What do I do when I get to Zero Pred?

[Tabletennis123]

Good afternoon and Happy New Year to everyone out there. Such a fantastic and knowledgeable 'family'. Bless you all.I am due to go to New Zealand on 17th Jan for 6 weeks. Lucky me. My husband's 70th. Fair amount of travelling when we get there.

I'm currently following DL's 5 week slow tapering. Working well. Am now on 1.5. Symptoms are just a bit of fatigue and mild shoulder ache.

My Rheumatologist has given me sufficient Pred in case I have a flare when I'm away. And I have a Pill cutter for the 0.5's.

[Another health issue, shown from scans, is probable 'chronic spinal stenosis' in lower spine . Just paracetamol for that. This actually causes me more problems (severe discomfort both legs) than the PMR. Seeing a consultant in March (NHS!) to see what he thinks....]

My question is - when I get to Zero on the Pred for my PMR, what do I do? Just stop? And the Omeprozole too?

I hope this is not too much of a dumb question

Many thanks

[piglette]

I would possibly try zero one day then go back onto your previous dose for say six days and then zero again if you feel OK. Then try five days on old dose. If things go well you can work down to zero full time. Normally you would be able to stop taking the Omeprozole with no taper, but it is probably worth you checking with your doctor if you have been on it for some time.

[Tabletennis123 in reply to piglette]

Thx Piglette. Sound advice. Re the Omep - I can never get hold of a doctor, so might try asking Rhuemy.

[piglette in reply to Tabletennis123]

Why not, just a thought.

[Hunter134 in reply to Tabletennis123]

I was told by my Dr.to wean myself off slowly.The omeprazole.

[Tabletennis123 in reply to Hunter134]

Than you Hunter 134. I'll make sure I do when I get to speak to a Doctor or my Rheumy. Thank you.

[HarcHill in reply to Hunter134]

Me too, over two weeks.

[Tabletennis123 in reply to HarcHill]

Thank you Harchill. Learn so much from this site

[HarcHill in reply to Tabletennis123]

I remember it being difficult becausecthey were capsules rather than pills you can cut!

[Tabletennis123 in reply to HarcHill]

Oh yes. Yet another challenge!!

[DorsetLady PMRGCAuk volunteer in reply to Tabletennis123]

Not really, if they cannot be cut, the just drop it for one or two days first week [but not consecutively] and then build up the number of days you don't take it , and carry on until all days are without.

You are already following my 5 week taper for Pred, so same principle...

[Tabletennis123 in reply to DorsetLady]

Gotcha. Thank you DL.

[PMRpro Ambassador in reply to HarcHill]

Capsules can be opened and the contents split, mixing it with apple sauce or something on a spoon to take it. Pharmacists have suggested that,

[Tabletennis123 in reply to PMRpro]

More good advice!

[HarcHill in reply to PMRpro]

That's what I did - took 50% of the grains from inside the capsule with a spoon of yogurt

[Tabletennis123 in reply to HarcHill]

👍

[Mewy in reply to piglette]

Exactly. That is I have tapered to zero. Sometimes it takes more than one try but what is 1 or 0.5 mg of PRED? Not that much.

[piglette in reply to Mewy]

The thing is just a tiny bit of pred does seem to sometimes make a world of difference.

[Tabletennis123 in reply to piglette]

Seemingly Piglette

[Gossiplady in reply to piglette]

hi piglette! Well done! We are getting there. I stopped Predisolone on Christmas Day, after an incredibly slow taper, but I hope it has worked. Omprezole is a different game for me. Was taking 20mg Omprezole for nearly 2 years then I decided to ask for 10mgs. I thought it would work out as the Pred reduction, but I then found I still had to take it every day! I then tried taking it every other day, but symptoms returned, not dreadful, but still with me, So as I say, no Pred for 2 weeks, but I have returned to Omp every day. I will give it a couple of weeks and then try alternate days again. Keep smiling. We will get there!

[piglette in reply to Gossiplady]

What a lovely Christmas present

[DorsetLady PMRGCAuk volunteer]

I’d be inclined not to taper any more before or whilst you are away, especially as you mention fatigue and shoulder pain..

I didn’t -and certainly not when I went to NZ to visit daughter. As you say, lot of travelling

a.. to get there, and b. when you are there.

Are you visiting both islands?

Request assistance at airports -always long walk with long haul flights- and carry meds in hand luggage with copy of prescription..,

As for when you stop Pred -you just stop -after following the slow taper [you can make it 7 weeks rather than t if you wish] - but be aware of any symptoms and that adrenals may will be stuttering for anything up to 12 months. So have some to hand in case required.

As for Omeprazole-you need to taper that -over a few weeks -unless you still need them for other meds.

Think about stopping both meds in future -but for now look forward to holiday and enjoy…

[Tabletennis123 in reply to DorsetLady]

Thank you DL. Yes, visiting both islands. And your reply makes sense too. I hadn't realised that the adrenals could stutter for up to 12 months ... The shoulder is not a pain. Just a mild ache, which could even be just to do with tension? Thank you fir your prompt reply

[DorsetLady PMRGCAuk volunteer in reply to Tabletennis123]

Good - enjoy - and shoulder may be tension- but just be aware.

I’ve visited twice, and intending to go back - did think about this Christmas just gone, but too much going on with daughter’s family, so eyeing up 2024/25… all things being equal…

[Tabletennis123 in reply to DorsetLady]

Thank you for your kind words DL. Am sure we'll enjoy if we don't go crazy and I hope you do get to go again.

[PMRpro Ambassador]

Well it shouldn't be a question for a while yet since that last 1.5mg might take 6 months!!! And you would not be the first if you discovered 1/2mg was keeping a lid on things but zero didn't - so you do a slow taper from 1/2mg to zero treating zero as if it were the new dose. But none of it bevore you get home and had a recovery period!! Travel is very stressful, even when it is nice stress,

The omeprazole needs to be tapered too at the end - depending on your current dose it is usually half the dose for a few weeks, half again if you need too and then drop odd days like DL's slowed taper so you don;t just stop cold turkey as that can result in rebound acid protection and be a pain.

Airport assistance is a must even for any small airport you don't know. Traipsing down stairs carrying handbaggage needn't happen, nor standing around in queues or waiting for anything. I got caught out at Seoul - relatively small airport terminal and it was just metres from check-in to security and then to the gate - BUT the priority queue was longer and slower than the normal one! I was standing in the middle of boisterous children for ages and then there were no seats at the gate. My priority pass meant I was taken to a separate area with lots of seats.

Assistance with a wheelchair means you ALWAYS have a seat and don't have to panic you don't know where to go.

[Tabletennis123 in reply to PMRpro]

Thx PMRpro. This is more complicated than I thought!! I'm glad I posted. It seems it may be wise not to taper at all and stick to 1.5 for 6 weeks. Is that what you are suggesting? And then pick up DL's slow taper when I get back?

[PMRpro Ambassador in reply to Tabletennis123]

I think that is a VERY good idea!!!! And I suspect so will DL!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

You’re right, I do.

[DorsetLady PMRGCAuk volunteer in reply to Tabletennis123]

Yes… and I agree with PMRpro

[Gossiplady in reply to PMRpro]

Hi PMRPro! Thank you for the advice given on tapering Omprezole. Much appreciated!

[Tabletennis123]

Well I reckon everyone here knows what they're talking about so that's what I'm gonna do. Thx to all. xx

[DorsetLady PMRGCAuk volunteer in reply to Tabletennis123]

Worked for me… so that’s all I can go on… 😊

[PMRnewbie2017 in reply to Tabletennis123]

Ditto too.

[agingfeminist]

1.5mg is such a piffling dose...stick with it...and stick with omeprazole...and taper both slowly when you get back (such good advice here)...unless you need the omeprazole because you normally have gastric problems. Have a great trip.

[Tabletennis123 in reply to agingfeminist]

Thank you aging feminist. Never had gastric problems but they still want me on Omeprozole for some reason

[Viveka in reply to Tabletennis123]

That's because some of them do a one size fits all response to what meds they think need to accompany pred and don't take individual circumstances into account. eg Omeprozole and AA. And when we are vulnerable we don't question things. Once you are back taper the O and dip the pred in yogurt when you take them and you should be fine.

[Tabletennis123 in reply to Viveka]

Will do. Thx Viveka

[redyrun]

First of all I rejoiced , then went down the pub and got pissed that my Pred journey was over . Seriously … then I halved my omeperazole dose for 2 weeks then used over the counter Zantac for a while when I had an upset tummy , now all is well thank goodness !

[Tabletennis123 in reply to redyrun]

It's all so tricky isn't it. I'm hoping mine will be straightforward when I get to Zero as I've been managing well. But I'm definitely not starting to taper again till my return and will take this Omeprozole reduction seriously. Thx Redyrun.

[PMRnewbie2017]

A word of warning. Zantac (aka Ranitidine) has been withdrawn in uk so you can't buy it otc. I've just looked online and it seems to have become a bit confusing. I saw Zantac 360 which is actually Omeprazole!! Then another product containing Famotidine which is ok as it's the same class as Ranitidine. Anything ending xxazole will be a PPI (proton pump inhibitor) which is what you are trying to get off of. Hope i haven't confused you !!

[PMRpro Ambassador in reply to PMRnewbie2017]

Ranitidine is withdrawn worldwide I think. The habit of using substance names does help ...

[Tabletennis123]

Thx PMRNewbie2017. I am a bit confused actually but that's only because I know so little about Omeprozole. But I think I can refer to this log at a later date, when I'm at Zero, and it'll make more sense then? Thank you!