A Flare or not a flare, that is the question.

Thank you lodger, I always in a sense prepare for a withdrawal, I do very little every day and even less before, during and after a reduction.  I am in no hurry to reduce but my one and only appt. with a consultant rheumy wrote out a plan for me and my new gp insisted that I stick to it.  It is far quicker than what I have been doing.  I told her I was winging in and she really wasn't pleased.  I was reducing by 2.5mgs every 6 weeks or even 9 weeks.  So was on 10mgs for 6 weeks.  I said I would reduce by 1mg every 6 weeks, she said no, every 4 weeks and I said no.  So I am doing it my way. 

Also even though my 1st appt with rheumy in March, he said he would see me in 8 weeks.  I told her I hadn't heard a thing, so she suggested I ring his secretary to get appt.  I am not that fussed on seeing him, he prescribed A Acid, which I refused to take and also no mention of a Dexa scan.  Thanks anyway, I do know the DSAS reduction plan as well as the Bristol Plan.   Pat

Thank you Sue.  I wanted to reduce by .5mg but the new gp would not hear of it.  We both compromised instead of 4 weeks at new dose, I said 6 weeks.  So I am doing that.  My thigh does not feel too bad today.  

Sue, the gp I used to see has left the practice and she would have let me manage my own pred, she knew she could trust me.  But this new gp along with Rheumy are adamant about the way they want it done.  The new gp did say, if I had a flare to increase it.  Oh my head is turned with all this lol.  I am going along the lines of 1mg every 6 weeks and maybe when I reach 5mg or 6mg I may start to reduce by .5mg.  Thanks again Sue.

It's very difficult with some GPs I know, I do not see a Rheumy, saw one once at that was enough! You sometimes wonder who's life it is. Never mind, just nod in the right places and smile! 

Pat, Sue is lucky in that she has a GP who is prepared to work WITH her - it's a pity we can't clone him and others like him!  He and the rheumy might well be "adamant about the way they want it done", but at the end of the day we are all different in the way we respond to both the illness and the treatment - what suits one will not necessarily suit another.  After all it was us patients, not the doctors, who devised a way of tricking the body into not noticing dose reductions by reducing in just miniscule decrements and tapering over a longer period of time.  Since then, many people for whom their doctors' usual recommended reduction programme hasn't worked have tried one of the slow tapering plans (or even set up their own personal regime) and have been more successful.

I was lucky in that I was able to reduce in fairly textbook fashion under the guidance of my rheumy from 40mg down as far as 5mg but I then hit a brick wall necessitating a hike back up to 10mg to get control of the inflammation.  Once back at 5mg, I was advised to remain there for some 7 months which, with hindsight, made sense because that was the point where things had gone pear-shaped previously.  Like the 10mg dose, 5mgs can prove a stumbling block for many.  I then continued reductions in just half mg decrements taking seven weeks to taper from each new dose to the next - a snail's pace but it worked all the way to zero Pred, which I reached more than 3 years ago now.

The slower you taper, the more unlikely it is for the body to notice the reduction, so reducing the likelihood of flares.

  

  

Thanks Sue but I have to have an input, I want to be able to be who I am and not who they want me to be (an obedient nodding dog)  I may have to do nodding dog sometimes though.

Oh Mrs. O it all makes sense what you just said.  I don't want to be a hospital number on a conveyer belt of patients.  Anyway the ache/throbbing in my left thigh has gone.  Happy days, it may have had nothing to do with pred reduction or PMR, one will never know.  Thanks Mrs. O

Hi again Pat,

I agree we should all have our say about how are illnesses are dealt with, but sometimes you just have to play the game. As my mother used to say - there's more than one way to skin a cat! 

So true Sue, I will have to remember to acquiese at times, when it suits me or when I am in the mood.  It all depends on how I am on any given day but thank you again Sue.

Hi Pat,

maybe you had a bit of pred withdrawl??  I notice a difference for the first few days and then am back to normal.  I think as long as the symptoms don't get worse you're ok.  

I think decreasing by 1/2mg once you get to 9 or 8mgs is safer and taking 7 weeks gives your body more time to adjust or as Mrs O says tricks our bodies a little.

Hope you can get through to you Dr. And if that doesn't work a flare (😉) will get you more pred.

Hugs, Diana🌸

A flare is the last thing Pat needs, you have then to hit it hard and fast with a higher dose.  Yo-yoing does you no good on pred.

Pat should just smile sweetly and nod at her GP and then go on the way she feels best for her. 

Your medics should work with you as part of a team to get you through this - you know your own body better than anyone else.

I love your little emoticon

Thank you Diana, I  think it may have been pred withdrawal or I did something in my sleep, anyway it's gone.  I will be considering very carefully when I have to decrease again whether it's by 1mg or .5mg and yes will also consider 7 weeks.  Many thanks  

Hi Lodger, I am getting more confident in my reduction plan and yes I can tell the medics one thing and do another lol I do hate telling lies but sometimes for my health reasons, I am going to have to do it.  Will see when the time comes.  Thanks.   Pat

That is why you smile and nod, then you are not actually 'telling a lie'.

There are a couple of reduction plans, which take 1 month to get down by 1mg and they both work.  Follow this thread to the pinned section of this site and then email Northeast and put subject heading in Reduction Plans, both will be sent to you. http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316

Thank you lodger, am not having a good day today.  My muscles are sore but I don't need pain relief.  The next time I am reducing it will be .5mg I think and then I can say the pain came back when I reduced by 1mg.  Am going to get the link you sent me later on.  Thanks again.

Hi Lodger,

Thanks, I think the emoticons are fun☺️. 

I was sort of suggesting Pat could tell a little white lie about having a flare and that would get her more pred to decrease more slowly. Just didn't want to tell her to lie to her Dr.🙊🙉🙈😬.

🌸

Hi Mrs Mac, yes a little white lie with an element of truth, therefore not a lie in my books.    Love the 3 monkeys hear no evil, speak no evil, see no evil.  My granny used to have them in brass in her wee house where I grew up.  Yours reminded me of her.  

I've still got the 3 monkeys given to me when I was 12.  When I dust (just occasionally), I usually hold them in my hands longer - why I don't know!

Regards from C.💐

Oh, how lovely, they bring back so many happy memories for me.  They seem to be only ornaments when we were younger.  Now they hold so much sentiment (I think) that's why you maybe hold on to them longer now.  Pat