New drug & different pred regime

Saw the rheumy yesterday and explained that I have not been able to get below 12mg of pred even whilst taking 10mg of leflunomide. In quite a bit of discomfort, hips and shoulders mainly. Low energy levels and apparently a bit grumpy!!

Been down the reduction route quite a few times over the last 3 years and always struggle at this 12mg and below mark. Had azathriprine (made me seriously ill), methotrexate (did nothing), mycophenalte (did nothing) and leflunomide which at 20mg a day gave me severe stomach pains.

Advised to now take 20mg of pred one day and 10mg the next alternating each day and to also take anew DMARD called hydroxyculroquine (not sure of dose yet).

I also had a long discussion on the merits of androlic acid and he is convinced I should remain on it for the time being. Lots of long scientific explanations with un-memorable names in the justification.

So time will tell, off to swallow the first dose of 20mg of pred, let's see if I feel any better at the end of today stroke tomorrow morning?

3 Replies

  • Appears to be an odd dose regime? It's not one I've come across before, why not just prescribe 15mg daily? I think with such a massive daily discrepancy that your body/systems will get confused and won't know where they are going?

  • I was concerned by the weird regime. I think he is expecting me to feel better on one day than the other. Whether this happens or I just end up in a mess remains to be seen! Even stranger to me was that after 4-6 weeks I should decrease the 10mg days to 9mg and continue in 1mg reductions every 4-6 weeks. To be fair I'll basically try anything to get me comfrtable but the jury is out on this one 🤔

  • What a bizarre dose regime - your poor body! I can only imagine he's maybe trying to get you to double dose on alternate days - supposedly less associated with side effects. However it isn't said to work as well for PMR and not at all to be recommended for GCA. Originally they said it shouldn't be used until you are down to 10mg - I used it for a while but couldn't get below 17.5mg on alternate days. Then I had a flare that was query GCA-type symptoms (double vision) and was told I had to take pred daily. I've never tried the double dose style again.

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