Flare problems

[lilydunn]

Hi I sought advice recently re a suspected PMR flare after reducing to 2.5mgs pred. 6 weeks previously.I took on board all advice plus GP advice and increased to 3mgs on Mon 7 Aug, then to 7.5 for past 5 days. My problem is I seem to be feeling worse not better. I wondered if others might have experienced a dip before an improvement?

A synacthen test on 4 Aug came back normal.

My CRP marker was 5 the previous week when symptoms began. Perhaps its not PMR?

I went to 'out of hrs' Dr today to rule out other issues ( have had heart issues in past) but nothing suspected. I would like to know if others have had to wait a week before any sign of improvement?

The previous flare I had in Jan was from 2.5 to 2mgs and was resolved after 3 days of increasing to 3mgs.

I feel feverish and generally rotten but have no temperature.

I am reluctant to increase

further I guess because my symptoms feel a bit different to previous times.

I dont think even in the beginning I spent a whole week more or less in bed and cancelled all activities

like I have done this week.

Any suggestions welcome.

[SnazzyD]

Do you mean this started over 6 weeks ago but getting worse over the last week? Going back up to 7.5mg may have tipped you back into sleepy adrenals again.

What are all your symptoms?

[lilydunn in reply to SnazzyD]

No only 1 week ago feeling this bad. Just had usual under the weather symptoms for 1st 5 weeks of reduction to 2.5. Symptoms are feeling hot and flu like, low key ache in shoulders. Like my body wants to shut down. Its not covid I tested.

[SnazzyD in reply to lilydunn]

I know people personally who have not tested positive until anything from day 3 to day 10. I have also tested negative on two occasions when surrounded at close quarters by people testing positive with the same symptoms as me.

[Kendrew in reply to lilydunn]

My husband was testing every day for first 8dys after becoming unwell and on day 9 when he actually was feeling much better he tested positive....and for the next 6dys also. I developed a very bad cold a few months ago and 7dys of testing all proved negative. However, my GP said the LF test kits are not always reliable or accurate and the chances are that I probably did indeed have covid!

[PMRpro Ambassador]

I wouldn't be too confident in Covid tests - my daughter needed to test for 4 days and the batch she used the first 3 days tested negative on day 4, while a new batch opened and done at the same time was positive!

[Suffererc in reply to PMRpro]

Some that are near the expiry date don’t work at all

[piglette]

They reckon standard oral Covid tests can be as low as 73% correct.

I did have a blood test for anti bodies out of interest and it seems I am one big antibody, so high they did not give an actual measurement they just said it was over the level they bothered to measure for!!

[lilydunn]

Uh oh had not reckoned on unreliable tests. It would almost be a relief to know it was covid...

[DorsetLady PMRGCAuk volunteer in reply to lilydunn]

This is an excerpt from a study that came out in December last year-

And note the tests you are taking are LFTs -

The differences between PCR and LFDs

PCR detects the presence of ribonucleic acid (RNA), the genetic material of the virus. LFDs detect the presence of an antigen (a type of protein) produced by the SARS-CoV-2 virus when it is active. PCR testing detects all RNA, even small fragments, but the virus is only infectious when the RNA is intact.

The task for LFDs wasn’t to diagnose whether the individual had the infection, but whether they were infectious – would this person infect others?

[lilydunn]

Wondering how long I should stick with the higher dose ...does it sometimes take up to a week to relieve symptoms?

[PMRpro Ambassador in reply to lilydunn]

It can do, yes

[PMRCanada]

I think you can stay at higher dose for 10-14 days before dropping back to just above the dose that you experienced problems at.

Have you tried Tylenol or Advil?

[lilydunn]

No not tried those.

[Wizards]

I'm going to throw a wrench in all of this.

When I was at 2.5 mg I felt like crap. I had chills no fever. Absolutely exhausted, nothing tasted good.

This was all my adrenal insufficiency and yet you say yours is normal but your still getting help even from 2.5 mg.

I felt like crap for months before it turned around.

It could be covid but it could be just the pains some of us have getting of prednisone.

I've been in more pain of prednisone because years later I have OA in hands and bursitis in hip. Amazing what prednisone hides and 7 yrs has gone by. Lol

[PMRpro Ambassador in reply to Wizards]

Everyone is different - some people feel fine at 2,5, others don't ...

[Wizards in reply to PMRpro]

That's why I said some of us. We all react differently and yet similarities.

[micpenn222]

Some of us get more of the " withdrawal " symptoms from reductions then others. I almost always feel horrible a few days in from any reduction. I've had the low grade fever alternating with feeling cold, and now at the lower doses ( currently at 2.5 mgs ) the bone crushing fatigue, lack of energy, and motivation to do anything other than lie down. Then again I've had a hard time of the side effects from prednisone, with mental side effects most can only imagine, so maybe I am a bad example. The other thing I noticed is that some of my old aches and pains that I had prior to PMR have come back. My old nemesis of knee pain that went away on the higher doses of prednisone are coming back, and the hand numbness from over use also. I would willing tolerate this ( as I did before PMR and prednisone ) but sometimes I despair of ever feeling like my old active self again.

[humlies]

I too had a flare at 2.5mg; my rheumatologist suggested that I increase to 7 mg, then taper fairly quickly to 5; she then suggested that I should stay a month on each dose tapering from 5 to 3. Because I felt so much better I decreased from 5 to 3 mg. within a month, but I now really wish I had done as she suggested, since I am feeling far worse than before the flare. But as so many of us say, we are all different. Interestingly I too had covid in May, but tested negative throughout!

[lilydunn in reply to humlies]

Could I ask how long you stayed on 7mgs and did you feel completely well before tapering to 5mgs? I have not felt much of an improvement after 5 days on 7.5mgs so not sure how to proceed. GP not happy with me increasing to 7.5 and had suggested an increase to 3mgs as this has worked before.

Feel like I am going round in circles here with a suspicion that there is some other cause for me feeling this rough. Otherwise I would have hoped 7.5 might have done the trick by now.

I had planned to try 7.5 for 7 to 10 days then drop to 4mgs as suggested by Dorset Lady but with not much improvement to date, now not sure. Oh dear.

[DorsetLady PMRGCAuk volunteer in reply to lilydunn]

I had planned to try 7.5 for 7 to 10 days then drop to 4mgs as suggested by Dorset Lady but with not much improvement to date, now not sure. Oh dear.

I would say stick to that plan, 5 days may not be enough… and you can stay at that level for 14 days without impacting on returning to lower dose…

[lilydunn in reply to DorsetLady]

Thank you for much valued advice.

[humlies]

I stayed on 7 mg for about 2 weeks then tapered to 5 over about a month. I have to say that I have never felt “completely well” since having PMR, apart from, mysteriously, 2 days last March!