Are side effects pmr/hypothalamus/adrenal related?

[Ebiker]

Had some sort of flare, possibly activated by the bivalent covid booster although discussion on here suggested it did not seem like a normal flare, in December. See previous posts. Ended up on 15mg daily to get on top of it and dropped very slowly. I felt awful most of the time since then and lost weight again but am now back to having more normal hours each day. Currently on wk 4 of DL slow taper 13mg to 12mg. When I say normal I mean I push myself to get on with the day at home and in the garden.

Some side effects such as fatigue and not being able to engage in anything ie conversations, go anywhere, dead head have improved but others still bother me and I wonder if anyone can help here as I am seeing doc this week.

I feel that the natural body senses/ reactions (for want of better description) have been affected. For weeks I couldn't complete a yawn, never sneezed or blew my nose and had dry nasal passeges! I have short hot flushes when wakening, after eating, when I ask my body/ head to think or do something. My hands are a little unsteady and arms weak in mornings but this improves as day goes on. Some days I have a tight band around head and no inclination or emotion!! These are lessening.

Any thoughts appreciated as I want to ask doctor 'what next?' I have everything tested and checked re weight loss and all clear.

Also I recently had mebendazole treatment for an awful gut infection although the test for it was negative and it amazingly improved a number of things, including Gerd so I have halved the omeprazole.

Not sure that it was a parasite infection as I have not been anywhere for over a year!

[SheffieldJane]

Empathy and sympathy apart. What a well described, interesting set of symptoms. A homeopath would leap on them. If only doctors still thought that way - each symptom a clue that points to a remedy. It does sound like a bad effect from the Bivalent Booster you had, maybe complicated by the awful gut infection. I am not sure how far you will get with conventional medicine. My doctors seem to give a multitude of temporary “stick on plaster type” weak products, for individual symptoms and rarely look at the whole picture. Good luck with the detective work. It’s not a flare well not a typical one. I might pause the taper and maybe do sick day rules even ( extra 5 mgs for a week or two).

[Ebiker in reply to SheffieldJane]

Thanks SJ. As I have not had any usual pmr symptoms for a couple of months at least ie no pain, no stiffness I wonder if in fact I needed to go as high as 15mg. I thought that perhaps I should drop with a bit less caution.

But of course the problem is knowing what is causing what.

Your comments re homeopathy are interesting as at one point my doctor did comment on western medecine not necessarily being the answer for me!

[PMRpro Ambassador]

Mebendazole is not for bacterial infections - but threadworms can cause havoc if they aren't recognised and treated early and we are potentially at risk because of the immune suppression that pred can lead to. And you don't have to go anywhere - children often have them unnoticed and having the grandkids around is enough,

Is there any chance you may have had Covid back them?

[Ebiker in reply to PMRpro]

I decided it could be threadworms when I saw what I was passing, plus I had had occasional 'happenings' of bowel leakage ...not diarrhoea. It would happen without me even knowing it or after passing wind! Also an occasional gripe and a little tender in abdomen.I asked for a stool test but it was negative. The doc I spoke to was quite dismissive so I went to chemist and as I said it was almost a miracle. After a week I was back to feeling good, gradually improving and the burping disappeared!

It might not have been threadworms, as it did not all tie in but it was certainly a gut infection of some sort.

Re where it came from, who knows as no children or visitors, no eating out for more than a year ...

Did test for covid at some point and negative.

I am concerned that whatever it was could come back as I feel that it could have been there rumbling for some time and could be the cause of all the weight loss, poor absorbtion. I did have a sudden slight leak again yesterday when doing my daily walk about, but too early to say.

Any thoughts on what questions I should ask?

[PMRpro Ambassador in reply to Ebiker]

It often takes more than one treatment so don't be surprised if you need repeated doses. And yes - you could have had them for years and they were just increasing until you had a severe enough infestation to cause symptoms. Are you alone at home - everyone in the household needs to be treated and all bedding and so on washed and thoroughly vaccuumed for a few weeks. The eggs can be anywhere and survive for up to 2 weeks and you can pick them up again.

[Ebiker in reply to PMRpro]

Lost chatty reply so briefly. Thank you for information . So helpful and reassuring. Was in Gozo in Nov '21 and ate in restaurant with dodgy toilets last day. Had gastro problems when back home and put it down to meal on flight. Few weeks later had pulmonary embolism and after that gastro worsened so decided it was apixaban. Dr was surprised. Now on warfarin.I will follow up this infection business with doc.

I know very little about the hypothalamus. Do you (or anyone out there) think any of my other 'funny' symptoms could be related to this/nervous system? Some such as hot flushes could be pred related I guess.

As always thank you for your time and thoughts.

[Ebiker in reply to PMRpro]

Share home but lots of seperate living space and own toilet etc. Plus we have been ott careful.

[PMRpro Ambassador in reply to Ebiker]

It's shared bedding and towels above all.

Your hypothalamus question is very complicated - the hypothalamus, pituitary and adrenals are called the HPA axis and are closely linked.

[Ebiker in reply to PMRpro]

Ok. So any symptoms such as ears not happy with loud noise and hands a bit unsteady could be adrenals and pmr/pred linked and will presumably improve as I drop. It seems that the hypothalamus controls most of what goes on in our bodies! Thank you.

[PMRpro Ambassador in reply to Ebiker]

It does have a pivotal role!!!

Actually - a lot of people have commented about noise intolerance - me included.

[Ebiker in reply to PMRpro]

Interesting Pro. The noise thing is one of the things that concerned me most.

[PMRpro Ambassador in reply to Ebiker]

One of the compensations of being a widow is I don't have to endure the level of TV my rather deaf husband espoused!

[Body_bonkers in reply to Ebiker]

I’ve become very sensitive to sounds and smells. HRT has helped but it’s been getting worse since starting steroids few weeks ago

[Ebiker in reply to Body_bonkers]

Thanks for this. I am on a really good day again. Seems to be improving daily now. Great to feel alive again even tho' still some minor funnies.HRT would suggest menopause and hormones, which are I believe part of the same system as adrenals?? Others more knowledgeable might comment on this.

Good to know that the problems with sound and the fact I have not been able to look at tv screen etc could be related to steroids.

In fact looking back over the last year a lot of my problems could be down to meds. I am now pretty sure that long term omeprazole was not necessary.

[Body_bonkers in reply to Ebiker]

Believe adrenals do indeed produce most of our hormones so mine are probably stressed already. I’ve not tried these but Calmer ear plugs are said to help. Sound blocking plugs can make things worse but these filter the sound instead to help with intolerance

[PMRpro Ambassador in reply to Body_bonkers]

Not sure I'd say it was MOST of our hormones - it's only one of 8 organs!

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