Been diagnosed with Osteporosis but also have other skeletal probs?

Had a scan in 2008 because of family with osteopenia.  Scan showed positive and doc put me on calcium & vitamin D3 with a rescan promised after three years. In 2011 went back to Dr requesting a rescan as promised. Told that NICE (NASTY) had upped the period between scans to at least five years. In September 2015, i saw a locum who was my Dr many years ago and he organised a further scan which showed both osteopenia and osteoporosis. Hip joints, lower back bones and thighs had low BMD to varying degrees. Got letter from original doc calling me back in and he gave me AA. Busy finding out about this infernal chemical and will make my own decision later this year. I actually haven't had any fractures and am trying to avoid them by care and exercise. Scan dept say to come back after a year which will be up in October - will have to try and see the locum again! I also have a variety of other problems but these don't give me too much trouble. viz. Food intolerances, high cholesterol, Lichen Planus which recurs from time to time, suspected partial blockage in a cardiac artery and joints which ache from time-to time.  The food intolerance was inconvenient when I first found out about it but I then changed my life-style and began exercising three times a week at a local gym and lost around 4 stone which helped things a lot. This also brought the cholesterol down to within the normal range and avoided the statins that the doc wanted me to take. I actually took a plant sterol supplement and purple grape juice and they seemed to work. The next step would seem to be reducing the red meat intake which apparently affects the calcium in/out balance. Not looking forward to that at all, I love gammon steaks!

That's my boring story.  I've been chatting to people on these discussions and have learnt a lot and also contibuted a little. Thanks for replying, hope that all goes well for you.

Aristotle13  UK.

Hi Eileen,

I did reply to your last post but at the moment the moderators seem to have found something that didn't meet with their approval. If they tell me why, I'll put it right but sometimes you don't get any feedback

Regards

Aristotle13

Hi

I got one reply from you saying that you had just stumbled over the post?? Then  replied to that......it wasnt that one that they deleted.

You can always pm me if its something that doesn't meet with their approval  lol

Hileena

 

It was actually the one a couple back and they held it up for around 15hrs. They didn't tell me why and I couldn't see anything missing when it was eventually published. Since then, being the inquisitive person that I am and realising that I hadn't previosly taken in your massive points score, I went and had a look at your profile and then really saw what a hard time you've had. My problems pale into insignificance beside yours. That doesn't stop me from moaning about the whichness of the why but really, with care, I think that I can beat most of my problems. Your task would seem to be much more deep and complex. Wish you luck with that. I wouldn't mind having an alternative practitioner like the lady with lichen who has a chinese gentleman who  knows what he is doing - Treat the cause, Not the symptoms. I rather like that philosophy. You'll have gathered that I can waffle on at length about very little. Hope that I didn't bore you too much.

Aristotle (also NE England) also known as Colin.

Hi Colin

Sorry its taken me a couple of days to get back to you.

I like the idea of complementary medicine.  Treating the whole person not just the symptoms.

I dont even know the score of mny ostoporosis. The GP said when she received it.......that it was eith because of my arthritis {that  blurred it} or my epilepsy, I have epilepsy since I was 18 months old. Now 69!!!! Tourch wood thats fine. I've been free of seizures since my 2nd pregnancy and she is 34 now so 3 years is a long time. I'm driving etc and everything is normal except I take tablets still but its a small price to pay to be stable.

No your post didnt bore me......I'm originally from Northern Ireland and have the "gift of the gab"   so can waffle as well

Love

Hileena

Hi Kathleen

I've never had Bowen treatment but thought about it and other alternative treatments.

I've never had Bowen treatment but thought about it and others

Tens machine didn't work for me either

I hope your next DEXA scan shows that you are no worse.

My main problem is my 2nd hip replacement......I was doing NHS exercises 4 weeks post op and there was a crack. I fractured my greater trochanter bone

Hence I'm permanently on 2 crutches and the pain is dreadful....the frature will never heal. The consultant and the GP have tried lots of things to help the pain but nothing works!!!!

So my osteoporosis is OK but the ostearthrits, scoliosis, nd this fracture are not.......basically thats me now. That happened over 2 years ago

Good luck with the next DEXA

Hileena

Thanks Hileena. What were your results from the Dexa scan? Do you have the t scores?

Sorry about your pain from the broken great trochanter bone.

My t scores are pretty bad. The worst is the lower spine at -4.3.

Let me know your t scores if you have them.

Hi Kathleen

Thats one of the problems ....when I went to see the GP about the results she said that it said on the bottom of the scan they couldnt figure out a score, it was complicated. Could be because of my hip replacements or could be because of my epilepsy.....have had it since 18 monts old,I'm 69 now and havent had a seizure since my last pregnancy. Thats 3 years ago so apart from taking some meds I'm fine and dont think about it.

I would love toknow the scores but they just say they cant figure them out???

Love

Hileena

Thanks Pam

I agree with you about the power of prayer.....I'm praying but othbers praying as well is a big help.

I was prescribed calcium and Vit D by the doc. What are the joint supplements with hyaluronic acid ??

Let meknow and I'll check that out make sure its not contraindicated with other meds I take......that should be everything covered LOL

Love

eileen

Someone told me that mild scoliosis is common so I thought it is probably not causing me any problems. The bulging discs do though. 

I am very encouraged by your improvement. Well done!

Joint complex usually consists of glucosamine, chondroitin, MSM.  Mine has hyal-joint.  I have shell fish allergy.  It wasn't easy to find one that was inexpensive enough for my budget.  These supplements help with inflamation so you'll have less pain.  I am also on several medications for HPB, blood thinners, and asthma.  I have had small strokes.  So I do understand about contraindications with medications.  It's the first thing I say to doctors when I am recommend a new medication.  If your primary doctor is an internist, they're more likely to recommend supplementation. 

I am allergic to shellfish too.

You have a lot to contend with Pam.

Hope you find some relief and your quality of life improves.

Hi Pam

I'm in the UK {I take it you're not}  Our GP's never prescribe anything like that. The times {many years ago} that I tried that  I had to buy it and it was expensive and didnt seem to work although I might not have perserved with it.

I'm on Anti Inflammatories, paracetamol, BP meds osteoporosis meds  also on stomach protectors because of the anti inflammatories.

The main thing is when I was 18 months old I had epilepsy, this continued untill well into my 20's. Then eased off a bit. When I was pregnant with my first child I had 3 seizures, and 16 months later with my 2nd I had another 3 seizures.She is now 34 and I havent had one since being pregnant with her......a long time. I still have to keep taking the meds. So its those ones I worry about contraindication. ....34 years to be clear is a long time. I drive and lead a normal life etc so dont want to jeopardise that.

So like you its the first thing I ask the GP  LOL

Love

Eileen  UK

I take all the same supplements except zinc and wondered if you had any idea how much the zinc influenced your osteoporosis reversal. Up until last week I was taking AA but have now decided that it's too dangerous and am going the supplement, diet and exercise route. I do miss the caffiene though so that may have to be a gradual process.

For as long as I can remember I always felt that going the natural way is the best way for just about any problem.  I've always knows the with the B vitamins, If you know you need more of one vitamin it is best to take B complexes to avoid depletion of other B vitamins.  That being said, calcium which is what most doctors tell you, but they neglect to mention that other elements work with it to help the healing process.  Magnesium is great for the nerves and is calming agent for many conditions; zinc is necessary for the healing.  I don't think I can mention brand names here, but the brand name I use is very well known and it's advertised quite often.  It also has D3 in it.  I've been taking  this complex for years and got so excited when I was told that I reversed the ospeoporosis.  Do your homework, if possible find a doctor who believes in the old fashioned way.  

To bypass the headaches that come with caffeine withdrawal, change from perked coffee to instant.  Those headaches were horrible.  I still drink coffee but just in the morning.

Thanks Pam,

I'll note what you say and do a bit more research.  Finding the doctor could be more difficult

I have just added zinc. I think it is worth a try.

Not sure why the moderators have jumped on my recent post. Might be because I quoted a bit about zinc that was contained in book. If you want the paragraph I'll type it in and mail it.

Put it in a private message please. 

I saw you took the plunge and stopped taking AA.

It will be interesting to see if we manage to improve our bone density over the next year.

I've sent it and it should be with you soon. It seems that we've only been getting half of the story and things won't even begin without the zinc to set it off. It could explain lots of things that don't happen as they should.  I'm not certain how you tell what the blood level should be, I haven't found that yet!

Regarding the AA, it was the painful reflux and what it meant that tipped the scales. I couldn't tell the difference between an angina attack or AA and along with all the other risky things associated with AA, the decision suddenly became clear and easy and you wouldn't believe the relief having decided. All energies are now focussed on the NEW (for me) way (Even got a good decaff coffee!)

Good on you Aristotle! Yes, zinc seems very important. I have begun to take them already.

I do think our environment has let us down and vice versa.

Fingers crossed!

My T-scores as a starting point, are given below:

Date of test: 21st September 2015.

Spine :                               L1      -2.2

Spine :                               L2     -1.0

Spine :                               L3     -0.4

Spine :                               L4     -1.7

Right Femur :                 Wards  -2.3

Right Femur :  Rest better than -0.9

Left Femur :                   Neck    -3.5

Left Femur :                  Wards  -2.6

Left Femur :   Rest better than +0.6

It will be interesting to see how things go. I'm taking 15mg zinc citrate daily as well as the calcium and vitamins D3 & K2 plus six sticky dried prunes. I just hope that with the exercise and diet, it will be enough. Pam above, managed it last year so there's hope for us yet. I'll even get a plus for the decaf coffee!

Best of luck. If I discover anything else that could help us, I'll be in touch.(Still got half a book to go)

Did you ever hear how Alison got on with her Brain operation?

A

Those scores do not warrant taking AA in my opinion anyway.

My husband is very lucky as he has plus scores where mine are minus, -3.4 he is +3.4.

 

No, I think she said she would not be back so unless she is friends with someone on here, we may hear how she is.

I do agree with you but this was my first confrontation with this type of medication and I assumed (wrongly) that my Dr would know what to do. I have the impression that he just prescribed the first thing that he thought of.  Being a little more knowledgeable after reading and chatting, I now know that my own course of action along with help from friends will probably give a significantly better outcome.

Thanks for the info on Alison. I quite liked her outlook on life.

 

I meant that we may not hear from her unless someone is friends with her can tell us how she is doing. Or she may return later on.

We assume doctors know everything but they do not and also they do not have the time to research that we do. There is also too much to know for them to cover it all.

Some have closed minds as well but I have a great one luckily.

I am having a bone density scan on Tuesday so it will be interesting to see if anything has changed after one year. Most of my knowledge is only months old or less so it is too soon to hop for an improvement, most likely.

 

Good luck with the scan, I won't even ask until after September - Too soon to expect change anyway. By then I should be able to see some change. We could be experts by then !!!

Thanks Aristotle. We are informed and learning more each day for sure.

I hadn't noticed anyone commenting on withdrawal symptoms when you stop taking the AA pill. So this may be another first and certainly a further step along the knowledge trail.

Last pill was on wednesday before last, 30th April. First missing pill was this wednesday 6th April. Reflux began on thursday 7th April. Headache and tender cranial skin began on friday 8th April and is ongoing. Joints seemed a little stiff and ached somewhat on friday and this is increasing. Muscle stiffness, aches and cramps also increasing were evident today Sunday 10th April during five mile walk. Hoping that it doesn't last long, I don't want any more pills and I'm definitely NOT restarting AA. Let the battle continue.

Could it be connected to the fact that stopping taking AA does not mean it is not in your system?

Just assume it is the reducing of the AA out of your system for a start at least and see if the side effects reduce as time goes by.

I see very little to support the idea of taking this drug the more I learn.

My sister has been taking AA for just over a year. She supports the taking of it but she is reporting a general unwellness with pain in her ankles.

I cannot say much to her because she is adamant about taking it. She is not researching or reading anything that contradicts its safety. There must be a lot of people like her who are not well but not acknowledging that AA is involved in their state of health.

Hi Pam

Just come across your post. I wonder where you get your joint complex supplements from?

I'm prescribed calcium and vit d3, I also take K2 but was unaware of needing the zinc and magnesium. Do you obtain it all in just one tablet? As yet I haven't decided on the OP drugs, the many possible side effects scare me but then so do broken bones, what a dilemma for us all. Your help is greatly appreciated. I wish you well.

Tania

I usually get over the counter which is calcium, magnesium, D3 and zinc. I take 1 tablet in the morning and one at night. It is all combined in 1 tablet.

Hi Kathleen

It will be quite a few years before I'm totally rid of AA even though I was on it for only five months. It only reduces by half over some time and this repeats. I haven't actually seen a half life of anything other than five years. I wonder if that applies to a single pill?

Had the base of another filled tooth rotted off so maybe I've just got a poor dentist who should have made sure that all was well before proceeding. I initially blamed AA for the teeth problems.

Have been chatting to Eileen as well, she was interested in the 'natural' way.

Regards

Link to Strong Bones support Group (2) by Handbrake

https://patient.info/forums/discuss/strong-bones-support-group-2--513840?page=0#2128296

The conversation started here:

https://patient.info/forums/discuss/bonviva-ibandronic-acid-506991?page=0&order=Oldest#2093953

Link to : How much supplement is too much in an attempt to help our bones; by Kathleen65757

https://patient.info/forums/discuss/how-much-supplement-is-too-much-in-an-attempt-to-help-our-bones--515159?page=0#2128641

Here is the Chat Room Strong Bones Support Group post.

https://patient.info/forums/discuss/strong-bones-support-group-511551