I'm down to 6 mg... Finally

No, wait at the dose that works for a month or two and try a small drop again. If it doesn't work, do the same again until it does. It will work eventually. You are never reducing relentlessly to zero - you are looking for the lowest dose that manages the symptoms and that isn't the same thing.

I developed night cramps with PMR long before I went onto pred. However, pred makes us lose magnesium so sometimes magnesium supplements help - it is the first thing doctors here where I live ask when you complain about cramps.

Why you learn more here? We've had PMR/GCA and taken pred. Rheumies know the theory (which is often flawed), we've walked the walk.

Thank you Eileen for your quick reply.

I will wait it out on 6. The "noticeable" side effects I've had from the pred have pretty much diminished, but still worried about the side effects I can't see happening, ie, the osteoporosis and the glaucoma to name a couple. The thinning of the skin on my arms and legs is still happening. I'm bruising and bleeding everyday from small contacts, ( bandaids out on the kitchen counter).

I have an appointment with the Rheumy next month, kind of wondering why I should even go. Guess to keep the pred med prescription, and maybe he could order another DEXA scan. But as far as getting valuable information.... that's right here.

I had had no significant change in bone density after over 7 years on pred - I only took calcium and vit D too. Nor have i had any sign of raised occular pressures over the same sort of period. I was told by an eye specialist it either happens or it doesn't and after this time it was highly unlikely to appear. As long as you see your optician and get them checked (easy in the UK, I have to see the hospital specialist here to get pressures checked) and have a dexascan done as often as you can achieve there should be nothing to worry about there. They aren't inevitable - some doctors just make it sound as if they are. People with normal bone density have fractures - people with osteoporosis often don't.

Make sure you moisturize your skin with a really high quality product, probably buy from the pharmacy, and drink enough water. I understand that Vitamin C and retinoids help skin health as well. So a diet with good vitamin A content should also help.

A well timed piece of advice for me. I did not even think about trying to sort my skin out. I am a gardener and those little leaves etc create havoc with arms and hands now. Someone this week asked me if I had had an accident as my arms/hands are covered in bruises and cuts (as usual). Like Amkoffee, I am now down to 6mg , so I was watching and waiting for my bruising to improve as I go lower. I might wait just a bit longer now before I moisturise, so I can see if it improves by itself as I drop.

My bone density has dropped just recently (bother) and my Doctor has talked me into taking Fosamax now. I have been advised by 2 Doctors in NZ not to take Calcium supplements, as it has some detrimental effect I did not understand (nothing to do PMR or pred). They always used to recommend it, but stopped doing so years ago. I stopped Dairy (except cheese of course) 40 years ago, so I knew I could be in trouble.

We do not have Vitamin D testing here, so I do try to get my daily 10 minutes out in the sun just in case mine is low.

I do wish we could be tested here to see if we do need to take extras.

Flutterbie57,

I too am down to 6mg, and still having the the easy, and I mean easy, bruising and bleeding. And I am on alendronate, same as fosamax. I think it is harmless.I have read, (probably too much), on the internet about calcium and taking supplements, and sometimes just want to toss a coin. I have been taking calcium from a sea algae source. Get it on Amazon, and pay for the hype.

I've been stuck on 7 mg (split 50:50) since July without PMR symptoms. Just some bleeding under the skin. Twice I've unsuccessfully tried a 6.5 mg taper.

Currently I'm trying 6.7 mg but, after a week, I feel weary in upper arms and legs. I'm hoping it's just prednisolone withdrawal and I can maintain the taper in weeks to come. This weariness has not much affected my strenuous exercise regime.

Eileen says her osteoporosis has not worsened in 7 years. I wonder whether weight-bearing and bone-jolting exercise has helped her? That's my hope!

Incidentally, PMR has had no impact on my beard.

I spend considerably more than 10 mins per day out in the sun but without sunscreen and without supplements - the lowish dose one with calcium was all I needed - my vit D falls to pretty low levels. You cannot rely on sun exposure - especially at our age.

Calcium may get deposited in other places where it is not required, such as in the artery walls, but the evidence was that actually the problem with calcium supplements was more in healthy people on a good diet taking calcium supplements for no good reason and ones who didn't take vit D as well. We are not "healthy", we are on pred which encourages the loss of calcium via the kidneys and which also suppresses the vit D level. That is different.

I have never been a slender sylph-like creature since I had measles at 6 years of age - so I doubtless built up really good bone density in my youth. That gives you a good start - but about half of people on pred don't have a problem, In fact, I have seen figures that 40% of patients on pred develop osteoporosis, 50% of the general population in the USA develop osteoporosis. Those figures suggest pred may be protective . Don't they?

That's my story, too, and unfortunately the thin skin persists five years on from zero pred. I find the only answer is long sleeves, not much fun in the summer we've just had and pity about the Vit. D I'm blotting out!

Joydeck,

Are you taking little fragments of pills to get that fine division, or does prednisolone come in liquid form? And do you mean 'weak', in upper arms and legs, when you say "weary"? I've been feeling weak in my upper arms, but was thinking, (hoping), it was from transplanting my blueberry bushes, and not from dropping to 6mg.

So there is a prednisone withdrawal? Rheumy hasn't mentioned that one.

I did not realise we lost vitamin D with age , or that pred suppressed it. I will bring this up at next Doctors appointment. Thanks

Oh noooooo. I did not realise that the skin thing would continue for years after. By then I will probably be due to get it anyway. Moan ! I usually wear long sleeves now when I go out, but I have been putting off getting long protective gloves.

I would like to think so (protective) I mean. I was the opposite of you.....anorexic before anyone new that word. Twiggy saved me ! My bones were better than average, but have now deteriorated, but that could be genetic...... so many complications when we age. I always pictured you as a sylph-like little lady tho. Funny the impressions we form on this new age communication. I have now joined the tele tubbies tho.

The production line for vit D in the skin slows down - at 65 we produce about a quarter of what we could at age 20. And we don't tend to expose as much skin anyway. Plus even a light suntan slows it down tremendously.

I'm a whole 5' 1" on a tall day - they once made me 4' 11 1.2"!!!! I do look fairly little I think - but am solidly built whatever way you look at it! I once made it down to 8st (112lb, 50kg) which theoretically is a reasonable weight for me - I looked like Twiggy, it isn't a good look for me!

I'm not overweight - I'm undertall! Buying clothes is a nightmare because down to my hips I need "normal height" clothes - the petite ranges are great for hem length but the waist is halfway to my neck! "Normal" length has the hem at mid calf and trousers need a good 4 or 5 inches removed. If I were 4 inches taller ...

Those figures do support the recent study that suggests osteoporosis is equally likely with or without pred.

Have you undertaken regular weight-bearing and bone-jolting exercise in recent years that might explain, in part, your good bone health?

I weigh pill fragments to the nearest mg. For instance, a 6 mg fragment may contain 1 mg pred.

I mean weary rather than weak in that the weariness does not inhibit strenuous sport – just makes it less enjoyable. I've been on 6.7 mg for a week now and another week may make matters clearer. Of course, I might simply have an unpleasant virus , which would be quite a coincidence.

Below 7 mg, prednisolone withdrawal pain is a real possibility and symptoms may be expected within a day of a small taper. PMR symptoms, by contrast, may take several days to manifest.

Weight bearing yes in that we walk almost everywhere when the weather allows - but that is all, PMR is a bit limiting because mine involves trochanteric bursitis that walking tends to aggravate. For a few years, pre-PMR, I did a lot in the gym but not so much the weight-bearing stuff, aquafit and classes aimed at older people mostly. I've lived here since I started pred and neither are offered. I don't really know how much of anything you need - but being a well built young lady I'm sure that contributed some!!!

Withdrawal is a function of change of dose - it can happen at any dose, not just below 7mg. It is the body objecting to the change, not just the fact it is a lower physiological range dose.

Do you know how much Vit D and how much calcium and mag, we, with PMR should be taking daily?

The supplements provided by the GP, such as AdCal or Calceos are usually OK. You need a vit D blood test to find out if you need more. Magnesium I don't really know, I assume I get enough with my diet which has a lot of magnesium rich foods but I do occasionally take an OTC supplement if I have muscle cramps.

Paul Clayton, of the Institute for Food, Brain and Behaviour, this week announced that none of us get enough vitamins and minerals from our diet as we need to eat at least 3000 calories a day to get the correct amount. He seems to ne selling something!

<MODERN sedentary lifestyles make it impossible for people to get enough vitamins and minerals, an Oxford academic has said, as he backed a super-supplement that claims to radically improve health. >

There was an article in the press this week on a cure for osteoporosis from deer antlers.

< DEER antlers may hold the secret to curing osteoporosis and other debilitating bone diseases, researchers have revealed.

A study has identified the specific genes responsible for the growth and strength of antlers, paving the way for a future human genetic treatment.

A form of temporary external bone, antlers sprout in the spring and by the summer can grow at up to two centimetres a day before beginning to shed by winter.

Peter Yang, an associate professor of orthopaedic surgery at Sanford University, said: “It made me wonder – are there special genes that are behind this unusually fast bone growth?”

From samples taken from sprouting antlers, which are still soft and have a form similar to cartilage, his team identified the area of the animal’s genome governing the growth. In particular, they found a gene called UHRF1, which supports rapid bone cell proliferation, and S100A10, responsible for rapid mineralisation, or hardening, of bone.>

One would imagine it has a lot to do with what is in your diet. Lot of empty calories in some foods, lot of magnesium in a bowl of green veggies and salmon...

Rapid proliferation of cells. Doesn't that sound like a disease we all want to avoid?

My thought, too.

Which cells and how do they know when to stop? There aren't many sure- fire safe quick fixes in any sphere. I like a gamble as much as anyone but not with my health.

As I understand the matter, prednisolone withdrawal symptoms will never occur where the daily pred dose is well above 7 mg and tapering a mere 0.5 mg a month. Below 7 mg, symptoms may well manifest.

I'm 5'2", or I hope I still am. I was always 7 stone or 7.5 stone so I was sooo excited when I started to put on weight. Buying clothes is always a nightmare since they got them made in the east (they don't fit chubby). We get some wonderul Italian ones now which are expensive tho. Bolivia is the only place I have ever bought trousers you do not have to take up. Fashion was a little different tho! I am now 75kgs(recently lost 5kgs easily on a totally Asian diet, in Asia. They do serve my perfect size meal.

I do need to look into this as they introduced deer farming in NZ many years ago to provide a health supplement which was popular in Asia. I wonder what it was .

Joydeck: That may be your understanding - but I can assure you there are MANY people on the PMRGCA forums who would disagree. They are far less likely to occur with 0.5mg reductions - but again there are people who are so sensitive to the change in dose that they will notice. As the total dose reduces the percentage of a fixed dose reduction increases as a relative percentage and the higher the percentage, the more likely the body will notice it so obviously it becomes more noticeable below 10mg. But withdrawal is a factor for many people even when they are on 60mg and told to reduce by 10mg, for some even 5mg would be uncomfortable.

I'm telling you what many dozens out of hundreds of patients have experienced and talked about. Not theory...

Flutterbie: strange isn't it! I live in Italy, there are lots of cuddly ladies of a certain age and many of them are small like us. Can I find clothes that fit??? Can I heck! I get looked at in many shops as if I am an alien when I ask for larger than a UK 14. Austria is better - but they tend to be taller...

I think we agree.

A 5 mg reduction at 60 mg may well cause prednisolone withdrawal symptoms but I doubt a monthly reduction of 0.5 mg would.

Quite - but NO-ONE, not even me, would suggest 1/2 mg or 1mg reductions at 60mg. It would take you forever and isn't a realistic solution. But doctors frequently tell patients to reduce 10mg at a time, recently we have heard of patients being told to halve the dose from 60 to 30mg after a few weeks. And at that level you may still flare with GCA if the disease activity is high - you need to be able to tell the difference.

I think the whole thing is a big con trying to get the whole world to use his super supplement, which presumably costs an arm and a leg.

I am not sure this is a health supplement they are looking at, more like trying to amend the genome somehow.

Wow! There are three deer in my yard right now. No antlers though. Maybe some old lady got theirs. (It wasn't me.) No kidding though, very interesting.

They are looking at it from a scientific perspective, but it was introduced here in the 70's I think, as a highly sought after supplement for Asian tourists. Perhaps Asia knew something, that is only now being scientifically tested.

I am sure the supplement will cost an arm and leg also, and if it is as good as the advertising says, we should have been seeing a lot of Golden Oldies swinging from the chandeliers. Well that hasn't happened....... yet.

I am at the point again, where I mentally need to try something else to help myself, so I think I will give it a go.

Wow ! Where do you live where deer wander into the yard ?

I live in Vermont. Open season starts today, so hopefully the deer will retreat into the woods for the next three weeks, until it's over. The hunters are only allowed to take the ones with the antlers. Maybe there is more to hunting than what meets the eye.

So are there antler supplements available in the legal market now?