This is my 4th ( self diagnosed tapering) attempt to get down to 7mg and each time I have felt so weak/ill .
However I am only 3 days into it!
Plus this morning I had my 4th covid jab.
Now I’m wondering whether I should see how it goes or increase my dosage by 1 or 5mg?
Thank you once again for your much appreciated advice,
Ann
No help from me, sorry, cuz I’m in the same boat. I’ve had blood work done, it isn’t that. And I know it’s the zone where your adrenals have to catch up but in the past I’ve got down to 5 1/2 with no problem, then I had significant pain, not weakness or feeling ill, so went back up. I’ve been on 7 since my husband got sick a few months ago and am just now trying to reduce using dsns; it isn’t going well. I feel fluey all the time. Let’s see what responses you (and I) get.
Hi Twopies The flu like feeling is so right and a general lethargy. Yet I worry if the blood markers point to normal, I feel I ought to be fighting it.
But how?
I am taking the dog out for up to 1 hour but I do feel knocked out afterwards.
No point in trying to fight it! Just stick with dose you feel okay for the time being….you will be able to reduce when the time is right, and if it’s not time it’s not time! Don’t put extra pressure on yourself.
Thank you again madam ambassador but I can’t get my head round the contradiction between how I feel against my normal bloodsAnd it will be the latter by which the medicos will judge me won’t it😣
Not if they really understand PMR - but unfortunately some are fixated on bloods instead of what they should be considering first, last and always - symptoms!
Have you tried splitting the walk? I found if I went for a walk with a rest at a cafe in the middle I could walk much further (not sure how your dog would view that of course). Or you go to the effort of the preparation to go out twice ...
Just because blood are okay, doesn’t mean it isn’t PMR…..as we know they very often lag behind the symptoms in a flare.
You may have had higher inflammation markers on diagnosis (although up to 20% don’t) - but it could have taken months to get to that level, you just don’t know.
The fluey feeling could well be adrenals struggling, but if you are dealing with a sick husband perhaps you should stay where you are dose-wise for a while…..the extra stress certainly doesn’t aid tapering.
As you are only3 days in it could well be steroid withdrawal rather than a flare - see this link -healthunlocked.com/pmrgcauk...
But as you have just had another vaccine, and you have struggled in the past I would be inclined to see how it goes for another few days -but stop taper, so you remain on previous dose, whatever that might be.
It may well settle, but if it lasts more than 3-4 days you may need to up slightly, but in my opinion it's best not to up Pred "just in case"...
I had my 4th jab 2 weeks ago and about 3 days after started to flare, I have now gone up by 1mg and feel a lot better. Quite upsetting to have to increase but needs must. Hopefully I can start to taper again in a few days
Never try to mix a reduction with a change in circumstances - whether it is stress or a jab (or any sort, not just covid)
What doses are you moving from and to? Are you just going higher dose to lower dose from one day to the next? Are you using a slowed taper approach?
1mg at a time at this level may simply be too much for YOU and so may going from every day one dose to every day the lower dose all at once. At this level, the slower you go, the more likely it is to succeed. But Snazzy said she had a long period of feeling rubbis before the adrenal function woke up - it may just be what you have to do.
Thank again Ms ProI went from 8mg to 7mg
Just over a month ago I was feeling really ill - a raft of symptoms from sensitivity to light, a facial rash, mouth ulcers etc. I was on 8mg then.
It took me 2 weeks to get a GP on the phone, 10 days more to order tests
(C reactive
Plasma viscosity
Rheumatoid factor level) which came back normal with no further action.
The ANCA, Serum anti nuclear antibody and Anti - neutrophil screen came back borderline with no further action
So at the back of my mind is the worry that some day soon someone in the NHS will tell me I should come off pred because the blood tests showed no cause for concern.
The test results came back on the 27th January and no one has contacted me so far.
I’m putting myself under pressure really to try to reduce the dosage with not a small amount of support from forum members,
Hopefully your GP will know that if you have normal blood tests it does not mean that you have not got PMR any more.
They can't just stop your pred - from here it must be reduced slowly to allow adrenal function to return. But you probably need to slow it down - just do 1/2mg at a time and use one of the slowed tapers so you start by just having 1 day at the new lower dose and back at the old dose for a few days before trying the new lower dose again.
You'll find details in the FAQs under Tapering - there is DSNS and DorsetLady's way
Thanks againI just took an extra 1mg equating to my 8mg and I’m already starting to feel and function better.
Understanding the adrenals is quite a challenge
Maybe have a look through this link - gives more links to all things adrenals - healthunlocked.com/pmrgcauk...
Good to hear the 8mg has helped.
I’m putting it down to brain fog - the plan is to have alternate days 8:7mg How long for do you think to taper to 7:6?
Here are a couple of slow tapering plans - the lengths vary between 4 to 7 weeks approx. Have a look at them both and see if either of them appeal -
As for how long it takes - that’s up to you really - I can’t tell you, but all I can say is, don’t rush it. I know it’s frustrating, but PMR has its own agenda - and it doesn’t take kindly to being pushed!
healthunlocked.com/pmrgcauk...
healthunlocked.com/pmrgcauk...
At your dose you are at, a slower taper will help your PMR and your adrenals to nudge into life.
Thanks againI’ve photographed the slower plan
🤞
Good luck 🤞
A secondary observation also is a repeat of the question I asked a little while ago - Is it possible for the pred to mask the underlying symptoms?
Yes this possible, particularly at higher doses, although at lower doses it is more unlikely.
In which case should I just reduce and try to ignore the side effects? I think I know how a junkie feels now!
Going back to previous threads I am not likely to hear from our GP - who seems to have gone into hiding.
See if painkillers help. If they do it is quite likely it is something else other than PMR. We do tend to blame PMR and steroids for everything!
My GP is just plain lazy. I have not seen him face to face since 2016. When I do talk to him on the phone we just argue about bisphosphonates he wants me to take even though my bone density is good.
What supplements do you take?
What do you do to get yourself going?
Careful what you do when feeling well
Diet and autoimmune - What do you think?
What do you say when people ask 'How are you?'
