On my Final Month ! ( I Hope🙏)

[Stifffingers]

Hello, lovely People at Health Unlocked.

Hope you are all doing well, during these awful times.

Just a bit of help/ advice please. Was diagnosed Sept 2018 . Like many others , went through all the “Whys & How” ... Stress? , Virus.? Hereditary? Etc. Remember getting the wrath of PMR Pro, at the beginning, for trying to do too much. Anyway 18 Months on, I’m approaching my last Month of medication.

Unfortunately , I have had 2 of my Rhumatology Appts cancelled , so I,m now approaching this Final Month , with a question mark hanging over me. I’ve had my Blood tests results ( which I was asked to bring with me) Mean nothing to me. Cannot get an appointment with my Surgery( No Sir it’s not an Emergency scenario) .

I,m currently on 2 mg a Day , been Tapering 1 Tablet per Month, now April arrives and meant to reduce to 1.

Physically , I,m good ( we’ll goodish) . Over the last 6 Months I’ve coped on every reduction. Swim 4/5 times aweek. Yoga, and prior to the Covid 19, had just employed a personal trainer to , step up my stamina ,and stretch me , as I,m always very stiff, and inflexible. ( Was like that anyway pre PMR). The only thing I still suffer from , is my Tag line ....Stiff Fingers, and My Toes often go numb, especially noticeable when I get into Bed?.Sometimes my fingers feel if they are getting electric shocks to the tips. Mad old illness this one is.

So my question to you “Experts” is ...Do I just carry on this Month of April , till I’ve completed the Tapering? Has my PMR , burnt it self out ? ,which I read about in my early days after joining this site.

I thank you for reading this, and look forward to your positive replies.

Kindest Regards

Stay Safe everyone.

Would an upload of my bloods be of any use/ interest?

[PMRpro Ambassador]

Has your PMR burnt out? Who knows - because you haven't really been tapering to get to zero, you have been tapering to find the lowest dose that manages the symptoms as well as the starting dose did. You are still at 2mg - some people find 1mg is enough to hold it at bay, even though it is still awake and slightly active. Loads of people are on 2mg for some time and do really well at that dose but not lower - ask HeronNS for her story.

1 in 5 patients gets off pred in a year, by 2 years it is 1 in 3. But that leaves 2 in 3 who take longer, usually significantly longer. 2mg is also enough to replace adrenal function - if that is still practising and hasn't quite got things back to normal. And if you have no symptoms - then the blood markers are unlikely to show much. If you are on enough pred to manage the symptoms then no inflammation is being left long enough to trigger the liver to produce the proteins that create those raised markers.

So I would say proceed with caution, I would say slower than you have been. And with a modicum of luck - you WILL get off pred within a few months. But don't push it - any warning signs should be taken seriously. Doing it that way you won't be disappointed if it isn't quite as smooth a journey as it has been so far.

All the best!

[Stifffingers in reply to PMRpro]

The reason I asked, is that without a Hospital appt to see the Consultant, I,m kind of lost. I have come to you folks for advice. On my own back, obviously if I felt a bad reaction I would start taking the tablets again.

Regards

[PMRpro Ambassador in reply to Stifffingers]

Just keep on but a bit slower maybe. It IS a stressful time, your adrenal function is likely to still be a bit wobbly, it would be such a shame to spoil the ship for a ha'p'th of tar after doing so well. I doubt any rheumy will complain if when you get to them in a few months you are on 1mg - or, at least, they shouldn't.

[Stifffingers in reply to PMRpro]

Thank you kindly for the encouragement.

Interestingly, had some stress recently , affected my sleeping , concentration . That’s when my Fingers started to really hurt again. Soooo it’s STRESS!!! . Will take on board, and order another box of 1mg !!!

Regards

[PMRpro Ambassador in reply to Stifffingers]

Stress and PMR really don't play nicely together ...

[HeronNS in reply to Stifffingers]

Yes I had to hang around 2-2.5 for a couple of years and it is now taking me about another year to get from 2 to (I hope) zero. But maybe not. I haven't got to the stage in dead slow taper where I've had two consecutive days of zero yet, so we'll see.

[Stifffingers in reply to HeronNS]

Hi

Dead slow meaning....Down to zero?

I’m going to take all the advice I recd today, and stay at 2 tablets daily for a Month or so .

[HeronNS in reply to Stifffingers]

The Dead Slow Nearly Stop taper plan.

healthunlocked.com/pmrgcauk...

[Stifffingers in reply to HeronNS]

Ok got it . I think ?

Will revisit in the Morning .

[Stifffingers in reply to HeronNS]

Had to have another look.!

,

So I,m currently on 2 mgs a day. ( 2x1mg)

Would that mean for 6 days I stay on 2 then on the 7th go to 1.

Following week 1 mg a day for 6 days then 2 on the 7th?

Would that be right?

Thanks ...Guess I’m a bit slow myself !

[HeronNS in reply to Stifffingers]

You would take one new dose, but reduce the days of the old dose until you get to one day new dose, one day old dose. Then you start to add the new dose. So it becomes one day old dose, two days new dose. One day old dose, three days old dose, and so on.... Takes about six weeks.

It will be clearer if you write it on a monthly calendar. And you can adjust it if needed, just remember to keep track! It will be clearer too after a night's sleep.

[Stifffingers in reply to HeronNS]

Clearer? Lol. Going to get that nights sleep! Will try again tomorrow.

Sorry for appearing Dim.

Good night , and thanks, for your patience.

[HeronNS in reply to Stifffingers]

It's PMRpro's taper, she can explain it better.

[PMRpro Ambassador in reply to Stifffingers]

No, at first you take the new, lower dose on one day at a time, followed by several days of the old dose. Then a day of the new dose, a few days of old dose - repeated, always with one less day of old dose inbetween. The single days of lower dose get closer and closer together until you are alternating old and new. Then you increase the days of lower dose until you feel less good on the old dose days - that means your body has accepted the new low dose and you can take that every day now. Give it a week or so to be sure you are still OK at this new dose.

You are looking at at least 4 weeks to get from one dose to the next - but some people need to slow it down even more and take longer. Some, especially at this stage need an smaller step, a 1/2mg step. Really, for success, no drop should be more than 10% of the current dose. From 2 to 1 is a 50% change in dose - a big change for your body to get used to. So if you slow it right down it may work better.

[Stifffingers in reply to PMRpro]

Good Morning,

Ah ha ...... Think that makes sense!

Been here before with this question .

My 1 mg tablets are really Tiny. These can be cut??

[Jackoh in reply to Stifffingers]

I cut the 1 mg tablets all the time - I find I can only go down 1/2 mg each time. You can order a pill cutter from Amazon and they do the trick. Just out of interest I have two ( one bought for my daughter and then returned) One is a round cutter and the other is oblong in shape. The oblong one , I’ve found is much better.

[innasway in reply to PMRpro]

I am on 1mg for at least 5-6 years now. I tried to quit 3 times - no go. Symptoms returned. So, I am staying on 1 mg.

[PMRpro Ambassador in reply to innasway]

It is weird isn't it - I know quite a few in the same boat.

[BirmLiz]

Hi there,

Not an expert but have been lucky enough to have now gone over 3 years Pred free so here's my penny's worth! I think only you know if you feel well enough to 'give it a punt' and reduce again. This Puzzling Maddening Raging condition seems to affect us all a little differently and the journey to wellness seems also different.

On a practicial level - how easy is it at the moment for you to get Pred if you have a flare? We're all having to think a little differently at the moment and plan ahead if possible.

Every best wish foryour kicking the Pred habit

[Stifffingers in reply to BirmLiz]

Many thanks for your comments and thoughts.

As regards getting Pred, I have boxes of 5mg , 1 left of 1 mg.

Wont know of any issues until such time I request more. ( Subject to needing)

No doubt always handy to have supplies.....

Regards

[Stifffingers in reply to BirmLiz]

Grateful.

[Stifffingers in reply to BirmLiz]

oops sent to jinsac in error.

hopped anatomy bike. went to the Drs and ordered some more tablets.(in case)

[jinasc]

If it was me, I would stay exactly on the pred you are taking currently.

Why take the chance, the current climate means that whether we know it or recognise it, we are all out of our comfort zone.

Two or three extra months...........will do no harm and it will also give more time for your Adrenals to wake up and become fully functional.

Remember you only started on pred September 2018............the batting average for remission is 5.9 years. So you are ahead of the game at present. Don't rock your boat.

I am not surprised you have had two appts cancelled and if you think about it. and your GP surgery has said. No, you are not an emergency you are just looking for re-assurance and you came to the right place.

Stay safe and stay on your pred and in your . 🏡

[Stifffingers in reply to jinasc]

Thank you. Just a heads up. The Hospital appointments were cancelled Pre Covid 19. Just no Drs to see me.

So you are saying don’t taper to 1 tablet. Stay on 2.?

Regards

[Polypoly in reply to jinasc]

Hi - this advice is on the ball, I was trying to decide on a pred drop (from 2.5).

Thank for posting this idea, as others will heed it as sensible, especially in the current stressful days we all face ahead.

I’ll wait!

[jinasc]

Short answer - YES .

But as always, Your body, your decision. xx

[Stifffingers]

thanks for your advice.Jumped on my bike ,cycled down to the Doctors surgery, and ordered another pack or 2 of 1mg.

[PMRpro Ambassador in reply to Stifffingers]

JUMPED????????

[Stifffingers in reply to PMRpro]

Metaphorically!

[PMRpro Ambassador in reply to Stifffingers]

Phew!!!!!!

[DianeA1]

Hi, I am down to 1 mg after 2 yrs 3 months (dx'd Jan 2018) and have opted to reduce by .25 mgs /month at this time. I follow DorsetLady's taper plan. The point is that I am trying to ease off the Pred very slowly to be able to catch a flare and/or to let my adrenals adjust.

Just my 2 cents worth as we are all different.

All the best

[Stifffingers in reply to DianeA1]

Well that’s encouraging.

Thank you Diane

[S4ndy]

My rheumy advised not to change anything at the moment.

Blood tests for inflammatory markers pretty useless as an indicator as I am waiting on tooth extractions which have now been cancelled understandably. Ongoing inflammation of surrounding gums too. Just had another 2 courses of antibiotics to stave off infections. More worried about Sepsis than the virus so being vigilant!

I am on 3mg of pred a day and haven't been able to get an appointment to see my rheumy since June. I have taken to writing to him and he replies with his advice. Maybe that would work for you.xxx

[Stifffingers]

thank you, for taking the time to answer.

gargle in warm salt water.!