Adrenals

[pats000paints]

Dear all,

In late November, I had the Fluad shot. That night, my heart began beating so loud it woke me up. This lasted for about 20 minutes. The same thing happened in my local supermarket a few days later.

I was on 4 mg of pred at the time. Ever since then, I have felt weak and depressed. I have talked to a nurse about it, but not a doctor. That will happen in 10 days time on the phone. It dawned on me yesterday that my adrenals could have been compromised so I upped the dose of pred to 5 mgs.

I immediately felt better. The weakness and low mood disappeared as did the nausea.

I have been on pred for 15 years and during that time I have had 3 flares of the disease, PMR and also GCA once.

My father had the illness and recently, my cousin has also developed it. He is 81.

Is it possible that my adrenals will never work properly again? I only have 1mg tablets, but need 5mg now. It's going to be difficult because of the lack of communication with doctors in our area.

As for specialists. They all seem to view pred as the devil drug, yet it has never caused any problems with my eyes or bones.

Pats

[DorsetLady PMRGCAuk volunteer]

After 15 years they may not... they have been 'resting' a long time... but you never know. and steroids [albeit in a different form - hydrocortisone] are used if a patient has adrenal insufficiency whether primary, secondary, or tertiary.

Have a look at this -

bnf.nice.org.uk/treatment-s...

[pats000paints in reply to DorsetLady]

Thank you for the reply. I understand that when I developed PMR it was because my adrenals were probably struggling at that time which was stressful.

I carry this illness as do other members of my family. My father was taken off steroids too quickly, years ago and was rushed into hospital as a result.

I think I need the test for adrenal function, but am worried that I may have to wait a long time.

[piglette]

I never understand doctors and their horror of steroids. Steroids really are a wonder drug with several side effects. They can be used to help around two hundred different illnesses. I suppose they are mostly used short term and doctors get worried about long term effects.

[pats000paints in reply to piglette]

In my case, its too late to worry about that, I suppose. 15 years of steroids have almost certainly affected my adrenals. My problem is the shortage of GPs in my area.

[piglette in reply to pats000paints]

Our GPs are all busy doing private work. It seems National Health work is too hard for them!

[Obscureclouds]

When you say Fluad shot was that meant to be Flu as that is almost certainly what set me off on the road to autoimmune disease after my jab in Oct 2023. I totally agree with Piglets comment about steroids. After over 5 weeks in hospital knowing what it felt like to be living in hell and deteriorating rapidly as practically every hospital Dept tried to find what was wrong with me I was finally given IV Pred which literally saved my life. My husband went home waiting for that call and instead I rang to say I was sitting up in bed and waiting for my breakfast feeling great. (Even the consultants were amazed) Again when given 60mg Pred in July when told PET scan showed I had a vasculitis disease (after similar random symptoms I had in Oct) after just over two weeks I made an overnight dramatic improvement. Pred certainly is a miracle drug to my mind so I’m sticking with it and aim to manage it as sensibly as I can.

[pats000paints in reply to Obscureclouds]

Fluad is given to treat 3 strains of flu and is given to older people. I wasn't told this on the day. It seemed to cause weakness and a very rapid heartrate and I haven't felt well since. Upping the pred yesterday did seem to help.

It could be that its a coincidence? Who knows? Digging into the Net for answers, the juries seem to be out, but a jab that can cause the Guillain- Barre Syndrome, though rare, can potentially cause other conditions too?

[Obscureclouds in reply to pats000paints]

Sorry for my reply going off at a tangent I thought Fluad might have been an autocorrect error as I had never heard of it. I was interested to hear if anyone else had a rare reaction to the adjuvant included in the flu jab to boost the immune system for the over 70s .

[PMRpro Ambassador in reply to pats000paints]

Not to treat but a vaccine to prevent 3 varieties of flu.

[PMRpro Ambassador]

After 15 years it will take a long and slow taper and a lot of patience if it IS going to recover - I rather assume mine won't after 16 years but as long as doctors think the same I won't get the "get off pred"browbeating! Which is a positive.

It is unlikely that adrenal insufficiency is the trigger for PMR developing although they do see low adrenal function in patients with PMR even before being put on pred. Nor is good adrenal function required for PMR to burn out.

You do have a family history to illustrate the genetic connection - though it isn't hereditary as such, it is the propensity to develop it that is hereditary.

I doubt a synacthen test at 5mg will show much - it is still loads to suppress cortisol production. And even when you are told they are producing cortisol in response to a hearty chemical kick with ACTH, that doesn't tell you whether the HPA set-up is all set-up and functioning smoothly to trigger the production of cortisol. As with PMR, symptoms are a really good measure of how you are doing - and there are people on the forum who have had a synacthen test that shows cortisol production that a doctor thinks is good enough to stop pred but they struggle big time with a lower dose.

[pats000paints in reply to PMRpro]

Oh dear. During 1st lockdown, I had a so called rheumy scream at me on the phone that I wasn't trying hard enough to reduce. She more or less ordered me off pred. I was only on 5mg. Even, so called, professionals can be ignorant sometimes.

I've found some 5mg tablets I didn't know I had, so will be OK for a while.

[PMRpro Ambassador in reply to pats000paints]

Must have been having a seriously bad day and wanted to spread the misery. What an unprofessional thing to do! I'd have complained - Covid or not.

[Bopants]

I have been on Prednisolone for 17 years & after several failed attempts to taper (due to tapering too fast under the guidance of doctors, a rheumatologist and even an endocrinologist), I found this website with it’s amazing advice. With this advice and patience/time, I have so far managed to taper to 2mg and I’m doing fine. This has been achieved by doing 0.25mg drops every 5 weeks and pausing at the ‘whole’ mgs for a month or so. I have a long way to go to get to zero, but I’m hopeful that I can, we’ll see…

[PMRpro Ambassador in reply to Bopants]

The proof of the pudding is in the eating!!! It isn't slow when it works ☺️

[Bopants in reply to PMRpro]

That’s true! 😁

[Groggrim in reply to Bopants]

All the best to you. I have very recently changed my drops from 0.5 to 0.25 for a while. I really need to slow things down without stopping completely..

[Bopants in reply to Groggrim]

Thank you, good luck to you too!

[Sandmason]

About the heart rate. I started getting SVT after my second Moderna shot. I had a few during menopause but that was over 25 years ago. Supra Ventricular Tachycardia. If it happens you can often stop it by coughing, holding a big breath and bearing down, or filling up a sink with cold water and putting your face in it. I would think someone would have ordered an EKG and prescribed a beta blocker. I have metoprolol if it starts happening again.

I have taken zero jabs of any kind since getting PMR. I never get anything like flu or c*vid. The old shingles shot I had. My immune system has always been messy with a recent positive ANA of 1/640, no subsets pos.

[Obscureclouds in reply to Sandmason]

I’ve not risked a jab since either. Did consider RSV when offered recently but after reading all the drug info and then couldn’t get any medical advice on whether there may be adjuvant or similar inclusion to cause me problems I decided not to. When in hospital the cardiac team spent over an hour trying to get my heart rate below 170 so I did get prescribed a couple of beta blocker type drugs which I was able to stop/reduce a month or so after being settled on Pred

[PMRpro Ambassador in reply to Obscureclouds]

Depends which vaccine:

"Arexvy: This vaccine is made by GSK and contains an adjuvant called AS01E. AS01E is also used in GSK's shingles vaccine, Shingrix.

Abrysvo: This vaccine is made by Pfizer and does not contain an adjuvant. "

Can't get the RSV jab here - but your main risk factor as an older adult would be as a resident in a care facility. If you live at home and don't have too many small people splothering all over you, your risk is much lower.

I developed much worse atrial fibrillation after the bivalent Covid jab - only that, nothing else. It went from paroxysmal that I noticed a few times a month to daily and up to 12 hours a day. But I was eventually offered an ablation that sorted that out and have had all my jabs since that bivalent Covid jab without any further problems. The local public health doctor praised me for taking that view.

[Obscureclouds in reply to PMRpro]

Thanks for the info. I did write to my rheumatology consultant for advice re future jabs but his response was to say I must guard against any future reaction so should first check … listing the things I had asked him 🤷🏼‍♀️ It was all very odd at the time as feeling so ill with fatigue, nausea, temperature swings between 33 and 39 C ,CRP staying around 200 and platelet count in the 800s a PET scan showed nothing other than a slight change in bone marrow. Despite getting my temperature and heart rate under control, I then needed oxygen support and went into rapid decline over the next 4/5 days. Overall I don’t yet feel inclined to risk another Jab despite knowing Pred worked last time in turning things around.

[PMRpro Ambassador in reply to Obscureclouds]

Not surprised!!