Waiting for the blood test

Yes - that sounds like we were in the NE. Obviously the further away you are from the SE corner the better!!!! See - there are advantages to living in the sticks! :-)

EileenH

Happy Easter everybody!

Tills - are you taking calcium supplements? It just occurred to me whilst eating my breakfast that you may have missed the discussion we had earlier about taking them! If you are on steroids and calcium supplements you must make sure you leave 2-3 hours between taking the steroids and the calcium tablets as calcium stops the absorption of the steroids and you then effectively get a lower dose. Since the instructions on both are to take them in the morning and with food people tend to take them at the same time with their breakfast. I hadn't been specifically told not to take them close together and when I changed the times to steroids for breakfast, calcium for lunch and dinner things have improved with regard to reducing.

This may also be a factor for anyone who finds they need to go a higher dose as I imagine there are many drs who don't necessarily start calcium supplements at the same time they start the steroids until they realise the patient will be on them longterm.

cheers all, EileenH

:yikes: I obviously missed that piece of information regarding calcium supplements EileenH! Will now change to taking them with lunch and dinner. Does anyone remember when meal times just meant eating something tasty, they're more like a Hospital medication round now. Must go, chocolate bunny to eat.

Lizzie Ellen

Hi Eileen,

At the moment, I am not taking anything. Calcichew and Alendronic Acid gave me problems and the consultant says he will write to my GP recommending Strontium - which sounded quite alarming! He said it is a powder which is dissolved in water and taken in the morning. Nothing was said about not taking it with steroids!!!!

Tilly

Hallo to everyone and a Happy Easter. I'll do a catch-up on how my \"no prednisolone\" regime is going in a few days. What I absolutely must record, having read some other sufferers' experience, is how marvellous our surgery's repeat prescription system is. I do mine on-line but the steam version is just as good. There is a section for remarks so if we need to order early for any reason this can be explained and mine has never been queried, much less refused. We can collect (2 day's notice ) or have it delivered to the village shop of our choice ( 3 day's notice asked for ) but almost always arrives more quickly. I'll add that to my list of blessings to be counted. Back soon, Betty

Hi BettyE,

Same here, Doctor's surgery and Hospital excellent on prescriptions and appointments. Shame its not the same for everyone. :doctor: :nurse: (I'm 63 and I love emoticons, I really should grow up!!)

Tills

On this site is a place for medicines and it also gives side effects.

Strontium rang alarm bells.

Have a look at it in this site and then google it.

Always look at side effects before taking a new drug. And CHECK WITH YOUR CHEMIST THAT IT IS COMPATIBLE WITH EVERYTHING ELSE YOU ARE TAKING.

I know I keep on saying this, but Pharmacists do know more about drugs than Doctors.

Totally agree Mrs K. Pharmacists are worth their weight in gold!

Hi all!

Grrr - I wrote a post earlier and submitted it and it's disappeared! Wonder which bit of the ether it's in! :-( I'll try to remember the salient points! Hope it wasn't the moderator who stole it!

LizzieEllen - shame the choccy bunnies don't come calcium-reinforced isn't it! And exactly WHY should any of us \"grow up\"? 22 seems a fine age to me :-)

Tills - what was the problem with calcichew? They shouldn't cause any probs except maybe wind and slight constipation. Gastritis can occur but usually if you're taking them on an empty stomach but they need to be taken at the same time as food to improve the absorption of the calcium anyway. If you're taking alendronic acid and non-enteric coated steroids as well it's difficult to tell what's causing an upset stomach. There are other forms of calcium so different ones should be tried anyway.

My GP here told me this week that, apart from the problems in taking it, there are further questions about the alendronic acid besides the (quite rare) bone necrosis that's been seen. It is retained in the body for a long time and there are not yet any longterm studies on its effects. It also causes a different sort of bone to form and there is some thought it may have its own problems. Good calcium and D3 intake and weight bearing exercises are a good start - some exercises are better than others by the way. And today I found an Australian site (about DEXA scans) which recommends that one of your doses of calcium should be taken as late in the day as possible as there is evidence that that this helps prevent the bone loss which occurs overnight - another excuse for supper! So calcium - total of 1500mg in 2-3 divided doses, with food, not within 2-3 hours of steroids and alendronic acid and one dose last thing at night! Calcium carbonate is the cheapest (no surprise why that's what we get then) but is also available as the citrate which may be more acceptable.

And as further back-up to the pharmacy support group: did you know that a very large proportion of hospital admissions (figure escapes me at present but well into double figures) are as a result of drug interaction or inappropriate prescribing/dosing? My daughter says she sees it all the time on her ward which tends to have an older and chronically ill clientele. It's partly due to a habit of giving a drug, the patient comes back because of a side-effect, maybe sees a different doctor who has no time to look at the history properly and another drug is prescribed to deal with the side-effect. Repeat and rinse! The increasing trend to not always seeing the same GP in a practice (for whatever reason) and the use of different chemists, some very large or with ever-changing staff means mistakes are not noticed in the same way. A good way to minimise it is to go to a local, smaller or independent dispensing chemist with regular staff - they will get to know your drug habit ;-) - and are more likely to pick up if anything is possibly wrong. And never be afraid to ask - better ask than be ill unnecessarily!

EileenH

Hi Eileen.

My post has just disappeared too! What is going on?

I will try again.

Calcichew gave me the most dreadful stomach problems - loud gurgling and diarrhoea - not good in the workplace! Also the tablets are soy based - a no, no if you are hypothyroid.

I agree that the jury is still out on Alendronic Acid. That made me feel really ill.

The chances of my practice prescribing strontium ranelate is small. NICE discourages doctors from prescribing it because it is expensive - £300 p/a instead of £40.

My last prescription for thyroxine was cut by two thirds and came with this message:

'To reduce medication wastage your medication has been reduced to 28 days supply'

Now how does this reduce wastage? Thyroxine is a treatment for life so unless I pop my clogs in the next three months . . .

Even if I did (no plans LOL), the saving on pills will be less than a tenner. What, I wonder, would be the cost of the extra administrative work involved down the line in further prescriptions - not to mention the damage to the planet by my driving to collect!!

Mrs K, I have been looking at the National Osteoporosis Society website to get information about strontium ranelate. I am still in that process but probably wasting my time if NICE won't allow it to be prescribed.

I totally agree that pharmacists know more about drug interactions than your average GP.

Tilly

A HAPPY AND PEACEFUL EASTER EVERYONE!

Lizzie-Ellen - I love those emoticons too.......let's not grow up :silly: - it's much more fun this way!

Talking of chocolate bunnies, I received I card with two chocolate bunnies on the front, one with his ears missing, with a speech bubble saying \"What?\" :bunny: Well I thought it was funny anyway!!!

Eileen - What a mine of medical information you are.....I think we're all very lucky in that we've got our very own pharmacist/ :doctor: / :nurse: in you!

MrsO

Tilly, I've been taking Strontium Ranelate for some time now without any problems apart from a couple of weeks when I first started it. Since those initial side-effects wore off, it's been one of the few drugs I've had which hasn't posed any further problems.

I'm curious as to why your consultant said it was taken in the morning - I was told to take mine at night, because there has to be a 2 hour gap between taking it and eating.......a 4 hour gap in total. I do get annoyed occasionally that I have to wait the time out before I can get to bed, but in the nature of things it's not that much of a problem.

I need to eat first thing as I am diabetic so just can't see how I could take it then - I'd have to miss breakfast!

Oh - best explain that I had bad reactions to all the biphosphonates when I tried them some years ago; that's the main reason it had to be SR.

I was told last summer that I have spinal osteoporosis. Thought to be steroid-induced.

Nefret

Hi again Nefret,

I have just replied on your thread.

Thanks for this information about strontium ranelate. It is good to hear of somebody actually taking it. There is more justification for you being prescribed it than I.

The consultant just said to take first thing in the morning before food. No idea why. I agree it would be better to take last thing at night. If it is prescribed, I will think about when to take it!

I did hear about a new treatment which is taken daily for six weeks and that is it! No more treatment. Wish I could remember where I read about it!

All the best,

Tilly

Hi again!

Tills - the disappearing post is due to the fact the powers-that-be appear to have rearranged the forum to include a visual verification code which those of us who use the site a lot probably didn't notice and just proceeded as usual! I forgot to mention on my second version that calcium also comes in a citrate form and if you go and talk to your pharmacist they may be able to tell you of a version without soy oil to try. I've just looked at the data sheet with my new Italian tablets and it tells you the tablets can react with a whole load of foods (including amongst others spinach, rhubarb and cocoa, anything with phosphates such as ham and some cheese, and veggies, wholegrain cereals and chocolate). Take the tablets 2 hours away from a meal containing any of these! I swear - it's one way of avoiding the weight gain with the steroids. We can just starve away.

And really - how can reducing the number of tablets you must take one a day of to stay alive save wastage? Quite the opposite, more trips to the surgery and the chemist to get a prescription, more paper thrown in the bin. I was beginning to think GB was flushing itself down the pan last year - it's getting worse.

Nefret - you have a valid point there which didn't occur to me. The online info I found about strontium ranelate said it must be taken alone and with some time before and since anything else so the advice was to take it last thing at night. I do approve of doctors who say \"I'm not sure - let me look this up\" like my GP used to. So much safer.

The interesting thing about medical students is that they do far less than any other science graduate about any given topic but then generally go out into the world with the belief that they know everything about everything. Their understanding of statistics is non-existent, their knowledge of physiology poor (far too difficult!), bacteriology flawed and pharmacology - well let's not even go there! And drug reps only tell them the positive points, rarely are the down-sides mentioned, so the last one they saw sticks in their mind as being wonderful. I nearly became a drug rep once upon a time but decided I wasn't prepared to convolute the truth to earn a living, and that was 30-odd years ago. It's far worse now.

Mind you - I've met a few duff pharmacists in my time too, and one with appalling manners who shouted information out at a patient in a crowded pharmacy who asked advice as she needed something to assist with her bowels (had had a spastic colon) that it was her diet that was wrong if she was constipated.

Hey ho - the joys of a chronic illness! But on the positive side it has to be good for our brains, all this research and calculations of when we can take our tablets, eat or whatever. Should keep the dementia at bay!

hope you've all finished your eggs :-)

EileenH

LOL Eileen,

Your posts always make me laugh and are SO informative.

I have been looking at other sites on Polymyalgia and found a piece of information that jars with other information I have taken as gospel!

The general view is that we get ourselves off steroids as soon as we possibly can. Fine.

I now read on the NHS site that we need to stay on steroids for two years to prevent a relapse.

I am relatively new to all this but at first glance, I think I would prefer to stay on a low dose for two years than wean myself off in a year and relapse!

Thoughts?

Tilly