Adrenaline

[Greensleeves]

Hi friends, trying slowly to taper again by 0.5 mg increments. Currently at 7mg , feel dreadful with Pred reduction symptoms rather than PMR. Fatigue, sweats , aches etc . Have an awful lot of ongoing stress with no resolve , being a carer and having unwell family . I take gastro resistant tabs at night, I’ve just taken an extra 3mg , knowing they’ll take a while to take effect. Do you think I should go back to 10mg , and how will we ever manage to reduce when life is so stressful and you’re in constant fight or flight. When the phone rings where is the adrenaline coming from, or it isn’t? I’ve already experienced adrenal crisis once and never want that again. I think that’s the fear. Many thanks. x

[PMRpro Ambassador]

I didn't even think of reducing when I was a full-time carer and knowing the only improvement would be when he died. My doctors accepted that - after all, having one more non-functional family member isn't much help is it! I took what I needed to function - and it was well above 10mg believe me.

Have you sought help? Is anything available? If you break - there is nothing left. You have to look after you as well.

[Greensleeves in reply to PMRpro]

It’s an horrendous time PMRpro , you know the direction it’s going , it isn’t what you want, an awful catch 22 . I am so sorry for your experiences .

Caring must be one of the hardest and mentally exhausting of roles . It’s certainly opened my eyes.

I don’t know what has happened to Social Services throughout these times.

The hospitals seem to be picking up the slack from many health service providers.

I can’t possibly reduce as things are , as you’ve written before , it’s about quality over quantity , being able to manage and get on with it.

I’m avoiding the GP , I don’t want them trying to add steroid sparers etc or putting me back with the rheumatologist. Although

he was happy for me to stay on 5mg indefinitely before I had to increase in 2019. You know what you’re dealing with, with Pred . I’ll take 10mg tonight and see how that helps . We put others first, probably predisposed for PMR . Take care and thank you. x

[SheffieldJane]

Given that you have already experienced an Adrenal Crisis, it would be a good idea and reassuring to have the input of an Endocrinologist to address your fears about reducing Prednisalone. Mine loves explaining the complexities of it all ( it mostly goes over my head). I am at 7 mgs Pred. He wants to see me again when I get to 5 mgs, he will then test me to see how my own Adrenal function is. I think he will probably suggest that I go on to Hydrocortisone instead of Prednisalone because it works better at getting our own Adrenal system going again.At the moment you are being sustained by Cortisol from the Prednisalone and your own Adrenal System is switched off. It does not go up and down in response to life events like our own Adrenal System would do. It is just a steady supply, as I understand it. A very slow taper at this stage will encourage your own Adrenals to begin to work, if they are capable.

I am really sorry that you are under such unrelenting stress. You really need to talk to someone about this. It sounds unbearable. If this could be eased and you could get some help with your responsibilities I am sure that you would begin to feel better. Normally your GP would be the first port of call, I don’t know how accessible yours is? Mine has been pretty elusive. I imagine that there are support organisations for carers if you have a search on the internet. You may wish to seek therapy, so that you can have time just for you. I find it very difficult to distinguish between symptoms from Pred. and my underlying diseases, I am impressed that you are so sure. Wishing you all the best. Keep us updated.

[Greensleeves in reply to SheffieldJane]

Hi Jane, I have considered asking about seeing an endocrinologist when on lower doses. I will go back to 10mg Prednisilone, but do think hydrocortisone would be better for adrenal function further on if necessary. Your endocrinologist sounds passionate about his job, that in itself is great. It’s a postcode lottery who you’ll see . Will be interesting to know if your adrenals are stirring.

I can’t taper as things are, but don’t want to add other meds , and fed up with doctors and hospital appointments and struggling with wheelchairs and all the rigmarole involved. I’m becoming a champion complainer of late .

A grumpy old woman.

The GP is very good, I’m on a waiting list for counselling, they’re inundated with people desperate in these challenging times.

I was absolutely convinced the PMR had finally gone, I’m not so sure now . This was the best taper I’d achieved for some time.

I am more scared of the adrenal function, or rather the lack of it .

Take care I’ll be looking out for your progress Jane . x

[SheffieldJane]

My endocrinologist is passionate about his subject, he draws diagrams, while I try to look intelligent. It’s kind of a fluke that I got an endocrinologist.When I had PMR only, I had the Synacthen Test at 5 mgs and failed it - my adrenals were not performing well enough. When I reduced to 3 mgs I had another test and they had completely recovered. I was diagnosed with GCA/ Large Vessel Vasculitis shortly after this and had to go up to 40 mgs of Prednisalone. I must still be on his books because he wrote inviting me in when I reached 5 mgs again. He did give me a little emergency injection kit of hydrocortisone in case of an adrenal crisis . That might enable you to feel safe.I am utterly fed up with all the tests and appointments and not being able to do physical things too. I am especially fed up of drugs and side effects. I am not only grumpy, I am moany and quite snarky. Lord only knows how you cope. Very little is expected of me and it still feels like too much. I love things being cancelled more than anything these days. Let us know how you are getting on from time to time. Xx

[Greensleeves in reply to SheffieldJane]

He sounds good Jane , must think you’re taking it all in . Everything goes right over my head, its difficult to concentrate , but I completely understand you loving appointments and different things being cancelled . The drugs and the awful side effects must feel horrendous for you. Most people would complain but you feel relieved, it’s too much. I get that. It’s good to see nothing on the weekly calendar. You have been through an awful lot with PMR and then GCA you are entitled to feel grumpy and snarky.

I do hope you’re over the worst now and coming through the other side .

We have to be aware of low mood and wondering what our purpose is.

We all need a purpose and a reason and didn’t sign up for this .

Fingers are crossed your adrenals start working again. They’ve done it before at 3mg .

Isn’t that remarkable, such a shame you got GCA . Had you had any increased stress Jane? I blame stress for most things .

I’d like an emergency injection kit , I will get around to it.

Take good care I will let you know how things are. I do always wonder how people are and how they cope . Sleep well xx

[SheffieldJane in reply to Greensleeves]

Thank you for your kind and supportive reply. Yes there was stress. Suppressing a howl of agony when my second daughter, husband and two sons decided to join her big sister, husband, son and daughter in making their life by the ocean in a beautiful part of Australia. I had cared for my grandson since he was a baby and all the love and commitment that goes into that. They have chosen a wonderful life and I thought that I was being very mature about it but my health knew better. It was a matter of weeks prior to my GCA diagnosis. I am being sustained by a wonderful correspondence with my 8 year old granddaughter and I see them in September. So all is not lost. Some crashes just can’t be avoided. We all have a story to tell. Xx

[Greensleeves in reply to SheffieldJane]

It’s really difficult, we bring our children up with unconditional love, try and guide them, help them, put them first and then we have to let them go and live their lives . I don’t know how I’d cope if they emigrated, it has been discussed, even one living over a hundred miles away is hard . The grandchildren are a blessing. I have strong bonds with mine too. Your granddaughter sounds a super little 8 year old .

It will be wonderful when they visit in September Jane and you’ll see your little grandson too , lots to look forward to , but not surprised you developed GCA after that, hiding your feelings, as mothers do .

You’re right some crashes can’t be avoided.

Have to explain to the GP practice pharmacist tomorrow why I haven’t managed to drop the dose.

Even that’s stressful, but if I don’t have the med review they won’t prescribe.

Even for joyful times we may have to increase the dose slightly Jane . Thank you for your help. Take care xx

[SheffieldJane in reply to Greensleeves]

I wish you well too. I have found my medication reviews stressful too. The surgery employed an in house pharmacist.I was enthusiastic about the first one, not knowing that his target was to cancel anything he could, so my openly discussing some meds I had issues with resulted in them being removed from repeat prescription. Every change he made had to be reversed by me. I noted that he didn’t last very long but I am wary now, I just wanted advice, or a better solution. Good luck with getting what you need and want. Keep it simple. I have given up explaining about tapering and I no longer use the awful pharmacy attached ( but separate) to my GP surgery. Waitrose just supply what I had initially, with regards to Pred., giving me extra to play with.I am going to Australia to see them in September. Alarming prospect. I have never gone when quite so affected by these conditions. At least we’ve invested in flat beds for the flight and two nights in Singapore. I need to properly investigate Methotrexate ( my Rheumatologist is very keen) to see if it will help.

[Constance13 in reply to SheffieldJane]

Had to laugh at this SJ. My husband says I have cancelled more things than I have ever booked/arranged. 😂😂 The idea of travelling/visiting people, etc etc is great booking, but when it comes to the day I just can’t make it. This dratted disease just saps all our energy.

[SheffieldJane in reply to Constance13]

I even cancelled the Queen bless her. ( Garden Party, horrendous queues and rain) champagne and afternoon tea in the hotel and a sleep, bliss!)

[PMRpro Ambassador in reply to SheffieldJane]

It was a good move! Not all they are cracked up to be!!!! Even if it doesn't rain

[Constance13 in reply to SheffieldJane]

“Champagne, afternoon tea in hotel” sounds far more sensible to me than all those thousands screeching.

[PMRpro Ambassador in reply to Constance13]

And jostling to get closer to herself and family!!!

[SheffieldJane in reply to PMRpro]

She cried off too. I think it was Princess Anne. 😁

[PMRpro Ambassador in reply to SheffieldJane]

You were in good company then!! I reckon she's got PMR ...

[SheffieldJane in reply to PMRpro]

And or long Covid which seems very similar. She’s looking thin. Poor old sausage.

[herdysheep in reply to PMRpro]

That had crossed my mind a few months back!

[Viveka]

I'm a sole carer of 99 year old mum (a handful) and when she was in hospital with an emergency operation I stopped my (GCA) taper because it was constant pressure, but I went back to it when I felt we were both more stable. I find it very easy to get trapped in a constant cycle of anxiety and worry. I know the hyper alert feeling - for me it is not the phone but waiting to hear a fall. I have to work very hard with relaxation, meditation and yoga to keep my mind straight. When things were bad a couple of years ago I had some counselling.

Is there any way you can get some time for yourself to do some stress-busting activity that appeals to you so that you can tackle the stress and continue with a slow taper when you feel better - it would be a shame to stay on a higher dose if you're not having PMR symptoms. X

[SheffieldJane in reply to Viveka]

I cared for my mum with Dementia for years, so I know what you are up against. Eventually, I got her into a nursing home round the corner from my house, befriended all the staff and went in every day. So much better. She didn’t know me and seemed to think she was in a posh hotel with servants. She lived on for some bonus years, in good health and slipped away peacefully with her family around her. PMR followed though, no dodging it.

[Greensleeves in reply to SheffieldJane]

Aw sorry to read this too Jane. It’s so hard . No wonder you’ve been through the mill. xx

[Viveka in reply to SheffieldJane]

So glad you found a solution that worked well for you both - dementia is a horrendous thing. My mum is more or less ok mentally but she is a woman of strong personlity and old age brought out all her worst characteristics. Better now she is much frailer and accepts that she needs help. I have no doubt that five years of facing anger and criticism when I was trying to help contributed to my GCA. X

[SheffieldJane in reply to Viveka]

That does sound painful. I could tell you awful stories but it still feels disloyal. My mum in law was very resistant to help until it was almost too late and the choices very limited. I think it is something we should plan for in our own lives, otherwise it gets taken out of your hands. I am anticipating mobility issues as we design our new bathroom, also a Japanese style, bidet toilet, they even had them in the airport in Korea. Wonderful idea. May make the difference between remaining at home as opposed to a care home. Designed cleverly, they don’t need to look medical. Walk in shower with a seat. That kind of thing. It comes to us all PMR is a kind of taster that makes you think. I love solutions, little bits of kit that solve things like reaching and opening jars etc.

[Viveka in reply to SheffieldJane]

We have all got lots of experience of gadgets and gizmos through our caring responsibiities, and there will be more as care tech develops. There is a frame that goes under the bed that my mum can pull herself up on which stopped her having to go into a home. Your bathroom sounds fab! I expect it will be relaxing as well as functional. My mum's bathroom is lovely, all Laura Ashley including the shower screen. The only ugly thing is the non slip floor like in hospitals which are horrendous to clean but far safer. X

[Greensleeves in reply to Viveka]

Very stressful for you, it’s not only the constant worrying about falls but painful when they’ve changed and we’ve almost become the parent for our beloved parent. If only we could turn the clocks back.

There’s a certain amount of anticipatory grief which makes you feel guilty too .

It’s very hard , I’m glad you’ve found some relaxation techniques to help you manage.

Bless your Mum, she’s reached a wonderful age .

Someone told me she’d told her mum her choices were limited, I thought how selfish, but I think that’s how many people are today.

I will look for something, I was able to go see my Bowen technique lady a few years ago ,, which was relaxing as well as managed any flares , but I seem to have passed that point.

I’ll follow your advice and not taper at stressful times, have to be so careful of yo-yoing. Sorry you developed GCA too , because you care and put others first. Take care Viv xx

[Viveka in reply to Greensleeves]

Thanks G, all my friends say their children won't look after them like they did their parents. I don't have any so it won't be an issue. Have to stay well 😀 Hope things go well with your slow taper and relaxation etc. So much online now, we don't even have to leave the house!

[SheffieldJane in reply to Viveka]

Mine have emigrated just in case, 🤭 my son may get the booby prize if he doesn’t act sharp.