After beginning my reduction from 7mg on April 1, I've now been steady on 4mg for 4 weeks. Things seem to have stabilised:
- the spontaneous episodes of sweating, tachycardia and nausea have reduced, unless I exert myself (when they return)
- my hands have lost their red and shiny appearance
- my lungs are still clear
- my joints are no worse
- but crucially, my fatigue and weakness remains extreme; one short trip to the corner shop is as much as I can manage in a day, and only the most essential household tasks get done
- the daily pattern remains - I struggle to get up in the morning, manage to do the shopping after taking my meds in the morning, become extremely sleepy during the afternoon, rally before bedtime.
- my mood is amazingly good, but I have read nearly all of the internet and what will I do then?
I should be getting a rheumy review in about a month, so I'd be interested to hear if any of this rings a bell or suggests anything to you people. Above all, how do I get functioning again? Ta x
PS wonderful news from my daughter - she got her degree results last week and was awarded a First!
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whisperit
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🙋🏼Yes....this rings a bell...sort of: in that once initial treatment with daily hydroxy & amitrip had been helping for several years, my stamina, resilience & comprehension (this sort of is like the fatigue etc you're experiencing?) remained unacceptibly low. Turned out i needed to add daily low dose pred + moderate dose mycophenolate to my treatment plan. Now i still have to self help/lifestyle manage my signs & symptoms a go go, but these combined therapy meds are helping me feel much better generally....🤷🏼♀️
It is all absolutely typical signs of poor adrenal function - and providing they are capable of doing so they WILL eventually wake up and then you shouldn't feel so fatigued. If they aren't able to function at all - like Coco you may need either daily pred or (better for the purpose as 3x daily dosing mimics more exactly how the adrenal glands work normally) hydrocortisone.
Before you reduce any further you should ask your GP to arrange a synacthen (adrenal function) test which shows whether they are capable of producing cortisol. If they can do so, all well and good, it is a matter of patience and waiting for your body to catch up. If they can't then however long you try they won't and you can cut to the chase and sort out the right way to supplement what function they have - if you haven't already seen one, an endocrinologist is the wo/man for that job.
But it is important - if you ignore poor adrenal function it can make you very very ill if you are subjected to any severe stress and you cannot mount the fight or flight response.
Thanks again, PMRpro. Yes, I am very much of this view - my adrenal function needs a proper review. But as you've heard me say before, none of my medics wants to listen to this suggestion! I'm planning to stay on 4mg for the foreseeable future to see if my adrenals eventually wake up. I wonder if there is anything I can do to encourage them?
At least it is something potentially useful! Hope she gets a decent job or is she wanting to do research? My daughter struggled - she didn't quite get a first but wanted to do immunology and got to the final 10 out of hundreds for the 6 training places for the year. For some reason they decided she was too "young" to be cast adrift in London and told her to apply the next time training places were put up, saying she'd been short-listed. There weren't any. Now she is a paramedic. Science certainly doesn't pay well.
The job situation is certainly tough, so M is going to do a 1 year Masters' in October. She's very keen on applying her learning to practical problems - conservation fieldwork etc. Luckily, she isn't at all motivated by money!!! I imagine paramedic work must be fulfilling - at least, I hope your daughter is finding it so x
Fulfilling yes, but heartbreaking and like a lot of colleagues she has PTSD. And has already had one course of anti-HIV medication as a result of a needle stick injury while treating a drug overdose. It's scarier than a job in a lab (my personal preference )
Urghh. It's a tough thing to pull off. I worked in A&E for years with no difficulties, but coming across a m/c fatality on my way home one day upset me for years. I hope she's had good support. x
Support????? Haha!!! They don't even get downtime for a cup of tea and debriefing after a bad job now. Green-up and off to the next job. She's had a run of bad paediatric jobs - including a possible court appearance coming up for a shaken baby. But she got the nice side last week - delivered a baby for the first time on her own. Been a paramedic for 8 years!
yes, it certainly has. when i worked on the paediatric ward, we had a psychologist who supported the nurses looking after the children who were terminally ill and who died. Brilliant! In my last job - 30 years later - I had to pay for my own clinical supervision.
Wonderful isn't it? And then they make pay rises 1% so they have effective pay cuts - and then the gubmint denies it left right and centre while making sure they get their 10%.
Hats off to you! You have persevered so well with your steroid reduction. Well done. I hope you get some good advice, as I can't offer any practical help there. Your comment about reading all of the internet did make me chuckle! it feels like that sometimes doesn't it. Congratulations to you and your daughter on her success! How wonderful! You must be so proud! Brings back happy memories. The world awaits her. Good luck to her. Let us know how your rheumy appt goes. x
Thank you Wendy. Goodness, I feel like I have seen every funny cat video ever made. Also that I ought to be given an honorary degree for all the stress of sitting my daughters Finals with her! x
Congratulations to you and your daughter for achieving great things. You with the steroid reduction and her for her first!. You must be so proud !.its really hard coping with the fatigue and it's a symptom that hasn't been easy to crack by doctors either!. I'm writing this in bed before my afternoon nap so find it hard myself. Normally it takes a while for body to get used to a new steroid dose but you've done that with 4 mg. if it's any consolation I've just reduced my steroid dose by 0.5 mg to 7.5mg and I' m noticing it, achey, tired etc so we're all in the same boat!. It's a great achievement to get to 4 mg without compromising your health too much as its hard!. How's your mum?. I hope you and your daughter celebrate this weekend. Take care. X
Good to hear you're making some progress there. Turns out you can be a full time warrior even while you are napping - who'd have thought it?!
Mum has finished her radiotherapy at last, though it is still painful. She gets a bit of a break now before the colostomy op. Daughter has already taken off to start an unpaid internship at Kew Gardens. If it's one thing the young have, it's energy. Have a refreshing nap x
That's great to know Whisperit, thanks. I sleep most days and miss it greatly if I don't!. Good luck for your daughter and mum. Big things ahead!. Keep power napping I say. You take care too. x
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