Have been on 7.5 gm of preds for 2 months (reduced from 50 mg since Aug.2014) exhausted daily.
Posted , 14 users are following.
I am anxious to get off this medication as my life has come to a standstill. I was prescribed preds.(50 mg) as a result of GCA in Aug '14. Now down to 7.5 and constantly tired. Should I reduce the dose every couple of months regardless of the fatigue. Please advice.
0 likes, 22 replies
EileenH mary82976
Posted
One of the symptoms of adrenal insufficiency is extreme fatigue and when it gets worse below about 8mg it is a sign your body hasn't caught up yet. If you go slowly enough, very small reductions with a couple of months between reductions then it may manage to readjust. If you continue to reduce, ignoring the warning signs you may become very ill and have an adrenal crisis, especially if you are under any stress, physical, emotional or illness, but it can just creep up on you anyway. If you can manage to get to 5mg, one of the top GCA/PMR rheumatologists in the UK likes to keep his patients at 5mg for at least 6, preferably 9 months and he finds this does make the subsequent reduction easier.
"I am anxious to get off this medication as my life has come to a standstill."
I'm sorry you feel this way - I am back to 15mg after a PMR flare at 5mg and I have to say that without pred my life would have come to a standstill again - I wouldn't be able to do anything because of the pain and stiffness. It is a bit different with GCA, in general at least you don't have the stiffness - but without it you have to remember that your life could have been affected a great deal more: GCA blindness is irreversible.
I can only say that if you continue to reduce at present the fatigue is likely to get even worse - won't that bring your life to a total standstill?
mary82976 EileenH
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I shall, however, follow your advice and not rush to reduce the preds.and hope that one day I will be able to have my weekly swim again.
Anhaga mary82976
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EileenH mary82976
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If you are feeling reasonably well on 5mg why can't you go for a gentle swim now? There is no reason why it should be easier when you are no longer taking pred than now at what is a very low dose and which is probably making you less fatigued than if you were taking less.
iellen32 mary82976
Posted
Based on my oneness experience I may say the fatigue I you experience die not come from the Pred which takes care of the inflammatio.
Did you check if you have anemia ?
I had fatigue once and took Iron supplement + Vit b12 for quite sometime and the symptom was gone.
If we taper the steroid before our system requires we may have a flare and this will delay the process.
Without being an expert I had some experiences during these past three years.
I may say I became an expert of my own system! 😊
Wish you the best and keep safe 🌺
Daniel1143 mary82976
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JanSP mary82976
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iellen32 JanSP
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We are not alone!
We must do the best we can , to keep our peace of mind, our joy regardless our reality!
🌺
iellen32 mary82976
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Susanne_M_UK mary82976
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I spend the majority of my time either asleep or resting these days, even now while on 40mg pred and 12.5mg MTX, probably due to the rheumy messing around with my tapering at too fast a rate. Yes, I do protest and make my own adjustments to a certain extent, and even pointed out that I too want to reduce, but the suggested taper is too quick and too high.
You are on a low dose now, take it easy, don't rush things, and let your body adjust. Good luck!
sandra28555 mary82976
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linda17563 sandra28555
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carolk mary82976
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Tastyron carolk
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Happy days.
EileenH Tastyron
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I had been fine on 5/2.5mg enteric coated pills for months - in blister packs. Suddenly I was handed a large bottle with loose ones in for both doses - it was while we were transferring between the UK and here so I got a few months worth at a time. Within a couple of days I started to flare on the 5mg tablets. I tried just the 2.5mg ones and was fine, back to 5mg ones, flaring again. Of course, I used twice as many of the 2.5mg ones so ran out quite quickly and had no source of replacements - you cannot get enteric coated pred outside the UK. You can't get prednisolone at all here, just methyl prednisolone or Lodotra. Medrol didn't work well for me right from the start and I developed a full-blown flare which went on for months until I was switched to Lodotra - same miracle result as at the start.
I have no idea whether it was the filler from a different manufacturer or if they were counterfeit tablets - also a possibility. I called the pharmacy and they claimed no-one else had complained. I'll never know - but it can happen.
Tastyron EileenH
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Susanne_M_UK Tastyron
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EileenH Tastyron
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I have a very suspicious mind!
And of course - while each of those other items you listed may have been innocuous, all together might be a very different matter.
Tastyron EileenH
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Sometimes It seems as if life gets in the way of PMR rather than the other way round. :-)