Stuck at 5, but should I increase ..adrenals or flare?

[Temoral]

Hi Everyone. Reached 4 on DSNS 5 week taper. Symptoms arrived including head and ears buzzing, nausea, dizziness, extreme fatigue and brain fog, and hot flushes. GP advised going to 4.5 and staying until phone appt. with Rheumy next Monday. Made decision to go to 5mg as symptoms persisted...Great for a few days, then headaches returned intermittently. So, do I need to raise again...feeling miserable...if I phone Rheumy secretary, no reply except to say an email has been sent. Any advice welcome...thanks in advance.

[SnazzyD]

well it could be your adrenal function being low. May I ask what you’ve been doing in the day during this episode?

[Temoral in reply to SnazzyD]

Thanks SnazzyD....very relaxing lunch with friends at their house...symptoms started on return. On other occasions, day out at Chester , and another on completely relaxed day....so not always due to stress or exertion....do you think?

[SnazzyD in reply to Temoral]

That sounds a lot. There’s no way I could have done all that. Just because it is enjoyable doesn’t mean it isn’t stressful for the body. You might need to slow down things a bit in order to get through these low doses until your adrenal function peps up. Perhaps one thing instead of a string of events. Going back up won’t help this phase unfortunately.

[Temoral in reply to SnazzyD]

Thanks...Good to be reminded that stress means different things in different contexts. Too busy is a hangover from my former life I suppose. I didn't do all these things in the same week, but I have definitely paced myself today, with so far, good results.

[DorsetLady PMRGCAuk volunteer]

Would agree with SnazzyD that it does sound very adrenal related- apart from the headaches and ears, which aren’t typically signs of adrenal insufficiency…

Did you mention those symptom to GP or Rheumy’s secretary? ..and who is the email being forward to?

I think I might be inclined to raise by another couple of mgs and see if that makes any difference….if it doesn’t then you can always drop back down before you speak to Rheumy

[Temoral in reply to DorsetLady]

Thanks for prompt reply DL...secretary emails Rheumy and replies to tell me email has been sent, but no reply from Rheumy himself. I may try to phone again before appt. I did list all the symptoms to GP and she said that this is very similar to what happened at 9 mg and I had to stay on 9 for a few weeks until things settled., which did work. She said she would write to Rheumy dept to point out this pattern...just over a week ago. Am I expecting too much ? Or not pushing enough?

[DorsetLady PMRGCAuk volunteer in reply to Temoral]

If you have a return of headaches then it needs to be taken seriously -by all. From your profile it looks as if your Rheumy has been pushing you to reduce too quickly - and you may need to return to 9mg if it is GCA as you did previously. Was that on GP of Rheumy advice? GP sounds better option -so maybe speak to her again.

But also see you have been struggling with adrenals for some time as well..so it’s a bit difficult to separate the 2 issues …

[PMRpro Ambassador]

"very relaxing lunch with friends at their house"

Even the enjoyable things are stressful! Especially a day out to Chester. ANd while it was relaxing - what did you do on that relaxing day - or possibly more relevant, the day before?

The trouble is, by raising it too far, all you do is postpone the evil day.

[Temoral in reply to PMRpro]

Yes PMRpro.....that's the ever present dilemma for us all isn't it. Rheumy wanted me to be down to 3 by next week on his reduction schedule...but he isn't living my life is he? I realise now that stress doesn't always show on the day you have perhaps overdone things....thanks.

[PMRpro Ambassador in reply to Temoral]

Did he tell the GCA that that is what he expects it to do? It doesn't work like that ...

[Temoral in reply to PMRpro]

Indeed..

[Ridge in reply to Temoral]

I think the word ‘stress’ is a misnomer in our situation. I think it should be changed to ‘busy’! ‘Stress’ to me meant doing something under pressure and not enjoying it. Whereas with adrenals and PMR just being ‘busy’ however much you enjoy yourself can prove to be too much!!

[PMRpro Ambassador in reply to Ridge]

I use it in the medical sense mostly - things that stress the immune system more often than not.

[Ridge in reply to PMRpro]

Yes, of course!

[Temoral in reply to Ridge]

Yes...so true. 👍

[Francesbarbara in reply to Ridge]

I am on 2mg and get very fatigued after any 'different' event. Just any sort of appointment - like dentist, hospital, hairdresser, seeing friends, going to a concert etc results in me being totally flat for a couple of hours afterwards. I hope that as the adrenals continue to be more active, it may pass, but I agree that it doesn't have to be a stressful thing to bring on this feeling of weakness & exhaustion.

[Temoral in reply to Francesbarbara]

Well done to you managing your reduction to 2mg. Take care

[Broseley]

If you're near Chester are you seeing the rheumatologist at Arrowe Park or Countess of Chester? The former is much better (though not brilliant). I go to AP and hubby goes to CofC. AP have a rheumatology helpline which they don't tell you about! PM me if you want the number. I don't know if CofC have one.

Either way, try ringing the secretary early on a Tuesday. They tend to be there then.

[Temoral in reply to Broseley]

We were there for the day...and live in the Midlands...unfortunately good Rheumies are hard to come by.....😉

[Bluey-1 in reply to Temoral]

Then that is really tiring. We live in the Midlands and Chester was my home town. Even in my former fitter life a day trip was too much. I have just returned from a wonderful relaxing week abroad with friends but I am very fatigued today and plan a few days complete rest when I’ll savour the lovely time we had.

[Temoral in reply to Bluey-1]

Sounds lovely

[PMRnewbie2017]

My go to way of differentiating whether it's Adrenals or a flare is to try a pain killer. If Paracetamol or similar doesn't help then it's probably PMR related. Also there is a lot of pollen around at this time of year. I have never had classical hayfever but I have realised that my muzzy head and low grade on and off headache was due to sinus congestion. Antihistamines didn't clear it but a couple of doses of pseudoephedrine (Sudafed OTC uk) did. You shouldn't take Sudafed if you have high blood pressure but a couple of doses........

I do wish Rheumies would stop pushing for a speedy reduction at the lower end of the Pred scale. The pressure they apply alone is enough to cause a flare!

[Temoral in reply to PMRnewbie2017]

Thanks for the hay fever reminder...and tip...we live near a woodland, and there is a lot of tree pollen around this week! Oh how I wish the Rheumies would take the pressure off...that in itself creates stress. Take care

[Pippah45]

I don't have hay fever in the "normal" sense but Tree Pollen gives me a muzzy head and itchy eyes. I too have just got to 5 pred and it has been a long journey, luckily Rheumy discharged me to GP and GP leaves me to my own devices! I was struggling to reduce from 7 and found the only way it worked was by reducing .25 at a time. I am not really looking forward to the next phase but at least I don't have anyone hassling me!

[Temoral in reply to Pippah45]

That's good to hear...when I taper again after resting at the 5 mark, I will try .25...thanks.

[Pippah45]

We are all so different. I was stuck on 7 until I went with .25 reductions. I thought I would be at 7 forever! A pill cutter is useful.

[Temoral in reply to Pippah45]

I was stuck on 9 for a couple of months...we can get there...wishing you strength and happiness on the way. 👍