Firstly what a wealth of knowledge on this site, I am so glad I have found you all You have been so helpful in all the posts I have learnt a lot by just logging on daily and reading.
I have a question about Alendronic Acid, a lot of you seem to be against taking this, please can you tell me why as I am unsure wether to take it now, I think I would take your advice on this rather than the doctor who told me I should take it.
I am also experiencing a problem with my hair, it is so limp and just looks awful, I was a hairdresser and have always been able to manage it, it not now, I feel a mess.
On the plus side, I will gladly put up with that to have my mobility back and be virtually pain free, I appreciate that I can get back to an almost normal life with the preds.
Before this condition was diagnosed I thought my life was going to be so different, so thank you steroids.
Written by
Riversnan
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Until you have had a dexascan to assess your bone density I wouldn't even discuss taking alendronic acid. It is a drug called a bisphosphonate which is claimed to build bone density - pred makes you lose calcium in the urine and can "leach" it from the bones. You should definitely be taking calcium and vit D supplements if you are on pred - and for a lot of us that was quite adequate to prevent loss of bone density.
AA should only be taken for an absolute maximum of 5 years to avoid the worst side-effects of long term use - and it has been mentioned recently the thinking of some experts is for only 2 years. Certainly there are ladies on this forum who have developed bone problems in well under 2 years.
It is something you need to discuss with your doctor - and insist on having a dexascan. It may be there are problems that need to be addressed - but bisphosphonates are not the only answer and it isn't a good idea to use them "just in case". That is my real objection to them - the way they are used. They may have a role to play - but I want the evidence first. I would have to have good grounds given me to take them. Another GP agreed with me when another had handed them out as part of the Pred package - pred, calcium/vit D and AA.
HeronNS has written a lot about that on this forum - she has some very good info. She'll be along later - when Canada wakes up...
Get as much info as you can, and yes get the necessary tests done before considering AA. I took it for 4 years, without any problems, but a. I was susceptible to osteoporosis (early hysterectomy) and b. on v.high doses of Pred.
With reference to your hair, mine was very limp, lank etc prior to diagnosis (at the time put it down to feeling ill plus ageing). Now, well into feeling back to normal (nearly) it's better than its been for years, my hairdresser commented on that a few weeks ago.
On a bad hair day, just liven it up with a brightly coloured scarf or clips - I'm sure a professional like yourself has plenty of tricks to make the best of it!
Thank you for your help, I will talk to my doctor on my next appointment to ask about the tests.
Re the hair although frustrating not much of a problem as against not being mobile and in pain. I'll live with that, just wondered if anyone else had that and perhaps it was due to one of the Meds.
My hair was like straw and looked terrible. ( I used to have a bob cut with fine, straight, greasy hair). My hairdresser used a four letter word about it! I had it cut very short so it stuck up and looked really funky. A lot of people commented on it. It also has gone very curly although it is not so hay like at lower doses of pred. I have also tried every hair improver known to man.
Thanks for that, I now know it has to be the meds, I am seriously thinking of having it cut as you have suggested but its been a while since I went that short, could be fun. You may have saved me money as I will just stick to the products I know if you found no improvement.
As PMRPro says, one should not consider taking AA (or I might add any of the bone meds) without first having a DXA scan. My doctor was one of those who, as she sent me on my way clutching my pred prescription, wondered out loud whether she should also be putting me on AA, but she decided on her own to wait. I was the one who asked, a couple of months later, for the scan. Which determined I have "low bone mass" aka osteopenia. As this was mistakenly presented to me as osteoporosis initially I was devastated, and correction of what I was told made me very happy. By then I'd done a lot of reading. One thing I've learned is that this whole business of improving bone health the "natural" way is a moving target. But there has been research done showing that micronutrients do improve bone density. And even if exercise doesn't improve bone density (it may) it will almost certainly improve muscle strength and balance, which in turn leads to lower risk of falls and hence lower risk of fracture. Bone mass is not the same as bone strength, which cannot feasibly be measured.
So the choice I've made (easy for me as I've no osteoporotic fractures) is to eat as healthily as I can (supplementing with the usual suspects including magnesium and Vitamin K2) and do a reasonable amount of the right kind of exercise - walking, Nordic walking, tai chi. Although the jury seems to be out some studies seem to show that the latter two not only improve balance, but also have a positive effect on increasing bone density. Certainly they both increase muscle strength, Nordic walking being particularly good for the upper body.
That's a great help, I am reasonably fit and have always been very flexible, I try to walk frequently and as I am now able to be pain free again.
I will speak to my GP on my next appointment. I have taken the AA for the last 3 weeks but will stop now. If it hadn't been for this site I would not have known anything, it's such a wonderful wealth of knowledge, thank you all for making life more positive for people who have only just been diagnosed and don't know what to expect.
Have just been reading this as have been prescribed AA today....and after reading this will not be taking it. My bone scan was good. I will see my dr in few weeks and take the Bone Scan to him and discuss further.
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