Wee update - still a newbie

[Theziggy]

HI - here is my med info (so far)

My PMR began on 16th March

Eventually the 4th GP I saw, although he didn't know what I was suffering from. after raised inflammation markers in my blood tests put me on prednisolone

21st - 27th April 15mg

28th - 3rd of May 10mg (I think he was worried about the steroids and my diabetes and remember he did not know it was PMR, however flare-ups increased so I had to phone him)

4th May - 24th May 15mg

25th May - 25th June 12.5mg

Then I saw my rheumatologist on 25th June (normal waiting times for Rheumatologists in Northern Ireland are 2.5 years so I was fast-tracked)who diagnosed me and put me on this tapering programme of meds

15mg once daily for 2 weeks

12.5 mg for 1 month

10 mg for 1 month then reduce by 1 mg every month, contact surgery if any problems

So this is the end of the first fortnight for me, I have had two minor flare ups during that time and am apprehensive about the tapering off.

Any advice or tips folks?

[Hidden]

Hi Theziggy! Happy to read you were "fast tracked!" 2.5 years... REALLY? WOW!

I have both GCA & PMR, so my tapering plan is much different and I started at 80mg, so I won't comment on your tapering plan, except to say GOOD LUCK! I hope you can use the Rheumy's plan to taper down with no more "flares!" Fingers crossed. And yes, we are all apprehensive about tapering... but at the same time we all can't wait to taper. It's a double edged sword, isn't it? Best of luck!!!!

[PMRpro Ambassador]

Try to negotiate a slower reduction to 10mg - some can manage that, many don't.

You say you have already had flare-ups - or are you trying to do a normal lifestyle because you feel better? That rarely works. All the pred does is manage the inflammation, the actual disease process is chugging away in the background and causing your muscles to be intolerant of acute exercise. If you try to do too much they will protest and you will think it is a flare when it isn't really.

This may help you understand the challenges:

healthunlocked.com/pmrgcauk......

[Theziggy in reply to PMRpro]

Thank you - I don't have any contact with my Rheumatologist until 6th August when I see him again - by which time I will have been on 12.5 for a month and will know if that is working of not. I admit when I feel 'OK' I do walk a lot, cause I feel I can and should, trying to bring BG levels down after meals due to diabetes - a bit of a balancing act.

[Theziggy in reply to PMRpro]

Last 3 pain free days I have walked over 50K - the steroids are sending my diabetes type 2 into overdrive (I have been type 2 for 10 years - no meds - good diet and exercise) I am seeing humungous blood sugar levels so am walking to try to reduce the BG levels

[PMRpro Ambassador in reply to Theziggy]

Good lord - I doubt many others could manage that! I assume you have also cut your carb intake drastically?

[Theziggy in reply to PMRpro]

I have embarked on the blood sugar diet recently - Dr Michael Mosley espouses it but it was pioneered by Professor Taylor at Newcastle University and tested on TV recently in a 2 programme series about diabetes and reducing calories - similar to another show about carbs on another station - (they used the same 800 cal diet) . I did this diet before and lost 1.5 stone in 6 weeks.

Yesterday over 12K walked

[DorsetLady PMRGCAuk volunteer]

Hi

Agree with PMRpro. I also think at least a month at the starting dose is required to get things properly under control, but many Rheumies go for 2 weeks only.

You may achieve 2.5mg drops to 10mg, but bearing in mind you’ve already had problems on 15mg it seems doubtful! Many find it too much. Think you probably need to discuss slower plan.

Not sure if you’ve read this, but may help (apologies if already sent) -

healthunlocked.com/pmrgcauk...

[HeronNS]

Remember you are not "tapering off". This will only come when PMR is no longer active and that nearly always takes several years. The best way to achieve your lowest best dose, without flares which necessitate increasing the dose, is to proceed very slowly. As we frequently say, "It isn't slow if it works". Because I proceeded very slowly I achieved a dose of 3 mg from 15 start within a year. But for the subsequent two years I've been mostly at 2 mg,sometimes a bit higher. There is no way, even after three years, that I'm ready to "taper off". The dose I've been on for so long comes with a minimum of side effects and my doctor is perfectly happy with me staying at these low doses as long as it takes.

[PMRCanada]

Oops, sorry!!

Wrote a reply to Mamici1 re her latest blog post, and accidentally posted as a reply to the conversation you started.

For what it’s worth Theziggy, I’m in the early stages like you and my Rheumy told me to go from 20 to 15 to 12.5 in six weeks. I had a flare and stiffness and some pain in the morning. CRP went up to 10 so back up to 15mg of Pred again for last month.

When I see Rheumy next week I am going to suggest slower taper, maybe 1mg a month, taking into consideration my daily wellness/symptoms.

Hopefully you can be supported in a way that meets your needs moving forward. Learn to listen to your body and try and find balance of activity, rest and diet (things we control).

Not sure if this is helpful as I’m a relative newbie, however there are many more experienced and knowlegable folks on here who have responded.

Now I just have to learn to post properly on this Forum! ! (duh)

[PMRpro Ambassador in reply to PMRCanada]

You can delete posts on this forum if you want to: click on the box labelled More at the bottom of your own post which offers you Edit, Delete and Report. On other people's post you just get Report.

[PMRCanada in reply to PMRpro]

Thank you PMRpro!

[PMRnewbie2017]

It is generally accepted that tapering reductions should not exceed 10% and although many Rheumies assume that larger drops prior to reaching 10mg will be OK I think most of us will say that this is not the case! I couldn't manage 15mg to 12.5mg so went via 13.75mg. This is achieved by 2x5mg plus 1x2.5mg plus half a 2.5mg. Not wanting to risk 12.5mg to 10mg (as this is way over 10%) I went via 11.25mg and used Dorset Lady's reduction schedule. I've had no problems reducing and am now on 9mg having commenced on 30mg in Nov 2017. because of possible GCA with PMR. I take my Pred at 2am to catch the Interleukin 6 (cytokine) cascade which starts at about 4am. I want my Pred blood levels ready and waiting for the onslaught and am sure this is why I have no morning stiffness.

Welcome to the forum and best wishes for a smooth ride!

[Marilyn1959 in reply to PMRnewbie2017]

Hi PMR newbie, I too swooped to late night meds at one time, however my Rheumy went ballistic, since it can cause greater problems when adrenals need to kick in. Just thought I would mention it.

[HeronNS in reply to Marilyn1959]

If we are on long term pred I think it makes no difference, the adrenals are suppressed anyway.

[Marilyn1959 in reply to HeronNS]

Yes I know, but Rheumy was concerned about the stage when my own adtenals are supposed to kick in (7mgs?). Surely you wouldn't want to be taking meds around / just before the 4am curfew time at this point of tapering Heron? Note: my Rheumy has been a good one I. E. Facilitator rather than dictator. However he was very firm about his stance on this.

[HeronNS in reply to Marilyn1959]

Not an issue for me anyway as I've always taken mine at breakfast time. And 4 am? Isn't that for people who want to deal with their cytokine release and wake up feeling less pain? Again, never an issue for me as I find pred lasts the whole 24 hours.

It seems to me if you're going to deal with PMR for maybe as many as five or six years it makes sense to get the most possible benefit from the pred during the years PMR is active. As you begin to taper to a very low dose and feel the disease is in remission you could split the dose and gradually move it to the morning. it would be interesting to hear from the many who have split doses or taken whole dose late in the day how they managed when tapering to zero and how their adrenals responded.

The morning only regimen makes sense when you're on short term pred, or dealing with a disease which lasts only a few months.

[PMRpro Ambassador in reply to Marilyn1959]

I ALWAYS take my pred effectively at 2am (I am on Lodotra which you take at 10pm and it releases at 2am. Developed in association with rheumies.). It is wonderful with very few side effects.

If you shop around you will find plenty of rheumies who DON'T go ballistic at the prospect, accepting that the most efficient use of the pred to manage the problems is a good way to go. Once you get to 7mg and under is the time to worry about adrenal function. Until then - PMR is in charge.

[Theziggy]

Is it the case that I should be telling the Rheumatlogist how to dose me

a) I don't have any contact with him - so don't see him until August

b) a bit humble if trying to advise consultatnts about what they are deemed to be 'experts' on

By the way - the reason 4 doctors failed to recognise my PMR is that it is atypical - no pain in morning - sharp localised pain in area (e.g. groin, shoulder, hand) in morning which grows during the day to the affected area is so painful to move it is immobilised - lasts for 2 days then it is gone

[Marilyn1959 in reply to Theziggy]

In relation to your pain The ziggy, is it bilateral? Has the pattern of pain you mention changed since starting pred?

[Theziggy in reply to Marilyn1959]

Bilateral - but pred has lessened the severity of the flare-ups.

[Fracham]

Hi,

Reducing from 10 mg/day at 1mg is probably OK up to 5 months , after that I would suggest a much slower reduction, say by 1 mg over 2/3 months.

[Theziggy in reply to Fracham]

So, do I wait for my next Rheumatologist appointment and suggest a slower reduction it to him??

[piglette in reply to Theziggy]

If you can manage at 1mg reduction a month fine, but it seems you are getting flares. .5mg a month seems to be a better reduction.

[Theziggy in reply to piglette]

Well I am just 4 days into my reduction from 15 to 12.5 and 4 pain free days so far and plenty of walking

[piglette in reply to Theziggy]

Over 10mg a larger reduction seems OK under 10mg half a mg seems safest.

[Marilyn1959]

If Rheumy's suggested taper is working stick with it. You will know whaen reduction is too much trust me. Sometimes withdrawal symptoms from pred can become confused with a flare. With help from this site I realise that for me, when starting a new taper, I am ok for day 1 and 2. Day 3 and 4 I start to get stiffness again. If this has not gone by day 7 I know it is not withdrawal, but my body is not ready for next step reduction of 0.5mgs so I go back to my previous dose and try again once things have settled.

The main message is that it is ok to try reducing your way, which may mean smaller reductions, over longer periods at some stage (s) during your journey, than what your Rheumy may suggest. It is ok to take ownership so that relationship with Rheumy is ownership rather than dictatorship on either part.

[Theziggy]

7 days flare free now (touch wood) I am also 2 weeks into an 800 cal per day diet and walking lots and wonder if the diet and exercise are contributing to the pain free-ness ??

[PMRpro Ambassador in reply to Theziggy]

Who knows - but all good!