UP AND DOWN UP, GOOD THEN BAD.

I am also a nurse. I ignored the symptoms for two years thinkng it was just old age and would go away on it's on. I hadn't even heard of PMR until I was diagnosed as it is something that is dealt with at GP level and does not get as far as clinical environments. Started on 20 mg Pred, now down to 10 mg which I now will tak for a while then down 1 mg at a time. At aged 68 and still nursing I realised most of my patients were fitter than I am so retiring this July. Time to look after me for a change. .

Hi Kassie...am also from Aus (Sydney-where are u?). It was also a godsend for me to find this forum. Particularly helpfuI, sensible and knowledgeable are Eileen and Mrs O, so be sure to read any of their posts and replies to questions.

...I have just turned 50 and was diagnosed sept 2013. Am being treated by a rheumy (Dr Lim - GOOGLE BJC Health connected care - he does a great Blog, and there are many info sheets etc) so together we are working on getting PMR under control. He did say that it is generally treated differently here than UK, (here you are not kept on 10mg plus doses for any length of time). . Every time we tried to reduce my Pred, even by a little, I would flare. Now I am on combination of methotrexate with the Pred and it seems I have just successfully reduced down to 9mg Pred (time will tell whether I flare or not). My MTX will be increased next and the Pred reduced by a bit. It's a juggle and as you would know as a nurse, both medications come with possible side effects. So far all my blood results for liver, ESR rates etc have been fabulous and I have not had any weight gain or nausea. I was initially reluctant to hear that I have this condition that can only really be alleviated with drugs and a major lifestyle change for me as in no vigorous exercise and really watching my wine intake etc. However, I just could not endure the pain and lethargy any more and I am grateful for every day that is relatively pain free in comparison. Sending you warm wishes and thoughts for a new start to the new year. Cheers, Jo

Hi Kassie

This forum has helped me tremendously having been diagnosed november 29th 2012. I am also a nurse, retired 66yrs, and we are our own worse enemies!

The reason i wanted to answer your post was because I take pred (down to 5mgs) with supper, around 8.30pm. This came about because The 7th day of taking i woke to take 7am, took it, then realised the clock said 1am! I waited to see what I felt like in the morning and I was free from pain and mobility was so much better. From then on I started taking at around 11pm until my GP said reduce time to supper time as much better for stomach. I initially took enteric coated tabs as private rheumatologist prescribed because i was paying!

My GP disputes they are better for stomach and have been know to cause probs, probably with the coating colouring. I have learnt from MrsO and EileenH (they have done their research big time) on this forum that you must listen to your own body, GPs take a blanket view.

I also hate what the side effects CAN do to you but you can work hard to help yourself.

The weight gain is horrid, I have developed the fat deposits on face which do change the way one looks but I am quick to joke about chipmunk cheeks due to steroids! BUT the steroids do not put on the weight they trigger the brain to eat more so we must be very strict with ourselves.

My muscles start to become stiff if i do not take exercise. I think weight bearing exercise, ie walking is the very best for controlling the PMR and helping the sleep pattern.

I now reduce the pred by cutting the tiny tabs in 1/2.

It has been rocky and I have stayed on 5mgs for 2 1/2 months. I will then reduce to 41/2, taking it really slowly.

I no longer ask the GP I tell her what i am doing (sacked the private rheumy) .

The cataracts may have started before the pred.

I had closed angle glaucoma before PMR but have eyes checked every 6months while on pred.

I have learnt from MrsO and EileenH on this forum(they have done their research big time) that you must listen to your own body, i,m sure they will reply to you.

Stay with this really good forum and take control for a better 2014!

DJ

Hi everybody and happy new year!

"My GP disputes they are better for stomach and have been know to cause probs, probably with the coating colouring"

The primary problems with enteric coated are that they are absorbed a bit variably - but those results were found with patients taking them for gut problems. I've never seen anything about it being the coloured coating - and you can wash that off anyway! I found them good - until I got a dodgy batch :-(

"the steroids do not put on the weight they trigger the brain to eat more so we must be very strict with ourselves."

Bit of dispute there - some of it is that for some people. I didn't put on a lot of weight with the enteric coated I was on at first, it just sort of redistributed to my midriff, but when I was put on to Medrol I suddenly had side effects big time! I put on weight and lost muscle and grew hair where I didn't want any - I definitely wasn't eating any more. Since I was put on Lodotra I have lost 30 lbs, hair and skin is back to normal and the chipmunk cheeks have disappeared altogether - and I have a waist again!

What I can say about diet is that keeping your carb intake down as low as you can manage comfortably avoids blood sugar and weight problems. I probably eat about 60g carb/day most days. I don't go nuts about it but I eat very very little bread, no cake and mostly veggies rather than fruit. I'm in the habit to some extent as I am allergic to wheat and avoiding it does tend to reduce carb anyway. Quite a few people find eating a diet high in anti-inflammatory foods helps, and live yoghurt helps with stomach problems.

And don't reduce by 2.5mgs a week - that is just asking for trouble. You need to be reducing by not more than 10% at a time and stay on each dose for a couple of weeks at least to see if you are still OK. So not more than 1mg at a time - and try a week old/new alternate days before going to all new dose. I've reduced to well below 10mg by taking 6 or 7 weeks to reduce by 1mg at a time and I know a few others having success by doing that too. It sounds slow but it isn't if you don't trigger a flare which means going back up again.

Yes 7.5mgs is a "safe" dose but it's a bit pointless if it isn't enough to control the symptoms - still some downsides for absolutely no gain. Reducing too far or too fast is what causes flares, nothing else really. Methotrexate may help get the steroid dose down as it changes the way the body metabolises the pred but there is no reliable overall evidence at all that it helps reduce the total pred dose in most people. I believe if it works it is because you haven't got plain and simple PMR and maybe have late onset rheumatoid arthritis which can appear very similar.

Steroids have side effects - but they get less as you get the dose down. Methotrexate also has side-effects - if they are worse than the pred what's the point? Not taking pred or taking too little pred leaves you immobile - and that has risks too - and at a higher risk of the PMR developing into GCA. Then there is no choice - high dose pred is the only option.

BFN (by the way, I'm blushing at the compliments)

Eileen

I am new to blogging, I am diagnosed with PMR now for 7 months I did the Predisone and am down to 2.5 mg.i have depression for over 20 years, that was under control until this med. I hate Predisone, it makes me

angry, hungry, mean, and depressed. Are there any other options to help this painful disease? I am taking a vitamin..Tumeric that was recommended, has it been known to help anyone??

Hello and welcome Kassie!

Whereas your physician is on the right track in considering 7.5mg to be a "safe dose", he's certainly fallen off the track in recommending a 2.5mg reduction every week - both the amount and the timing are likely to land you in trouble, added to which you haven't made a good start by already having been "on and off the steroids" in this short time.

Eileen has already given you some good tips re carbs. I certainly reduced my bread and potato intake because of their propensity to turn to sugar in our bodies (sweet potatoes are better). I also avoided alcohol (sorry!) and coffee as both can place strain on the adrenal glands which are already being suppressed by the steroids. I also avoided all processed meats. I included lots of oily fish (anti inflammatory and good for our bones), plus garlic, avocados, beetroot and turmeric. Good diuretic foods to help with steroid-induced fluid retention are asparagus, garlic, fennel and melon. My standby for stomach protection was (and still is) 'live' yoghurt, plus another favourite is a daily teaspoonful of Manuka honey which helps to boost our immune system, and a glass of warm water with a few squeezes of lemon juice first thing every morning to help with any esophagus problems. I remain convinced that eating in this way enabled me to get through the years on steroids alone (albeit enteric coated ones) without the addition of stomach and bone protection medications. If you haven't already read about it in other threads, be sure to ask for a DEXA bone density scan and a Vit D blood test - if the latter shows a deficiency then a 3-month course will not only help you with joint/muscle pain but will also enable more calcium from your diet to be absorbed into your bones.

Nannyto7 - my reply to Kassie has answered your question about the herb, Turmeric, although I have to admit that I didn't take it in pill form but added a big pinch of the herb to every suitable meal.

Greatgrandma - good luck with your retirement later this year - more 'me' time will definitely help the PMR.

DJ and Jobaby - Like Eileen, I'm blushing at the compliments too. Having gone through both PMR and GCA, I'm only too happy if my experience is of any help. DJ- you're very wise to 'rest' awhile on the oft notorious 5mg dose - my rheumy kept me there for between 5 and 6 months following a flare. I then reduced in just half mg decrements, tapering on just occasional days - a snail's pace but I eventually went into remission and at the end of the day that is our goal - it doesn't matter how long it takes, always remembering that there are unlikely to be any side effects at this low dose.

Happy New Year everyone!

MrsO

Nannyto7 - no, there isn't a medication other than pred which allows you to manage the symptoms. Adding various antiinflammatory spices and herbs to your diet may help. Some swear by removing nightshade veggies from the diet - made no difference to me at all. Others claim a very strict vegan diet - and I mean strict - helps the joint and muscle pain. It does work for about half of rheumatoid arthritis patients, there has been a proper study to show it, but the diet is so strict it is difficult to stick to and even tiny amounts of fish or dairy are enough for the pain to return so it is a long term commitment which is not easy and has potential problems in terms of nutritional deficiencies.

As for pred: "I hate Predisone, it makes me angry, hungry, mean, and depressed."

I had PMR for 5 years with no treatment, it wasn't recognised, I was apparently "too young". and I can assure you it made me angry, mean and depressed and I craved carbs every afternoon. I didn't know what I wanted, just something sweet and once I started I couldn't stop - not me at all, I dislike sweet things. Within 48 hours of taking the first pred dose it had gone. I ate 3 meals a day - and actually less than before and I hadn't eaten that much - other than this craving in the afternoons.

All carbohydrate turns to sugar in the body - and MrsO, I have to say I'm mystified by the concept sweet potato is better than ordinary potato since they have almost identical carbs! Carrots and peas have a load too but I almost never eat what you could call "white" carbs - the foods made with highly refined wheat flour and sugar. And sugar is sugar is sugar - whether it is white, brown, beige or honey. No difference whatever the media tries to tell you. I also rarely eat veggies that grow underground - a simple way of classifying veggies with a lot of carb and those with less. I did of course have parsnips last week - balanced with sprouts ;-)

Eileen

I should have explained further. One of the main reasons for reducing my refined carbs intake whilst on steroids was to try and offset the risk of steroid-induced diabetes. To that end sweet potatoes, whilst I agree have a similar amount of carbs, are more fibrous and have a lower glycemic value with the sugar not spiking as quickly as in white potatoes. They're higher in valuable nutrients too. Of course the quantity should still be kept to smaller portions, but most people would rather have some potato in their diet than none at all, I feel..

I, too, sinned and ate parsnips over Christmas, along with other 'naughties' - now on a mission to remove the extra 3 lbs!

I eat a few chips off David's plate sometimes - but other than roast potatoes with chicken (the only roast I ever bother with these days) the lack of spuds doesn't bother me in the least! I roast all the other veggies on occasions and I think they are loads nicer. Brussels are lovely roasted with herbs and olive oil :-)

But absolutely about the reducing carbs helping avoid the dreaded steroid-induced diabetes.

Did you know that the American Diabetes Association has finally admitted that a low carb diet is of great value for weight loss for diabetics. Seem to think it is only possible to stick to it for a year - can't imagine why. Once you get out of the habit of eating cakes and stuff it is hardly a problem! And you get far less hungry.

Hi Everyone. Thank you for your wonderful advice.

Greatgrandma you will love retirement. Enjoy

Jobaby. I live in Brisbane. Thanks for the advice re your rheumy I checked the website out and I found it helpful.

DJ your info was great. I see the GP in 10 days. I think I shall ask to try the EC pred. Do you have a patternfor chain mail knitting ? was awake till 3am!!!!

Eileen Thank you for your learned advice. I was on Imuran for a few months but stopped 3 weeks ago. Didn't! Feel it was doing anything. The Specialist agreed to this and did say if I needed too high a dose of Pred then the next step would be Methotrexate. I told him that I would prefer not to go down that road.

I found on a previous thread your comment about pred and Calcium. I need to take 6 Calcium tabs per dayAnd 4 rocaltroll due to surgically induced hypoparathyroidism. I have previously researched the pred and calcium time frames and spoke to pharmacist and was told it was OK to take them together. Could you please link me into the article re taking calcium 4 hours after Pred as I am very interested to read this. I guess Ireally need to get my act together re the diet. Have been a sweet tooth for a very long time. I shall follow your advice re the reduction of the pred. Thanks

Mrs O again thank you for your learned advice. Compliments to you and Eileen I feel are well deserved.

I have recently been looking at the Mediterranean diet which sounds like it may be good to give it ago with some modifications. What's with the parsnips Ladies? Yukky.

I shall keep you all posted on my progress.

Thanks again.

Kassie B

Jobaby - if you are cared for by a knowledgeable and sensible doctor you aren't kept on 10mg+ doses for long in the UK either. Kirwan says 6 weeks at 15, 6 weeks at 12.5 and then a year at 10mg and he feels this reduces the rate of relapse from 60% to 20% compared to the BAR (Br. Assoc. of Rheumatologists) guidelines which say 3 weeks at 15, 3 weeks at 12.5, 4-6 weeks at 10mg.

The problem is that GPs often haven't got a clue, most aren't even aware of the guidelines and, unless they have had patients before, try to reduce the way they do when they use pred for other problems - often a rapid taper of 2 weeks 15mg, 2 weeks 10mg, 2 weeks 5mg and stop. The result is a flare sooner or later, always when they stop the pred. The next time it is more difficult to get the problem under control and a longer period of 15mg is required - then they try to reduce in steps of 2.5mg (if you are lucky) or even 5mg - and often fail again. The patient ends up in a cycle of flares, the doctors decide they are steroid resistant or it isn't PMR and push to use other immunosuppressants like methotrexate (mtx). It only alters the way the body metabolises the pred and in fact most of the studies have shown it doesn't reduce the amount of pred used overall significantly and, finally, the most recent recommendations are NOT to use them after all. Of course, this just muddies the water even more as some doctors have heard they should use mtx and not the later evidence.

We have had several people on the forums who have had their treatment approached in this way - and have failed miserably to reduce. When they then stay on a 15 or 20mg dose for several weeks to really hit the inflammation hard and then reduce in 1mg steps they are able to get their steroid dose down to below 10mg with few problems.

I never got beyond 10 until I started to reduce in 1mg steps - and it takes me 4 weeks or so to do 1/2 that, starting with the new dose (say 5mg) for one day, 6 days of old dose (6mg). Then one day 5mg, 5 days 6mg, one day 5mg, 4 days 6mg and so on to alternate days old/new. I repeat things at 3 and 2 day intervals if I feel at all wobbly. Then I sit at alternate days for a couple of weeks to make sure.

Slowly the doctors in the UK are accepting slowly is the way to go. The doctors here in northern Italy were already way ahead - my GP worries about what I'm doing being too fast! But she, like most thinks that staying on a dose for a few months is the "slow" approach. I see it as being tiny steps so the transition is smooth rather in jumps. The body seems to adjust better.

Kassie - most pharmacists we have spoken to agree on NOT taking pred and calcium at the same time but some docs don't seem too aware either. A couple of hours is enough and most of us take pred for breakfast (or even before) and our calcium at lunch and dinner time. You shouldn't take all your calcium at one fell swoop, the body doesn't absorb it all if you do, and there should always be a bit of fat in what you take it with to aid absorption (you absorb far more calcium from semi-skimmed milk than from skimmed milk for example).

Parsnips Kassie? Lovely, you don't know what you're missing - but Aussie ones probably don't get the right weather, they need a good frost to taste right! Melbourne might manage (judging by my experience of its weather) but not Sydney and Brisbane! I had a letter from a friend in Brisbane this morning - what a coincidence :-)

Hello again Mrs O

Have just reread this lead and I apologise to Kassie for sounding very pious, as though I,m doing it all right and sailing through which is not the case.

I was interested you said one has very few side effects on 5mgs, so when will the pred. hamster cheeks disappear?!! Plus bruising so easily and very thin skin, I bleed at the slightest bump.

Reading your and EileenH's info I need to get my Vitamin D and calcium sorted as still very low having taken the initial prescribed dose of 60,000.00 units a week I am now over the counter 14,000.00un.vit D3 and seperate nasty chewable calcium which is making no difference when last checked. Can someone advise on dosage and am sure my GP will oblige and I am a firm believer Vitamin D helps ones immune system.

Last question, do you think pred. from different manufacturers make a difference. I know some paracetamol work better than others and have always thought manufacturers binding agents make the difference, any thoughts?

I love parsnips too!

DJ

Sorry DJ - don't quite understand the statement "seperate nasty chewable calcium which is making no difference when last checked" - no difference to what? I've taken my calcium tablets religiously for more than 4 years during which time my bone density hasn't changed enough for it to register on a dexa scan. That doesn't mean the calcium hasn't made any difference - it means it may have prevented bone density loss. Pred makes you lose calcium more quickly through the kidneys, the idea of taking extra calcium is there is enough around for the bones to take it up. Funnily enough, the calcium tablets are the least awful as far as I'm concerned! I haven't had a version I dislike intensely at all. There are several different versions, including soluble ones so ask to try different ones if you dislike them so much.

If your vit D is very low you need a longer course of very high dose and then regular checks. MrsK was given the very high dose for a few months, her vit D was OK and it was stopped. A few months later it was plumbing the depths again - and it was agreed she needed regular boosts of the high dose stuff. I assume that the circulating blood vit D only remains high if there is a good store in the body, it will fall again until the reservoir is full (bit like water supplies in the UK!). How long did you take 60,000 units for?

Derby Hospitals Trust recommends 20,000 units EVERY DAY for up to 30 days - that's nearly 150,000 units a week, more than double what you were given DJ. Gateshead says 60,000 units per week for 12 weeks. That is what MrsK was given and the first batch wasn't enough long term. After 2 or 3 goes she is now OK on a couple of thousand units per day.

I'm sure the fillers DO make a difference. "They" say that generics are as good as brand - and that is often true but there is also evidence that for some people with some drugs there is a difference between brand and generic (shown in a study). I was on prozac years ago - as long as it was the brand i had no side effects (dry mouth and so on), with the generic my tongue was stuck to the roof of my mouth! The biggest difference I found was between two different substances - prednisolone (the ordinary white tablets and the enteric coated versions you get in the UK) and methyl prednisolone (medrol, what we are given here).

The enteric coated prednisolone were great until I got new batches which were loose, dispensed in a bottle not in blister packs. The 5mg pills seemed to be far less effective but 2.5mg pills were fine and worked at the same dose. I queried it but the pharmacy said they'd had no other complaints. That was the reason for being switched to medrol (I hadn't enough pills for the time I needed them) - and that was hell on earth!

"I know some paracetamol work better than others" - do they? Not that I've noticed! Paracetamol really doesn't do much for me - but I refuse to pay for the highly priced brands so maybe I just haven't found one that works because I won't pay!

I suppose I meant that the major long term side effects are minimised at lower doses. I must admit I never had skin problems with prednisolone, even at higher doses, except when I was on medrol - and then I had hamster cheeks, acne, hair - you name it, I had it! As soon as I was switched to prednisone in the form of Lodotra the weight has slowly disappeared, the hamster cheeks were relatively late though, my skin and hair are back to normal. I do know others who have the very sensitive and delicate skin even at below 5mg. You do moisturise moisturise moisturise don't you? Using Deprobase (prescription or OTC) instead of soap for showering has helped others - I never use soap except shampoo. I had dry skin on medrol but it didn't disintegrate.

Eileen

Hello DJ

Eileen has covered all your questions but I just wanted to add my experience with Vit D. My first blood test produced a reading of 39 (normal is between 75 and 150-200). I was prescribed a relatively low dose supplement of just 1,000iu Vit D3 a day for 3 months owing to the fact that I have one kidney - a supplement of Vit D enables more calcium from your diet to be absorbed into your body and too much calcium could have presented a problem for my kidney. I therefore had calcium blood checks and all was well. The 3 month course increased my levels to 89. I was then advised to stop taking the Vit D, have a re-test in 6 months and repeat the course if necessary. I'm just about to embark on another course as the level has decreased back down slightly and the consultant was of the opinion that with the next couple of winter months it was likely to decrease further. His preference was for the 3-month course as opposed to a continuous maintenance dose.

I'm surprised your reading is still very low after taking 60,000 units a week, especially if that was for 3 months? Do you know what your reading was at the outset and what it increased to? I think you should get this checked out with your GP to ensure that you are on the right dose for you and that you have regular monitoring until you are at the right levels.

For the thinning and bruised skin I used Double Base Cream, available also in a Gel, both OTC and on prescription. It was originally recommended for the seed corns and hard skin on the soles of my feet, tried it on the rest of my body and it worked a treat.

The hamster cheeks were definitely a thing of the past for me once I reached 5mgs and below.

MrsO