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 

Roar like a dragon: Voice Recognition and ME

In this post I will discuss the benefits and drawbacks of using voice recognition software when you have ME or CFS. 

 

Pootling along

For years now I've spent most of my days in bed, either laying down and resting listening to an audio-book or the like, or propped up with pillows and cushions for support for my arms. I have my laptop on a little table that goes across my bed. I use the vertical mouse as it is easier on my wrist and arm. I found that as long as I didn't spend too long writing a document or surfing the Internet I could tolerate this level of activity without excessive symptom exacerbation.

All good things…….

However, more recently I have been experiencing significant pain, aching and fatigue in both my arms. Despite extended rest, this has not resolved. Already isolated physically, as I am rarely well enough to leave the house, I was also becoming more isolated in my virtual connection with the outside world. So what to do?

Enter stage left voice recognition software

Over the years I have toyed a few times with purchasing voice recognition software but had been put off by the cost and some less than favourable reviews. However on reading the more recent reviews it appears that although voice recognition is not at the level of the computer on the Starship Enterprise the technology has improved substantially.

I got clicking, gave my credit card fair warning and ordered Dragon Naturally Speaking. 

Using Dragon Naturally Speaking voice recognition software

You can achieve a fair bit with just minimal voice training of the software. There is an interactive tutorial which took me about half an hour, and it's enough to get you going with the basics. For best results you need to be aware that the software has to learn how you speak. As well as the Interactive Tutorial there are also lengthy passages of text which you can read out loud to help the program learn how you speak. I read for about seven minutes before the software told me it had collected enough information. One thing this taught me is that I do not have a career reading audiobooks ahead of me!

Learning a new language

Having used this software for a couple of days I have found it a bit like learning a new language, albeit a simple one. It is worth learning the command phrases, although they are not always intuitive. For example, the command "scroll down" takes you to the bottom of the page. To scroll down the page the command is "start scrolling". You can also voice control the speed of scrolling. "Page down" is a useful alternative to scrolling.

Training your Dragon

There may be some words you pronounce in a certain way that the software has

trouble understanding. One of the words that Dragon struggled with was "scrolling" which it insisted on interpreting as "scrawling". Now it may be that I just can't get my teeth round the word "scrolling" in the normal way or it is my Suffolk accent. However often I said it I just couldn't get it right. 

Handily though you can "train your Dragon" so that it transcribes a specific word as you wish. So if there is a command that you can't get Dragon to comply with try speaking it into a document to see whether or not Dragon understands your pronunciation correctly. When speaking a command word or phrase into a document you need to hold down the shift key otherwise Dragon will just carry out the command.

Benefits and shortcomings

Dragon works best when you speak in phrases or sentences. That way if there is a word that is unclear the software can use context to decide which is the best match. It really is very clever. And once you are on a roll you can dictate considerably more quickly than typing.

I can, using Dragon, navigate around my email program, Thunderbird, compose, send and delete emails, and move between folders. Dragon is also useful for scrolling up and down webpages in Firefox. It can be used to click on some buttons but this is variable depending on the page. However it works well for entering text in forums.

I found it relatively easy to write and amend a WORD document, it's a matter of getting a handle on the appropriate commands. And of course I used it to write this blog post.

Drawbacks

On the minus side, Dragon does take quite a bit of getting used to and you do need to invest some time in teaching it how you speak and learning the relevant commands. I do slur my words when I am tired and this reduces the accuracy of voice recognition. Also you do need to be cognitively alert enough to remember the commands and to be able to order your thoughts so you can speak in phrases or sentences.

Dragon does come with a short list of commands on a card, but it could do with being much more extensive. I found the headphones that are supplied with the software a bit uncomfortable, so I just rest them on my chest or on the pillow next to me.

Available online is a lengthy 295 page PDF which describes in detail what you can do with Dragon. A link is here.

Overall though, for me this has been a worthwhile purchase.

And finally.....

If like me you are in the habit of muttering the odd rude word in frustration when your computer doesn't do what you want it to, then it is probably worth proof reading documents very carefully if they are for wider circulation.

Billy who likes to purr into the microphone

Treasure Your Bones! M.E. and Osteoporosis Part 1 - Risk Factors & DXA Scan

In this post I will discuss the risk factors for osteoporosis, scanning for osteoporosis and my experience of a DEXA scan.
 

Treasure Your Bones!

If you have been diagnosed with M.E. (Myalgic Encephalomyelitis) or CFS (chronic fatigue syndrome) an awareness of the risk factors for osteoporosis is important.   

Bone Density

After the age of about 35 bone density gradually decreases as part of the natural ageing process. This coincides with the second age peak for developing ME or CFS which is thought to be between 30 to 39 years. (The first age peak is between 10 – 19 years).

Weight bearing exercise is an important factor in increasing and maintaining bone density but is a major challenge for people with ME or CFS. Osteoporosis is diagnosed when your bone density is found to be significantly reduced and as a result you are at higher risk of breaking bones, also known as a fracture.

The most common fractures as a result of osteoporosis are in the hip, spine and wrist. These can cause substantial pain and severe disability, often leading to a reduced quality of life.

Image of bone scans from NHS Choices

Unhappy Statistics

 

According to NICE hip and vertebral fractures are associated with decreased life expectancy. Hip fracture nearly always requires hospitalisation, is fatal in 20% of cases and permanently disables 50% of those affected. Only 30% of patients who suffer a hip fracture fully recover. These are not happy statistics.

D'oh

Although aware that my inability to undertake weight bearing exercise is a risk factor for osteoporosis I had not given it any serious thought until my GP raised the issue at my annual meds review. Managing my activity levels, and just getting through each day had crowded out concerns for more long term issues.

Meds Review

Last summer I had a meds review with my GP.  Usually this is a 'tick box' exercise.  My M.E. Consultant retired in 2007 and since then the meds my consultant prescribed have simply been re-issued by my GP.  This time I was warned not to take Domperidone (for nausea) on a long term basis due to new advice regarding cardiac side effects - handy to know!

My current GP, although appearing to show no interest whatsoever in M.E. (the term M.E. or CFS has yet to pass her lips) did recognise that I have risk factors for osteoporosis.

Risk Factors for Osteoporosis

In my case they included:

• Low weight - my BMI is below 19 - my bones are likely to be smaller so osteoporosis is more likely

• Female - women are at greater risk of osteoporosis than men

• Aged over 50 - 1 in 2 women and 1 in 5 men over 50 will break a bone, mainly as a result of poor bone health. Menopause accelerates the process of bone turnover, and the production of oestrogen, which has a protective effect on bones, is greatly reduced and ceases.

• Caucasian - Caucasians and Asians tend to be at greater risk of fragile bones than people from other ethnic backgrounds

• Inactive lifestyle - no weight bearing exercise to maintain / increase bone density

• Lactose intolerant - I avoid milk and dairy products - other calcium rich foods include broccoli (which however hard I try I simply don't like it) and dried apricots (yum but pricey).

• Lack of exposure to sunlight - I burn easily, plus due to M.E. I'm often not well enough to sit outside - Vitamin D levels in my blood came up as low end of normal.

• Use of Proton Pump Inhibitors - I've been taking Losec for years for reflux and inflammation

Other Risk Factors 

There are other risk factors which I have listed at the

bottom of this post.  They have been taken from the National Osteoporosis Society website.  The NOS also produces a useful range of leaflets, a bone health quiz and an provides an excellent helpline on 0808 800 0035.

The World Health Organisation has developed a 10 year Fracture Risk Assessment Tool - FRAX to help determine the risk of fracture between the ages of 40 and 90.  You need to know your bone mineral density BMD to use this tool.

DXA Scans

A DXA scan is the 'gold standard' scan recommended to assess your bone density.  The lower your bone density, the higher your risk of breaking a bone.  Other scans include peripheral DXA (pDXA), QCT (quantitative computed tomography) and ultrasound. Blood and urine tests cannot be used to diagnose osteoporosis or your risk of fracture, but they can be used to monitor the rate of bone loss / response to medication.

My experience of a DXA Scan

To her credit my GP sent me for a DXA Scan (dual energy X-ray absorptiometry) and pronounced like 'Dexter' but without the 't'. This is preventative medicine at its best. 

Image of DXA Scan from NHS Choices

From the M.E. point of view the scan itself is relatively easy, (compared to say a mammogram) although travel and waiting in the waiting room will use up precious energy. You lay on a padded table and the scan thing chugs along over your hip and spine. You do need to keep still whilst being scanned.  I was able to take a break between the hip and spine elements of the scan.   

The scan doesn't enclose you unlike MRI or CT scans and takes about 15 minutes. Although I'm quite noise sensitive, the frequency of the sound was low and wasn't painful.  The light in the room was bright so I covered my eyes with a scarf. The radiographer was kind and gave me wet paper towels to cool me down when I overheated.

Image of DXA Scan from NHS Choices.

I had the cushion under my knees which was a lot more comfortable than the lady in the picture looks.  I didn't need to undress and put on a gown.  I also had a short conversation with the radiographer who checked my personal details were correct, that my lifestyle factors and list of medications were up to date.

Risks and Benefits of a DXA Scan

 

Risks & Limitations of a DXA Scan

• Symptom Exacerbation - Travelling to access the scan and undergoing the scan may well exacerbate your ME or CFS symptoms.  I'm severely affected and I needed extended rest for a few days afterwards and my symptoms were aggravated, especially the pain in my legs.  This was probably due to sitting in the car to travel and sitting in my wheelchair in the waiting room
• Lack of knowledge about ME - The radiographer may not be sympathetic to people with M.E. or CFS which can be upsetting if insensitive comments like 'we all get tired sometimes' are made.  Or the radiographer may not help you as much as you would like with getting on and off the table or removing and replacing any clothing if needed.
• Low exposure to radiation - A DXA scan involves the use of radiation. However, the amount of radiation is very low, less than two days’ exposure to natural background radiation. A chest x-ray is the equivalent of about 5 days exposure to natural background radiation.
• Partial view of bone health - A DXA scan will show your bone density, but not your bone quality. A DXA scan is only part of the picture and your other risk factors will also need to be taken into account in assessing the level of your fracture risk
• Not predictive - A DXA test cannot predict if you will experience a fracture but can provide indications of relative risk
• Information is of limited use - you may not be able to make the changes recommended to improve bone health due to 
• Difficulty tolerating medication
• Difficulty undertaking weight bearing exercise
• Difficulty tolerating dietary changes

Benefits of a DXA Scan

• Accurate and reliable measure of bone density
• Simple to undergo and painless
• Local - Scanner likely to be available locally so you don’t have to travel too far
• Informed choice - When you get the DXA scan results you can then make an informed choice taking into account your other risk factors, needs and preferences. You can consider your options regarding medications, supplements and lifestyle changes

In my case the benefits far outweighed the risks so I went ahead with the scan.

DXA Scan Results

A few weeks later I was sent the scan results  which included:

• a diagnosis of osteoporosis
• recommendations for treatment and management 

It was very useful having an opportunity to review the scan results and recommendations before went back to my GP.

In Treasure Your Bones! M.E. and Osteoporosis Part 2, I will upload my scan results, describe the problems I have had with medication, and explore the treatment and management options in more detail.

*********************************

The National Osteoporosis Society: Other risk factors for Osteoporosis include:

• Smoking
• Drinking alcohol (alcohol intolerance is common in ME)
• Previous fractures as a result of a minor bump or fall 
• Losing inches in height - this can be due to compression fractures in the spine
• Family history of osteoporosis, hip or vertebral fracture, or a family member with a 'dowagers hump' or curve in the spine

Medical conditions which increase the risk of osteoporosis:

• Rheumatoid arthritis
• An eating disorder causing severe weight loss
• A condition which affects absorption of food such as Crohn's or coeliac disease
• Long periods of immobility (from conditions causing disability such as a stroke or multiple sclerosis)
• Early menopause (before 45) without hormone replacement therapy (HRT)
• Hysterectomy with removal of ovaries (before 45) without hormone replacement therapy (HRT)
• Excessive exercise which may have reduced hormone levels and stopped menstrual periods
• Hyperthyroidism when levels of thyroid hormone are abnormally high
• Parathyroid disease when levels of parathyroid hormone are abnormally high
• Other conditions which may be linked to fragile bones such as diabetes, HIV (AIDS), organ transplant or respiratory disease
• Low levels of the sex hormone testosterone (following surgery for some cancers or treatment for prostate cancer with Zoladex/Prostap, for example)
• Klinefelter's disease
• Kallman's syndrome.

Medications that can increase the risk of osteoporosis: 

• Corticosteroid tablets for over three months
• Anti-epileptic drugs
• Breast cancer treatments (such as aromatase inhibitors)
• Prostate cancer drugs that reduce hormone levels
• Diabetic drugs in the glitazone group (including rosiglitazone and pioglitazone)
• Drugs to reduce inflammation of the stomach and oesophagus called proton pump inhibitors (PPIs)
• Injectable progestogen contraceptives e.g. medroxyprogesterone acetate (known as Depo Provera)
• Drugs used for mental health problems (particularly psychosis). 

Other lifestyle:

• Prone to falling 

*********************

References

Two age peaks in the incidence of CFS/ME: A population registry based study from Norway 2008 - 2012 

http://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-014-0167-5

NICE CG 146 - Osteoporosis: assessing the risk of fragility fracture. August 2012

https://www.nice.org.uk/guidance/cg146/chapter/introduction

Gov.uk: Domperidone - risk of cardiac side effects

https://www.gov.uk/drug-safety-update/domperidone-risks-of-cardiac-side-effects

National Osteoporosis Society - Risk factors for osteoporosis

https://www.nos.org.uk/healthy-bones-and-risks/are-you-at-risk

Womens Health Concern - Bone health following menopause

http://www.womens-health-concern.org/help-and-advice/factsheets/osteoporosis-bone-health-following-menopause/

National Osteoporosis Society - Bone health quiz

http://stopatone.nos.org.uk/online-check/#.VofIifmLRj0

World Health Organisation Fracture Risk Assessment Tool

http://www.shef.ac.uk/FRAX/tool.aspx?country=1

National Osteoporosis Society - Scans & Tests - DXA Scan

https://www.nos.org.uk/scans-tests-and-drugs/scans-tests

NHS Choices - Osteoporosis

http://www.nhs.uk/conditions/osteoporosis/pages/introduction.aspx