Rheumy Tapering Plan - Advice please

[Baner]

Have been on 10mg pred since May, and after still feeling very unwell, Rheumy suggested trying MTX, and continue on 10mg pred. Started on MTX 20mg tablets for 14 weeks and after suffering bad nausea changed to injections in May. Noticeable difference, nausea almost gone and generally feeling much better, apart from fatigue which is just as bad. Rheumy pleased with last blood tests and wants to to start tapering pred. His suggestion was continue with 10mg Mon, Wed & Friday and go down to 7.5mg on other days. Continue for 3 months then stay on 7.5 every day. I am thinking a drop from 10 to 7.5 is a bit of a big drop, so thinking of upping that but not sure what to.

Would appreciate your thoughts.

Got 2 blood tests booked for Aug and Oct and next F2F with Rheumy in December. Have been told to ring Rheumy nurses helpline if any problems but have tried that before and it takes at least 3 days before they call back.

[DorsetLady PMRGCAuk volunteer]

Might work -but if you reduced 1mg per month -you’d be in the region he wants.

No experience of MTX personally, but other who are will be along soon.

[Baner in reply to DorsetLady]

Many thanks, I’ve been reading your tapering plan in FAQ’s in anticipation of tapering, and was thinking 1mg drops seems more sensible. Can’t remember last time I felt so much better don’t want to rock the boat by dropping too quickly

[DorsetLady PMRGCAuk volunteer in reply to Baner]

No of course you don’t -and I think the 10/7.5mg style is harder on you.. just my opinion -I know some like it.

[piglette]

Personally I am gobsmacked by a reduction of 25% to 7.5mg from 10mg. There is no way my body would put up with it, but you may be more resistant than I am. I found 0.5mg a month below 10mg worked fine. I suppose by December you would be down to 7.5mg either way.

[PMRpro Ambassador]

They do think up some strange ways of tapering! We'd probably say use one of our versions and do 1mg per day to start. Perhaps he doesn't know you get pred in 1mg tablets!!

[Baner in reply to PMRpro]

If it wasn’t for this site I would have just gone ahead with his version but from how I felt from previous reductions and what I have learnt on here, felt 2.5 was a bit too much. I am going to start with a 1mg drop and see what happens. Have enough 1mg to last a while, then will have the problem of getting further supplies from GP, they will not give anything that they have not previously prescribed without you having an appointment. Currently there is a 3 week wait for a non-urgent appointments.

[PMRpro Ambassador in reply to Baner]

If you are short of pred - it becomes urgent - even an emergency! If they are going to be that stuffy about prescribing for a long term pred patient they need to make it easier! Book the appointment now

[Ann1A in reply to Baner]

Stopping pred is a genuine urgency. So much so that you should be carrying an nhs steroid card warning against sudden stops, in case of an accident. So tell the person on reception that you are on a drug that is dangerous to suddenly stop, that should allow them to make an urgent appointment, Or, belt and braces, you could consider a call to your your rheum helpline, and by time they reply you will either a) have got through to GP, in which case explain, or b) not... then ask for pred.

Good luck

[Viv54]

My goodness , thats such a big drop, i found i could not do 1mg at a time, you need to go much slower, the experts will be a long soon to help. I am so sorry you feel that ill, it certainly is a horrible illness, hope you keep improving. 🌷