Does excessive fluid intake reduce the effectiveness of Prednisone ?

The only problem with tea, which I also drink, is that I am taking vit D and calcium supplements to counteract the steroid side effects and you should not take tea and the supplements at the same time. In fact the vit D is a pain as you cannot take it at the same time as pred either.

REALLY - I didn't know that! Why not?

Pred for breakfast, calcium/vit D for lunch and tea...

Ooops - forgot , are you sure it is the vit D? You must not take pred with CALCIUM, they bind in the gut and the uptake is impaired.

I didn't know that.  I am going to have to write out a list of everything.  I have to take the pred early in the day with food.  I can't take my iron in the morning because it shouldn't be taken with calcium and I am supposed to spread my calcium doses out fairly evenly through the day.  But now (after all these months) I find I can't take the calcium because I have just had pred.  I need to take calcium three times a day, preferably with food and iron (with food) twice a day. I always thought the pred did not interfere with anything and as long as I had some food to protect my stomach it was all okay. Aaaargh!

No, don't think the pred interferes with any thing but the calcium interferes with the pred. I just take calcium/vit D twice a day - as long as you don't take it all in one it should be fine - there is a limit to how much calcium your body can absorb at one time, that's all

Thanks Eileen.  I'm on a special calcium supplement now that has to be taken spread out over the course of the day to maximize absorption.  At least it isn't the one that had to be taken five times a day which was first suggested!  I guess I'll see if I can tolerate a dose before bedtime and take it then instead of at breakfast.  Should solve that problem.  Honestly, everything is getting so complicated, and what with the walking, and the tai chi and the business of medication and supplements it feels like a fulltime job.  Does anything else interfere with the pred?  Iron for example?    Not supposed to be like this!  

Don't think so - not the iron anyway. I know - being ill and arranging meds in the middle of life is not for the faint hearted!

2-3 hours is felt to be enough between pred and calcium-containing supplements if that makes it any simpler? One lady used to set her alarm for 2am to take her pred - it worked better for her like that. Now that would keep your pred away from the calcium...  

Goodness knows why you should not have tea with Vit D, it was something to do with the absorption of the vit D. I must admit I sometimes have tea with mine and think sod it! 

Anhaga looks like you will have to spend your day eating snacks and tablets spread out with a bit of Tai Chi mixed in! 

Oh, Anhaga. It sounds like you need a spread sheet for it all!💊💊 I love your 'mouse ' expression. Haven't heard that one before. We would call it 'builders' tea in this neck of the woods.☕️☕️ Just recently plugged a hole in the outer wall with steel wool to keep the mice at bay!!🐀🐀 Good job I no longer drink tea, though it was always weak tea for me.

Eileen, re waking up on purpose in the middle of the night - surely you jest!

Ptolemy, that sounds just about right!

Silver49, I think I picked up the expression out of an L.M. Montgomery book.  Never had a chance to use it before!  Rooibos is a good substitute for tea as with milk it has the same kind of satisfying body to it, and contains no caffeine.  My son and I often partake of "bush tea" as it is called in the No 1 Ladies Detective Agency books.  

Jesting? Well I do know several people who DO take their pred in the middle of the night! A few actually wake up deliberately, most are awake at some time during the night to go to the bathroom and take their pred then.

Rooibos - my SIL told me how wonderful she thinks it is and I got some to try. No, sorry, not quite the same effect as Tetleys t-bags to get going in the morning. 

Harvard's educational site doesn't include tea in their "9-things-that-can-undermine-your-vitamin-d-level" article - though that is aimed at US readers I suppose. However - I did find an article that said caffeine affects the receptors so would inhibit absorption. So actually it isn't JUST tea, it's caffeine from any source: soft drinks, coffee etc etc. The half life of caffeine in the body is about 7 hours so there is always some around and even so-called decaff products still have some caffeine. Oh - and enough magnesium is needed but that is often depleted in the tissues even if blood levels are apparently OK.

The founder of the "vit D council" (who is positively evangelical about vit D) points out that what is important is not what inhibits it but taking a high enough dose in the first place to overcome all the things that might stop us absorbing it. I'll be back to my winter 5000 IU supplement when I get home I think 

It doesn't substitute for the morning cuppa, but I find it a good way to cut down on my tea drinking later in the day.  More satisfying than the lighter tisanes.

I have a packet of Rooibus in my tea cupboard. I tried it but I don't like it. My friends are highly amused by the variety of teas I can offer......it used to be  malt whiskies!!! 

Some kinds are better than others, 'tis true.  I was introduced to it by a young woman from South Africa and was pleasantly surprised. I like to make it a bit strong so that it can handle the milk and then I feel it is more like orange pekoe.

Thank you, Anhaga. I don't like strong tea and don't take milk in tea or coffee so I'm not sure. I like Darjeeling. I'll give Rooibos another go but it'll be weak for me!!

I had an unopened pack in the cupboard so have given it another go. I think I could be a convert but I couldn't take it strong and definitely no milk! I shall persist as I think it is an acquired taste.

I think this mid-night dosing comes naturally if pmr symptoms either cause someone to wake up at 2AM and would otherwise prevent one from getting the rest of their night's sleep.

On the night after any day in which I skipped my pred, this becomes de-riguer, with my ability to get a full night's sleep coming back a day or three later. Then it's time to skip another daily dose and do it all again, trying to get to where I can skip perhaps one dose out of three.

There also nights where I might need to take my morning pred several hours early, enen though I did take my normal dosage the previous morning. I am opportunistic about skipping days, only when I happen to wake up feeling like I don't need it.

I had read almost two years ago that this was one approach to weaning oneself off of pred, presumably during the "long-slow" period that I find myself in and at 6mg. I try to recover fully from each skiopped day before skipping another, i.e. no new symptoms like arthritic thumb joints or any worsening of my ribcage wretchedness. My DAILY morning exercise routine is up to speed and I feel this very much helps me to recover from those skipped days, as if most of the "flare" is confined to the morning workout (bike ride) and then gone again. These workouts seem to restore equillibrium somehow (after a skipped dose), but perhaps not surprising as sufficient endurance exercise can very much blunt the systemic inflammatory response. It's the equivalent of an accelerated fasting for what that's worth.

So don't take your pred with a glass of milk or yogurt??

Dan, I've never heard of skipping doses before. Is this another way of tricking Mr. Pred. so the dependency is thrown off?

Diana🌸

I have no idea what the rationale is, and I don't know how much testing was done.

I didn't do this on purpose initially, rather I just happened to mis a dose once in a while, but only when I was feeling good enough first thing in the morning to not go for the pills automatically.

But since I was surprised that I could recover from a missed dose, I have now tried this as a weekly follow-up to the last skipped dose, and working toward shorter intervals, symptoms permitting.

Today is only 48 hours after I skipped my last dose, and yet I did not find myself needing to take pred before my usual waking time. I will wait at least another couple of days and then try again, as long as no thumb-joint flare or badly disrupted sleep occurs between now and then.

Again, I do feel like my daily morning exercise, out into the cold for 2-3 hours, is somehow allowing me to recover to a more-normal state after each skipped day, but I am still early along in my experiment and taking daily assessment of the situation.

And not to say that the daily exercise doesn't incur a needed recovery of it's own, it does, and I also have to be careful to eat wisely for the rest of each day while catching up with the duties of each day.

I hope to be able to post some concluding report on this skipped-day approach toward a final weaning off pred, but I want to see some quite longer-term results before doing that.

I've taken the pred mid-night with a couple of ounces of plain yogurt a few times, and the pred seemed as effective as I expected every time so far.

 

I think the idea is to protect the stomach, not to get any usable calcium from the food.  And doesn't the issue of cross-interference apply to calcium supplements, not foods?  But it would be interesting to know if another type of food might be better with the pred than dairy.

I'm so lucky, I must have a rock gut because I've never consciously taken my pred with food and couldn't face eating anything at 2:00 or 3:00am when I now take it.  I do drink water with fresh squeezed lemon every morning and sometimes throughout the day when I'm tired of just water. Maybe that's the answer for me??

I've been told that the normal sorts of amounts you get in diet are generally OK - whether that is true or not I don't know but I used to take it after a breakfast with yog/milk and my bone density didn't change for the worse. 

The data sheet with my pred says that I must take it with a snack for proper absorption.

If that is Lodotra/Rayos it is because the right conditions in the gut are important for the 4 hour breakdown of the outer coating - must be taken within 3 hours of your evening meal or with a piece of bread and ham/cheese. 

I didn't know that the food was for absorption.  I thought that it was important to get the pill into the stomach's liquid so that a dry pill didn't cause a burn to the wall of the esophagus if the pill didn't quite get to the stomach. Some meds are like this and quite damaging to the lining of the esophagus. I don't know about pred, haven't had any irritation but I always chase it down with something that is at least semi-solid, and followed by a bit of water.

We're talking about Lodotra/Rayos - it is the coating that must break down in a standardised amount of time.

I did read somewhere that one should have some fat based product, milk, yogurt ... when taking vit D and calcium. I think it does depend on the pill, but a gynaecologist friend of mine said I should eat something with steroids irrespective of what type they were, she actually suggested a dry biscuit, which I found rather unappealing.  

This was the data sheet for the enteric coated ones, but they are coated too.

Thank Eileen for the clarification on exercise. I have stayed away from some of the things I've done and opted for 1hour a day non stop lane swim with fins and mits for resistance but will try my equipment. I kniw uf it hurts stop but many times i don't k ow I've overdone it till later. I'm just after 5 weeks able to lift my arms for any extent for the front crawl.

I do have a problem with my right arm in the evening it aches and is more limp. Any comments.

As for taking my morning pills I'm like diana i roll over take them with water and back to sleep if thats what we call it.lol

Mariane

" many times i don't k ow I've overdone it till later."

That's the problem - your muscles aren't able to signal when you are overdoing it so you have to know your limits and stick to them. To build up you get to your known limit - and add a few minutes. That usually works but it mUST be a slow increase.

Are you right handed? Do you use the right hand/arm more? 

Sorry for the delay, totally right handed ao i chalk it up to that.

I belive in your 10% rule however i accidently missed 2 doses over the week (5mg) so I'm going to do my first reduction. Do you think 5mg. Is to much to go from 20mg to 15mg. I normally wouldn't do it but i missed 2 doses and feel great other than my arm when i overdo it.

Look forward to hearing from you

I'm accumulating evidence that, at least at the lower "biological" dosing levels,  that missed days may allow a greater reduction in one's weekly pred consumption.

Where I was having to go back and forth between 5 and 6mg, missing a day doesn't cause to much of a spike in symptoms.

I missed a couple of days a week apart, and having recovered nicely from each missed day, skipped a third day after only two days of 6mg/day between skipped days. 

I'm now two days since that last skipped day, and so far today have been ok with just 5mg this morning.  I got a full night's sleep last night without having to take pred during the night, which puts my recovery from the missed day at a very good point after just TWO days.

I should mention that I have been eating carefully, have exercised for 2-3 hours on the missed-day mornings, and have lost only one extra pound since the start of my skipping days of pred.

I'll try to continue following up on my progress, perhaps I'll start a specific thread. My exercise is cycling, which is relatively low-impact and seems low-stress, at least once one is acclimated to putting in serious mileage.

I'd be far more inclined to 2.5mg at a time but you may be OK. You can but try it and  see what happen. Remember though that missing 5mg on occasional days is by far not the same as going to every day 5mg less.

I see the rumi tomorrow

I'm using almost the dead slow method 3 days faster than it. I will try this week with 3 days lower and see, if problems i agree go up a couple of mg.

I do know after this first drop it will be 10%

Thanks. Mariane

Hi I am glad to find another cyclist out there. I have been diagionsed with TA a week a go, and been on preds 60mg for approx 2 weeks there are starting to cut me back now. I would normal ride 200 k per week and now my expectations are done to 25 k a couple times a week. After the ride I feel more focused and able to function at a high level. A number of people have took me to cut back even more. It geeting cold out there I would like to ride as much as I can before winter sets in I am not sure how I am going to handle this winter. Did you expience similar problems when you stated with pred thanks

 

Hi - I'm not a cyclist (my field is PMR ;-)  ) but I don't think I would tell you to cut down any more since what you are doing is far less than what you are used to.

The problem many people have is with PMR symptoms - in polymyalgia rheumatica the muscles become intolerant of acute exercise and it is important to pace yourself and rest appropriately - a lot of people take their dose of pred and suddenly all the pain and stiffness they have had disappears so they go back to doing their normal amount of activity and the next day they feel awful, their symptoms have all come back. 

It all depends which blood vessels are affected - and for some people it is only arteries in their head and neck, all they get are symptoms of what became called Temporal Arteritis (TA). TA is a form of GCA, GCA isn't always TA, just like a motorway is a road but a road isn't always a motorway. If you are still able to do 25km twice a week, keep doing it. In fact, there is no real reason why you can't do more providing afterwards you feel better not worse. The main problem with any arteritis is that the arteries are narrowed, reducing the blood flow to the muscles - and that is what causes the problem. When you have done exercise at the level you do then the blood flow will improve after the exercise. And if you have arteritis in your head arteries - that will also improve your mental functioning.

It isn't wrong to exercise, but if you have PMR you have to learn what you can do and not exceed it. Then you can build it up slowly - like any other form of training, but in tiny increments. You are starting from a completely different baseline to most people with PMR who often struggle to walk a few hundred yards. Some people with GCA affecting their thoracic or abdominal arteries might struggle too - if the blood flow to the arms and legs is reduced you can develop claudication after even just a few minutes of exercise. I first really realised something was very wrong when I couldn't do more than a couple of minutes on the cross-trainer at the gym when previously 10 mins at a similar level had been fine.Of course, since I was in my 50s I was told by the GP that this was what you had to expect as you aged. At the time I didn't know any better!

Where are you? Just order of magnitude, not your address!!!!

 

where am I. I am in the second week of cutting back from 60mg just started 50 mg daily. I am pain free but every morning it seems that there is a thick fog around me cannot think cleary I was a programmer and then a Network administrator for 37 year. I spend most of the multi tasking and single seem overwelmy can spell either. Once I get out for a hour on the bike come back rest maybe sleep I feel most human I think clear and I feel that the light at the end of the tunnel is not a train heading my way. My doctor ( Rheumatologist and autoimmune specialist ) is also a freind that i used ride with. He knows what level I can ride at and suggest that I try to stay a 50-60% of that he is surpised that I am pain free in such a short time but then I wonder how many case of this he has been exposed too.

Hi Ardern, I'm guessing that since your pred dosage is high enough to control TA, that your musculo-skeletal symptoms at that dosage would most likely be quite minimal.

I see endurance exercise as an accelerated fasting, which directly reduces the body's systemic inflammatory response.

I would try to do the exercise every day, versus a higher intensity and/or duration of exercise only two days per week.

With exercise held as a daily constant level, it should be easier to judge the effects of the adjustments that you can make to your pred dosage.

I am speaking from experience, but of course I am only having to deal with reducing pred dosage a much lower level.

Last year, when a higher dosage around10mg was particularly effective, I did recover much of my musculature doing lengthy, intense cycling every day.

I headed out into the frosty air this morning on my bike to attend a ride that started in the next town, and actually felt great despite having skipped Friday's and yesterday's pred doses altogether. I am looking forward to perhaps being able to skip every other day's pred within a short time, and hoping to be off of pred by late December, exactly two years after it first came on suddenly.

I'm also hoping that your TA is kept fully under control, whatever that takes.

No - where do you live!!!!!!!

What you are experiencing could be either or both of the pred dose and the illness itself. Pred causes brain fog and so does the vasculitis that you have. It isn't just affecting the temporal artery - that is just where they found the evidence you have GCA, it is possibly affecting other cranial arteries as well and affecting the blood flow to the brain. The exercise is improving that - and bringing your functioning nearer to normal. 

Most of us on the forums are female - and also very used to multitasking in keeping home and family running. Several of us have commented that whereas we used to cook the dinner (which in itself is multitasking to get it all ready to eat at the same and correct time) while supervising homework being done, loading the washing machine, emptying the dishwasher, answering the phone etc etc - now we struggle to do any one of those things even though we "only" have PMR!

I agree with dan - why not try riding every day but - initially at least - at a lower intensity or intensely for a shorter distance and build it up to find how much you are still capable of without detriment. Then you might have a daily functional benefit. 

I don't know any athletes with GCA - but the male PMR marathon runner I do know progressed from being in a wheelchair to back to 5km runs in about a year. PMR is a different kettle of fish as I said before but I am sure his relatively short PMR journey was because he was so fit to start with and was able to do hydrotherapy right from the start. I know that I had far better days when I could get an aqua class at the gym at 9am - and that was without pred. The option for those disappeared and the PMR got worse at about the same time. In hindsight I should have found something else but when every move you make hurts, even going up a couple of steps, and a walk of more than a hundred yards leaves you unable to move for the next few hours there isn't a lot of incentive!

Hi

I was born in Twickenham but more to Canada in the mid 50's. I now reside in a small town north of Toronto Ontario. I see no piont in ride at a leeser level. My expertations before this started was to ride tice e week 100k plus at in just over 3 hours, now I am back to 25 k per hour. the weather is going to start to get ready lousy here soon. The only other option is run which I  am not cazy about or drive a 100 k to use a velodrome but I am ride with other people and then the ego kicks in and I will over do if. How did you find the cold and damp of the winter did it make the condition worse we are expecting a strong El Niño effect here this winter the last time it was that strong was in 98 at a christmas we have 3 - 4 feet of snow and the temp was around -20c. you can't run ride or do anything in that  

As luck would have it, just as it started getting wintery here I stumbled across a very heavy "indoor trainer" bike for sale cheply at a local thrift store.

I am almost loathe to ride it indoors, but I did give it a try ona couple of rainy days, and it definitely "saved the day" interms of my getting the exercise I needed.

As much as it takes perseverence toput in the time on one of these indoor cycles, at least today many are very quiet and they can allow you to get the exercise that you condition appears to desperately call out for.

The otherhalf ofthis game is dietary control, and I thginkone can get most of the benefit of powerful exercise simply by adjusting one's nutrition and carb intake to exactly suit one's level of perhaps reduced activity. This is something that the medical establishment and popular press seem very poor at conveying sufficiently, so consider it your mission.

I hope you are able to get set up with some kind of indor exercise apparatus though, and I am becoming quick to employ the one I just bought whenever the weather becomes too much of a challenge.

Eileen was right to suggest that having muscles that are already adapted to high-level exercise should be an advantage, and I now wish that initially, before I received proper diagnosis, that I didn't back off on theexercise as much as I did! I had believed I had a likely infection, so did allow myself to slow down perhaps too much at the time that the weather became coldest. Luckily though, I never did stop riding daily altogether, so was always able to test the effect that various levels of exercise duration/intensity were having, and was receiving effective treatment (prednisone @ 15mg) within three months of the onset of pmr.

"I see no point in ride at a leeser level"

But that is what you are doing isn't it? Riding far less than normal? My point was that if you changed to a daily ride you might get more of the benefit functionally that you say you are getting as well as being able to increase then to find the maximum you can still do.

It is well known that damp weather often is detrimental to rheumatic patients' wellbeing but I find wind even worse.  It tends to be fairly cold but dry here where I live - or rather, most winter precipitation is of the solid variety! However - there have been significant changes to the climate pattern here on the south side of the Alps and it will be very interesting to see what happens this year. Two years ago we had a proper winter with 8 metres of snowfall at 1600m up in the centre of the Dolomites about 45 min drive away. Last winter they had next to none - and so far this winter (what winter?) I am still able to sit on the balcony in a sleeveless t-shirt in the afternoon! 

Hi I already have a set of rollers and a wind trainer but my trouble with is that if I get stuck in the pred soup I can always get of it on the road I have no choice. Twice I rode for 10 mins decided it was to much turn around and headed home before i reached home I had turned around and was able to go for a dissent ride. Al though I have started to cut back I am having a harder time to initate the efford to get out get. I f you don't mind me asking what dosaged did they start you on and at what piont did you noctice the pred ways have a lest effect on you I stated at 60 and plan to be down to 45 on monday

It looks the weather is improving next week I maybe 5 or 6 six of 10 plus. I will try to start with some spring training first day easy then more effort the next and so on and see where that get me. I don't what this to be counter productive. al I need todo is add on to the base I have. I have routes I ride I know my expectations on the routes so I need to start shaving seconds and then minutes from them. as far as the weather goes here the west coast is going to be warm this year which cause the cold form the north pole to come down to balance system and I am stuck in the middle of it. i haven't seen a t-shirt afternoon sinse Sept. Thanks for the encouragement. i have to look at this problem like a hill. "it's only a hill get over it"    

We had an atrocious winter last year with ice-covered sidewalks for literally weeks.  We bought a good treadmill and that proved to be a lifesaver, although I only used it once after it became safe to walk out side again, and hope I won't need it too much this winter!

I started at 15mg, then reduced at 1mg per month.

I had relief within three days.

I encountered difficulty when I got down below 5mg.

I've skipped tuesday, thursday and saturday so far this week, and riding 50 miles on those days. I am taking the 5mg tabs at the moment.

I feel stiffening later in the day, so I ride for 5-10 minutes on my spin bike to warm up and relieve the whole body's symptoms for a few hours.

I move like a sloth (only slower) when lifting very light bumbell weights through my difficult range of motion in my shoulders. This always improves things and helps reduce overnight symptoms.

The warm-up exercises are like magic, lasting for hours.

I started at 60 and down down to 45mg. Sept I did a club ride over 100 is just over 3 hrs. The last ride was a week ago 23 k in a hour. going out today able 1 week left before there snow on the ground and tyoo cold to ride. Iam looking foward to the time when I am down that low. I am to sure what to do in the weeks to come. There is a velodrome hour from here but I need to be able to do 30 k to stay on the banks. I have been going to Yoga It has allowed me to maintain my range of motion and even extended it a bit. I tired to warm up on rollers but i keep falling off so i tired my wife wind trainer too boring I just go out and ride.The first few K are slow but once I start moving after thing is good. Are you having problem with hills that's my biggest problem I am not even coming close to my expectations my pulse is 20 -30 beats over what I would normal do. After the hill recovery is good it drops down to normal in 30 - 60 sec. after excercising I almost feel human no brain fog and it last for hours even into thenext day

good luck

"I am not even coming close to my expectations my pulse is 20 -30 beats over what I would normal do"

That's to be expected - your muscles have effectively become "untrained" because of vasculitis so anything you do is far more effort than normal. For us normal beings that meant managing to get up a couple of flights of stairs left us puffing and blowing as if we'd run up twice as many. The pred also doesn't do muscles much good really - many people find even once they are on a relatively low dose of pred that they can walk reasonable distances on the flat - but getting up anything more than a gentle incline is a real feat.

You will get back there - you just have to be patient.

Hang in there. When i do my laps my last 1/2 hour is usually the best. But like you I'm working on my breathig and heart rate . Way to fast, at this rate I'll be out of air diving and ruin it for everyone else.

Enjoy the day, taking a day off to rake more leaves. Mariane

That is such a relief. I find I am a bit out of breath on stairs. When we were away recently I managed stairs quite a lot but felt that I was more out of condition than I had realised. I have always walked at a good pace leaving most people behind. I hope this will improve and return to normal. 

My gosh you all put me to shame. I thought swimming half a kilometre today was good!

I swim non stop lane swim for 1 hour with my dive fins and now swim mits for resistance. Before pmr i was in the water for up to 5 hours a day on our dive trips and at our home on georgian bay 3-4 hours so like rhe bike riders I'm doing squat. The mits have tely hoed my arms and shoulders my range of motion is getting better. I try to get 3-4 days a week

Having now acquired a taste for Rooibus I was reading that because of the drought there will be a poor harvest and the price will go up accordingly due to the scarcity of supply!

I guess we'd better stock up then!  My daughter gave me different herbal tea a while ago.  It is tulsi and lavender.  I don't know what tulsi is, but I quite like this infusion.  More on the lines of a mint tea than a substitute for orange pekow, though.  

Also known as Holy Basil Anhaga - used a lot in Ayurvedic medicine.

Also known as Holy Basil Anhaga - used a lot in Hindu medicine.

Interesting.  Of course I meant orange pekoe above.  I am a good speller but a rotten typist.

Sounds like an  interesting infusion. I've just stocked up on some new teas which I had enjoyed when we were away recently. One of them is Rooibus with orange. They are all loose leaf. I think I'll stock up on more of it.