Relapse plus UTI

[Tiredcat]

I took my 'last' quarter mg of prednisone in April this year, after four years of PMR.

In the months since then have been plagued with constant colds etc (now over all that, finally got antibiotics to knock it all on the head), but that seems to have been very common in this country ( NZ) after Covid, and all the isolation etc. Our immunity is very low.

Early this month I started experiencing some PMR symptoms, had actually ignored tiny warnings earlier. On 8 September I started on 3mg of Pred, as I had upper arm pain and wobbly slow walking, always a part of PMR for me. The pain went immediately and after a few days I felt good. By 14 Sept I tried dropping to 2mg, but didnt feel good so went back to 3mg by midmorning. Tried again 20 Sept, same result. Simply tired and shaky. But by 22 Sept, walking very wobbly and pelvic girdle pain, another PMR indicator for me.

Saturday 23 September a UTI blew up. Went to the hospital and got antibiotics. By the next day, a lot better. But walking quite bad, weak and wobbly, went up to 5mg.

Only now have I remembered Sick Day Rules. The UTI is still not completely gone, but is it too late to go up further with the prednisone? Or do I need a higher dose for the PMR anyway, not just the infection?

Sorry this is long winded, am actually feeling a bit foggy in the head. Quite hard to think clearly and articulate what I want to know.

[DorsetLady PMRGCAuk volunteer]

You probably don’t need to go any higher on Pred, but probably do need a bit longer on it… treating it like a flare. But your PMR may well have been complaining anyway with or without the UTI - so if it was, get it back under control, and then drop back down to 1mg.

Usual advice for flare in this link -

healthunlocked.com/pmrgcauk...

Hope you soon feel better…

[Tiredcat in reply to DorsetLady]

Thank you so much for your reply DL. A voice of sanity! I have felt so uncertain.

[PMRpro Ambassador]

If abx sorted your "colds", they weren't "colds", there must have been bacteria involved and colds are viral. The low immunity is a worldwide phenomenon - showing how effective masks and handwashing actually are at preventing transmission of infections! The Asians aren't so daft using masks all the time.

UTIs at our age really can knock you for six. So take it seriously.

I would consider trying 5mg for a few days and then drop back to 3mg and work from there. I doubt you will need more in the long run but you h\will ave stored up some inflammation that needs clearing out.

It really isn't uncommon to find that 1mg or even 1/2mg keeps it all under control but at zero the dripping tap slowly fills the bucket and eventually overflows.

[Tiredcat in reply to PMRpro]

Thank you PMRpro, I apreciate your clear thinking.

[ab58sf]

So sorry you have been sick and hospitalized. I have too! I had an episode of afib. Very scary, but all the time in the hospital, (six days) I had NO pmr pain! I had no exercise, ate no bread, nothing with sugar, of course low salt, & no caffeine. I kept taking my prednisone at 2mgs in the morning and 1mg at night. That helps with the early morning pain.

Regarding taper, I never go more than 1/2 mg down each time I try to taper. When sick with a cold or a virus, I do increase, usually to 5mgs. Then back down as I get better. Hope this helps.

Anyone had any heart issues while on prednisone log-term? I have been on it 1 1/2 years.

[PMRpro Ambassador in reply to ab58sf]

I have atrial fibrillation - but nothing to do with pred, it was almost certainly caused by the autoimmune part of PMR which damaged the sinus node. I had had PMR symptoms for 5 years before starting pred and the a/f was there long before that.

[ab58sf in reply to PMRpro]

Thank you so much! What are you taking for afib?

[PMRpro Ambassador in reply to ab58sf]

I was well managed on propafenone for several years and then it stopped working, After some months I was switched to Flecainide which was amazing at first but the a/f is back again all of a sudden. I've been waiting for an ablation since the end of April, August/September was suggested as a likely date, didn't happen! But if it doesn't settle in the next week or two - I'm away meeting my daughter in Germany - I shall start asking for an urgent appointment to try and push the ablation.

Otherwise I am on bisoprolol and Pradaxa as anticoagulant.

[ab58sf in reply to PMRpro]

Thank you. I so appreciate your transparency. I am discouraged, but it is what it is. I hate taking meds. In addition to ELIQUIS, they put me on Cardizem, but I did not adapt to that well. It was to slow my heart rate, but mine is naturally fairly low. Dropped too low at night. So discontinued that. Praying a lot! Will pray your trip works out.

[PMRpro Ambassador in reply to ab58sf]

No-one LIKES taking meds but they are there to improve quality of life and once they find the right one, they usually do. My husband was on cardizem - but it is by no means the only option.