Posted , 14 users are following.
Can anybody tell me what the unpleasant side effects I can expect from use of pred steroid medication?
Am down to 11mg a day and am so concerned have been taking for two months and can't see how I could be free of them altogether.
What are your experiences?
2 likes, 58 replies
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pauline36422 Gone_Girl
Posted
to have all those side effects must be a real upset all the best on your recovery
EileenH Gone_Girl
Posted
Everyone has different responses to pred. There are over 82 listed side effects - no-one gets all of them, some people get none of them. Some are visible, some are not. Whether you regard some of them as unpleasant depends on you. Some people gain weight, some people lose weight - then it depends whether you were overweight/underweight to start with.
I gained a lot of weight with one sort of pred, I've lost it all and a bit more by being very careful about diet (very low carbs which also helps avoid the pre-diabetes risk). My hair turned curly again after years of being smooth. Now it is back to smooth.
I haven't had any decrease in bone density, increase in blood sugar or long term raised cholesterol (it went back down again) - and those are amongst the ones doctors are scared about but they aren't inevitable. Lots of the things people blame on pred can also happen with PMR - I had 5 years of PMR without pred so know which things happened then.
But as the others have said - don't try to rush off pred or even reduce too far because that achieves nothing and you might as well have not bothered taking it in the first place and weathered the symptoms which will return and probably get worse over time without pred.
Some experts think it is possible that not taking pred for PMR may make it more likely you will develop GCA, that is a point if dispute. However, if you do develop GCA it has a side effect that is infinitely worse than taking pred, whatever pred does to you. Untreated GCA can lead to loss of vision, partial or total, and it is orreversible.
Untreated PMR means you have inflammation coursing through your body which in the long term can cause all sorts of damage to muscles and your blood vessels which can lead to other problems in the form of cardiovascular disease. It also increases your risk of developing certain cancers.
Pred reduces these risks - so while it may unpleasant it has many positive things to be said about it. As yet pred is the only thing available to manage PMR. It is the only medication that has any chance of avoiding the visual loss that may happen in GCA and even then it must be used in high enough doses and early enough.
There is research that suggests that not knowing what the side effect profile of a given drug is also reduces the number of such side effects reported. Most of the side effects are worse at the higher doses needed for GCA, although they may appear in some people at lower doses too.
My experience is that it isn't worth worrying about until it happens. Even the less attractive side effects I had didn't make me consider going back to untreated PMR - that was definitely worse.
ptolemy EileenH
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EileenH ptolemy
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ptolemy EileenH
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EileenH ptolemy
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FlipDover_Aust Gone_Girl
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constance.de FlipDover_Aust
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EileenH constance.de
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lodgerUK_NE constance.de
Posted
He is, as EileenH has said, ' a quite nice chap really'.
Certainly was my very best friend for 5 years and for others for life.
constance.de EileenH
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tina-uk_cwall constance.de
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paula63201 Gone_Girl
Posted
Here are the side effects I have experienced:
Purpura at the slightest bump.
Elevated blood sugar, (96. The limit is 100, so still within the 'normal' range) I am told it is the Pred and should come down as I reduce. Am on 5.5 alternating with 5.
Accellerated cataracts (had the lenses in my eyes replaced)
Sometimes dry mouth
I drink 2 liters of water daily, in addition to random tea (decaf), coffee(2 cups daily)
I exercise by walking 4 times a week for 40 minutes and doing daily yoga. I row occasionally. I have a stand up desk.
Don eat sugar and sweets, limit carbs, fats and salt or salty food. I don't like sweets, so it is not a problem to do so. I love bread and salt, so that is a pain.
Have not gained weight. BP normal.
General cholesterol numbers are optimal. HDL 111, LDL 75, Trigycerides 71. The doc did a Lipoprotein Subfractionation and it shows mid range potential for coronary disease and I am genetically predisposed (LPa). Because of the LPa, combined with the underlying inflammation (PMR) and slightly elevated blood sugar. She says it is for my future.
I have not started the statin. I have looked at it and have put it back in my pill box. I hate drugs. I know I will take it eventually, when it speaks to me loudly to take it.
Prednisone is a good friend of mine. Helped me greatly!