PMRGCAuk
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Need reassurance

Christinemac

Hello I am down fron 20 mg Pred to 15mg for the past two weeks. I was then supposed to reduce by 2.5mg for a month and so on. I was doing fine, delighted actually when now slight pains sneaking back, a bit fatigued, but nothing I can't carry on with.. Last night my left eye started its trick of blurring slightly making me more aware of it. This morning a little annoying. After all that my question is........ Should I stay on 15mg for another while not to upset the apple cart too much? Also would the eye thing just be from lowering the Pred? Thanks so much , I feel better now for just sharing!!!!

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Your doctor hasn't a clue! 2.5mg per month won't work if the rest of us are anything to go by! No reduction in a taper like this should be more than 10% of the current dose - so down to 15 it's probably not too bad as you are hopefully well above the dose you will need longer term. From here - it probably WILL matter.

Recognised practice is at least 4 weeks at each dose - so stick at 15mg for at least that long and then review. It will also give you a chance to be sure 15mg is what you need NOW. If the blurring gets worse, especially if it is in the morning, report it to a doctor immediately. And anything worse than that - any visual symptoms, jaw pain when chewing, headache, head for A&E.

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Thank you so much PMRPro .....I will follow your advivce ! It makes sense to me!!

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Hi Christinemac, I only wish that at the time of my PMR, that PMRAuk and the likes of PMRpro and the other Ladies were around, when I was advised of the standard dose and reduction . Instead it took 2.5 years to come into contact with them. Up and down with the dosage ,no other advice from the consultant , I became more ill, I had given up my Scubadiving .but then searching the Net - is this the answer with their Reduction Plans?, when to slow up, steady the dose, go back etc. In control ,and then a new Rheumy even came the old routine and chastisement, and I told him of the latest research . Next time he had changed his approach,' How are you getting on'? he asked and seeing that I was in trouble, I am sorry but I just cannot just sit still but at the same time do some things, he prescribed leflunomide to support the Pred reduction. Its working, but turns my body inside out at times but with the Unlocked and its advice ,I am now at 8mg,going on ( no not 17 may be 82) 7mg. follow the Leaders is my offering - and to them my thanks ,John

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Hi,

Ditto to everything PMRpro has advised.,

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Hello C we seem at the same point here on reducing from 20mg. My Rhum. advised almost the same plan down to 10mg. Thanks to the personal experience of others wiser on this site I was able to put my case for more flexibility. He was ok on this & not dogmatic at all. See him in 4 months & hopefully I may be near the 10mg. Have to see how the immune battle evolves. All the best to you.

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I wouldn't reduce anymore, I'd wait and see if this little lot of symptoms settled down first. I don't mean to be alarmist but you need to have the eye symptom looked at immediately. What you describe can be a symptom of GCA and there are no second chances in some cases ( precious eyesight). As your GP appears to be clueless I would prepare myself for a day in A&E. Better to be safe than sorry.

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Thanks so much for yere advice! I am listening and will let ye know how I get on. Much appreciated!!!!

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I refuse to reduce if I have any PMR pain. I also use a modified DSNS method. My Rheumy wants a 2.5 reductions also, I did it reducing from 20, but will only do 1 mg 10 to 5 then only.5. I not understand the rush. Good luck.

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