PMR - unable to lower Pred: Been on Steroids since... - PMRGCAuk

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PMR - unable to lower Pred

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2 months ago•10 Replies

Been on Steroids since Aug 2023. Have been unable to lower my dose below 12. Have been as low as 11.5 but suffered palpitations. I have read that at or around 10 mgs this represents the point where the adrenals start taking up some of the cortisol production again. I have also seen some comments about HC being used at this point to help with lowering.

I have hashimotos too (hypothyroidism). Getting really fed up with it all. I am a reasonably fit man but am considering going onto a steroid sparer. I have been a runner, fell runner, triathlete and know my body well, these steroids are killing me.

When hashimotos came a calling, it was thought I might have addisons (lazy adrenals), which makes me think my adrenals won't wake up.

I can still cycle and run intervals but I am simply struggling with palps and this indicates to me I need to raise my dose, as they dissapear when I do so. Either they have fiddled with the medication or winter (vit D) seems to indicate its a seasonal change.

Fed up.

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10 Replies

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PMRproAmbassador2 months ago

If you have palpitations, they need to be investigated. Pred can cause them but so can the autoimmune part of PMR/GCA by damaging the sinus node, the group of cells in the heart that govern heart rate. The fact that yours improve with a higher dose of pred suggests the latter is a possibility, as is the case for me.

If you think vit D is a culprit - that is the one supplement I consider essential and you could make sure that is OK.

The point at which adrenal function needs to take over from a falling dose of pred is generally taken to be rather lower than 10mg though some people find the fatigue aspect sets in sooner. HC is used to encourage the return of adrenal function but not at the expense of a flare of the disorder for which you are on the pred, HC is nowhere near the efficacy of pred as an antiinflammatory so doesn;t manage the PMR anything like as well. And it is the PMR that is in charge from now down to zero pred.

Get the palpitations investigated for a start, But I think you are expecting too much of yourself and you cannot exercise as you once did - cycli can sing an opera on that!

• in reply toPMRpro2 months ago

Thank you for taking time to response. Vit D supplements are just rat poison. I use a lamp recommended to me by a Dr I trust for psoriasis sufferers. 10 minutes daily. Alas no substitute for the orange ball in the sky! I only exercise every 4 days, anything more and I feel quite second hand. PMR symptoms are controlled at 12. I am taking magnesium too as I read this also helps the pred lowering. I think the palps are thyroid / pred med related. I wore a 24 hrs monitor and ran to highlight the palps and they were not worried. Have had the palps all my life. Should I simply press on through the lowering despite feeling 'off'. I have followed the very slow protocol suggested on here, however I simply end up going in reverse and putting life on hold for a couple of weeks until it all settles.

Thanks again.

Editor's note from PMRGCAuk: Current medical evidence is that Vitamin D supplements are safe to take and especially beneficial for anyone that may struggle to get enough Vitamin D3 naturally. Please see the below discussion for more context around these comments.

PMRproAmbassador• in reply to2 months ago

Whatever vit D is - used properly it isn't rat poison. Don't believe all you read on the internet, especially FB, Just saying ...

fullfact.org/health/vitamin....

You can sit in the sun or under a lamp as long as you like and still not create the amount of vit D you require for correct functioning of your body. The process in your skin becomes less efficient as you age and at age 60 it produces about one tenth of what it did when you were 20. It is virtually impossible to get all you need via diet - unless you are in the USA and eat a lot of foods that have been supplemented.

DorsetLadyPMRGCAuk volunteer• in reply to2 months ago

Vit D supplements are just rat poison

Well if that's the case then there are a lot of members on here taking it … and doing just fine on it…

CocoaChanel• in reply to2 months ago

„Vit D supplements are just rat poison.” ????Where did that come from?

You could ask for your vitamin D levels to be measured at your next blood test.

PMRproAmbassador• in reply toCocoaChanel2 months ago

"Where did that come from?" - if you google it, you get things like this on veterinary sites:

"Due to EPA regulations that restrict anticoagulant rodenticides, cholecalciferol (vitamin D3) has become increasingly more common as a residential rodenticide. This type of rodenticide is commonly found in soft baits and pellets."

"This is one of the most dangerous mouse and rat poisons on the market. Cholecalciferol, or activated vitamin D3, causes a life-threateningly high calcium and phosphorus level in the body, resulting in severe, acute kidney failure, cardiovascular abnormalities, and tissue mineralization. This can progress to life-threatening disease. Even though this is a vitamin, it is toxic to dogs, cats, and children as well as rodents. Human vitamin D3 supplements taken at high enough doses are also toxic via this same mechanism."

And of course, that has been quoted out of context on places like FB,

They don't equate it with the fact chocolate can kill your dog - no-one suggests humans shouldn't eat it though!

Hugh_Marc• in reply toCocoaChanel2 months ago

I’ve found a kit in Sainsburys recently that is like a Covid test, only you do a finger prick. It said mine was average but I’d like to up my dose.

I’m aware not all supplements are the same & id love to hear people’s recommendations about good quality Vitamin D.

MiniSpec• in reply to2 months ago

You wrote, "Vit D supplements are just rat poison".

So it Warfarin, but tell that to the untold number of heart attack victims who rely on it to keep them alive, and see if they care. If it comes to that, Strychnine is also a deadly rat poison, yet until recently it was also used to keep heart attack victims alive.

So even deadly poisons can have life-saving medicinal uses if given at the correct dosage. The same goes for Vit D. It is necessary for life, and our bodies quickly deteriorate without it, so trying to get by without a Vit D supplement seems counterproductive to me.

I'm sure you're aware that by the age of 70, Vit D is no longer produced in the body when exposed to sunlight. So you do need to take supplements in order to keep up the necessary level of Vit D for your body to function correctly.

MiniSpec2 months ago

You wrote, "these steroids are killing me".

Yet if you tried to stop them you're much more likely to end up dead than by taking them. Don't forget that an adrenal crisis can be fatal, so don't knock the steroids too much.

We all need to vent now and again, and I appreciate that you're bemoaning the unfairness of PMR and the terrible effect it's had on your life, but blaming the steroids for it is shooting the messenger!

You aren't the first person to bemoan your loss of fitness, we've all been through that phase and the only way to deal with it is to accept that you are no longer young and fit, but are now suffering from a life-changing illness that could be lifelong, so forget your past life and concentrate on the life you will be living over the next few years instead.

Only when you've come to terms with the fact that you're no longer the triathlete you used to be, will you be able to lift your mood and find a more positive way of dealing with your new normal.

After all, even without PMR you'd still lose your fitness and strength as you age. Furthermore, your current life would be much worse without the steroids to mitigate the effects you suffer, so please don't blame the steroids, they only help to mask the absolutely awful pain and stiffness you'd feel otherwise.

Just so you know, I've been on steroids for over 14 years, and I know that without them I'd be totally bedridden, so although I've bemoaned my own loss of fitness and health, I appreciate that it's only the steroids that give me any quality of life at all.

DorsetLadyPMRGCAuk volunteer2 months ago

As has been mentioned by others I think you have having great difficulty in accepting that you have an illness which doesn’t allow you to carry on your life as exactly as you did before PMR came along.

It all honesty you do need to accept that you need to moderate your life style, and that doesn’t mean to stop doing what you enjoy and seemingly defines you, but certainly to adjust it.

Stop blaming the medication you are on, it is not killing you, and as for suggesting you add in another one with even more side effects is in my mind unnecessary.

If you adjusted your mindset and activity you might find that you can actually decrease your dose - but it’s not all about reducing relentlessly to zero, it’s about managing your disease with the correct dose of Pred required relative to disease activity…keep poking the bear and it fights back.