ME and taking biophosphonates for osteoporosis?

Oh thanks Jackie, that's great to hear. I'm so worried. Yes, you're quite right about sensitivity to drugs. I tried statins for eg and just couldn't tolerate them. I thought perhaps I could bypass taking the orally and just get them injected once a year as I have had major stomach problems related to the ME in the past. But then you're stuck with any side-effects, aren't you, for a whole year. So relieved to hear they've not had any ill effect on your ME. Have there been any other side-effects? I was told I can only be on them for 5 years - what about you?

Thanks so much. xx

No, I haven't had any side effects at all. And I've been on Actonel for about 7 years. I actually have an appointment in a few weeks, as my doctor has told me that I now need to change meds to get a better effect. I'm a bit nervous about this, as she's mentioned Reclast, which has a black-box warning. 

Hi Jackie,

I've been recommended Actonel too (risodrenate) too. Did you start on the 5mg daily or slowly build up and if so, what did you start on and how slowly did you build up (days or week)? It would be so helpful to know so I can follow suit.

I was told that you are only on biophosphonates in the 5 years after you start the menopause as this is when you most quickly lose bone. After that, the loss tails off. This is from a consultant who specialises in osteoporosis here in Scotland. The reumatologist I initially saw for a second opinion after my GP just said: go on the drugs now pre-menopausally. But the osteoporosis doctor said: no, wait till post-menopause (this was 2 years ago when I was 49) so you can use your '5 year magic bullet' of the drugs to most effect.

What were you told and by whom? A specialist or a GP? I was told definitely not to be on any of these drugs more than 5 years. So confusing to get different advice!

Your " major stomach problems" may be affecting your ability to absorb Vitamin B12 from your food.

Some of the symptoms of B12 Deficiency mirror those of ME/CFS. so you might benefit by having your serum B12 and serum Folate levels checked.

Thanks Clive,

Funnily enough I did check them and they were very low - not outside the normal ranges - but low. So I took supplements and it's made no difference to my health (ME is really quite distinct in its symptoms) but has improved one symptom which I suffered from which had nothing to do with the ME - breathing problems. Within a week of taking a high dose Vit B12 the breathing problem - which was thoroughly checked out  - had gone. I was gobsmacked. So thanks for recommending them. I hope someone else sees this and is helped.

I'm glad B12 has helped at least one of your symptoms and unbeknown tou you it may well be repairing damage a deficiency/low level has done to your nervous system over time.  It is not an overnight magical cure.

So, keep taking the B12 and make sure that your Folate level is good either by eating plenty of leafy green vegetables, sprouts, broccoli, asparagus, beans etc or taking a Folic Acid tablet for 3 or 4 months as this is essential to process the B12,

Sadly many doctors dismiss testing for vitamins.

Vitamin B12, one of eight B vitamins, is essential to blood formation, regeneration of vitamin B9, or folic acid, DNA synthesis and the proper function of the brain and nervous system. B12 is an essential vitamin. Essential nutrients are molecules the body cannot produce on its own. So they must be supplied in the diet. Even just a small deficiency of vitamin B12 can have drastic effects on mood. Symptoms of a small vitamin B12 deficiency include anxiety, stress, irritability, depression, fatigue and mental confusion. To prevent a vitamin B12 deficiency, take a vitamin supplement or incorporate foods high in vitamin B12, such as beef, liver, seafood, fish, cheese and eggs, into your diet.

Vitamin B12 helps generate the fatty layer of the nerve endings, also known as myelin. The myelin layer must be intact for neuron signals to transmit properly. A vitamin B12 deficiency may impair the myelin layer and prevent proper signal transmission.I wish you well for the future

Thanks Clive. I think the problem for anyone with a health problem is that sometimes you are not, for some unknown reason, 'accessing' your available levels of whatever vitamin/mineral. So you appear within the norm but you are actually deficient.

Conversely, it sometimes happens - in the normal population -  that people are deficient in their tests but have no symptoms, or so I've read. So it's not at all straightforward. 

Thanks so much for you concern and advice - really appreciate it!

Linda, I can't remember if I broke up the 5 mg pills to start on an even lower dosage initially. But I don't think there would be any problem in doing this. Unless a pill is time released, I think it's ok to break it up. Like you could take 1/4 of the 5 mg dosage for a week to begin withj, then 1/2, etc. This is a very safe way to start a med. It allows your body to gradually get used to it, minimizes chances of side effects, and lets you see if there are side effects even at such a low disage. I've always been under the care of a specialist for my osteoporosis--a rheumatologist.

Thanks Jackie, I think that's an excellent idea and I'm going to ask my doc about doing it this way. What I can't understand in your case, is I thought you were only allowed to be on these drugs for 5 years. Is it then the case of just moving on to a different drug? Do please tell me what your rheumatologist tells you on this point. Thanks so much.

My previous rheumatologist felt I could go a couple more years than the recommended 5 years. I'm sure, as with any med, a specific case may override the general recommendation. But now, my current rheumatologist says the Actonel is no longer effective, as evidenced in my most recent bone scan. So it's on to another drug, such as Reclast.

I see. So it's a case of trying always to keep your bone density up. I wish you good luck on it. Do tell me how you get on. xx