Treasure Your Bones! M.E. and Osteoporosis Part 2 - DXA Scan results & medication

In this post I will discuss my DEXA scan results and my response to medication prescribed to strengthen my bones. 

The DEXA scan results 

The clinic which carried out my DEXA scan sent me a copy of the results and the recommendations of the consultant rheumatologist for me to review before I went back to my GP.

It was very useful to have this information before I spoke to my GP.  I've uploaded scan results so you can see the format.  

Although my bone density isn't dreadful, it is poor for someone in their early 50s, especially in my hips.   I was diagnosed as severely affected by ME in 2004, and this has clearly had an impact on my bone health.  

Recommendations

The main recommendations of the consultant rheumatologist who reviewed my scan results were:

• re-mobilisation with weight-bearing exercise and reassess "chronic fatigue"
• check for any clinical courses of osteoporosis (e.g. coeliac disease)
• oral bisphosphonates, calcium and vitamin D
• rescan in three years
• if unable to tolerate medication consider referral for IV Zolendronate / sub cut denosumab

Medication prescribed 

My GP prescribed the following:

• Alendronic Acid 70 mg (a bisphosphonate) to be taken once a week
• Adcal D3, equivalent to 600 mg calcium and 400 IU of vitamin D3, to be taken twice a day

Note: there is an interesting episode of Case Notes on Radio 4 regarding Vitamin D which you can listen to here

Prior to taking the bisphosphonate my GP recommended that I visit my dentist.   This is because a rare complication of taking bisphosphonates is Osteonecrosis of the jaw (ONJ).   This is where cells of the jawbone start to die.  Sometimes this occurs spontaneously, but more often this occurs following dental extractions or oral bone surgery.

Initial response to medication

The first side-effect was severe constipation.  I had received a letter from the fracture liaison clinic advising me to ring them if I had any problems with my medication.  I gave the clinic a call and they advised that I should reduce my dose of the calcium and vitamin D and take prunes. There does seem to be some evidence that prunes can be of benefit to bone health, although this was not mentioned to me at the time.

The lady at the fracture liaison clinic told me that the side-effect I was experiencing was rare, and it seemed that she had little if any experience on advising what to do.  Actually constipation is listed in the patient information leaflet as a common side effect, affecting up to one in 10 people.

So I rang the National Osteoporosis Society (NOS) who were incredibly helpful and sympathetic and appeared to have much more experience in advising patients who were having difficulties tolerating the medication.  The NOS advised that I stop taking the Calcium and Vitamin D and instead take Vitamin D on its own and increase the Calcium in my diet.  They also suggested I reduce the dose of the bisphosphonate.

I'm a vegetarian and lactose intolerant, so in the past I suspect the Calcium levels in my diet had not been that high.  The NOS were able to advise regarding foods high in Calcium such as tahini and tofu.  I've also started having lactose free yoghurt with my breakfast.

Signifcant side effects: Pain in muscles & joints, & weakness

So, I increased the Calcium in my diet and ordered some Vitamin D (it's as cheap as chips).  I waited three or four weeks until my stomach had settled down again, and then started back on the bisphosphonate.  I stuck it out for a month, but had to stop due to side effects.

These side effects have been significant.  Listed in the patient information leaflet for Alendronic Acid as a very common side effect, which may affect more than

Pain map

one in 10 people, includes pain in the bones muscles or joints which is sometimes severe.   Furthermore a common side effect is weakness and loss of strength.   These side effects may not be immediately apparent.

Both friends and family have told me that they have never seen me as poorly as I am now.  My energy levels have reduced, and muscle and joint pain has increased, especially in my arms and my legs.  The duration and level of pain and fatigue in my arms has proved to be especially disabling.  I now use voice recognition software to interact with my laptop.  Even scrolling through my Twitter stream on my phone for a minute triggers increased pain and fatigue in my arms.

When I was diagnosed with ME in 2004 I was assessed as functioning at about 20% of normal.  Since then I have deteriorated and any small percentage reduction in functioning has a significant effect on my day-to-day life. 

Managing my symptom exacerbation

In an attempt to better manage this exacerbation in my symptoms I have done the following:

• rested even more extensively than previously
• stopped taking the bisphosphonate's (I'd already stopped taking the Vitamin D and Calcium tablets) 
• purchased voice recognition software so that I could greatly reduce the strain on my arms when using my laptop.   I've written a blog post on voice recognition software
• taking painkillers more often and using Jointace gel (for those of you that are odour sensitive, please note that this has a strong smell of ginger)
• increased my intake of supplements which now include CoQ10, mineral supplement, electrolytes, Vitamin B3, Acetyl-L-Cartinine (I was already taking D ribose, Meno San, B12, B6 and folic acid and Zinc and Vitamins C lozenges)

What have I learned from all this?

• I probably should have been more conscientious about taking Vitamin D regularly, after I was first advised to do so in 2008
• I should have paid more attention to bone health and researched what I could do for myself.  This article by Dr Myhill is worth a read
• I was reminded that healthcare is not holistic and the effect of medication on  ME symptoms is simply not on the radar of health professionals
• I should have been much more careful when taking new medication.  With hindsight I would have introduced only one new medication at the time, and started off at a much lower dose
• There isn't really a great deal of information available regarding the interaction of ME and osteoporosis.  You may wish to read this article on Health Rising and this thread on Phoenix Rising

Further thoughts

I'm not sure if the bisphosphonate has exacerbated my ME symptoms or if I am experiencing side effects from the medication.  Or it could be a combination of both.  

Dangerous cliff edge

It is ironic that medication prescribed to improve bone health may have ended up having the opposite effect by exacerbating my ME symptoms and so reducing the amount of activity I can undertake.

This experience has reminded me what a cliff edge people with ME and CFS exist on and how easy it is to tip over into relapse.  Deterioration can happen very quickly indeed.  The delayed effect of an exacerbator on symptoms can lead to a situation which Sally Burch described as "dangerously okay".  For me it seemed that after taking the bisphosphonates for about three weeks I was tipped from "dangerously okay" into significant symptom exacerbation.

And finally....

I am waiting for a telephone appointment with a physiotherapist from my local ME and CFS service for advice regarding activity I can undertake to increase my bone density.  I will post about this after the appointment.

At some point I need to go back to my GP to discuss further options.  There are other bisphosphonates which can be delivered intravenously or subcutaneously.  I will need to look into the potential side-effects of these alternative bisphosphonates.


In Treasure Your Bones!  ME and Osteoporosis Part One, I discussed risk factors and my experience of a DEXA scan

Acknowledgements

The pain map image is attributed to vaXsine
The cliff edge image is linked from wikimedia commons