Adrenals or Flare?

[LemonZest11]

Hi Everyone, just wondering if someone could explain to me the telltale differences between a flare and an adrenal struggle? I am now down to 3mgs, going really well up until 3 days ago, albeit still OK. Feeling headachy from neck stiffness and a bit of shoulder stiffness. I have been feeling pretty well, but not sure whether to ride it out up the dose and take 5mgs extra pred. I coincidently have a rheumatologist appt in the morning, she will tell me to stay at 3mgs. What do you think? Another query, my recent bone density ... T score of -2.4?

[SheffieldJane]

Have you been offered a Synacthen Test? It may be useful. Have you been overdoing things - sometimes a rest can do the trick. In a hammock, under a tree. Cannot interpret bone density. Someone will be along.Keep an eye on the headache. Remember what happened to me at 3 mgs ( GCA/LVV). I hope this is the last little bump in the road for you. 🌼🌞

[LemonZest11 in reply to SheffieldJane]

Thank you Jane, yes, I have already been diagnosed with GCA/LVV, hence the tocillizumab. I always overdo things ... 9 grandkids 🤷‍♀️. But I have been doing extremely well, feeling so positive and I still do. Thank you for always giving lovely, supportive comments. I hope you too, are travelling bareably. Sending love to you from Downunder 😘

[SheffieldJane in reply to LemonZest11]

I forgot that you were in the Toc club. I envy your taper. When my Adrenaline function was inadequate, I felt swooningly tired and a bit sick. Not so much the PMR type pains of an impending flare.Love to you too. 💚

[LemonZest11 in reply to SheffieldJane]

I have felt that too. At the moment my blood tests are showing that neutropenia is lurking. It’s been an ongoing threat. I’m just hoping that I can move forward. We’ll see. “Swooning” ... we used to do that for more thrilling reasons once ❤️

[DorsetLady PMRGCAuk volunteer]

Sounds more like too little Pred, maybe with a bit a struggling adrenals thrown in - but would have expected to start at slightly higher dose?- this is link to AI symptoms etc - might help differentiate -niddk.nih.gov/health-inform...

[LemonZest11 in reply to DorsetLady]

Thanks for this ... I always crave salty food, haha. Yes, I suspected that. Do you think go up 5 for a couple and then back to 3?

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

Probably work....you can only try!

[PMRpro Ambassador]

Maybe drop in to the rheumy that the speed of reduction seems to be outpacing the adrenal struggle - TCZ lets you reduce the pred and the reduced pred will encourage the adrenal function but only as fast as it goes. TCZ has no additional effect there.

[Rugger]

The bone density in my spine was the same value as yours -2.4 and it was described as osteopenia, so not quite as severe as osteoporosis. -2.5 and more is osteoporosis.

Four years ago my reading was -2.6, two years ago it was -2.5, so I'm quite pleased there's been an improvement!

Your headache and stiffness sound more like GCA symptoms than adrenal, but we're all different.

I'm on TCZ too and when I reduced to 3, 2 and 1mg pred, my LVV symptoms returned so my rheumatologist put me back to 5mg, which is where I'm staying for the time being.

Let us know what your rheumatologist says. 🌸

[PMRpro Ambassador]

Forgot to ask - what were the individual t-scores? Was -2.4 the overall one?

[LemonZest11 in reply to PMRpro]

Neck -2.4, Hip -1.7, Spine -1.0. Had a bad night with headache, got up at midnight and took 5mgs pred prior to my 3mgs at 2am. Just completed my stretches and feeling a tad better.

[PMRpro Ambassador in reply to LemonZest11]

NECK? Or do you mean neck of femur? The others are excellent - the -2.4 is borderline and if it is the NOF which is the great concern for elderly people and falls as a fractured NOF can be a life-changing event.

[LemonZest11 in reply to PMRpro]

Yes PMRpro, femeral neck. So best not to fall over then, 😛. Saw rheumy this morning and she thinks my neck is osteoarthritis and wants me to continue on 3mgs. I didn’t tell her that I had already gone back to 5mgs, didn’t want to upset her! She still happy for me to take ibuprofen when needed 🤷‍♀️. I’ll go back to 3 tonight and see what happens. TCZ will now be 3 weekly as white cells are low, but not of great concern.

[PMRpro Ambassador in reply to LemonZest11]

Oodles and loads of preventative actions to reduce the risk - all cheap and low in adverse effects!Remove trip hazards in the home - trailing cables (cf plugging in devices to charge a la DL a few weeks ago) and loose rugs for example, improving lighting in dark corners, NOT climbing on anything, even stepstools, wearing proper shoes in the house rather than mules or fluffy slippers, keeping muscles in good condition and vit D levels and hydration adequate, addressing polypharmacy, especially with BP medications or anything that may lead to dizziness ... In other places (not you I imagine) not going out when it is icy and being careful on surfaces that become slippery when wet.

Sure there are more - haven't written about it lately

[LemonZest11 in reply to PMRpro]

Thank you! You really are amazing. I have taken care of obvious hazards but I realise these things happen even so ... it’s more likely to happen playing cricket with the grandies!! I have been in the park this afternoon with 4 children, 2 - 8 years old. I have slowed down a bit but I still love to get on the swing and chase them around. I will be more cautious. Thanks again PMRpro, how do you know so much?

[PMRpro Ambassador in reply to LemonZest11]

A mispent youth perhaps? I have worked in the realms of healthcare all my life and read and watch that sort of stuff in my leisure time. One daughter is a nurse, one a paramedic, and we talk about their work too. Once you have seen too many results of #NOFs and how it impinges on the patient's life thereafter you make sure you know about how to reduce the risk. And that is reinforced by the last year since my husband fell at home and fractured a vertebra - far easier to recover from than a fractured hip at nearly 70 and it has been a long-drawn out and hard experience.

No, we may not feel old in our 60s - but unfortunately our bones don't listen ...

[LemonZest11 in reply to PMRpro]

Thank you for all that you do for this community, all your advice, and all that you are. ❤️ I know I will return for more of your wisdom soon.

[piglette]

I found the symptoms very different, it was the deathly fatigue and general malaise that seemed to go with the adrenal problems. I discovered you need to stick it out at the same dose until the symptoms improve.

[YuliK in reply to piglette]

Was dreadfully tired a few weeks ago, probably sleeping 18-19 hours a day. Couldn’t function.

PMRpro advised me to go back to 5mg prednisone because I had the most dreadful bout of fatigue on 3:5mg.

My adrenal was giving me trouble.

I took PMRpro’s advise , and I’m feeling a lot better and not so tired....

I shall start to drop again by 0:5mg next week.

It was prednisone withdrawal symptoms that’s for sure.

YuliK 😷

[LemonZest11 in reply to YuliK]

I’m thinking this might be the old PMR, but we’ll see. Thanks for your comment.

[YuliK in reply to LemonZest11]

Looks more like Withdrawal symptoms ..😮

Hope you are feeling better.

[LemonZest11 in reply to YuliK]

Oh really? Neck pain?

[YuliK in reply to LemonZest11]

Especially neck and shoulder pains for me.

[LemonZest11 in reply to YuliK]

That is reassuring, because that is what I am feeling. I’ll press on. xx

[agingfeminist]

please discuss the neutropenia with your doc...corticosteroids cause the opposite, i.e., neutrophilia (mine have rocketed).I love your positive attitude..So much gets thrown at us by this disease...lots of bounce is definitely what is needed (PLUS, of course, our favorite poison - steroids)

wishing you good things!!

[LemonZest11 in reply to agingfeminist]

I have neutropenia because I’m on tocillizumab. Wouldn’t it be great if they evened things out? Take care.

[agingfeminist]

oh dear! I am sorry..just so much to cope with...it is endless...The steroids lowered my resistance and somehow I picked up a fungal infection and I am now taking a drug that is beginning to affect my liver function! I love my simple lockdown life...it would be great not to have to deal with vagaries of my immune system. sending you GOOD wishes

[TheMoaningViolet]

Hi LemonZest11, I have only just seen your post and I hope you are feeling better. The answer to this question is the key to a successful taper, so I have been pondering this a lot. In the early days when I did bold 1mg drops over a single week, I would get all sort of symptoms on and off for about 2 weeks, sometimes even later, but as long as I was stable for a couple of weeks I felt comfortable to proceed. The symptoms were always a headache (which I didn't have with PMR and am not prone to them) and a return of some pain most frequently in my hips at night and at the top of my spine during day. As some of these could be results of working at a desk for too long, I decided to approach my tapering slightly differently. I asked my physiotherapist to give me exercises which would minimise the likelihood of muscular pain from my daily activities and keep my joints lubricates (unsurprisingly this includes daily joint rotations which anyone can do). This has really helped eliminate some of the muscular discomfort which has nothing to do with PMR. I have been using DSNS taper since I dropped down to 5mg and it has completely revolutionised my experience. You are repeating each step in a way and at the end of each repeat you can tell whether you can extend it by a single day. I like having so much control over my taper and with such incremental moves I find it easier to link any pain to the effects of steroid withdrawal. I don't think I can say anything on the bone density issue other that to suggest you read an old post by HeronNS which I have been copying and sending to all my friends and family who wanted to work on strengthening their bones.