reduction inmeds.

[j-e-a-n]

Hi everyone. I was diagnosed in September with GCA and probable PMR. I was put on 60 mgs of preds and have gone through hell with the side effects. I went to see my Rheumy 6 weeks ago who told me to go down to 50 mgs for 3 weeks and then 40 for 3 weeks, which I actually did for 2 weeks each and was alright, so thought I would try for 35 and was alright, then tried for 30 just over a week ago and felt quite ill, so went back to 35 a couple of days ago. I saw my rheumy again yesterday, told him how ill I felt and what I had done and asked if it could be a flare, and mentioned the internet and this forum and showed him the dead slow reducing plan and asked him what he thought about it. He then asked me if I was prepared to manage my own medication, in which case I wouldn't be able to go back to his clinic.!! I was quite shocked and said no of course I needed his guidance, and he then suggested I see him again in 2 months, and in the meantime reduce to 39 for 3 weeks, then to 20 mgs for another 3 weeks, then to 15 mgs until I saw him 2 weeks later. On the 30 I reduced to, some of the pain came back in my head and face, and I have had really bad lower back pain and have just felt really weak and exhausted, and don't know what to think Is it too much too soon, as it feels ??? I went back up to 40 today and have definately felt better as the day has gone on. I will be seeing my GP on Monday and intend to ask his advice. I had full bloods done yesterday and will have the results by Monday. Sorry this is such a long post.

[DorsetLady PMRGCAuk volunteer]

Hi,

Rant on! Where do some of these people come from.

Much too quickly a reduction in my view. I decreased in 5mg drops from 60mg down to 25mg and spent about 4 weeks on each. My bloods were done every four weeks, and I wasn't allowed to reduce unless each reading was ok. This was overseen by my GP - did see Rheumy twice, but a complete waste of time, in my view. And too arrogant by half! So I didn't go back to him.

When you see GP try and get him around to your way of thinking to reduce more slowly - without being too negative about the Rheumy, or putting too much emphasis on what you've learnt on here - they do get a bit touchy about that. Understandable

I suppose. Some GPs seem frightened to go against the so called experts, but if you explain the problems you're having with the quick reduction plan he may be more reasonable. Good luck.

[j-e-a-n in reply to DorsetLady]

Thank you Dorset Lady. I will see if my GP and I can work together on this and then not bother with my Rheumy any more. I will be careful not to say too much about the Rheumy to the Doc, he seems to be quite open to my requests so won't alienate him.

[bposiv in reply to j-e-a-n]

jean what dorset lady says is deadright stick with gp and make sure your blood test are ok and do small drops as recommended by gp were all different in our body responses battle on and good luck

[j-e-a-n in reply to bposiv]

Hi bposiv, thank you for your reply. I will stick with my GP

[PMRpro Ambassador]

Take this to your GP and discuss it with him:

rcpe.ac.uk/sites/default/fi...

Remember - the pred side-effects may be hell, but there are none that are as bad as being blind.

As for the rheumy - not being able to see HIM again seems almost positive! How unempathetic. However, at present you probably don't really need the "Dead slow..." approach, it comes into its own from 15-20mg, the level PMR patients start at - but you probably DO need to reduce in 5mg steps rather than 10mg at a time. 5mg every 2 weeks is the same as 10mg every month - but less of a shock to the system. The 10% rule was recommended by top PMR experts years ago, it's probably no bad thing for GCA doses too.

[j-e-a-n in reply to PMRpro]

Thank you PRM pro. I will sort this out with my GP when I see him next Monday.