60 to 50?

[cmgarner]

I was on 10 mg prednisone for 5 weeks for PMR, and feeling great. Then lovely GCA popped up. On 60 mg prednisone for 15 days, and yesterday titrated down to 50 mg. Slept 7 straight hours last night!

Today, my second day on 50, I feel creaky around my neck and shoulders, with moderate fatigue. Some left side head congestion (which was weirdly my first symptom of the GCA ).

Has anyone else had this experience? I thought all would be be ok; after all, the dose is just going from mega-gazillion to mega-gazillion “lite”. I truly don’t want to be on 60 again. Should I just ride this out for a day or two and see how it goes?

[PMRpro Ambassador]

Can you call your rheumy team? It may be that you just aren;t quite ready to drop that far - know they are high doses but some people need even more to get the inflammation under control. Not saying you do - but the pred only manages the inflammation, the disease is still there and active - and the fact you say it feels like the start of GCA is a bit worrying.

[DorsetLady PMRGCAuk volunteer]

Hi,

It could well be just steroid withdrawal - if so it will probably only last 2 or 3 days - so you could just wait it out. In my case when on high doses S/W was a few days of feeling a bit “Off”, a bit short-tempered but no real pain.

However I would say, 15days on 60mg may or may not have been enough - so if problems last longer than 4 -5 days or get worse you may need to go back up to 55mg. Even at high doses it’s still not really recommended to reduce more than 10% - so 60-55-50 might have been better.

Most of the time I did 5mg reductions, apart from 3 times -80mg to 60mg, 50mg-40mg and then 40mg-30mg. But I was on 80mg initially for 2 weeks and 60mg for 6weeks.

If you need to be on 60mg, much as you might not like it, you need to be on 60mg!

[SnazzyD]

I’m not you so can’t read your body but if it was me I’d ride it out unless you’re certain . Reductions even at high dose made me feel achey painy any time from day 1-4 and I felt heady and congested on Pred too. You might have a cold coming on too. If you slept 7 hours on 50mg then you may well have slept like a sack of potatoes. With side effects I did find that new ones pop up and go and the longer term effects on the body started coming in around after 2-3 months ish. After a while you get to know them as they come round again like old fashion. I often took Paracetamol and generally if that helped I decided it probably wasn’t GCA or PMR.

[cmgarner]

Thank you all for your input. I’m going to see how it goes - believe me, I’m monitoring this. Both of my physicians (PC and ophthalmologist) are available to me by text 24/7, and check on me every few days. I’m their new “interesting case”. And they are both carefully managing me.

My first appointment with a new rheumatologist is 3 weeks from now. I never got in to see the first one recommended to me, and when I told his scheduling nurse they had a poor system for new patient intake (I.e. 45 minute hold times ), the little dude hung up on me! Ha, ha, I guess I deserved that!