Pred steroid med only option new to this nine months almost ten months

[Sasol]

Thx for everyone’s replies regards messages I wasn’t sure how to thx again I see many of you talk about pred med steroid I tapered down after nine months but for two weeks was too much so started again at 15mg Is this the only Steroid option ? I’m new to PMR and really have trouble getting used to it but after two weeks of going off after tapering right down to nothing it was too much is this a lifetime thing with the pred I am from s afr last year after dads passing I really think this started it up does that sound right stress related ? It’s hard accepting this at least I came upon your group thanks fir the way you support each other

[sara44]

Slow does tapering is the only way to go as a flare is horrible and you do not need that in your life listen to your body is 0.5 to 1 mg once a month is quite efficient and usually you don’t have any flyers with that

[PMRpro Ambassador]

The average length of treatment of PMR with pred is just under 6 years. This is a journey of years, not months, and that is something you may have to get your head around. One in five of patients do get off in a year but I haven't come across many personally. Half are off by 6 years but I would say maybe 4 to 5 years is common.

There are a few versions of medium acting corticosteroids - that means ones that you would take once daily: prednisone, prednisolone and methyl prednisolone. Which you get tends to depend on where you live, different countries have different ideas. In the UK it is usually prednisolone, in the USA prednisone or methyl pred (Medrol).

If you got off altogether and it took a couple of weeks for symptoms to return I suspect that you will get away in the long term with 5mg or even less. Some people get to 1mg and are fine - but not with zero. Did you notice when pain and stiffness started to return?

[Sasol in reply to PMRpro]

Hi thx for reply it started almost immediately by the end of three days it gradually started to ache and hurt all over my face if makes sense always feels like it been kicked and that’s when I know my pain is going to really start up badly and then my shoulders start neck feels like match held next to it then I just cannot hold out any longer I take gabapentin and paracetamol three times daily two paracetamol and one gabapentin not easing pain though I’m sorry didn’t realise this is a long process I tend to get depressed a lot and have to chat to phsychologist do others get this too really don’t know much about this going to see dr in Poole hospital in 11 maybe get more info I hope this is why I came across this group thank you

[PMRpro Ambassador in reply to Sasol]

Almost immediately when though? After you took the last dose? Or at 1mg, 2mg - what dose?

[Sasol in reply to PMRpro]

1mg I tapered in hope that if I stopped it I would be able to see what steroids were actually doing and in hope that I would leave it but unfortunately I learned the hard way I have blood test every month and apparently 77 high so obviously I need the steroids that’s why I wa hoping different one as I get red blotches and round looking face when I thought now is the time to stop but I was down to 1 from 20mg originally but quite few times had to stay in 15mg Thanks

[PMRpro Ambassador in reply to Sasol]

Had you been patient and reduced slower at the end you probably wouldn't be in this position now. You obviously need a very low dose to manage your PMR inflammation. If you tried 10mg for the present that might be enough to bring the inflammation back - although 15mg would do it quicker. When you need a low dose like that, then it is usually easy to reduce and it goes fairly quickly.

Corticosteroids are corticosteroids - the adverse effects tend to be similar whichever you are put on. Cutting carbs, especially processed carbs, often reduces the round face effect and any other weight gain. That also reduces your salt intake - also an important factor when on pred as it leads to fluid retention and bloating.

The red blotches are probably what are called petechiae or purpurae. They are annoying but not dangerous. Mine are almost always due to scratching bit face fairly quickly.

[HeronNS in reply to Sasol]

I agree with PMRpro. I've just popped back onto this forum having been a member in the past while I very slowly tapered. I'm just in the final week of A WHOLE YEAR taperimg from 2 mg to what I hope will successfully be zero pred. I started pred in 2015, 15 mg, having had symptoms for over a year beforehand. So I fit the textbook case of about 6 years with PMR. Patience really is the key. Once you've got those symptoms under control again (and make sure they really are) don't ever be tempted to speed up the taper. And another rule to add to many people have come up with over the years, "the lower the slower". Just because I was at 2 mg for a couple of years didn't make it any easier to come off it more quickly, the opposite in fact. Good luck!

[maria40 in reply to HeronNS]

Good to see your name again Heron. Good luck with the tail end of your taper.

[Highlandtiger in reply to HeronNS]

Yes good to see you back again and good luck for the rest of the week leading to zero. It would be good if you could maybe pop back again in a few months just to let us know how you’re doing..?

By the way I finally managed to finish Invisible Women during lockdown! Yay!

[HeronNS in reply to Highlandtiger]

I would have got it by now but of course the library can't fulfil hard copy holds at the moment. When I feel up to it I'll make a post "all about me". Hope you are doing well.

[Jackoh in reply to HeronNS]

Good to see you back Heron! X

[Sasol in reply to HeronNS]

Thx fir your info I really appreciate all and any help thx again