having really bad hip pain and due to reduce, what to do?

Yes I feel strongly people should be told to plan their lives and take it easy. I have told work what I can and can't do and they can take it or leave it. Sometimes I have to curl up on the sofa for a rest, so what! Its called a reasonable adjustment and they need to get on with it...

I saw the GP to explain my Dexa result, (as he does not get sent a copy) and he tried to stop the Calcium and the Vit D! I had to explain I needed to keep going with them and just stop the AA - he really is clueless.

The hip pain is both sides, and feels like PMR. I did get caught in the cold wind yesterday. I just do not want t get to the stage of not beng able to get out of bed! How long should I wait before I go back to 15mg?

Oh dear... What do they get taught? It stands there in big enough print in the BSR guidelines ;-)

Yes, see absolutely where you are coming from. I'd go back now if it were me and then reduce just 1mg at a time once the pain has gone - the infections can do this and maybe your body really didn't like the change as well. The 6 weeks time scales aren't fixed in stone, the bottom line is SYMPTOMS. 

Your work has a SOFA???????????????

Good for you, Pat --- you have a cleaner, too.  I am not able to deal changing the bedding and scrubbing the floors.  I am glad you are reducing 2 1/2 from 20 mg.  I am reducing by 1 mg from the 20 mg.  I am at 18 mg as of yesterday, but I think I will stay with 18 mg for 3 days, and then another 1 mg after that.  I need to be careful with any kind of fast reduction because I have had flares from 17 1/2 trying to reach 15 mg which was disappointing.

Wishing you patience and well being.

Erika

Hi Erica, yes I am getting a cleaner, she's actually my sister-in-law.  Her brother is at present in the Hospice here in Belfast and she buried her other brother (my ex husband) 18 months.  So she will be at a loose end and I really do need someone to clean and maintain my housework.  

Yes I am glad I listened to all the suggestions and reduced by 2.5mg instead of 5mg of pred which the Consultant at Endo recommended.

I think easy does it with the reduction it seems to be working and after reading lots on this site I really do't want the yo yo effect.  I hope you get sorted soon Erika.  Take care.

Pat

So glad opened up these posts this morning. After a terrible December with a flare I couldn't control until had returned to 20 mgs from a happy month on 15, decided today was the day to reduce back to 15.

But reading the warnings against reducing when unwell, have just popped anothed 5mg taking me back to 20. Have the remnants of a flu caught in England over Christmas as well as a suspected spider bite - for which I am on mega antibiotics and will hear from my doctor today if it has to be surgjcally drained under a general anaesthetic. So...on reflection of the posts, not the ideal circumstances for reducing my pred!!

Just another example of how valuable this site is and the benefits of other sufferers' experiences.

Please DON'T reduce in 5mg steps when you get there - it really does cause problems. Get a pill cutter, halve a tablet and then alternate old and new dose (20/17.5) for a few days on the way down to 17.5 and then do the same for 15/17.5. You may have been fine at 15 but the drop is too big: never more than 10% of current dose!

And until the flu is gone, the spider bite has been drained and you are off antibiotics: DON'T REDUCE!!!!!!!

Hello after several weeks, and a forgotten password. Interesting exchange above. My own experience is that I have fewer colds, and almost no asthma problems- that since I've been taking pred for  about 15 months. Before that quite often over decades.

This is a different ssue , but I was intrigued to see a program on the BBC yesterday deaing with a surgical treatment for epilepsy. During that operation, which involved invading the hippocampus of the brain and actually lifting out the temporal lobe, great care was taken not to touch the part of the brain just below and slightly behind the temporal lobe, because that affects vision. This epilepsy operation is now becoming a routine treatment for the seriously afflicted, no matter how delicate it is. It may be that  GCA, since it is a form of vasculitis affecting the temporal lobe and which may press on the part of the brain the surgeons avoid touching during the epilepsy operation could be treated in some way by surgery too.

I have followed this forum since I became afflicted with GCA and then later on, PMR, I have seen or recollect nothing about surgery as a potential treatment or "cure" for GCA. Instead all efforts are to manage that ailment and PMR though drugs , notably pred, etc. Has anything been written about this prospect?

I always wonder about the interconnectivity, if it exists as amongst various medical specialists. In this instance "rheumies" and those surgeons who carry out the epilepsy operation. How could that be determined or established if such liaison doesn't exist?

Best wishes for 2015 and the years beyond.

Hi Charles, yes when I was diagnosed with PMR, dec 2013' although I'd had symtoms since the sep, I immediately researched the condition on the internet and was stunned to discover that the condition effected approx 1 in every 1000? So this condition is not rare by any means. I then discovered that very little research work had been done re a cure for this condition. Why? Well I can only offer this as one possible answer. Because the condition typically is found in the elderly and it is to some degree controlled with fairly cheap drugs, and it's not terminal,  how much money should be spent into researching this condition?

well, I was only 53 when this condition was diagnosed, and now I am on preds I can say that I have relatively little pain. I really do feel as if I am cured although I know that I'm not. But up until I was diagnosed I went from a very sporty, well, fit female to a weeping, immobile wreck that was in so much pain that if there had been a live button and a die button in front of me, I know which one I would have pressed!

then there's the flare ups and the chance that this condition may last for considerably longer than the 2 and a bit years that we're led to believe.

of course now I'm on the drugs I can't believe that the person I described above was me. So from that point of view I really do believe that research into a cure should be a priority. I say that not least because this condition is an autoimmune condition and there are a lot of autoimmune conditions out there that are positively scary and life threatening and if they found a cure for this one who knows it very well could lead to a discovery for some or all of the others, and how great would that be? Christina 

Unfortunately it is rather difficult to find a cure until you know the cause. The cause of loss of vision is not always the same. In the case of GCA it is because the giant cells that give the disorder its name squeeze the diameter of the arteries that provide the blood supply to the optic nerve. If the swelling gets too bad the lumen of the artery is squashed completely - like standing on a water hose - and the blood supply to the optic nerve is stopped. The blood supply brings both nutrients and oxygen to the nerve and without either it is damaged, sometimes beyond repair. It can survive some time without nutrients, very few tissues can survive for long without oxygen and the result is death of cells, much the same as in a stroke or heart attack, except in this case it is nerve cells. Once they are damaged beyond a particular stage they die and at present there is no way of reversing this. Maybe in time it will be possible to use stem cells and make new nerves - but that is a long way away. In the epilepsy surgery the aim is to avoid damaging the part of the brain that processes the signals from the retina that are processed as images and turned into what we "see".

Research at present IS concentrated on better ways to manage the symptoms. In the case of GCA, in fact, many doctors refer to a cure - once the giant cells have died off it is fairly unusual for it to recurr. Flares are due to the dose of pred being reduced too fast or too far - recent basic research has shown that the inflammation is still present even after 6 months of high dose pred which suggests that less haste to reduce the pred dose might, in the long run, result in less pred being required overall.

I'm not sure where the figure of 1 in 1000 came from - it is usually quoted as more like 2 in 10000 although it is the most common inflammatory rheumatic illness in over 60s - and, as you so rightly say, that is a population which has, until recently, not been an economically significant one. People are being diagnosed at younger ages - as we overcome the fixation that only the elderly suffer from PMR - and with the raising of the retirement age the impact will become greater.

The situation is far better than even 5 years ago, active research is being undertaken into causes as well as means of management. New technology and knowledge will contribute to better treatments - but it is increasingly costly and perceived as not "sexy". I suspect, however, it isn't going to be surgery that does the job.

Hello DJ, wow, down to 3/4 mgs in 2 years, that's brilliant! And, yes of course I hope you win your battle. I suspect that it'll take me a little longer to get to that level but yes I eat a goodish diet and take daily gentle exercise, plus a few supplements and hope that there will be an end to this condition in sight for me too. I plan to win this battle eventually. All the best, christina

Hi Christina and D J

Yes I think you can win the battle.

I have been having physio since July this all started. I tried ibruprofen for  fortnight then the pain was so bad had to stop driving, so I started physio, then couldnot walk as the pain and stiffness was so bad, sleeping was impossible and getting out of bed the worst time of day.

Pred has been wonderful at sorting out the pain and stiffness I am literally a new women. I became so ill so quickly my sister was sure I have motor neurone disease, my mother MS and my GP Guilllane Barre, so PMR is really the best of that lot.

I think that as we have a cheap drug that does a good job quickly we should look at making sure sufferer or PMRer get physio and are signed off sick or can get some help in the home.

I am still seeing the physio and having gentle almost Bowen on my hips. I walk in feeling a bit stiff with limited movement and walk out painfree and with full range of movement. He used to treat elite sportsmen and women 4 times a day! He says I should not be paying - I have some insurance that pays part - but being able to function better is worth it for me.

All the best Jane

Do I understand you take pred at 8pm? Can I ask why? Sorry if you've said before but I can't hold the histories of the best part of 100 people in my head!!!!! Especially when on pred ;-)

Hi EileenH

I took it by mistake in the middle of the night 4 weeks after starting pred and felt so much better in the morning i decided to continue taking it pm. GP advised taking with supper and not as late as 11pm as I was doing (with yogurt)  so now take with supper.

Have never dared to switch to morning although i know you have always maintained that is the best time.

DJ

I take mine at 7am with a bowl of porridge and no I do not take a PPI. I used to have to wait half an hour to before I got up, until this morning, I had got to the stage that I could bounce out of bed!

If you take pred late in the day it can stop you sleeping.

Jane

The best time to take plain white ordinary pred is at 2am! Studies were done on hospital RA patients and that turned out to be the best time for optimal control of morning stiffness. If you aren't prepared to get up at that time (and I hesitate to suggest it because of that, though I know people who do), then the next best time is as early as possible in the morning. Lots of people take it early in the morning with a sandwich or a yoghurt - if you have eaten late-ish evening I would have thought that your 11pm slot with yog was fine. Especially if you are taking omeprazole or Zantac (preferable in my opinion). Plain pred never really bothered me as long as I took it with something even without a PPI. The 11pm slot must have avoided the early evening stiffness, did it? If you don't tell the GP he won't know will he...

Sorry Jane, have I missed something, what's PPI? Christina 

I have been taking my 20mg of pred between 12 noon and 1pm and reduced yesterday to 17.5 and so far so good. I get up when I waken because I can.  I don't go to bed early I must add so whatever works for you.

PPI - Proton Pump Inhibitor, an example is omeprazole and it suppresses gastric acid. Zantac is an older drug that does the same, probably with fewer long term problems, and which, by the way, should always be used by patients taking methotrexate.

Thanks Eileen. I take omeprazole, looks as if I need to be looking up the long term problems associated with that! Heavens is there no end! Christina 

I think you mean 2am is the best time to take pred?

I do not have trouble sleeping or stomach problems taking plain pred.

If I do have indigestion I take a Gaviscon tablet. Omprezole gave me horrible side effects and as long as I can manage I refuse to take any other medication. You may be right and taking a little later may help pain and stiffness.

Hi Christina, I am like yourself "is there no end" take omeprazole 40mg a day and sometimes up to 100mg depending on what I eat.  Just for the record and I am sure you know this already but taking them has to be at least 2 hours before or 2 hours after taking pred.

I have been on these for the longest time as I have bad reflux and after many tests my acid level measures 4 which is high.  I am sure Eileen will correct me if I am wrong but I had to go through many tests.  I even had to get a tube up my nose and into my stomach and come home with this box that measures acid level, I had to wear it I think it was 24 hours or so.

Hello Pat, no I did not know that there should be a two hour interval between taking omeprazole and preds. I've been taking them both together for over a year now! I was only put on them because following an endoscopy I was diagnosed with a sore in my stomach, (just where the osphogus meets the stomach) and as I was taking preds and Alendronic acid, No longer on that! Dr thought I needed stomach protection. Presently I'm on two a day 2x20 mgs, am & pm following a flare up of a terrible pain just left of my sternum and just under my breast bone, and since taking the extra tablet the pain has almost gone. But my gp has said that hopefully she will revert me back to the one a day when the pain has gone. However, I'm going to see if anyone has a more natural stomach protector, so anyone out there got any suggestions. Christina 

Hi Christina, I just looked at my box of pred and it states on the sticker "Do not take indigestion remedies 2 hours before or after this medicine".  

Unlike yourself I don't have any pain, just the really bad reflux.  I honestly don't know the side effects of omeprazole.  Also taking 2 Adcal-D3 caplet and I am not sure if they should be taken with pred.  It's just so confusing.  

Be careful the Adcal-tablets are not giving you the reflux? Eat little and often and raise the bed head if reflux bad at night. So many foods can also cause reflux. Just a thought!

DJ

Thanks DJ,  I know the Adcal tablets are not giving me reflux.  I have had bad reflux for a very very long time, long before PMR and pred.  Sugary foods or too savoury can give me reflux.  But I have a high acid level even if I don't eat sugary or savoury foods, but thanks anyway.

Pat

Hi pat, I'm so paranoid now so I've just double checked. My preds sticker says 'take with or after food' nothing else? And my omeprazole leaflet says the same. However, it's no odds to me re taking the tablets 2 hours apart so might try tomorrow, omeprazole first, so it does it's work lining my stomach followed by the preds. Christina

Christina I just checked my prednisolone 5mg box and  the 2.5mg box and they both say the same thing  2hrs before pred or 2 hrs after.  The best person would be your pharmacist either ring them or call in.  Good luck anyway.

Thanks, I will. I'm off to collect my prescription tomorrow. Christina

Pat, the Calcium (Adcal) tablets should not be taken at the same time as Pred as they can reduce the efficiency of the Pred.  Our mantra is Pred for breakfast and Calcium for lunch and supper!

 

Christina, have you tried 'live' yoghurt as a natural stomach protector?  I had very severe side effects to my bowel from both the PPIs, Omeprazole and Lansoprazole and they had to be stopped almost as soon as they were started.  Instead I ate a 'live' (probiotic) yoghurt with my breakfast each morning to line my stomach before taking the steroids, and in spite of a starting dose as high as 40mg, my stomach stayed fine throughout the remainder of my days on steroids.

Manuka honey is also good for any reflux problems, as is a few squeezes of lemon juice in warm water at the start of the day or before a main meal - the acid turns to alkaline in the body. 

Thank you Mrs O.  I took my ad-cal by mistake with the pred at the beginning just the once I think. I now take them before.  But my breakfast can be lunch time depending on my night's sleep. Thanks again for keeping me right.  My dr said to take ad-cal in the morning but sure what difference does it make as long as I dont take them with pred.

 

I must try what you recommended for Christina. This forum and people like yourself are so good at keeping us all right. I hesitate to think where I would be without you all 😀

For some time prior to PMR and prednisone (diagnosed 10 months ago)  I been having the juice of a lemon in warm water as soon as I get up n the morning.  I haven't had a cold in over a year.   Hope I didn't just jinx it.  :-)

Right now I'm hoping to avoid the flu bug which is running quite rampid in some Canadian provinces.  There are a few cases in here in the Northwest Territories and they expect a significant increase in cases in the coming months.  I guess they didn't get the vaccine right for this one so my vaccine shot may not help much.

Of course I do - what an idiot! I've asked for the moderator to correct it.

Omeprazole IS associated with some unpleasant side effects but many doctors either don't know or deny it! And it on its own can lead to loss of bone density!

Lots of people on the forums have used plain yoghurt successfully - preferably ones with added probiotics.

If you already have damage to your oesophagus you must NEVER be put on a bisphosphonate - that is a contraindication to its use. 

Ranatidine (Zantac) is an older anti-acid med that has fewer side effects than the PPIs (and should be used by anyone on methotrexate by the way). 

If you are on Adcal or similar the two tablets should be taken separately as the body doesn't like being overloaded with calcium and will only absorb the amount in one tablet at a time. They should not be taken at the same time as pred so our suggestion has always been pred for breakfast, calcium for lunch and tea/dinner. You also need a small amount of fat to transport the calcium from the gut - doesn't need a lot, but that is why semi-skimmed milk is also far preferable to skimmed. You absorb very little of the calcium in skimmed milk - whatever the dieticians try to tell us about low fat stuff!

Why does the doc think Adcal should be taken in the morning? I know it makes it difficult sometimes to fit everything in but with the calcium tablets and the pred should be taken a few hours apart. And there is some evidence that reducing carbs in general and sugar in particular can cure reflux. Everyone's stomach contents are very acid, it needs to be to digest and absorb food properly and that is one of the causes of some of the side effects of omeprazole, it is so efficient. The problem is when you have reflux and stomach contents return to the oesophagus which, unlike the stomach lining, isn't designed to resist the acid. If you have no reflux it doesn't matter if the stomach contents are acid.

Jean, I'm so glad to hear the lemon juice works for you too.

Flu is on the increase here as well with the authorities saying that the majority of those being hospitalised with respiratory infections have succumbed in spite of being vaccinated, the simple reason being that the flu virus has mutated rendering the injection useless.

Take a daily teaspoonful of Manuka honey (preferably strength UMF 15), and daily garlic (fresh if you can manage it!).....stay positive and, hopefully, well!  Good luck.

Good morning Mrs o, I read on this site yoghurt is eaten quite a lot. I always have live yoghurts in the fridge, just sitting there. I looked up the side effects of omeprazole last night and what I read is now enough reason why I should start eating some of the 'white' stuff when I wake up in the morning. Why I haven't been is beyond me as I love yoghurt and many years ago (40+) I used to make my own! As for the manuka honey, honey is one of my all time favourite foods and even before PMR would daily scoop a large teaspoons worth and eat it, just loving the sensation of it warming and running down into my stomach! only now I take it after I've taken my meds, it's my little treat! Never tried the lemon in warm water though, that'll be my next adventure! Thanks Mrs o, christina

Good morning Eileen, my damage is actually in my stomach, just where the oesophagus meets the stomach and is classed as a 'sore' whatever that means. By bis phosphate are you talking about the AA which I stopped taking pre Christmas. You speak of Zantac often and when I next see my Dr I'll ask if I can be put on that instead of the omeprazole, although I've now the yoghurt alternative, so may try that for awhile and see how I fair there. I take a calcium tablet, 500 mgs at lunchtime anyway along with my other suppliments and always with semi skimmed milk. And, this year I've started my carb reduction diet so am hoping to see an improvement in that respect. Sorry pat and Eileen I seem to have butted in on this thread but Eileen your advise for pat is excellent. Christina 

BTW - someone posted somewhere the other day that H&B has Manuka on offer again but you have to ask for it at the till - apparently it is a target for the light-fingered...

Yes, if the shelves appear empty, often the answer is that they have been put behind the till for 'safety'.  There is a special offer on at the moment, often on just certain brands of the Manuka - their online order service is excellent too.

Thank you so much for the information Eileen.  As Christmas is over and the New Year I have been eating healthy so reflux isn't so bad.  No chocolate or mince pies or Christmas pudding and Brandy Sauce and back to Slimming World for me.  My new script for Ad-cal is one a day, chewable yuk.  At present am on 2 caplets, but I am going to split the dose, one am and one pm.  Your a gem Eileen, thanks.

No worries Christina, information is for everyone.

Am I the only person who actually LIKES my calcium/vit D???? I use the cheapest bog standard one that comes on prescription here as I find it perfectly OK. It has a green pack - they keep trying to give me the gold pack which is nicer but not enough nicer to be bothered with the higher co-pay! A GP gave me some sample ones once - aniseed flavour. I liked them!!!!!

I haven't tried the chewable ones yet as I have some caplets left, I am saying yuk without tasting or chewing, it's just the thought of chewing chalk lol

Mine just break down in my mouth when I suck them, sometimes I crunch the last bits up if I'm in a hurry for my next "before I get up" cup of tea (I take pred at night so no problems there by the way before anyone says "but you said..."). They are a little bit gritty I suppose but it isn't like chalk, honest!!

Well as long as they are not like chalk sure then I'm flying.  I have about another 5 or 7 days to finish off the caplets.  I think Eileen we do whatever works for us.  I take my regular tabs ie., aspirin, bendrofluothiamide (can't spell that one) vit c - vit b, and then later on normally pm noon or 1pm take my pred and then away later on  at night I take my omeprazole 40mgs.  I also ordered today on amazon some Manuka Honey +12 so am rocking and rolling (if only) lol

When you find something that does that Pat - be sure to tell us all as we'll all want a bit!!!!!!

Well now sure I am not selfish at all and when I find that something, you are the top of my list.  You will not get better than that.😀

Confess I quite like my Calcium/Vit D tablets (Natecal D3) too.  I think they are probably nicer if just allowed to break down in the mouth and like you I sometimes crunch the last little bit.  I was told that some people have difficulty with them but perhaps those are the people that try chewing on them.

I have to say, I suspect they probably are a bit bogging if you really try to chew them! They do vary from make to make too.

They definitely do NOT taste as disgusting as pred tablets you don't manage to get down in one! The worst is when you have to cut a pred tablet - taste foul and made the side of my tongue numb!!!!