Osteoporosis and Epilepsy Medications

[stillmovin]

Hello. I have posted before regarding my diagnosis earlier this year of osteoporosis in my spine (-2.6) and osteopenia in the other bits. I have listened to the GPs and their advice to take Alendronic Acid and have done my own research into the possible side-effects. I have had some digestive problems and even bruising after only a few weeks on these tablets so the GP has advised me to come off them for a while and then refer to him again in a few weeks, when I am sure it was the AA causing the upsets, and we can look into alternative tablets.

Ok. My problem is I know it may be possible to reverse osteoporosis in a natural way but would very much like to hear from someone who is and has been taking Tegretol Prolonged Release (carbamazepine) anti epilepsy medication for a long time, as I have, as these tablets are likely to have caused the osteoporosis in my case.

I am trying to find someone I can relate my case to who has successfully reversed their osteoporosis naturally without taking conventional medications such as AA and who has still been able to take their carbamazepine tablets. Is anyone in a similar situation? I am unable to reduce my epilepsy meds as it is too risky. This has all been discussed with my consultant too.

It is helpful to find someone who has succeeded in reversing osteoporosis and who is in my situation to start with. I read lots of great things on this site and they are encouraging and helpful, my only concern is that no one is in my situation to start with and therefore I often feel the advice I read is not applicable in my case.

Can anyone relate to this? I would like to hear from you.

Thank you.

[stillmovin]

Thanks so much for getting back to me with useful info. I am really hoping to get someone in my situation to respond xx

[Hidden]

Hi Stillmovin,

I just wanted to let you know that the ROS has a fact sheet that explains epilepsy and osteoporosis. You might find it interesting. theros.org.uk

I hope you get to speak to someone in the same situation as yourself.

[stillmovin in reply to Hidden]

Thanks for that. I am a member of the ROS and they are very helpful. I am trying .to relate to a similar case on the forum as I have never seen the issue come up.

[AnnieW55]

I can’t help your question but I am also a member of the National Osteoporosis Foundation which is an American based forum. It is quite a large and diverse forum - you may get a good response from there. Link below.

inspire.com/groups/national...

[stillmovin in reply to AnnieW55]

Thank you

[Bluster]

Hi Stillmovin,

I've been deliberating about whether to take bisphosphonates for about 9 months. I tried it for about 6 weeks, alongside Calceos (calcium and vit d3) and had some horrible side effects. It turns out, months later, these were due to hypercalcaemia. I continued to take the Calceos (at the gps instruction) after a rest from both, and the side effects returned. I told the gp that I had done a complete overhaul of my diet and exercise routines as soon as I got my osteoporosis diagnosis and it turns out that I was getting enough calcium in my new diet so I didn't need the supplement - I was effectively overdosing on Calcium and it really makes you feel ill. I came to this conclusion myself after a long phone call with a volunteer nurse at the Royal Osteoporosis Society and she was so, so helpful. (theros.org.uk/). I have an appointment booked next week with the gp to discuss the way forward after another months rest free from any osteoporosis medication and I'm going to say that I won't be taking Calcium supplements any more but, after a bad fall down the stairs a couple of weeks ago, I've decided I'm going to try Alendronic Acid again. The fall scared me - for all I know, I have caused fractures in my back - I still can't sit down comfortably, and the prospect of long term pain is awful, I'm only 65 and I'm hoping my spine is going to be needed to hold me up for at least another 25 years! I don't suffer from epilepsy so I'm not on any medication for that, and lucky for me, and I don't currently have any problems with my upper digestive tract so ... on balance ... I'm going to give it another go. My understanding, from chatting to the ROS nurse is that, with exercise and the right diet, I can probably keep further bone deterioration to a minimum but, it's hard work, you have to keep on it all the time, and it won't recover the damage so far and the spine score isn't great at -3.1. I really recommend you ring and chat with one of the ROS nurses. Good luck! Sue

[Sunseaandsand]

Hi, I can not help with natural ways of reversing osteoporosis, but when I was having treatment with the bisphosponates I did have many side effects.

One of the more seroius side effects was blood blisters on my soft pallete and in my throat, I also had bruises and blistering on my fingers, eyelids, knees and wrists.

On discontinuing the treatment my problems cleared up.

I also had digestive problems but was told it could not possibly be the bisphosponates causing my problems because I had it by injection not tablet.

Strange though that my symtoms dissapeared on stopping the treatment!!!

Fortunatley a consultant I saw in dermatology recognised that the treatment was the cause of my problems.

Although not until I had undergone a good number of painfull biopsies.

I hope you find the answers to your questions as I am sure you will.

[stillmovin in reply to Sunseaandsand]

Thanks for this info. Are you on osteoporosis meds now?

[Sunseaandsand in reply to stillmovin]

I had one injection of Prolia last year which was a huge mistake,it robbed me of another 6 months of my life with the terrible side effects it caused me.

I was due to have an infusion of Zoledronic acid in December which had to be cancelled due to my still having problems which were brought on by the Prolia.

With what I am hearing and the research I have been doing I feelvery reluctant to go forward with any more treatment.

At the end of the day I have been on treatments for the last 16 years now and they have not prevented my having 6 spinal fractures.

What they have done for me is robbed me of my good health.

I am sorry if either yourself or anyone reading my reply sees this as being negative, I have to speak the truth and say that my experiences with the bone treatments have all been negative.

[stillmovin in reply to Sunseaandsand]

It is dreadful that side effects such as those linked to osteoporosis medications are so severe on us. Not everyone gets them of course, but the fact that they occur in some people is in itself enough to suggest that they are noxious. It leaves us with such qualms about taking them to treat our condition. I am sorry for what you have been through. I only hope that you find some alternative help to bring about positive change and make up for the months of misery inflicted by the medication. Thanks for offering your feedback x

[LynneH-19]

I took AA for 10 weeks after breaking bones, but then stopped taking it due to a return of gut ulcer symptoms. I eventually saw a NHS consultant who agreed I could try Strontium Ranelate. This was in 2011 and I'm still taking it without problems. Unfortunately because I cannot get a repeat DEXA scan, due to strontium causing inaccurate score measurements, that cannot be corrected for, I have no way of knowing whether my bones have improved, or whether I've just been lucky not to have more breaks.

I'm sorry that this information is of no help to you, as I'm not an epileptic, so have no idea whether SR would be compatible with the medication you take, or whether it would even help you.

I also take D3, K2, Mg and vit A retinol ( from cod liver oil) I also make sure I'm getting sufficient quality animal protein in my diet. My previous 40 yrs of being on a vegetarian /almost vegan diet, certainly didn't do me any favours and I started changing my diet after breaking bones and then realising my protein intake was too low.

I check my D3 blood level twice a year and either take 2000 IU or 5000 IU of D3, depending on the result. I try to aim for a blood level of around 150 to 175nmol/L which is said to be optimal for general good health. I don't catch colds or seasonal flu, since keeping it at this sort of level. Touch wood!

The ROS is helpful regarding their information sheets as your other replies indicate.

Good luck and best wishes

[stillmovin in reply to LynneH-19]

Glad to hear you’re getting on better with diffèrent osteoporosis meds now. I don’t really understand why you can’t have another dexa to check your bone density though. What was your first dexa scan t results? My epilepsy meds seem to be a cause of the osteoporosis and I need to know if anyone in my position has managed to get their t scores improves, without biphosphonates ( spelling?) and while still taking epilepsy carbemazepine meds. So far, can’t get a straight answer in that but hoping someone will be able to help me on this site. Thanks for sharing your info X

[LynneH-19 in reply to stillmovin]

My diagnostic DEXA scan gave femur. -3.5 and spine -2.7

The reason Strontium gives inaccurate scan results, is that its more dense than Ca. Therefore any that gets absorbed into the bone will cause it to have a higher reading, which would be misleading.

The reason why I wanted to take it, is that it acts on both the osteoclasts and osteoblasts so hopefully results in a more ‘normal’ bone turnover.

Best wishes

[stillmovin in reply to LynneH-19]

I understand. I hope you get to have a scan that will give some clear indication of how your bones have been doing since the strontium medication. It sounds like you are doing the right things to give yourself a good chance of building up bones.

[AnnieW55 in reply to stillmovin]

DEXA scans after taking strontium are not much help. This is because as LynneH-19 said strontium is denser than calcium and absorbed into the bones. DEXAs are not calibrated to account for strontium (not even sure it is possible) and cannot differentiate between calcium and strontium, so any readings, which will probably show improvements, cannot be relied upon as real gains (and most likely aren’t). Before taking strontium a person has to be happy with not having any further scans.

One other point is that DEXAs can be very inaccurate anyway. It only takes being positioned slightly different to a previous scan to make the reading a guide at best. This is a reason to request copies so everything can be checked - inaccuracies have been found by patients. Having the scan on a different machine, either serial number (unless it has been calibrated identically) or make, to a previous scan also means the newer scan is a new one and not one to compare to previous ones. Like everything to do with health, it’s a minefield!

[stillmovin in reply to AnnieW55]

It certainly is! Thanks for this, it’s very informative.