Is this a PMR flare Up?

[PMRMiltonkeynes]

Morning everyone, I need some advice because I am very confused about where I am with my PMR. I was diagnosed in October 2015 and have been on Prednisolone since then (originally 20mg a day). On 1st October this year I dropped the dose to 1mg/2mg alternate days and on 9th November to 1mg a day. This has been under guidance of my Rheumy.

The other medical issues I have are related to my shoulders (tear in tendon on left shoulder and the humereal head has collapsed on my right shoulder I have been told due to arthritis which 'may' have been caused by taking oral steroids). I will need two operations. I have also recently had a whole knee replacement. I have a terribly stiff and painful neck apparently caused by osteo arthritis. I have also been having pain in just one finger joint.

On Saturday I had terrible pain all over my body and it felt just like when I first had PMR I could hardly walk, could not even reach my medication on the top shelf of the kitchen cabinet (which is not normally a problem) I had pain across the top of my back and unusually pain under my breasts (like a line of pain) which I have never had before. I went back to bed to rest. I felt much better by Sunday.

I am desperate to get off the Prednisolone because I am really worried about getting arthritis elsewhere in my body but I am just wondering if Saturday was a PMR flare up and where that leaves me about getting off Prednisolone.

I am sixty years old but some days feel flipping eighty! How I long to feel fit and healthy again. I do try to go the gym and do gentle exercise a few times a week.

Any advice would be gratefully received. Sue

[SheffieldJane]

I haven’t seen Prednisalone sited as a cause of arthritis before. Few of us escape it. Mine has pre-dated PMR by some years. Have you had a bone density scan that looks for osteoporosis . This wet, cold weather is not helping any of us. I am currently heading off a flare, hopefully, with an extra 5 mgs on top of my normal dose of 6 mgs. I got pain relief within 2 hours. I will start reducing tomorrow, in the hopes that I have doused the flames. Diagnosed in March 2016, but guess that it has been around much longer. My mood lifted too, I wonder if that is a clue? I have been like an angry bear for days.

[Mary63 in reply to SheffieldJane]

Glad you are feeling better Jane.

[Daisychain12 in reply to Mary63]

Nice Mary ❤️

[bunnymom in reply to SheffieldJane]

Yes that little bit extra makes all the difference. I think being in pain doesn't help our mood and trying to figure out what to do about it. Glad you've rebounded.

[SheffieldJane in reply to bunnymom]

Thanks for your kindness.

[Daisychain12 in reply to bunnymom]

I agree. How can anyone be cheerful when in dreadful pain xx

[Daisychain12 in reply to SheffieldJane]

Jane my mood lifted too with the extra pred. Hard to know if it’s a side effect or just damn relief at pain easing. You are dealing with so much it’s great to hear you feel a little better darling. Thinking of you xxxx

[SheffieldJane in reply to Daisychain12]

I didn’t expect my enthusiasm to return either. Unfortunately I have celebrated by doing some more extravagant on- line Christmas shopping. Late at night. Trepidatiously surveying the damage the next morning. 😬🤭. Need a cheaper way to greet the dawn. 🎁🛒🎉🎊

So glad that you are in the light too.

[Daisychain12 in reply to SheffieldJane]

Whilst I share your nervousness at the bill my over riding reaction is “ stuff it”. You have had a rough time. So you let your hair down a bit. Don’t stress. Xxxxx

[piglette in reply to Daisychain12]

Perhaps it is the Christmas spirit! I went swimming with my Ozzy friend Lynda from Melbourne yesterday, we then had lunch and a glass of champagne and talked all afternoon.

[Mary63]

I don’t think there is any link between prednisolone and developing arthritis. It just happens that most people over 50 would have some arthritis and as we age it increases.

Also to put your mind at ease 1 or 2mg pred is SUCH a small dose as to be insignificant.

Is it possible to reduce by 1/2 mg using one of the DSNS methods.

Meanwhile why not do like I did last week and take a few mg extra for a few days? Say 5mg. And then drop back down to 2 mg. and then after Christmas start the steady road to 1.5.

Good luck!

[Maureen_75 in reply to Mary63]

I have been on 20mg for months now and am desperate to reduce I take 4tabkets a day but when I reduce to even 3 tablets I am in agony .I have been taken off methotrexate so really have no other RA drug at present that can help me My consultant has said he may consider a biological injection but I am worried about it affecting my lungs as methotrexate did It’s a nightmare of pain at present and weight gain My face is unrecognisable now ,like a moon I have RA and osteo A Feeking very fed up with myself and decided to draw up a reduction of Tablets myself Slowly Anyone else done this successfully ?

[DorsetLady PMRGCAuk volunteer]

Hi,

Whoever told you that steroids may cause arthritis is a bit off the mark I think, it’s not usually acknowledged there’s a link as Mary63 says. I had arthritis long before GCA and steroids, and whilst the steroids may not have helped it, neither has age! My sister, who has never been on steroids has it worse than me. May be confusing arthritis and osteoporosis. My GP once said nearly everyone over the age of 50 has arthritis - in some it causes problems, in others none.

But whether Pred has exacerbated the situation in the past the dose you are on now is highly unlikely to make your arthritis any worse.

I would say it’s probable that you have reduced below the level of Pred you actually need - so if you have permission I would increase for a few days and see if that makes any difference.

A dose of 1.5mg per day rather than alternating 2mg/1mg would suit your body better. It may not sound a lot but your Rheumy’s method means on 1mg you are getting 50% less every other day. Imagine if that were your food intake, your body wouldn’t like it - and I doubt you would either!

[PMRpro Ambassador]

Sounds very much to me that you have overshot the dose you needed to keep it at bay - you'd be surprised how many are great on 2mg and not great at 1mg!

If such a low dose keeps PMR at bay - a form of arteritis, inflamed blood vessels - I'd take potential osteoarthritis as a risk. Pred can sometimes tend to speed up the degeneration of the joint linings, but it is probably something that would have happened eventually anyway and there is no way of knowing how long it would have taken.

[Daisychain12 in reply to PMRpro]

It’s all so mind blowing xxx