'You are being silly!'

[andieone]

I have had PMR for 2 years now and slowly reducing Pred.When I visited the rheumatologist last May I had recently incteased my dose to 10mg, after an increase in pain.She wanted to put me on Azathriopine as a steroid sparer.I told her I was concerned about the side effects and she told me I was being silly! She said the long side effects of Pred( above 6mg) were far worse? The side effects of Az can be monitored.

So she told me to come back in 6 months and in the meantime try to reduce to 6mg of Pred. My appointment is at the b3ginn

[SheffieldJane]

I think that I would have reacted in the same way as you. The Azathriopine side effects hardly sound like a bowl of cherries either. I would keep calm and carry on. Good luck! The advice we get seems to vary a lot, confusingly. PMRPro posted a useful research paper some months ago that found that Steroid side effects, at PMR doses were much less harmful than once supposed. Leaving only cataracts to be alert for and they can be remedied. So the message is to monitor your eyes.

[andieone in reply to SheffieldJane]

Too late! Cataracts have started, but as you say can be operated on.

[jinasc]

If a Consultant or any medic said to me I was being 'silly' I would have lost it.

If any of those steroid sparing agents contributed (with all their side effects) to affecting the basic illness, then yes it would be a no brainer.

Suggest you go to this link, read, download and take it with you.

Dr Eric Matteson works in the Mayo Clinic, is on the EULAR/ARC committee and is one of the world leaders in research for PMR and GCA. You can put his name in your research engine and read up on him.

practicalpainmanagement.com...

[andieone in reply to jinasc]

I think I was shocked and felt like a naughty child! She said the side effects of Az can be monitored with regular blood tests.She gave me a leaflet detailing all the side effects!

[KinnearD in reply to jinasc]

Thi link doesn't seem to work. Could you check it as I would like to read it. Xxx

[KinnearD in reply to jinasc]

Oops...okay got it below xxx

[PMRpro Ambassador]

She thinks does she? Well I don't agree and neither does this group of top experts in the PMR field:

practicalpainmanagement.com...

medpagetoday.com/rheumatolo...

Both articles about the same work just slightly different slants - but both agree the risks with low dose pred are greatly over-egged.

I haven't been at 5mg pred for more than a few months in the last 9 years - I have no apparent side effects. I was on methyl prednisolone for 9 months - now THAT was fairly horrible and I needed 20mg to get any relief. But all the side effects from that went once I switched.

I haven't tried azo - but there isn't the slightest study evidence that it makes any difference in PMR. Then there are those who swear by methotrexate - and my 4 weeks on that was nearly as bad as with methyl pred. So thank you - but I shall take my luck with the pred alone.

[andieone in reply to PMRpro]

Thank you for that.I wish I had the confidence to show my consultant that article!

[jinasc in reply to andieone]

Why not...............it is about time she learned that research is ongoing and progress is being made.

What is the use of progress being made if it is not shared. Think of yourself as a good teacher passing on information that is useful and helpful to others she might be dealing with.

If she turns her nose up.................then tell her.............goodbye I will see my GP and then ask him for another one.........but come here first in case someone knows someone good in your area.

BTW, I do someone who tried both Cyclosporin and AZA and both times ended up in hospital. Now I am not saying you or anyone else will have the same re-action, but Pred does what it is supposed to do and as it is an old powerful drug, we know all the side effects and 99.9% can be dealt with.

[andieone in reply to jinasc]

Thank you, I feel much stronger after everyone's advice.

[piglette]

If the side effects of Azathriopine can be monitored why on Earth can’t the side effects of pred be monitored? What on Earth is she talking about? I don’t think anyone can be silly about bad side effects. Is she taking Azathriopine?

[andieone in reply to piglette]

Thank you for your reply.She said if I went on Az I would have to have regular blood tests for any short term effects.The side effects of Pred are more long term apparently!

[piglette in reply to andieone]

She is saying that Az side effects happen really quickly so you need blood tests all the time, while this is not true of pred. Which one would I go for I wonder?

[patriciawhite]

Oh my oh my ,my Doctor said that to me a year before I was diagnosed when I was trying to make him believe that the constant supply of painkillers were having no effect . I am very live and let live but I have borne this arrogant insulting clod a grudge for life .Not like me at all !!!!I know it's not the subject but Its such a patronising demeaning way to address anyone .

[andieone]

Totally agree.I felt like a naughty child!

[GOOD_GRIEF]

I told my rheumy I could sue her for the consequences of untreated PMR inflammation as easily as I could sue her for the negative side effects of pred, and that since there was plenty of medical literature to support the treatment plan I wanted rather than the treatment plan she wanted (which was a quick reduction and MTX), I would likely win.

That seemed to knock the wind out of her.

I'm down from 20mg to 6.5 mg in 12 months, my second year of PMR. No flares. No long term side effects. Just progress in reducing and containing inflammation and continued overall improvement in health.

There's no difference between medical arrogant bullies and regular arrogant bullies, except maybe the stethoscope. Take 'em down a few pegs.

[andieone in reply to GOOD_GRIEF]

Wow, I wish I had your confidence!