscles. I just didn't know enough then. The consensus is I originally had LVV/GCA - no proof though.

[tangocharlie in reply to PMRpro]

I think I might have been the same - the seized-up concrete legs were always a big problem and still are, and the breathing problems.

[krillemy in reply to PMRpro]

Hi. Just wondering where the doctors are looking for inflammation? Tendrons, muscles or joints when you get the PET-CT or MRI scans?

[PMRpro Ambassador in reply to krillemy]

Probably depends on the doctor, although I imagine only the real experts bother doing it. Mine was to look for arterial inflammation - none found but I don't know if there was any sign of joint inflammation. I think this is relevant:

jrheum.org/content/46/12/1552

[krillemy in reply to PMRpro]

Thank you so much for the link It explains a lot of what I hear here

[Loyd]

Oh dear!! I don’t understand why you are being asked to do this. I chose to do exactly what you are doing at the start of Covid and got down ridiculously fast to 3mg and had the worst flair. Had to go back up to 30 mg to finally get it under control. Nightmare! Do hope you don’t have that. Good luck.

[Coffeebeans in reply to Loyd]

I'm fully expecting a flare and an increase in pred however we need to do this to try and get the diagnosis. Theres a possibility of RA or spondyloarthritis, the treatment is different to that of PMR therefore important to try and diagnose.

I really wouldn't even contemplate doing this otherwise 😊.

Hope your flare is under control now.

[Pollynolongerinagony]

I feel so so sorry for you. will say little prayer if I may. thinking of you and hoping it will soon be over. After two years of agony till I was crippled in bed I finally used my savings and went private for a diagnosis as I knew it was PMR. My bloods were normal but the consultant said it would be cruel to not put me on steroids as I had all the symptoms of PMR. Miracle cure! I was skipping around my garden within two days. Its still a struggle with horrific pred allergy and side affects including pred induced clot, 3 x anaphylactic shocks so now carry EpiPen and cant have the vaccine currently, and an arrhythmia attack of epic proportions, but I'm still here and , like you still on my journey. Good luck with the tapering and your MRI result.

[Coffeebeans in reply to Pollynolongerinagony]

Oh wow, what an ordeal. I do hope you stay safe until covid is less of an issue.

Thankyou for the good wishes x