I don't think I have PMR anymore

[Sumdial]

Since the beginning of June,I have not had the slightest twinge of PMR, which makes me think it has gone away. However I am on 5mgs of Prednisolone and am rather nervous of reducing it (don't know why I am!). Since June I have had very bad diverticulitis, vaginal thrush and a terrible allergy that caused spots all over my body and my face to swell up and go bright red. I think these must be something to do with low immunity caused by prednisolone. My doctors are pretty useless. Feel rather stuck. I want to try the very slow reducing that was recommended here but am rather nervous in case it all goes wrong.

[SheffieldJane]

I hope you are right about PMR going into remission. It sounds like you have suffered a lot of unwelcome side effects and would benefit from reducing Pred further, as long as you are not compromising your current position with PMR. The tapering programmes in FAQs on here really do work. Invest in a good pill cutter and reduce carefully and slowly by half mg drops. Stopping to take stock after each little drop. Good luck!

[Sumdial in reply to SheffieldJane]

Thank you for your advice about reducing by half mg. I expect I can get a pill cutter from a pharmacy. Great help thank you.

[Loyd in reply to Sumdial]

I’m in identical situation to you and am on 5 and a quarter mg I go down to 5mg next week for 2 weeks and if all well plan to try 4 and three quarters mg. I have a pill cutter and cut a 1mg in half then half again to make quarters. I had a terrible flair over a year ago and terrified it would happen again. So far so good. 🤞🤞Good luck - hope it works.

[Sumdial in reply to Loyd]

Thank you so much. Reducing very very slowly seems to be the way forward.

[SnazzyD]

That would be great if you are. 5mg is a small dose regards side effects and immunosuppression but actually can be quite enough to keep a low level of PMR at bay. Remission can only really be assumed after you’re off Pred and for a wee while after that. However, let’s celebrate you getting this far because that’s really good. Before blaming Pred for these ills, was your diverticulitis treated with antibiotics? If so, the thrush was probably caused by that. Also, it seems common for people to get a rise in allergy type symptoms at lower doses and for me it wore off eventually. I wonder if it is the histamine receptors getting going again after all that has been suppressed by the Pred rather than the Pred itself now causing allergies. It all needs to settle. Remember your body has been coping with constant change and keeps having to reset to a new normal.

It’s always nerve wracking reducing as the numbers get smaller an smaller, so do it slowly. I reduced by 0.5mg steps but introducing the new dose in slowly. It took a minimum of 6 weeks to do and some reductions at lower levels I took 12-14 weeks. My last 1mg I did over a year.

[Sumdial in reply to SnazzyD]

Thank you so much. Brilliant help. Much better than any of my doctors! It really puts it all in perspective. As you say my poor body has had a lot to cope with plus I am 77!! Thaks again.

[Sophiestree in reply to SnazzyD]

Great reply SnazzyD

[DorsetLady PMRGCAuk volunteer]

Well you won’t know 100% until you get to zero and no symptoms resurface….but meanwhile as suggested a slow taper at 0.5mg a time and hope for the best….

[Sumdial in reply to DorsetLady]

Thank you will reduce as you say

[DorsetLady PMRGCAuk volunteer]

Here’s one taper - healthunlocked.com/pmrgcauk...

And other -

healthunlocked.com/pmrgcauk...

Pill cutters available at pharmacy, online and some bigger supermarkets….or it you have both 1mg and 2.5mg you can mix and match

[Sumdial in reply to DorsetLady]

Thank you very much for your advice.

[HeronNS]

I'm a big fan of probiotic foods, which include the usual yoghurt but also kefir, fermented vegetables (sauerkraut themost familiar but lots of veggies can be fermented, I buy mine at the farmers' market near me). These help rebalance the gut, especially if it has been affected by the use of antibiotics. If you aren't already, you may wish to limit your consumption of all forms of sugar.

As your symptoms have been well controlled for a while you should feel safe to taper. If you go slowly, as the others said, you will be able to stop tapering if you need to, but the benefit may well be that you'll be at a new, lower, maintenance dose. 🍀

[Sumdial in reply to HeronNS]

Thank you,. I take acidophilus very day which helps I think and have always eaten yogurt every day.

[Francesbarbara]

I landed in A&E last week with a shocking fiery rash with swelling that came on suddenly over an hour. Given antihistamine. Seemed to have settled again. I'm on 4mg/3.5mg pred.

[SnazzyD in reply to Francesbarbara]

Yes, I kept getting hives, hay fever, food upsets, eczema for no apparent reason. It did settle. I just took a daily antihistamine if it was bad and made my diet less upsetting. I suddenly became averse to any cabbage related veg after eating then once or twice daily for decades. Shame, I loved sauerkraut. I know some have to go on the low histamine diet if it’s too severe which is very restrictive but I couldn’t face it, but then I clearly wasn’t bad enough to make it seem like a good idea. I’d say it took a year for me and summer was the worst period for everything for me.

[Sumdial in reply to SnazzyD]

I have stopped eating all summer fruits eg strawberries etc and tomatoes and hope that will stop the allergic reaction

[Sumdial in reply to Francesbarbara]

When I started on this journey with prednisolone no doctor or consultant gave me the slightest hint of what would happen to my poor body. Reading all your comments, everyone seems to be in the same boat. I daren’t stop by fexofenadine antihistamine in case the swelling etc comes back.

[Suffererc]

I thought the same too after my GP said she didn’t think I had PMR. I rushed a taper and guess what I had a flare. So beware. Keep going steadily and you most prob get off steroids.