Prednisolone diary 11 - switching to methyl pred

[whisperit]

As I posted recently, I've newly developed myositis and my rheumy was keen to give high dose iv steroids. But past experience has been that even small increases in my normal daily pred dose of 4mg causes incapacitating side effects.

After discussion with endocrinologist, rheumy agreed to try some variants of pred in case that might help.

So I first tried 20mg hydrocortisone a day (roughly equivalent to 5mg pred, but with a shorter half-life). Unfortunately, that also tripped off my sweats, shakes, muscle tension and nausea. A mix of hydro and pred was no more successful.

Finally, I took the plunge into a significantly higher equivalent dose of 12mg methyl prednisolone. Although I got the side effects, they were much less severe, so I've been able to persist with this. Don't ask me why.

This new dose has not improved my chronic fatigue or myositis symptoms - I will need more aggressive treatment for the myositis in any case. But at least it gives me an option for when I need increased steroid doses in future.

So that's my thought for today - even though hydrocortisone, prednisolone and methyl pred are very similar drugs, if you are having trouble with one, you might benefit from trying another. x

[PMRpro]

I have said this many times too but in my case prednisolone was no problem and now prednisone in the form of Lodotra is perfect. However, methylprednisolone was my bete noir - literally! I grew a very fetching black beard (I'd been white for 20 years but head hair didn't get any colour!), put on shed-loads of pred weight and had severe muscle wasting. All reversed as soon as I came off it. It would have been more bearable had it worked - but 20mg at night brought about 50% relief by lunchtime. Taken in the morning I started to feel half there by tea time.

One warning - make sure you NEVER take a quinolone antibiotic while on methylpred. Each of them can chew achilles tendons on their own - together it is even more likely. Not good.

[whisperit in reply to PMRpro]

thanks for that, PMRpro ;P

I am baffled by how differently we seem to respond to what are essentially the same substance - and one that is an almost exact analogue to a natural product, to boot! Have you any thoughts about why mp might have had that effect on you (obvs, I am particularly worried about your muscle wasting problem)? x

[PMRpro in reply to whisperit]

No idea at all. The methyl group added to the basic structure of prednisolone is felt to enhance the antiinflammatory effect - and if it enhances that it can also enhance other less desirable effects. That is the nature of the beast. But I suppose it is all to do with how your body reacts and that is the case for anything - not everyone reacts with the same adverse effects with anything. Let's hope it last that way for you.

[misty14]

Hi Whisperit

Sorry to hear your myosotis needs very aggressive treatment but great that you tolerated the methyl prednisolone better than the other alternatives!. Good that your doctors could observe and see what's needed. It helps fit in the pieces in the jigsaw puzzle that we can frequently be with these illnesses. Thanks for sharing this as it will help others too.

Will you be trying higher dose methyl pred for the myosotis soon?. Do hope you get improvements, you've suffered a lot. X

[whisperit in reply to misty14]

Thanks misty,

The future is a mystery. At my last rheumy appmt, he said iv mp followed by rituximab. This week, the rheumy nurse said azathioprine was now the favoured option. I hope to find out when I see rheumy again on monday!

x

[misty14 in reply to whisperit]

Good luck Whisperit for your appt on Monday. If only the nurse and Rheumy could speak in one voice!. It's why I don't go to the nurses just stick to the Consuktant because I don't want differing opinions!. If it's Azathioprine I've taken it to good effect but you just have to watch your blood counts!. Any questions you might have about it just ask, I'm happy to help. Fingers tightly crossed for youX