Is feeling lousy a good or bad sign?

[Golf-1]

I have been back at the 6.5 - 6.0mg Pred tapering for 4 weeks, I am continuously tired and easily out of breath, although I am still able to walk several miles, into town on Friday and round the golf course on Saturday. It is a bit of a struggle but I am not prepared to give in to this lousy condition.

Yesterday my whole body felt a little strange without being able to pinpoint what it was; today the same, with the addition of lightheadedness and a few aches where I do not normally have them such as rib cage and knee.

Is this lousy feeling to be expected when the adrenals start to wake up?

Am I being optopmistic thinking this is the adrenals waking up?

If this is the adreanls waking up, how long is this lousy feeling likely to go on for?

With the additional stress of Christmas and New Year next week, and a trip to Australia mid January, if I continue to feel this lousy I am not going to know whether I am coming or going, or even which planet I am on for the next few months.

Is this lousy feeling a sign that things are getting better with my PMR and I have to put up with it? or a sign that things are about to go bad again?

[SnazzyD]

When your adrenals wake up you don’t give life a second thought. It’s when they are not producing the cortisol you need that you get these horrible feelings. It takes as long as it takes for the body to get back into gear by holding the Pred dose as this level that is not quite enough. Putting the dose up to feel better just puts off the evil moment, but one needs to learn when the body is in crisis where the cortisol level really is too low. What you mustn’t do is push through, if you feel wobbly, stop and rest. Have you read about adrenal glands in the FAQ’s on this page?

[SheffieldJane]

I would want my doctor to check this out, just in case it had any cardiac implications. You are on a high enough dose of Pred to have most, if not all your cortisol needs to be met. I would especially want the all clear before embarking on a big trip. You are an active person and I think unusual feelings coupled with breathlessness need some medical investigation. Adrenal insufficiency is more like sick dizzy feelings and lack of stamina, I believe. I may be wrong and your assessment could be correct but you do need to be cautious. Your taper may simply be a step down too far. I felt unwell at around 5 mgs and it turned out to be LVV/GCA which can happen, to one in 5 PMR sufferers. Best wishes.

[DorsetLady PMRGCAuk volunteer]

Adrenals info -

healthunlocked.com/pmrgcauk...

And we get the message -it’s lousy😊- but they don’t just switch on like Christmas trees lights -they take time, small reductions, slow tapering -and patience ….

[piglette]

In my case I stayed in the same dose for several months while the adrenals fought back!

[PMRpro Ambassador]

Not so much waking up - as NOT wanting to wake up, The only remedy is patience since they don't suddenly snap to attention but adjust slowly over a protracted period of time as the pred dose falls with the reduction. And the slightly too low dose of pred is the only way to encourage them back to function.

[Golf-1]

Thank you once again for your quick and helpful responces to my questions.

I take from your answers that I "may" be at around my optimum level of Pred (6mg) for when things "might" start to change with my adrenals, and I have to put up with this lousy feeling for sometime yet.

I also take it, that I should not rush to go to 5.5mg, especially during the next 2 months which are busy and are bound to be stressful.

I have a Rheumatologist follow up appointment in 3 weeks time, it was him that prescribed the Methotrexate back in March. It will be interesting to see how he feels that I have managed PMR in the past 9 months, and what he thinks when I tell him I am staying on 6mg until end of February at least.

I will also ask him if he has a magic pill to deal with this lousy feeling

I will let you know 🎅

[DorsetLady PMRGCAuk volunteer in reply to Golf-1]

I will also ask him if he has a magic pill to deal with this lousy feeling

There will be a stampede to his door if he has 😊..

and although he may not "like" you staying put for the next couple of months - take it from those of us that have been there, it's a very good idea.

Good luck...

[Golf-1 in reply to DorsetLady]

Thank you

[Grammy80 in reply to Golf-1]

Good for you~! I think we are the best judge of how we feel. As my dosages changed I always went through and 'adjustment' period. As we deny our body the cortisol, I think it does get a little angry but you are doing great. Congrats on the hikes you take~! 'Oh the places you can go....' when those adrenals start full tilt! 💞

[PMRnewbie2017]

Hmm? It is possible that you have Methotrexate side effects. I've just looked at them and you are describing some of the common ones . I realise you have been taking MTX since March but has anything else happened or have you been taking anything which may have caused an alteration in metabolism or increased blood level?

[PMRnewbie2017]

PS. You seem to be doing quite a lot of exercise concentrated over two days. Because of the nature of PMR and how it affects blood flow to muscles perhaps you should ease up a bit, especially as you are approaching what I describe as Tiger Territory!

[Golf-1 in reply to PMRnewbie2017]

I would not normally walk a couple of miles the day before I play golf, but I needed my Chritmas haircut. Not playing golf again until next Thursday and doubt I will be walking far before then, but it is something I will consider in future.

I am slightly confused (or perhaps very confused ? being a Tiger ?) I thought with PMR we needed to keep excercising, which obviously causes increased blood flow, or have I got that all wrong?

I have looked at the side effects of Methotrexate and not sure this is my problem, I have had a good poke and prod at the rib cage and it is more the ribs than the muscles, possibly a cracked rib, it is difficult to be sure as it is one of the floating ones. It has not got any worse and probably a bit better.

[PMRpro Ambassador in reply to Golf-1]

"Tiger territory", or "Here be dragons" - a place where you need more care about actions, You are down to 6mg, the potential beginning of the dose range where you adrenal glands have to take up their role in producing cortisol. That has an influence on how fatigued you may become and pacing becomes even more important.

Yes, exercise IS important, but in moderation, a measure that does vary from person to person and also from time to time in the pred reduction journey. In the exercise world, the rest day for recovery is as important as the exercise day and two notable lots of exercise on consecutive days may make the second day harder than you expect and even too much. PMR and pred-abused muscles are more delicate and more susceptible to developing DOMS - delayed onset muscle soreness. This can be much greater than you are used to for that amount of exercise and also take longer to resolve as the muscles are less able to heal the microtears that forms the training effect, Do too much and it may set you back weeks - if not months, so it pays to tread carefully.

[Golf-1 in reply to PMRpro]

Thank you very much PMRpro, that certainly clarrifies my query. Perhaps as with most problems in life, I have been a bit too flippant with PMR, trying to carry on as normal waiting for it to go away.

I will be a bit more aware, and sensible, in future, and moderate my activities

[DorsetLady PMRGCAuk volunteer in reply to Golf-1]

Good to hear… you don’t have to stop life as you knew it, but you do have to moderate some things.

[PMRpro Ambassador in reply to Golf-1]

It may not take a lot of moderation - you just have to be aware really. Leaves a lot you CAN do - look at it that way and it feels better!

[Golf-1 in reply to PMRpro]

I think spacing activities out rather than limiting them is my natural line of thought, if I have things to do, I tend to want to get them done, so just have to be aware as you say, and pace myself.