Dont be filled with horror

Thanks Rita.

Bless her it must be so much harder the older you get. Thank you for your encouragement. Wish her a very. Happy birthday from me xx

Linda

Thanks Catie, that all makes a lot of sense and I have to admit after 24 hrs on 5mg I feel better already! I may well try acupuncture as well I think as it did help and certainly brought the levels down by 50%. I hadn't fully appreciated the percentage drop when you get down to 5mg, and probably did that bit too fast last time - so I shall take a lot longer over it this time and see how it goes! Does anyone have any advice about the best time of day to take the steroids? The achiness is so much worse in the morning that I wondered if last thing at night was best to cover the morning better? Normally I take them when I get up.

GREAT to have this forum for advice - it's really helped - thanks!!

I have a lot of time for acupuncture - but not for the rather wibble explanations that are given by some practitioners! Like Catie - neck problems didn't cause half the symptoms I had with PMR! Plus I'd had neck and back problems that were far worse long before the typical PMR stuff happened.

As for reducing from 5mg in tiny steps - there are loads of ways of looking at it and Ragnar, a Swedish gentleman, has written about his technique and it can be found on the PMR and GCA northeast support site somewhere.

Some doctors like their patients to stay on 5mg for anything up to 6 to 9 months before continuing the reduction - and that seems to help a lot too. 5mg is a very low dose and associated with few long term side effects - it is the earlier higher doses that cause most of the worry. Plus it is the total amount of pred you have taken over the entire treatment that really matters. If you reduce and end up having to take a bigger dose for a while to deal with a flare you have probably ended up taking more than if you had stayed where you were at 5mg in the first place.

You don't have to take the same dose every day - so to make the drop a smoother slope rather than a step you could start by taking the old dose every day for (say) 10 days and then take 1 day of the new dose, with the smallest difference you can manage, 1/2 mg is easy enough. Then take the old dose for 9 days and then one day of the new dose. Repeat that, reducing the number of days at the old dose by one each time until you are down to a couple of days old, one day new and then stick there for a couple of weeks and see how you are. Then try old/new on alternate days: that represents a total of of 1/4mg reduction, probably over a period of a month!

Then start to increase the number of days at 4.5 between the 5mg doses: 2 days 4.5, 1 day 5, then 3 days 4.5, one day 5, 4 days 4.5 and so on - until you are at 10 days 4.5mg, 1 day 5mg. Then you can drop the 5mg dose and take 4.5mg every day.

Then do the same to reduce from 4.5 to 4. Can't get much slower and gradual than that!!

Anne: the best time to take your pred is as early as you can in the morning, and you should have been told that right at the beginning! Research has shown that the best time to take the pred to minimise morning stiffness is 2am (who wants to wake up then though?) so a new form of pred has been developed for that but it is mainly used for rheumatoid arthritis although there are now trials on its use in PMR.

It has a special coating which disintegrates after 4 hours so you take it at 10pm, before bed, and it allows the peak level of pred in your blood to happen at 4am before the substances that cause the inflammation are released by your body. I use it but I live in Italy - it is expensive compared to ordinary pred so i suspect a UK GP would refuse to prescribe it.

However - many of us take it as early as possible in the morning by leaving the tablets together with a sandwich and a glass of water by the bed and taking it at when we wake up - as, let's face it, most of us get up to go to the loo long before we "get up" for breakfast! But even taking it at 6am instead of 8am will make a big difference. Lots of people also find that being really warm before getting out of bed makes them more mobile first thing - use an electric blanket BEFORE GETTING OUT of bed :-) Warm shower - anything that allows you to move and stretch - because THAT is a great way of dealing with the achiness.

If you take ordinary pred last thing at night you may find you are stiff in the evening and some doctors disapprove of doing that as they think it interferes more with your adrenal function. I think it depends on the person and if it works for you, go for it. One of the ladies on the forum suffered badly with various side effects, her GP suggested trying taking the tablets at bedtime and it worked brilliantly for her. She asked him why - and he admitted he had no idea but he'd add it to the fount of knowledge! Everyone is different...

Most things are worth trying - and adopting when they work!

Eileen

Eileen thank you! I have printed your very full and very helpful response and will DO AS I AM TOLD! I tried to be too quick last time I now realise! It is also VERY good to know that 5mg isn't going to turn me into a sausage overnight!!

PS: any clues as to where I find this info from Ragnar? Not sure how to find the sites you mention above!

If you aren't a sausage now 5mg isn't likely to do the trick!! That was a risk at the start - each time you reduce a bit that risk also reduces.

If you go to the top of this page and click on "Polymyalgia and GCA" in the red line of text above "Don't be filled with horror" it should (if I remember rightly at least) take you to the list of topics on this thread. The top 2 or 3 are always the same - one is Brief Histories and another is about useful links. There is a link there to the "other forum" which is also linked from the PMR and GCA UK-North East Support Group website. If you can't work that out, google PMR and GCA UK-North East Support Group for the website, add in "forumup" and it will give you a link to the forum.

What I described is very similar to Ragnar's idea which he developed to get down below 3mg. It's just a way of spreading the 1/2mg change that is the smallest reasonable change over a longer period than overnight in the hope the body won't notice the change as much so you don't get pred withdrawal pain. If you do get aches and pains it is more likely to be PMR than less pred - it is SO difficult to tell sometimes.

If you can't find it now - tell us and we'll post the direct link but then the post will disappear for a day or so until it has been approved

Eileen

I knew there was something else I meant to say!

"The TCM (Chinese) doctor says that they don't recognise PMR as a condition in China"

That has more to do with the fact that it rarely occurs there. It is mostly found in northern Europe and amongst communities with a Scandinavian component to their gene pool, although Caucasians further south do sometimes have it. There are many diseases that are not found in certain countries - almost certainly because of lifestyle and/or environmental factors as well as the genetic disposition.

Eileen

Anne, turn back to the top of page 1 of this thread. There you will find some information threads with 'PINNED' written above them. They give the details of the Charities set up for patients with these conditions and you will find Ragnar's story on the pmrgcanortheast website.

Will do thanks!

One more question: I've been given Alendronic Acid (1 a week) and Adcal (2 a day) to counter the osteoporosis side effect issue. Do we all take this?! What are the general thoughts. I'm fine with the adcal, but the AA sounds awful and I worry about taking it!

Actually 2 questions: I have never seen a rheumatologist, just local GP, should I ask for a referral & get a more informed opinion or is this so straightforward that my GP is fine? He's a good doctor!

The Adcal is standard and yes, almost all of us will be taking that. AA has been a matter of dispute amongst us for a long time.

What SHOULD happen is that you are given a dexa scan within the first few months of steroid treatment to get a baseline indication of the state of your bones (it is recommended in the Rheumatologist Association Guidelines. If your bone density is a problem, then taking AA is acceptable. If not - there is no reason for it at all as there is no real evidence it prevents bone density loss in normal bone. It will, however, rebuild denser bone if it is low. You have seen the listed downsides of it and the line now is that it should not be taken for more than a total of 5 years without a break because of the longer term side-effects. They always only appear once a drug is being used in a large population of patients over an extended period - and believe me, the company that developed it indulged in a massive and very persuasive campaign about how it was the miracle prevention for old ladies with fractured femurs. Many doctors still remain convinced.

I would accept taking it if my bone density was in an at risk range. I took it for about 6 weeks - and stopped since my baseline dexa was fine. I have been on pred for four years, a lot of the time at over 10mg/day. I recently had another dexa scan that, to all intents and purposes was identical to the first one. Pred has made NO difference to me at all. Loss of bone density actually only occurs in about 4 out of 10 patients on pred - it isn't necessarily going to happen and it is more likely in underweight women who are very inactive. Both are worse risk factors than pred.

And your Adcal - 2 tablets, to be taken 1 at a time (the body can't absorb massive amounts of calcium) and with a small amount of fat (to transport it, a cup of tea with milk is enough but with meals prevents some of the other effects like wind). And they shouldn't be taken within about 2 or 3 hours of your pred. So pred for breakfast (or earlier is even better) and Adcal with lunch and dinner!

As long as your GP does the right checks (blood sugar, blood pressure and a few blood tests) every 6 months or less and doesn't get stroppy about the speed you reduce once you have identified what works for you (SLOW and steady in small steps) and you have no problems, then a good GP is perfectly capable. If you go to the rheumatology department you will very likely see a different person every time who will have no idea about your history and be little help - sometimes they are good but not always. You also need to have eye pressures checked, preferably at least once a year - you are at risk so a good optician should know that and not make a fuss (it's the test they do for glaucoma but it should be done more often than every 2 years).

Eileen

He sent me for a bone scan when this first started 2 yrs ago (more actually, but I had to FIGHT for a diagnosis!) and I was below average for my age - so I guess I should ask for another scan? I'm neither underweight nor inactive! I've never had blood sugar checked, or blood pressure or eyes & the ONLY test everything has been based on is CRP. I've had more information from you in 3 days than 2 yrs from the doc to be honest! I also have Barretts Oesphagus, which is contra-indicated with AA, so I think I'm going to have a crack at the rheumatology route! Thank you SO much for your informed and sensible advice!

Anne

I had PMR for 5 years before I got a diagnosis - it is a common problem!! We are ladies of a certain age - it must be in our mind! But don't get me started on THAT! Yes - every 2 years is sensible and will show if things have changed.

If you have Barrett's oesophagus - no-one should even be SUGGESTING you take alendronic acid. It's bad enough when it causes that (which it can) without giving to someone already demonstrating it.

It isn't as if AA is the only stuff for dodgy bone density, there are two or three others which don't have the same gullet risks. In fairness most of the gullet problems in otherwise healthy patients are as a result of not taking it properly (not enough water and not staying vertical for 3/4 hour after taking the tablet) - but I wouldn't take it without good reason. Be careful they don't try to fob you off with another bisphosphonate - a bisphosphante is a bisphosphonate, whatever it's called and all have similar downsides.

Can't remember the other medications off the top of my head, except a biologic agent called denosumab - which I think Nefret is on and is happy with. It's more expensive (of course) but the others are approved for use in the UK for patients who can't take AA - there is a hierarchical order which possibly must be worked through, I don't know offhand.

Eileen