Reversing osteoporosis pt 2

[HeronNS]

It will be one or two YEARS before I get the appointment with the specialist. I've done some reading on the drugs offered and am not convinced they are worth the risk. Feel really down. I was going to say I felt shattered, but that seemed like an unfortunate word choice given the situation. I think the worst part of all this is the loss of control. This is not the way I wanted to spend the last years of my life. This is the time when we should be devoting more time to things of the mind and the spirit, not concentrating on keeping a weakening body going.

[magmapearl3]

HeronNS - this IS the time when you 'should be devoting more time to things of the mind and spirit' . You do have control because you have choices . For example : you are body, mind and spirit so maybe trying to focus equal time on each would be beneficial? Your body may feel weak but your mind and spirit is strong. It's not easy and it will be a challenge but I wish the best of luck and love to you .

[HeronNS in reply to magmapearl3]

Thanks. Priorities I guess. I'll try harder.

[Rjw2014]

I would be inclined to pay for a private consultation with the specialist. I have been on alendronic acid and calcium and vit D since starting on predict for GCA this time last year. I have always been very active, having several horses and a lively dog that needs brisk walks, but even so, when I finally got my dexascan I was surprised to find I had osteopenia. I dread to thin, whatnmynbones would have been like without the intervention. I always had "good bones" to the extent that when I was trampled by a horse which actually galloped over my chest I didn't even have a broken rib, but I feel I need to be more careful now. (That's pred not predict, wretched auto correct)

[Judigardener]

I agree. I'd borrow the money if I had to. A consultation will cost about £200.00 but you may only need the one.I know not everyone has the money, but if you sold a few things on eBay and Amazon for books, if you didn't have the cash readily, and couldn't raise it another way, then you could go. I would not wait that long. It is too long to muck about with your health. Good luck. x

[Celtic PMRGCAuk volunteer]

Heron, I believe it's true that initially many of us do feel a "loss of control" with this illness - that's certainly how I felt when stuck in bed in agony for 4 months prior to diagnosis. However, once on Pred and finally being able to walk again and wash and dress myself, albeit it a snail's pace, I sought to get some control back over my life. For me, now knowing that this was an inflammatory condition, initially I decided to research non-inflammatory and pro-inflammatory foods to help myself, eventually feeling blessed that there was at least one area of my life that I could control and even more blessed that I had been diagnosed with something that was life-changing for a while but certainly not life-threatening like some other illnesses.

As far as your diagnosis of osteoporosis is concerned, although it isn't the news you wanted to hear, you can very definitely still "control" the situation - perhaps initially by arranging a private appointment rather than waiting one to two years? That's the path I had to take when told that I would have to wait a year for my first DEXA scan! One thing is certain and that is that with a diagnosis of osteoporosis you do need to have some bone protection to protect you for the future. There are lots of choices out there and many people are taking such medication without any problems as I'm sure some of our members here will confirm. All good wishes.

[PMRpro Ambassador]

If you are already osteoporitic then it isn't going to improve on its own - and the others have offered some sensible suggestions. We can't control everything, we can't have it all our own way all the time - but if you reject all medications for up to a couple of years you could be in a far worse state than you are now and be lastingly unable to do what you want. Taking a tablet is no big deal - what IS a big deal is that it may have side effects. OK, fair enough. But whatever you start with, there are a lot of people in the world who are taking it without any difficulty at all. I take a load of meds for atrial fibrillation and some of them have a bad reputation for causing side effects - I have none, or none I am aware of. The same applies for bisphosphonates.

I would be the first to say wait and see if your bone density requires it before taking any of them. I do not approve of mass medication "just in case". I am also one of the first to say that, once you have the evidence that you do require something, get on with it and take up the offer. Can't remember now - what have they offered you?

You say "am not convinced they are worth the risk" - ask someone who has had spinal fractures what they think.

[Lyn_seaside]

I am 59, been taking alendronic acid since I was 45, with two or three one year breaks. I have never had any side effects and it's easy to accommodate taking one pill a week. Dexa scans show that it's keeping osteopaenia level. I know this isn't everyone's experience, but I'd say give it a go, you don't now how you'll react. I've been on Pred for nine months and am due another dexa scan next year. If my bones need to carry on the medication, so be it.

[tiasbear]

I read on worst pills.org that AA has no effect on steroid induced osteoporosis. There have been been studies done on it. I have osteoporosis and chose not to take it. I do take calcium, vitamin D, and exercise instead.

[HeronNS]

Yes, I was having another "white night" last night and found some really legitimate research which said exactly that. There are other more recent drugs which apparently are no better, and in some instances worse, with the same potential side effects. I know that building bone is a very slow process, but we still have our osteoblasts and osteoclasts, and the secret must surely be to encourage the one and discourage the other.

[PMRpro Ambassador in reply to HeronNS]

"the secret must surely be to encourage the one and discourage the other"

Which is what the bisphosphonates do. The inhibit the resorption of bone:

"Bisphosphonates attach to hydroxyapatite binding sites on bony surfaces, especially surfaces undergoing active resorption. When osteoclasts begin to resorb bone that is impregnated with bisphosphonate, the bisphosphonate released during resorption impairs the ability of the osteoclasts to form the ruffled border, to adhere to the bony surface, and to produce the protons necessary for continued bone resorption"

They have some effect on the osteoclasts but not in such a way as to actively ENCOURAGE extra formation of bone. so, bisphosphonates won't necessarily improve the situation if the rate of resorption exceeds the rate of creation of bone. That's what will happen in SOME people because of pred - but not everyone. Pred doesn't always cause even loss of bone density never mind getting as far as osteoporosis. They should slow it down because they slow the resorption down and the bone building will continue at a similar rate to normal and that is the justification of automatically using alendronate alongside pred. But without far more detailed studies you couldn't tell if it gets you to a stage where the building is more than the resorption and needless to say the manufacturers aren't going to do that sort of study are they! The reality remains that there is excessive resorption in some people even when they aren't taking pred. AA must be something you use in the hope of reducing that.

Forteo, on the other hand, actively encourages building of bone so even if the breakdown is still occurring, the formation of new bone will happen. Prolia/denosumab is classed as a bisphosphonate but works on a different substance to do the same thing and seems to work well even for people with severe problems.

[HeronNS in reply to PMRpro]

Bisphosphonates are implicated in far too many side effects, moreover the bone that is produced is more brittle than naturally produced bone and in subsequent years can lead to greater risk of fractures, even though it gives the appearance of increased bone density. Not just quantity but quality is a concern.

[HeronNS]

Hopefully this isn't a duplication of an earlier comment I can't find, may not have hit "post": I don't think I have an option for private consultation in this province. I actually approve of that as I don't believe anyone should be able to jump the queue just because they have money.

[peanuckle in reply to HeronNS]

Hi HeronNS:

I agree with you re jumping the queue but if there is more than one specialist in your area it's worth giving the others a call on your own to see if you can get in sooner. Living in BC we have same problems getting in to see a specialist but I have had to call on my own and have been able to get in to see someone on a cancellation (doctor has to e-mail or fax the referral). Re Fasomax (or similar) - I was on this for about 15 years and went off last year to give my body a rest. Bone scan was OK - no change. I may go back on again if I have to increase my pred. dose. Take care of yourself.

[HeronNS in reply to peanuckle]

hi Peanuckle! This is THE specialist. I see no point in seeing anyone else even if there is anyone else as she is the one who specializes in osteoporosis. I suspect the reason I have not been given a date for the appointment may be because my GPs office may be waiting on a possible cancellation anyway. I had to wait what seemed a long time to hear about the bone scan appointment, but when I got the date it was not that long afterwards. I am going to attend a clinic at the local hospital and should get some guidance there. Thanks!

[peanuckle in reply to HeronNS]

Good luck and take care of yourself

[Patsy235]

Hello, I can't seem to see part 1 - Is the drugs you mention Alendronic Acid ETC. I ask this as I have been suffering from a severe cervical spine for four years now. I also have a lesion on my thoracic spine. Due to the lesion I have several MRI's every year. My neurosurgeon is a gentleman and very astute. Since then I am told they cannot operate on the tumour as it is in my spinal cord - if it grows they will operate and I will end up in a wheelchair. I was also diagnosed with Osteoporosis mainly the spine and Fibromyalgia a year later - so three years ago. I wasn't keen on the Alendronic acid - but I am pleased to say I went for my three year Osteo x-ray and my spine is now classed as Osteopenia. This is the stage your bones go through before you are classed as having Osteoporosis. I am in pain on a daily basis; aided with opiods I manage. These medications take away the severe pain.

Talk to another health professional - a second opinion always helps you think clearer. Most of all I wish you health - becasue wealth and happiness are second to this.

[Patsy235]

Just noticed the replies you already have. I live in the sticks of Cumbria - our health care is shocking. However, you don't need a consultant for a Osteoporosis X-Ray; every hospital have one of these to measure bone density. My G.P sent me for the initial scan. Took two minutes, and I was told within two days.

[HeronNS in reply to Patsy235]

Hi Patsy. Thanks for your comments. I've had the scan, just wasn't told my T score, which I will get next visit to GP (for pred prescription renewal). I'm just going to do what I can. There are so many things to consider and one thing I don't want is to get caught in the big pharma web. No, I don't consider myself a health fanatic despite what some might think. I also have had two friends tell me that they reversed their osteoporosis and at least got into the osteopenia stage. All through "natural" means - mostly load-bearing exercise. I do know this does not happen overnight. Thanks again.

[Patsy235 in reply to HeronNS]

Thank you for your reply. I do not go to the gym, or do any kind of load-bearing excecise due to having a poorly spine; but I do the housework - major task! It must have been the Alendronic acid 70mg weekly that reversed the Osteoporosis. I have no side effects from this medication and actually enjoy taking the Vit D supplement Adcal - these you suck and are just like mints. Two Rheumatologist have actually said I do not have Fibromyalgia now and are looking once again into autoimmune disease. Round and round the garden.........

This is your decision to make.

[cassey1879 in reply to HeronNS]

can you tell me how your friends did it? I now have the osteorosis told dr. would take it but not gotten filled. Do not do well with meds and have gastro problems already, finally after a year gone from 60 mgs. pred. to 25 this week. Going to start weight bearing and lifting weights. Thanks. Also told taking too much calcium. Thans

ks

ld

[HeronNS in reply to cassey1879]

Yes, the gastric side effects are also a concern. Several years ago I apparently had a burst blood vessel in my stomach. Could have died. On top of what pred may already be doing, well, I have no interest in becoming one of the "rare" statistics. Also some researchers claim that there has been significant under-reporting of the jaw necrosis side effect.