Back on the horse!

[LemonZest11]

Hi Ladies and Gentlemen (?) ... last time we chatted I was having a bit of a flare, struggling on 4.5/4 taper, and then went back to 5mg pred. On advice from this special group, I have given myself a week of 10 mg. Finally feeling stable so reduced to 7.5mg today ... all good so far (I’m in Australia so it’s evening here so 12 hours after dose). I’m planning on staying here another day, and then down to 6mg (DorsetLady suggested this and she knows, right?). If all is OK, I’ll stay here for several weeks and then begin DL’s taper to 5.5mg. What do you think? 5mg was the lowest level that I felt well at previously, then I stuffed it up after that.

[LemonZest11]

By the way, I feel the most benefit from pred at around 10/12 hours after dose. Then by morning a bit of stiffness returns, only to disappear as the day goes on.

[Smokygirl in reply to LemonZest11]

Me too! Which is great cos That is when I’m at the Bridge Club!

[jinasc]

Sensible plan.................just remember, if you do not feel OK after a couple of days after taking the drop..............don't wait, go back to where you were and wait another 5 or 6 days before trying the drop again.

[DorsetLady PMRGCAuk volunteer]

I’m not always right - but I do my best!

Sounds good, but as said it’s just a plan, and take it as it goes, it can always be amended to suit circumstances.

Good luck

[LemonZest11 in reply to DorsetLady]

But do you agree with my plan? Needing reassurance.

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

Yes...but only if you feel okay - and only you know that! I would say stay at 7,5mg for maybe 2 or 3 days up to 5 days if necessary just to make sure before you drop to 6mg - again a few more days - just to make sure before you start the taper proper.

[LemonZest11 in reply to DorsetLady]

Thank you, after my stuff up, I am going to stick with your advice. 7.5 for a couple more days ...

[Smokygirl in reply to DorsetLady]

I’m sticking to your wonderful tapering plan dearest DL ( in the middle of 13.5 to12.5 at the moment) and I’m trying to be patient.

The ravenous hunger is a beast but the terrible fatigue is easing a bit depending on how long I sleep at night!

Can’t thank you enough—- and all my other advisors. You are truly amazing.

Huge hugs xxxxxxx

[LemonZest11 in reply to Smokygirl]

Aren’t we so fortunate to have this support?

[Smokygirl in reply to LemonZest11]

Thank heavens for the wonderful wise ones! They are the only ones that really know it all! xxx

[PMRpro Ambassador]

What time do you take your pred? The return of stiffness early in the morning is normal - the earlier in the morning you can take that pred, the less it will have to do and the sooner it will take effect. The stiffness might then manifest a bit while you are asleep however.

[LemonZest11 in reply to PMRpro]

I take it at around 7am. I know it has to be with food and I struggle to eat early, but with a few spoons of yoghurt (again advice from here), I will take it. Sometimes it’s not until 8am. Tell me about the benefit of early dose?

[PMRpro Ambassador in reply to LemonZest11]

The body releases the inflammatory substances at 4-4.30am and they start creating inflammation then. The longer after that you take the pred, the more there is for it to clear out and it takes a couple of hours to work anyway. The optimum time to take plain white non-coated pred is actually 2am, it is then at its peak at about 4am and the inflammation never gets a hold.

In the UK you could use gastroresistant pred and take it before bed. In the US you could ask for Rayos if you have a friendly insurance policy that will cover it (costs a fortune in the US) or a few people have obtained gastroresistant capsules and put their pred inside them. Rayos/Lototra (in Europe) was developed with a special coating which breaks down 4 hours after taking it - take it at 10pm, releases at 2am.

[LemonZest11 in reply to PMRpro]

That’s interesting, I didn’t know that. I take non-coated pred. Not sure how I can factor that in, but I guess, earlier the better.

[PMRpro Ambassador in reply to LemonZest11]

Some people find taking it before bed works well, especially if they go to bed late. We have suggested waking early, taking it with some yoghurt, turning over and going back to sleep.

Lodotra is available in Australia but no idea how easy it is to persuade a GP to provide a script nor how your system works for reimbursement,

gp2u.com.au/static/pdf/L/LO...

chemistwarehouse.com.au/buy...

[Smokygirl in reply to PMRpro]

Just want to thank you too PRMpro for all your wonderful advice and info.

Couldn’t do any of it without you ! Huge hugs xxxxx

[LemonZest11]

Agreed. The experienced women on this forum is now to whom I turn. Sacked the rheumatologist, GP is on board but I’m going alone at the moment, just taking the advice from the people who know.

[Smokygirl]

Sorry for jumping on your wagon Lemonzest. It just had to thank the wise ones for their unfailing help and expertise.

However I am realising that everyone’s experience is so very different.

At the moment I take my I uncoated Pred at 10:00 am after breakfast.

Before this I walk, cook , do housework and sometimes shop while my head is clear.

Two hours after Pred I am useless for another four hours and usually sleep it off. Then I’m fine again to go out to play Bridge !

We all seem to have very diverse journeys!

Huge hugs and every good wish xxxx

[LemonZest11]

Amazing ! Go girl, whatever it takes!