steroid reduction

[kingharold11]

How on earth do people cope with steroid reduction the doctors way i.e. no slowly catchy monkey. The last time I saw my rheumy she was annoyed because I had had to increase pred because of a flare and told me to go from 9mg to 5 mg overnight !!!!!!!! when I said I couldn't possibly do that she told me to drop 1mg every 2 weeks until I was back to 5mg. I can't do that either, the only way is very slowly and still I get tired and muzzy headed sometimes. Wendy

[PMRpro Ambassador]

They've never done it themselves and I'm absolutely convinced that the flare rate is what it is exactly because of that. The Bristol paper quotes a "usual" rate of flares as 3 in 5, with their method it is still 1 in 5. The longer you are on pred the more difficult that reduction becomes so using the slow slow methods right from the start makes sense. Once you have struggled, raised the dose, got into the yoyo technique of reduction it just gets worse and worse.

To be honest - if you have a sensible and trusting GP you are better off with a GP caring for you. And the other tbh? I suspect that the patients who disappear after a couple of years of this sort of treatment are not cured of their PMR - they have given up in disgust at a doctor who won't let them say how they get on, or if they do promptly ignore it. I faced that at the second hospital appointment when I saw a different doctor who wasn't rheumy trained (another GP, had one of those at home) and the consultant was dismissive and rude. At that point I still didn't have a diagnosis. So did he think it was all in the mind? I never went back to find out.

And the figures they keep quoting at us? The ones that suit them: "about a 1/4 get over PMR in less than 2 years, 1/2 in 4 to 6 years..." leads to "we don't think those are accurate as they are just the patients who see a rheumy". Fair enough - but a LOT of patients don't go back to a rheumy so how are they recorded? Cured after one consultation?

[Badgergirl]

It's ridiculous. My rheumy told me the other day to reduce 10 mg a month over 3 months from 30 mg and then completely stop the steroids. Needless to say, I am not going to see her again.

[daveD]

LO. harold/Wendy. I gave up on Drs after he pointed me to Paitent. co. uk he agreed to start at 15mg pred, but when i gave him print out of Bristol reduction plan he just smiled & that was the end of conversation. I now just use him for medication. I am slowly reducing down to 7mg, once feeling OK on that, I have downloaded info from Royal College of Physicians. Management of PMR. i will place that in front of him & wait for reaction. I have used the 3 main forums to get me this far, I cant thank the GIRLS enough, Take care & keep taking the tablets. Dave

[Hidden]

When told to reduce from 15mg to 10mg overnight, my gut feeling was that this was too much. It had taken 8 weeks on 15mg to get the blood tests to return to normal. I found guidelines on the internet and successfully argued to go from 15 to 10 in 2 stages. Well the second drop was very very tough.

I then changed to another GP within the practice. What a difference. Her policy was slow but sure and it worked as I came off steroids in just over 2 years. At the low doses she even slowed the reductions down. She was very supportive and quite honestly I think she was quite happy as long as I made some effort to reduce however slowly.

I would advise anyone to change their doctor if they can.

[trish29]

Hello kingharold11.. I wish that the GPs knew how we feel when we have a steroid reduction Day or week.. The reduction gaps that I have been reading about on this Forum are quite large .. I am supposed to do half a mg a month and that can cause problems particularly with Giddiness and Nausea.. I start on Leflunomide this week to start yet another reduction plan so we will see what happens there ..Do these GPS and Rheumatologists not realise that we don't Pop steroids for the sake of it . I hate the steroid Euphoria and exhaustion that I get most days which really stop me getting on in my Daily Routine, BUT I know that this medication is not doing me any good and causing me not to be able to walk even though I have just had injections to my spine and the pain level is awful .. Why do we have to get information from other sufferers and think to ourselves ( that's how I feel !! ) Without this PMR/GCA FORUM we would get nowhere . I agree with you that when you have the muzzy heads and exhaustion that its best to stay on a level dose of the steroid . Good luck trish29

[Greensleeves]

Hi Wendy, some of these doctors haven't got a clue. I'm changing my GP practice as soon as I get my next repeat script, My GP wants me off Pred next time I see him in 2 weeks. I've already rapidly gone from 7mg to 3mg over a very short period of time and now know I need to go up again to increase the quality of my life. None of us actually want to be on steroids and suffer the awful side effects but crikey I'd like to see my heartless GP experience just a week of PMR and steroid use with all the sweating , foggy head , water retention and just generally feeling rough.

Lets do it our way as we know our bodies. Take care xx

[kingharold11]

Thanks for all your replies everybody it helps to know I am not alone in this Wendy