Hello, I've just joined.

[JulianJ]

Hi,

As you can guess I have PMR, I was diagnosed early in the year.

My doctor started me on 15mg prednisolone, 2 x 600mg Accrete D3 and 70mg Alendronic Acid. The latter is taken once a week.

I'm now down to 6mg prednisolone and with luck hitting 5mg in a little over a week.

I take the predn half in the morning and half in the evening, with this I get a better nights sleep.

I've managed to work through the entire period and haven't had to many issues, but I think I may have rotator cuff syndrome in my right shoulder, it's very painful. Will discuss with the doctor when I next see him.

I also try to get out for a walk lunchtimes, when I do it's about 3 miles and can be hard work, but I feel it's worth it.

[SheffieldJane]

Hello Julianj, you seem to have made really good progress in a relatively short time. I'm guessing that you are male. For some unfair reason men seem to get an easier ride with PMR. I would still be careful with these final reductions though - too fast or steep and you can upset the apple cart. It just remains to wish you well on the rest of your journey towards full health. If anything crops up, there are plenty of people on this forum ready to share experiences and advice. By the way welcome!

[JulianJ in reply to SheffieldJane]

Thanks Jane,

yes, I am male and I think I've made good progress and in what seems a very short time.

I do find that during the first 2 weeks of a reduction I need to add 1mg on the 4th day and again about a week later. I missed that when I was on 8mg and had to extend the time at that level.

The reductions seem to get harder each time and I can see them taking longer as the dose decreases. I'm expecting another 9 months at least on predn, but we don't know until we get there.

And thanks for the welcome

[DorsetLady PMRGCAuk volunteer in reply to JulianJ]

Hi Julian,

If you find reducing a bit difficult the following taper may help, it fools the body into not realising you are reducing

1st week - Sun & Thurs new dose -Mon, Tues, Wed, Fri, Sat old dose

2nd week - Sun, Tues & Thurs new dose -Mon, Wed, Fri, Sat old dose

3rd week - Sun, Tues, Wed, Thurs new dose -Mon, Fri, Sat old dose

4th week - Sun, Tues, Wed, Thurs & Sat new dose -Mon, Fri old dose

5th week - every day new dose

Plus as also advised, a 0.5mg taper might be better once you get below 5mg.

On the above taper I found once I’d completed week 5 I could usually go straight into next taper, the odd once or twice I stayed an extra week.

[JulianJ in reply to DorsetLady]

I'll keep this in mind, I'll be starting on 5mg in just over a week, so nearly there.

[SheffieldJane in reply to JulianJ]

No attempt to minimise your suffering Julian PMR seems to last 2 years +++ for the majority. You might go clear a lot sooner with a fair wind.

[JulianJ in reply to SheffieldJane]

Jane, yes, I know it can take some time. I should have gone to the doctor earlier, but you know what guys are like for that!

I'm not expecting to be off predn for at least another 12 months and I only started on 15mg.

Having said that, I've been luck with flares, only little bits as I would expect from a reduction.

I may look at tappers as Dorsetlady has suggested above.

Time, patience and a positive attitude help!

[PMRpro Ambassador in reply to JulianJ]

If you are one of the lucky people who just needs a very low dose to manage the symptoms you would do well reducing until close to that - and the fact you say the reductions are getting harder might be due to that.

Good luck with the rest though - maybe you will just sail all the way down...

[markbenjamin57]

Hi Julian

Thanks for your post here - it's always helpful to hear from relative 'Newbies' to PMR / GCA, and especially Men with PMR / GCA.

Good to hear about your progress. From what I've learned on this forum, it seems that us 'Lads' are not only less likely to suffer from PMR / GCA, and / or have a better long-term prognosis. But it also seems that the same Rules apply in assisting in our recovery - as is for everyone else with PMR /GCA!

MB

[JulianJ in reply to markbenjamin57]

Hi Mark,

yes, from what I've read it doesn't look like we have or have a better journey. I'm pushing myself, but not to a silly area.

It's very strange after 55 years of very good health to no be in a situation that I can't do so many things. Getting up and shuffling for the first few steps is not nice at all, adding to that the increased pain in my shoulder and I feel like I'm a few decades older!

[cassie1208]

Hi Julian

You are doing well and hope your further tapering goes well.

I have had PMR for 2 years I was down to 2mg but had a flare so having to up it.

I am interested in taking tablets in 2 doses to get a better nights sleep as I am awake around 4am with uncomfortable aches.

What time do you take your tablets ? Equal for the 2 doses?

I had a rotator cuff issue before diagnosis with PMR had saline injection, physiotherapist the lot but after I went on 15mg starting dose the pain went in a week. I am wondering if I really had a shoulder problem or was it the start of PMR. I don’t know to this day as I went from horrible shoulder pain to nothing.

This forum has helped me no end it’s amazing people just want to help.

Cassie

[JulianJ in reply to cassie1208]

Cassie,

I take my tablets around 07:00 and 19:00 every day.

I'm currently tappering every 4 weeks, but I can see that extending as the dose gets lower.

I wish I had your sleep pattern, I wake about 1,2,3 & 4 and then up for 5.

This means I'm tired by the time I get home from work and often just fall asleep for a bit, even a short nap works wonders.

I had pain in my right knee before the PMR, not related, but went away as soon as I started the predn, now the dose is lower it's back again

As for the forum, well 1 post and lots of replies, what more could anybody ask for

[cassie1208 in reply to JulianJ]

Julian

Yes there is plenty of advice whenever I need it - so supportive and I have used it frequently. I tapered to 2mg and I was fine until the stress of my move caused a flare so back at GP he said increase to 15mg for 3 day then back to 5 mg for a month then he would do a tapering plan-good GP - feel confident- no way going up to 15mg as that’s where I started 2 years ago - so took 10mg today and so much. feel better- you are good holding down a job and your evening naps are necessary.

It’s interesting that knee pain went away when you started the Pred. When I taper down I eat a pack of blueberries every day - seems to boost me up

Cassie

[DorsetLady PMRGCAuk volunteer in reply to JulianJ]

Hi again,

Just as a matter of interest why do you split your dose? Normal advice is to take full dose in one go in the morning.

Unfortunately as you get lower on Pred, the normal aches and pains of life do resurface. Higher doses are apt to mask most pains. Trouble is, you forget about them for while, and then there they are again like a bad penny.

[JulianJ in reply to DorsetLady]

Very good question.

When I hit 9mg I found that the pain was increased the following morning.

The half life of predn is low and multiplying by 5.5 came in at less than 24.

Did some googling and found some comments about splitting lower doses, so I gave it a try, started 5 and 4 and reduced to 5 and 3. The latter wasn't very good so a split 4 and 4. Since then I take the evening one down first then the morning one.

So far it's working okay for me and my doctor was happy with me changing, as long as it was working for me it was okay. He has now retired and I have an appointment with a new doctor on the 23rd. I hope he is as understanding.

[DorsetLady PMRGCAuk volunteer in reply to JulianJ]

Ok,

Well if it’s works for you then stick with it. It just you mentioned sleep as a problem, so I wondered if taking an evening Pred was making that worse.

[Patricia157]

Hi Julian

As you are now well below 10 mg you could consider cutting your one mg Pred into half. I have been dropping in half mg since I was on 10. I am now on one mg per day - nearly there.

Best wishes

[Sandy1947 in reply to Patricia157]

Patricia

How frequently did you drop by a half once you hit 10?

[Patricia157 in reply to Sandy1947]

Hello Sandy

I'm afraid my reducing wasn't straightforward as I had a hip replacement in November when I was at 7.5mg. I stayed at that level for about three months. I feel the answer is to only drop when your body feels ready to do so. I am staying at one on the advice of my doctor as I lost my husband last month. I will be having routine annual blood tests shortly so will discuss any further drop then.

[Sandy1947 in reply to Patricia157]

So sorry for your loss. Reduction must be done slowly. I’m at 16 mg now reducing 1 mg per week. Feel better than when I was diagnosed in June. Getting used to all the changes.

[Rimmy in reply to Sandy1947]

By contrast to you Sandy1947 - I am reducing by a mere 1mg a month - currently on 13.mg from 60mg - obviously reducing much faster initially - and much slower under 15mg. I am creeping down very slowly hoping this will help reduce the chance of any necessity to go back up - but I realise we are all 'unique'.

[Sandy1947 in reply to Rimmy]

Glad to hear of your progress. Maybe after 15 I’ll decrease by half a mg. I know it is all very individual.

[PMRpro Ambassador in reply to Sandy1947]

It is the decreasing every week that may cause problems - even half a mg can make a difference when you get to the region of the dose you are looking for and if you are reducing every week you can overshoot that dose and then be a few mg further on before symptoms return so you don't really know where you passed that dose. The symptoms don't alway return immediately - it can take a few weeks for the inflammation to mount up to the level it hurts.

[Sandy1947 in reply to PMRpro]

Thanks for the insight. I’m at 16 mg now and feel OK. Sleeping a little longer (just until 4:30 am). How much should I try next? I really want to avoid inflammation and a flare. Thanks

[PMRpro Ambassador in reply to Sandy1947]

Why not do 1mg every 2 weeks? That is usually long enough at this stage to have a fair idea of what is going on. If you can get to 10mg you can slow further - then every week would be far too much.

[Sandy1947 in reply to PMRpro]

Thanks

[JulianJ in reply to Sandy1947]

Sandy,

I started on 15mg, dropped to 10mg and am currently dropping by 1mg every 4 weeks. I don't think I could manage 1mg a week, but then I'm on 6mg at the moment. I'm sure my tappering is going to change to a slower rate shortly.

Good luck in your tappering.

[Sandy1947 in reply to JulianJ]

Thanks Julian. When I hit 15 I may reduce lower. I know 10 and below becomes more challenging.

[JulianJ in reply to Sandy1947]

I went from 15 to 10 with no problems at all.

8 was tough and I ended up at that level for 8 weeks.

Not looking forward to 5, but intend to use PMRpro's taper to see how that works.

As I'm often awake in the early hours, I'm also trying to 2am dose, did a 3mg dose this morning with another 3mg in the afternoon, going to give the full 6mg at go tomorrow, see if I can manage that.

Having only been on here a short time, the support is amazing and I'm sure you'll get plenty as you head below 10mg.

[Sandy1947 in reply to JulianJ]

Good luck with your taper. The whole illness is quite a challenge! In NY and stayed out later than usual. I feel like Cinderella having to run home!

[JulianJ in reply to Sandy1947]

Stayed out late, I find it hard to keep awake until 10pm, couldn't do anything late at the moment.

I do hope you had a great night out

[Sandy1947 in reply to JulianJ]

Did have a good time but slightly more pain today. New York has way more stimulation than NJ where I live during the week. Monday’s are generally rest days!

[JulianJ in reply to Sandy1947]

What's a rest day?

The best I get is a lie in until about 7am on a Saturday.

Good to hear you had a good time, sometimes extra pain can be worth it.

[PMRpro Ambassador in reply to JulianJ]

In the context of PMR, extra pain is often definitely NOT worth it! If you overdo things too much and your muscles protest you may be taking rest days for weeks, not days! Some doctors even believe that PMR can be triggered by excessive physical effort. Not sure - but it can certainly be the thing that brings unnoticed PMR to light. It probably was for me - after a high altitude walk with friends the DOMS took weeks to fade. And soon after PMR appeared in all its glory - I'd had niggles before but nothing I worried about.

[Sandy1947 in reply to JulianJ]

Thanks. I really appreciate all the pacing advice on this forum. The pain and fatigue does intensity when I deviate. Repetition really helps the message sink in!

[JulianJ in reply to Patricia157]

Patricia,

I'll keep this in mind, I'm sure that once I get to 5 and below it is going to get harder.

So far I've had so many useful suggestions and I haven't been here a day yet

[Jackoh]

Welcome JulianJ . Thanks for sharing your journey with us. So pleased it has gone well thus far. As you say need perhaps to take it more slowly from here on in so you don't risk a flare. All the best.

[JulianJ in reply to Jackoh]

Jackoh,

I think that being aware of flares has helped, I notice the change when I drop 1mg and let it grow, normally about day 4 on week 1, then I take an 1mg extra, then it's 7 days before I need a top up, after that I seem okay, but I can see this changing as the dosage gets smaller.

I can also see the time between tapers being greater. One thing I'm not doing is keeping to any kind of schedule for the reduction, each one is done on how I feel.

Last week I felt that this would be a longer session, but so far things are looking good for 5mg in 9 days.

[markbenjamin57 in reply to JulianJ]

Hi Julian

I think you've hit the nail on the head as regards steroid tapering. As the Aunties and many others of Us Lot here always say, 'Symptoms Rule' in an individual's context (and not to doggedly follow the standard advice from many GPs - and even some Rheumies).

I totally agree with you about not necessarily sticking to a 'schedule' / plan for tapering. This has been my experience too. Somewhere in the BSR / BHPR guidelines for the management of PMR (Prof. Dasgupta et al), there is a phrase something along the lines of: "... Heterogeneity (Variability) of disease course means that Patients' reduction plans should be flexible and tailored to the Individual in context".

At the same time, PMR can sometimes give us a sudden and dramatic 'break' / relief from its nasty symptoms as it starts to abate, and / or as the body's complex Hormonal / Adrenal feedback system starts to 'wake-up' and get into some kind of normal equilibrium again - as I experienced a few months ago.

Enough said..?!

[ali5son]

Hi Julian

Was diagnosed June and like you have still managed to work ( job share 2 12hour shifts ) a week also care for my dad. On 9 mg of pred and when tired or sore not sure it's from long day on my feet or PMR. So grateful for this site

[Rugger]

Welcome Julian

My doctor has advised 0.5mg drops every month. I'm on 8mg, so it could take me 16 months to get to 'Club Zero', if I have no more flares! Slowly, slowly is the motto. Have a look at the pinned post on the right for many different steroid tapers, including Dorset Lady's. (Web App)

My PMR flared as bursitis in my shoulders and hips. Hopefully your right shoulder pain is not a flare, as I believe a flare is usually bilateral. (Click on my name to see the graphs of how I dealt with it.)

I'm not sure if anyone has mentioned the Alendronic Acid? This is a drug given for osteoporosis. Have you had a DEXA scan that shows you do have osteoporosis? If not, discuss this with your doctor and ask why you are on it! Have a look at the National Osteoporosis Society website for more info.

[HeronNS in reply to Rugger]

Rugger, you will only get to club zero no matter how carefully you taper if your PMR has gone into remission. Pred is not a cure, we feel better because it alleviates the symptoms but the underlying disease will only go away in it's own good time. I don't want to discourage you, but I do remember my doctor never told me pred wasn't a cure and I had a fantasy for the first two months that I'd be cured and off pred in three months! I was initially reducing by 1 mg per week. That was nearly two and a half years ago. 😩☺

[markbenjamin57 in reply to HeronNS]

Well said, Heron. From slow and painful experience, I absolutely agree!

[Rugger in reply to HeronNS]

Thanks for emphasising this, Heron. I'm aware of all you say, so should have said ".....16 months at the very earliest...." I was wanting to encourage Julian to go slowly and not fall into the trap of reducing too quickly and missing the signs of a flare.

It's good to see that his doctor has warned him that he's in this for the long haul.

I'm 17 months from diagnosis, but had symptoms before that, so will be around for another while yet!

[JulianJ in reply to Rugger]

When my doctor put me on Pred, he said I would be lucky to be off it in 18-24 months, this is with no flares and managed reduction. He also said that PMR would be with me for 4-5 years or more. I started knowing this is a long road and that Pred would only mask the symptoms. Maybe I was lucky with my doctor, I'll never know.

Looking at my current plan, with no breaks, I could hit club zero by the end of August '18, but I know it is only a prediction and not a goal.

As for Alendronic Acid, I have spoken to my doctor. When it was prescribed it was for osteoclastic bone resorption. As I'm sure everybody knows Pred can cause calcium to be stripped from the bones. Stopping the resorption of the bones must be a good thing, it's the side effects of Allendronic Acid that aren't so nice. As I've been taking it for a few months and with a estimated half life of 126 months, I may as well continue, yes the risks will increase, but I'm full of the stuff anyway.

[HeronNS in reply to JulianJ]

Re alendronic acid, if you don't have serious osteoporosis you probably don't need it. Pred does affect bone density but mostly in the first three months and at higher doses. At lower doses the effect is minimal and easily counteracted by other strategies, like nutrition and exercise. AA should not be taken for longer than two or three years.

[SheffieldJane]

Julian did you say you were waking every hour from 1am until 5 am when you get up for work? That's not good. You may do better taking your whole dose ( is it uncoated Pred.?) when you get up for work. If the insomnia persists you could try 10 mgs of Amitriptylin an hour before bedtime, GP willing. It solved my insomnia alongside the diminishing Pred dose. Of course I'm stuck with it now - another thing to ditch hopefully.

I was diagnosed around March 2016 and am working towards 6 mgs using dead slow nearly stop method, few bumps on the road especially after 10 mgs, may rest at 5 mgs for a while. I don't think the dragon's dead yet.

[JulianJ in reply to SheffieldJane]

My sleep pattern has been like this for ages, started way before any symptoms.

It's not every night, some are a lot better and if I have an early night, I get a good few hours and then it's pretty poor. The short naps in the early evening make it worse, but sometimes I just can't stay awake. It's a tough road and I'm sure lots of changes will be there over the coming months.

The idea of a rest at 5mg sounds like a good idea, it's been a tough ride so a rest could help.

[PMRpro Ambassador in reply to JulianJ]

Research showed that the optimum time to take uncoated pred for best control of morning symptoms is 2am - if you are awake anyway why not try that?

Another slow reduction plan is here:

healthunlocked.com/pmrgcauk...

where you are challenging your body with the new dose just one day at a time. You can stop and mark time at any point.

[JulianJ in reply to PMRpro]

Now 2 am sounds interesting, that would mean less pain when I get up in the morning.

Now what food to take to bed with me

Just read the reduction post, that sounds really good, I'm heading towards 5mg and am cautious of how to proceed. I think I'll be creating a spreadsheet to help me plan my reductions using that methodology. I have been thinking of breaks between each reduction, I'm sure I can work that into a spreadsheet as well.

[PMRpro Ambassador in reply to JulianJ]

Don't get too fixated on a timetable - listening to your body at this stage is far more important as you look for adrenal function to return. A primary sign of that being slow is increasing tiredness as the pred goes down rather than the increase you might be expecting. And of course - don't ignore niggles of returning symptoms.

As little as a glass of milk or a normal fat yoghurt is enough to take your tablets for most people.

[JulianJ in reply to PMRpro]

I don't have a timetable, just a calculation if everything goes with no issues. I expect issues along the way and have been and will continue to do so. I intend to use your taper when I start on 5, which at the moment will be on the 23rd.

I'm lazy and at 2am I don't want to be wandering around the house, so not sure about stuff from the fridge, unless I get a beer fridge for the bedroom

I took my full dose at about 02:15 and am still feeling fine, will try to keep to this time as so far no problems, but if sleep kicks in, I won't be setting any alarms to keep to it.

[PMRpro Ambassador in reply to JulianJ]

An unopened yoghurt is perfectly safe to leave out for a few hours (it is live, still fermenting slowly) - and so are sandwiches with certain fillings. You could put milk in a thermos flask.

We all survived before fridges!!!!!

[JulianJ in reply to PMRpro]

I know, it's just deciding what I want to do at some silly hour. Quick and easy as I don't want to have to turn lights on etc. After all it's only food that's needed, a slice of bread is enough.

[SheffieldJane]

Yes, I believe that side effects and damage is negligible at 5 and under.

Good luck and go well. I just couldn't put up with the years of insomnia any more and oddly the Amitriptylin seemed to ease the discomfort, contrary to the view that only Pred helps our pain. I hate taking the whole toxic mix though and look forward to being practically drug free in the future. Walking with my Fitbit has got me through the summer, I'm up to 7,600 steps, not sure how I'll do in the cold dark winter.