Can't I ever have a good day ?: I'm 5.5 years into... - PMRGCAuk

PMRGCAuk

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Can't I ever have a good day ?

Ronswife profile image
14 Replies

I'm 5.5 years into this and now have Adrenal Insufficiency that will not end until I can lower this prednisone. I made it low and it flared and now I am back to 10 mg. In the interim I was diagnosed with hypothyroidism. It takes about 8 hours for the prednisone to kick out most pain but not all of it and then I'm back hurting and want to sleep 12 hours. Do others take 8 hours for the prednisone to kick in? I have no life and no energy or ambition and it's getting worse. I am seeing an endocrinologist now finally.

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Ronswife profile image
Ronswife
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14 Replies
SheffieldJane profile image
SheffieldJane

Fingers crossed for your Endo appointment. Hypothyroidism can make you feel bleak until it’s treated. Have you tried the thyroid HealthUnlocked site as well? It’s pretty active. I have both auto immune diseases too.

SnazzyD profile image
SnazzyD

Hello, sounds like you’re really struggling and I’m not surprised. It can seem overwhelming when nothing seems to get better. Are you getting medical advice with your dosing?

Reading back trying to piece things together and a number of factors could be going on here so few questions have come to mind. Have you had adrenal insufficiency diagnosed when you were on low doses? At doses above 5mg and certainly 10mg it becomes less easy because your glands will be being suppressed again. Have you been advised on how much your thyroid problem is responsible as opposed to adrenals? Perhaps the Endo appointment will determine this.

Another question, have you been assessed recently to see if your pain is actually PMR? Where is the pain and how does it start?

I asked in one of your other posts if you had had your vitamin D checked? A low level can make you feel vile in various ways, including energy and pain. It’s easily fixable too.

How did you get on with your diet changes?

I know it’s a lot of questions, especially when you feel so flat but I suspect there are multiple factors and bumping up Pred may not be helpful enough to justify the downsides.

Ronswife profile image
Ronswife in reply toSnazzyD

Yes I have had D checked and am under good mds care. I had the adrenal test about 2 years ago but could not get into seeing an endocrinologist until about 6 months ago. I am improving my diet as diligently as possible and taking D4 and as well as all the b vitamins. This am I took 10mg of prednisone at about 5 or 6am and felt good at 11am. By 6 pm I was definitely dragging poorly and needing sleep soon. My hands swell severely on less than 10 Or I would try more reducing.. Thanks for checking back.

Ronswife profile image
Ronswife in reply toRonswife

Yes pain in knees , shoulders, wrists, hands,throat. Swelling in hands and wrists. Migraine pain on the top of my head.

Hosers2 profile image
Hosers2 in reply toRonswife

Another cause of your pain could be reaction to statin drugs. If you are presently taking statins, you might want to change brands or eliminate them for a while.

Five years prior to being diagnosed with PMR, I developed the same muscle aches and pains that you describe. When I immediately eliminated Simvastatin, all of those pains went away within the month.

Ronswife profile image
Ronswife in reply toHosers2

Fortunately not on statins.

Hosers2 profile image
Hosers2 in reply toRonswife

When I was taking Prednisone, I took half the prescription at 2:00 am (when I woke to use the bathroom). I took the other half at 2:00 pm (so it wouldn’t interfere with getting to sleep at night. You might want to try that method, so you feel better throughout the day.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Sorry to hear this, but as others have said there does seem to be a lot more going on than ‘just’ PMR, which needs further investigation.

Answer to your question re amount of time Pred takes to work, 8 hours is certainly well outside the norm: 1-2 hours for uncoated, slightly longer for coated.

Ronswife profile image
Ronswife in reply toDorsetLady

Thank you.

PMRpro profile image
PMRproAmbassador

When I was on methyl prednisolone it took a long time to work - so I was taking it before bed in order to be able to move in the morning, otherwise it was mid-afternoon before it had any effect.

Has the short duration of relief always been a problem? For some people the antiinflammatory effect of the pred doesn't last the full 24 hours, it can be anything from 12 to 36 hours. Often they find splitting the dose helps but that is usually obvious long before the adrenal insufficiency level.

Hypothyroidism can also cause the symptoms you are describing and even look like PMR - it is one of the things that should be ruled out before diagnosing PMR.

"I made it low and it flared and now I am back to 10 mg" - and that is another factor: you can only get low on pred and then off it altogether once the underlying cause of the PMR has burned out and gone into remission. At these lower doses it is a balance of the two which can be very difficult - but if you go too low on pred to manage the inflammation then the PMR will return and it alone can cause all the problems you describe.

Which is more important to you? Managing the PMR well to allow a decent quality of life or forcing the pred low to regain adrenal function - at the expense of allowing the PMR to flourish? Though it is perfectly possible that managing the hypothyroidism will make the entire thing look a lot better.

Ronswife profile image
Ronswife in reply toPMRpro

I have read that prednisone can affect the thyroid test results but 2 tests put me at needing 50 mg of" something thyroxine" so after about 6 months how do I now when the thyroid issue is okay? I am feeling bad and having trouble with words now. I would not feel good with the two choices you suggested. I will see the endocrinologist in January again. Thank you for responding.

PMRpro profile image
PMRproAmbassador in reply toRonswife

Pred can suppress the TSH result - thyroid stimulating hormone. If it is high it shows you need supplementation - the higher, the more. So if it is showing you need 50, probably levothyroxine, you probably need more as it isn't as high as it would be without pred.

Fireleigh profile image
Fireleigh

Oh dear, that sounds really painful and depressing. I do hope you find some comfort and relief soon. You have my sympathy.

Sho-Sho profile image
Sho-Sho

I totally understand how you are feeling. The adrenal insufficiency effect is a real kick in the teeth - like you five & a half years, down to 5mg & feel like you do. Really good you are going to see an endocrinologist, it’s such a specialist area, so hopefully they will be able to help you.Good luck.

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