Tapered off- but....

[Portobello]

I posted a few weeks ago saying I'd managed to taper off in May, after 4 years. However I was anxious about taking my flu and COVID boosters. Well- I had them both, 2 weeks apart and no PMR flare 😄 BUT two things have happened: the acid reflux which started at the beginning of pred and took a long time to improve with Famotidine (not PPI!), began to return. Worse: I am now dealing with a severe flare up of Lichen Sclerosus, my other auto -immune condition 😩. I am so fed up. What is happening to my body?

[SheffieldJane]

It is obviously reacting to your jabs. I am in a similar position with my early PMR having a new lease of life after 8 years. Not to mention chronic blocked nose and abdominal pains with occasional vomiting and diahorrea all the time. The only new factor is my many Covid jabs. I hope it isn’t long Covid. I feel dreadful - last jab on 4/10.

[Portobello in reply to SheffieldJane]

Thanks for your reply Jane- so sorry you're feeling so rubbish. Yes, I suppose the jabs may have just upset the auto-immune applecart. My son has long COVID so I may be genetically susceptible 😥

[SheffieldJane in reply to Portobello]

Can any thing be done for it? How to they diagnose it. My mobility and strength are pretty poor. Extra Pred is not helping.

[Portobello in reply to SheffieldJane]

Long COVID? There are no diagnostic tools really and very little help. At 44 he was off work for a year😞. He dealt with it by rest, yoga, nutrition and meditation. Today he is better, but not "well". I hope your body stabilises soon. Sometimes I think we try too hard searching for remedies. But when you're desperate it's not easy 🤗

[SheffieldJane in reply to Portobello]

Thank you!

[kushami36 in reply to SheffieldJane]

If you have orthostatic intolerance as one of your symptoms, that can respond to treatment.

You can ask your GP to do an active stand test. This may show your blood pressure or heart rate (or both) reacting abnormally to the physical stresses of standing.

There are non-pharmacological and pharmacological treatments available.

[PMRpro Ambassador]

Whatever you say about pred - sometimes that very low dose is keeping more than one thing at bay!

[yogabonnie]

Hope you feel a lot better soon. and Bravo that the PMR has gone!! that is HUGE!!! and encouraging to me. I needed to hear that. and sorry for the lichen sclerosis. Husband has oral lichen planus in his mouth. crummy crummy diseases. What do you use on it_?

[Portobello in reply to yogabonnie]

The go-to treatment is potent steroid ointment - daily when flaring, once weekly to keep it controlled. Such an uncomfortable condition and unpredictable too. It comes and goes and often takes an age to respond to treatment. And like PMR can take years to diagnose 😞