PMR flare and Pred advice please

[Marek1]

Hi Everyone thanks again for all the wonderful info out there .

It is now just over 2 years since I was diagnosed with PMR . When I initially started on pred the reduction of pain in my shoulders and hips was remarkable . I was on 15mg daily , after a while the symptoms cam back and I went up to 20 mg for a month or so .

I then reduced up to 15mg and then subsequently less using the methods described here . The lowest I have managed during this whole time was 7.5 .

Recently I have been hovering around12mg keeping the symptoms manageable .

In that time I have bought a house , moved into the house and lost my dad all within weeks . I was aware of the amounts of stress hitting me due to these events but was reluctant to increase the dose any more as the steroids have been causing me so many side effects , esp. feeling on edge and super anxious , (horrible) .

I was determined that now these events have passed I could reduce further and dropped down to 10.5 with a view to going down to 10 next . During this process I felt better in my anxiety but a lot worse with fatigue and exhaustion and slow signs in my limbs that the general PMR symptoms were hovering around . Overdoing it was quite common even though I reduced all my normal activities massively .

3 days ago I was doing some outdoor work (gentle) in the cold and wet and I got very very cold . I came in to the house had a shower and felt like a brick had hit me . The PMR symptoms came back with such a vengeance . All of a sudden I felt I was back to square 1 from 2 years ago . Both shoulders in pain , back of neck and flu like symptoms . It was just painkillers and bed .

I have followed the forums on here so I guess I need to reduce what I`m doing even more and to increase the pred dose to combat this flare . I have immediately increased to 13 mg and whilst this has helped , I can feel the PMR is still biting . Woke up today due to pain in shoulders !

Any thoughts please , How high should I try ? and for how long ?

Thank you fro reading this

[SnazzyD]

Just a thought, but it could be Covid or flu. Recent variants did just that to this household; going down in what felt like minutes, severe pain in shoulders, neck and back. Does paracetamol help?

[Marek1 in reply to SnazzyD]

Thank you .It helps a little . I`m about to take some now

[SnazzyD in reply to Marek1]

Do you have a fever or have been shivering or hot at all?

[SheffieldJane]

I am so sorry for your dreadfully, stressful experiences, that have actively worked against a normal recovery. I think you know that even though you have experienced unbearable stress you still haven’t behaved as if you have a significant, systemic disease. I imagine that you are a driven person who demands a great deal of yourself, including a quick recovery from this nuisance of a disease. My advice is to surrender to the disease and to start treating yourself with loving care. It will not respond to being ignored or worked through. If these diseases are “ for” anything, I think it is to show us that the life we were living was out of balance. This forum is littered with high achieving, athletic people Also people who have often been selfless in their lives ( particularly women, I say without apology).

It is your turn now, to nurture yourself and to begin to design a life that fits you. The only effective drug we have is Pred. It needs to be treated with respect. A proper tapering programme, as outlined in FAQs is required as is the strict pacing of activity and plenty of rest. A good nutritious diet that is low in carbs is needed too.

I hope some of this makes sense to you. There is a simple, mindful, programme to follow and you need to abide by it. This requires great patience and above all acceptance. You will find this forum a great source of knowledge and common sense. Wishing you well. It is the most challenging life test yet. 🌸

[Marek1 in reply to SheffieldJane]

Hi Jane , thank you . Youve got it in one!! I am a massively driven person , so this is very very hard , esp as I have bought a house in the wilds and have so many plans

[SnazzyD in reply to Marek1]

I think most of us on here are so we understand your angst

[Marek1 in reply to SnazzyD]

Thanx Snazzy

[SheffieldJane in reply to Marek1]

Plans will wait ( they make God laugh anyway) your health won’t. It will all come together in good time. Don’t be afraid to ask for help.

[Marek1 in reply to SheffieldJane]

Thanxn for your kind words

[SnazzyD in reply to SheffieldJane]

So true!

[Marek1]

Hi All I have just looked a t the forum info on this very subject . So I`m going to add 5mg to the last dose that was going ok . Thank you

[PMRpro Ambassador in reply to Marek1]

That is a good start!

I find that if I get cold I feel awful! Very very stiff, especially my thighs, and it is hard to warm u p again. I had a blood appointment this morning - sunny but still -5C when I went out, dressed as usual except winter shoes and not fur lined boots. I was fine until I waited for a bus after I finished, then did a bit in town and waited for a bus again - and walking the last bit home I was frozen. Took a couple of hours sitting with a hot water bottle in my knee to thaw out!!! Wait for the spring for your outdoor work - weeds and dust are very patient, they will always wait for you.

Living in the wilds is a dream for many - a word of warning: if you overdo things and make youself unwell, even just sore muscles or a minor injury, that makes you hurt to move, it can soon turn into a nightmare, Even going shopping to be able to eat becomes a major expedition that you may not be up to, Break up those plans into bite sized lumps so you don't choke on them.

[Marek1 in reply to PMRpro]

Thank you for your advice x

[herdysheep in reply to PMRpro]

Having resisted having an electric blanket for too many years, I amazed that I could have had much better mornings sooner! I have now invested in a heated throw, which is really wonderful for when I come back from shopping or whatever and struggle to warm up. It is also very soothing for costochondritis - a new friend that has taken up residence.

[PMRpro Ambassador in reply to herdysheep]

My daughter has both too - LOVES her throw her MIL gave her for Christmas. So do the cats and dog ... My only complaint is that they didn't have a double blanket with a heated foot area here - I'd have liked that. I have never had much a problem with cold feet and legs in bed until recently.

[herdysheep in reply to PMRpro]

I sometimes feel as though I have turned into a big wimp, but I wouldn't be without them now. The throw will be handy in 'summer' when it should be warmer than it is

[sidra1968]

If it was me, I'd go up to 15 for a few days to nip it and see if that works..but that is just how I would handle it, because I have been lucky and had no side effects other than the moonface. Also, I also bought a house in the wilds..and I must say, one flare came from weeding for sure. Good luck and keep us posted!

[Marek1 in reply to sidra1968]

Thank you x

[SnazzyD in reply to sidra1968]

In my experience ‘light gardening’ could be deadly. Weeding is dreadful because there’s always just one more bit, then I’ll be done….