Adrenal struggling?

[vangelis8]

Hi everyone on this brilliant site.I have had pmr for 2 yrs now ,reducing 8.5 to 8mg using Dorset lady 5 week plan , In 2nd week started feeling very tired and a little dizzy and but no pmr pain.so not sure what to do as it's 6 weeks now and I haven't felt brave enough to go to 8mg.

[SheffieldJane]

The trouble is, in order to get passed this point you have to do a slow taper of half mgs. A cortisol test will not confirm your suspicions, that it is actually your Adrenals, your dose is too high.. Unless you think that you are ill, I would be inclined to push through. The tiredness is pretty constant for me ( dealt with by a regular after lunch nap) the dizziness is intermittent. I hover between 6 mgs and 7 mgs. Lovely that you have no PMR pain. A signal that you are doing the right thing. I get (arthritic?) pain that clouds the picture somewhat, usually in damp weather. This sunny weather is transformative.

[vangelis8 in reply to SheffieldJane]

Thanks very much for your prompt reply, I will push on with it.I have to rest every afternoon too.I have osteoarthritis in my hands which only bothers me now and again.Thank goodness I found this site.thanks very much.

[Viv54 in reply to SheffieldJane]

SNAP !🌷

[Longtimer in reply to SheffieldJane]

I'm at 6.5mg.....will sit there for a couple of weeks...one day I think I feel ok, then when it sweeps over me....so unpredictable.....Had full MOT this week, early morning cortisol test, yesterday Dexa scan, I am to see how much worse the Osteoporosis is!....operator told me that's what's wrong with the queen now......we live and learn.

OA is awful pain in my spine, but as you say sunny weather is heartening, especially in the garden...as the song goes, it's a good year for the roses...

[SheffieldJane in reply to Longtimer]

I wonder if she is on Alendronic Acid?

[Longtimer in reply to SheffieldJane]

Yes, I wonder....but then she is 96, so doing very well...

[DorsetLady PMRGCAuk volunteer]

Continue with slow taper, it will help the adrenals as well - tiredness and dizziness is sign of adrenals struggling..so it just a matter of plodding along slowly.— and being patient!

Also have a look at this link -explains in more detail -

healthunlocked.com/pmrgcauk...

[vangelis8 in reply to DorsetLady]

Thanks very much Dorset Lady will continue with a slow taper.I have read about adrenal link already.I know to take it more slowly now,thanks to this site and all you lovely people and your experience of pmr/gca.

[Maudie19 in reply to DorsetLady]

I'm at 8.5 going down to 8 slow taper. Saw GP this morning as my cystitis hasn't cleared up so now another 7 days of antibiotics. But she did say that when I get over this, and the bloods she took today are OK, then she would like me to try going down to 7mg. Also, due to taking my preds at bedtime I am having insomnia, so she wants me change to am. Wondered what your thoughts are on this?

[PMRpro Ambassador in reply to Maudie19]

Is it a proven bacterial infection? Do you take calcium supplements?

[Maudie19 in reply to PMRpro]

Well the sample has been sent off. GP said it had white cells, blood and something else I can't remember. I have taken Adcal twice a day since starting with OMR

[PMRpro Ambassador in reply to Maudie19]

Nitrites - usually (but not always) a sign there are bacteria present.

Then your cystitis very likely IS a bacterial infection but many of us find that calcium supplements lead to "grit" forming in the urine and that causes irritation of the bladder and urethra (the connection to the outside) which causes pain, especially when passing water.

[Maudie19 in reply to PMRpro]

Thanks, I will keep that in mind. But if you stop Adcal what else can they give you?

[PMRpro Ambassador in reply to Maudie19]

VitD3 plus good calcium containing diet - I haven't taken calcium as a supplement for several years - it caused too much bladder grief. There are other calcium supplements that are less of a problem. I think vit D is more important - i take 4000 IU a day summer and winter and I live in a region where theoretically you can make vit D in skin all year round,

Other people have had different problems with calcium - gall stones and psuedo gout where you get calcium crystals in joints.

[DorsetLady PMRGCAuk volunteer in reply to Maudie19]

You can try 7mg as she suggests, but you won’t know until you try….

As for changing times, might help with sleep - I never took my tablets other than in the morning,so can’t really comment on that.

Only thing is you might find that you are a bit stiffer in the mornings -so maybe try the split dose -2/3rd am, 1/3rd before bed if that happens. But again, you won’t know until you try.

But don’t try and change timings and reduce at same time…try one thing first and see if it works before changing the other.

Does that make sense? And good luck…

[Maudie19 in reply to DorsetLady]

Yes it does. Thank you. I sometimes feel like the walking dead as I am so tired and fatigued.

[Maudie19 in reply to DorsetLady]

I didn't mention that I have most days a croaky throat. GP looked but couldn't see anything. Could this be a side effect of Preds?

[DorsetLady PMRGCAuk volunteer in reply to Maudie19]

Not particularly common I don’t think -but lots of meds have weird side effects. Are you on anything else -and how long have you had it?

[Maudie19 in reply to DorsetLady]

About a week I did a Covid test but negative. Coincided with my cystitis and treatment, but have had Trimethoptim before and don't know remember any croaky voice.

[PMRpro Ambassador in reply to Maudie19]

It was an effect of PMR for me. I did have a few other signs of GCA fleetingly but they went away. The sore throat croaky voice didn't.

[Maudie19 in reply to PMRpro]

So you still have it?

[PMRpro Ambassador in reply to Maudie19]

Has never really gone away. I had to stop singing and I still can't guarantee the right note comes out! I also get a sore throat if I talk longer than usual - on a phone/video call for example or need to talk loudly to be heard over noise or talking to someone hard of hearing. The combination of speaking louder and saying it 3 time for OH was something of a trial!

[Maudie19 in reply to PMRpro]

That is disappointing. I am very similar in what is happening to you. Have you found anything that helps?

[PMRpro Ambassador in reply to Maudie19]

I just tend to ignore it!!!

[SnazzyD]

It may well be. I needed longer than 5 weeks to sneak a new dose in 0.5mg drops. The lower I got the slower it got. I also found it important to tailor my life around low adrenal function in order to stay half upright so that my body was consistently being told the dose was low so it had to start making its own cortisol. The idea of slowing my life down was to avoid making demands for cortisol by too much that I got an adrenal crisis necessitating a rescue increase in dose which can be a step backwards if it’s more than a one off. It felt wrong to be creeping about even more than when I was above 10mg but unfortunately for some that’s the reality.

[vangelis8 in reply to SnazzyD]

Thanks for your reply SnazzyD.Yes I have learnt the hard way about trying to do too much. I don't anymore.i have learnt to say no. I pace myself. I rest in the afternoon.

[SnazzyD in reply to vangelis8]

Good! I had to reintroduce a proper sleep every afternoon. It comes hard if you’ve already pared back your life because of PMR/Pred and then to have to do it more can take the biscuit a bit!

[PMRpro Ambassador]

Some people get to the adrenal insufficiency realm earlier than others and it is something you have to get through at some point. The only way is to stick it out unfortunately.

However - be aware, if you are under stress of any sort and feel really unwell with the dizziness or become confused don't hesitate to call 999 and explain. If you live with someone make sure they are aware. It is unlikely - but better to be prepared.

[vangelis8 in reply to PMRpro]

Thanks for the info Pmr pro. The information i get from all you lovely people is priceless.as I live on my own I'd be lost without you.

[PMRpro Ambassador in reply to vangelis8]

So don't delay if you feel unwell and maybe write a note to post on the fridge (very visibly) so anyone coming in can see the situation. I live alone too now - no family handy and no neighbours around in the daytime. Seriously debating a "works anywhere" alarm.

[vangelis8 in reply to PMRpro]

Thanks again Pmr pro.I will take care i dont want an adrenal crisis.I have an alarm in my flat.plus my daughter lives nearby.

[PMRpro Ambassador in reply to vangelis8]

Excellent!

[MiloCollie]

I’m at 6mg and have been for 5 weeks. Sometimes I have a nap. The other day I slept from 1430 to 1800!! Must have needed it as they say. Just listen to your body. Keep going you’re doing great!

[vangelis8 in reply to MiloCollie]

Thanks milocollie, much appreciated advice from all you lovely people and all the best to you.

[Longtimer in reply to MiloCollie]

I envy you and others that can nap in the day....however tired I am I just can't go off to sleep, even though so exhausted on bad days I feel like I've been drugged!.....

[SheffieldJane in reply to Longtimer]

Audio books do the trick for me. I have yet to complete one. 😴

[Longtimer in reply to SheffieldJane]

I used to listen to them years ago, maybe I should give them another try....thanks...

[Miserere in reply to SheffieldJane]

I love audio books - can't sleep without them. Switches the brain off and I can listen to them over and over again - I only ever hear a max of about a third of a story at a time.

[SheffieldJane in reply to Miserere]

Same! 😌

[Rymer]

I got as low as 7.5 on the 5 week taper last year and then had a flare so I backtracked a bit and then went on the 7 week taper and and I am now at 7.5 transitioning to 7 and I have found this slower taper much less prone to issues. I usually stay at the 'lower dose' once I have fully transitioned for a week or two depending on how I am feeling just to stablise it (just in case) and then carry on tapering. I hope I don't eat my words but so far this slower taper seems to work for me and perhaps you could try it.

[vangelis8 in reply to Rymer]

Hi Tyler, thanks for that info, is that the dsns taper?

[DorsetLady PMRGCAuk volunteer in reply to vangelis8]

Variaton on a theme - healthunlocked.com/pmrgcauk...

[vangelis8 in reply to DorsetLady]

Thank you Dorset lady.I think I will start again on this taper from 8.5 to 8 and do the 7 week taper.

[DorsetLady PMRGCAuk volunteer in reply to vangelis8]

Good luck..

[vangelis8 in reply to DorsetLady]

Thank you Dorset lady. I appreciate all replies from you and everyone else, dont know what I'd do without this brilliant site.

[DorsetLady PMRGCAuk volunteer in reply to vangelis8]

As often said, it's why we are here...any issues with taper just contact...

[Rymer]

Yes - it is the wonderful 'Dorset Lady's' slower taper plan