Fatigue and holidays

[oscarandchloe]

I've had GCA and PMR, diagnosed swiftly in 219, treated well by both an excellent service from Oxford's Rheumatology dept. and an understanding GP. I'm really sure that both conditions have been in remission for the past 18 months. I have tapered very slowly using DSNS plan, stopping on a comfortable 5 mg Pred for 2 years while I dealt with two hip replacements. I 'm now on 2 mg and manage day to day with regular short walks, family etc. Try to exercise and get back some muscle strength. However, just had a lovely birthday treat of 3 days away in a beautiful country hotel, great food, a modest 3 mile country walk, some antique shop visiting, lunch out etc. and I 'm wiped out. I know it 's the adrenals, but I' m worried that I might be stuck with this lack of oomph. I usually pace myself, take afternoon naps and follow a full day with a quiet one. Similar wipeouts seem to need up to a week to recover from. I' reluctant to reduce Pred dose any further I until I seem able to cope with more than a very reduced life style. How much challenging should I do? At my last GP check up I was asked about how the tapering was going and I said very slowly, she said 'Well, some people never get off it.' True, but I don't want it to be me.

[oscarandchloe]

2019! Not a Roman hanging on ancient Briton.

[PMRpro Ambassador in reply to oscarandchloe]

😂

[herdysheep in reply to oscarandchloe]

🤣🤣 - but I bet it has felt like it in early days!

[Louisa1840 in reply to oscarandchloe]

Oh SHAME I thought you were some sort of super human with the key to eternal life...!!!

[HeronNS]

Have you had, at the least, a morning cortisol test? That would give you some idea how well your adrenal glands are working in the presence of your currently very low dose of pred. Certainly it would be wise not to taper further until you are sure your body will be picking up the slack.

[PMRpro Ambassador]

There is really only one way: PATIENTLY.

If you compare with a normal 3 days and your Away 3 days - I'm sure you can see WHY you feel so wiped out. Even a fun 3 days is highly stressful - and the adrenals don't provide the boost you would normally eperience. You are still on a dose that in some people is enough to suppress adrenal function so I would say you have probably done pretty well.

[DorsetLady PMRGCAuk volunteer]

I'm really sure that both conditions have been in remission for the past 18 months.

Well you can’t be really sure until off Pred completely for a few months and no return of symptoms.

Even for only 3 days away, it’s out of normal routine and in a different environment - so it has more of an impact that you realise.

There is no reason why you are always going to be like this - but as SnazzyD will testify it can take a lot longer [even when on no Pred] for your adrenals to be back to full function - a fact often misunderstood by doctors as well as patients.

As PMRpro has said, patience, and patience and even more patience is required..

[SnazzyD]

2mg is what I was on when I had an adrenal flop during a lovely lazy weekend looking round some gardens on a calm sunny day. It was quite embarrassing because the staff at the National Trust house had to send out a buggy to collect me. I took extra Pred and spent the rest of the day and the next on the hotel bed disappointed. After that holidays were always a minefield and I had to plan accordingly.

My adrenals took absolutely ages to get back but in order to avoid having to keep upping the dose to feel better pared back my life to feeling like a shadow and it wasn’t fun. I got there in the end. I would say don’t give up yet but it can take a long time. In my case I took a year to go from 1 to zero then 18 months with no Pred to feel confident. We are all different though.

[Bedwell in reply to SnazzyD]

That’s comforting. A year to get from 1 to zero?! So on 1now. Did you do DL way of reducing?! Or another way. Would be interested as I’ve just done the wrong thing and couldn’t function at all! As I have posted!!! And been helped by pmr pro

[SnazzyD in reply to Bedwell]

I did a DL reduction hybrid which was adding in the new dose as I felt was right at the time. A 0.5mg drop could take from 8-14 weeks from 5mg.

[Gimme]

The trick with managing holidays is to make sure that you build in adequate rest. When you are off enjoying yourself, it is easy to get wrapped up in the moment, and forget that you need to take care of yourself. I had a 2 week trip to Mexico in November and beforehand, I had studied the itinerary carefully to work out when I would have opportunities to take breaks. If I had walked 3 miles, like you did, I would definitely have needed a nap after. Usually I am restored for another couple of hours, if I can sleep in the day. I will be going away next week for a week and I am hoping to walk along the beach in the mornings and then will take an afternoon nap. It's inconvenient at this time of year when the days are so short, but I would rather that than not go at all. I plan long drives the same way, if I am driving. I'll pull over in a service station half way and take a short nap for 20 minutes or so. That's usually enough for me to keep going.

[CathyMeg in reply to Gimme]

That is very helpful advice. Am on the last week of a three week holiday in NZ and have just collapsed with metapneumovirus again. I had it a couple of months before leaving. Easy to forget that driving in unfamiliar territory is also taxing. Have not been having any of my usual naps and then BOOM. Have had to take 10mgs this morning. Arrrggghhh. Was on 5.5.

Must be a slow learner. Last trip away I tried to reduce while away. Was feeling so happy. Had a bit of an adrenal crisis and then got sick too.

Will take your advice next time planning.

🙏

[DorsetLady PMRGCAuk volunteer in reply to CathyMeg]

Having just got back from NZ would say it’s one of the least taxing places in the world to drive - unless you’re going over/through the southern alps! 😊

Hope you soon feel better…

[CathyMeg in reply to DorsetLady]

Thanks DL. Yes agree is great to be driving on the “ correct “ side of the road although speaking as an Aussie the roads can be incredibly narrow and windy. One magnificent view after another. 😊

[DorsetLady PMRGCAuk volunteer in reply to CathyMeg]

Sine certainly are … but others probably are like your Aussie ones long, straight and wide.. mainly on the Canterbury plains….

[CathyMeg in reply to DorsetLady]

Ahhh yes. Didn’t get there this time. Mainly in north island. Do you have family here? I notice you have done that long flight a few times. Such a special country. Can see why people stay.

[DorsetLady PMRGCAuk volunteer in reply to CathyMeg]

Yes I do my daughter & family emigrated from UK in 2007 -love it there. As do I -they live on SI -farming. hence the Canterbury Plains comment…