Are your tablets destroying your brain? What to do about anticholinergics

OH NOOO!NOOO! I hate it when a drug that was a useful tool turns out to have really bad side effects!

In an ideal world, we’d all be drug free, of course, but hey – noone is taking this stuff for fun!

You may have seen in the news recently the reports linking drugs with an anticholinergic effect with dementia and cognitive problems. This type of drug includes over the counter anti-histamines for allergies/hayfever.  Many people with MS take anti-cholinergic drugs for bladder overactivity/urgency, which include:

Detrusitol / Tolterodine, Solifenacin / Vesicare, Oxybutnin / Lyrinol XL/Kentera patches, Fesoterodine fumarate / Tovias, or Darifenacin / Emselex

and many take a low dose of tricyclic antidepressants for nerve pain, which include

Amitryptilline, and its less sedating sister, Nortryptilline.

Awareness has been building about the link between anticholinergics and cognitive problems; in fact a review on the subject in 2009 found twenty-seven studies that met their inclusion criteria, of which, all but two  found an association between the anticholinergics  and either delirium, cognitive impairment or dementia. (1)

This month, however, the a new study on 3434 people provides the ‘strongest evidence yet’ that anticholinergic drugs may increase the risk for dementia in older adults.( 2)

All studies done on the effects of anticholinergics have been done in older adults  “There is no data on how these drugs may affect younger people, but I personally will avoid taking anticholinergic agents,” – Shelley Gray, author of the study.

What if you’re only on a low dose?

Unfortunately if that’s a continuous dose, it still counts. Eg 3 years of taking low dose medication with anitcholinergic effect for neuropathic ( nerve) pain counts as high use.

What to do if you’re on one of these meds?

Obviously, full blown dementia in old age is unlikely to be reversible. However, previous studies on people coming off anticholinergics found that the detrimental effects on thinking were reversible(3), so don’t panic!

What are the alternatives?

For the bladder, two of the alternatives I actually mentioned in a recent post: tibial nerve stimulation, and mirabegron,  a selective beta3 adrenoceptor agonist, which works in a different way to anticholinergics.  NICE has recommended mirabegron as an option for treating overactive bladder (OAB) “only for people in whom antimuscarinic drugs are contraindicated or clinically ineffective, or have unacceptable side effects”, which means that you may have to fight for it, or get the help of your continence service to request it, due to the difficulties these days in accessing medicines that are not the cheapest available.

As you will know, if you have urinary urgency with MS, you should never take medications for it before being seen and scanned by a continence nurse, as the problem can sometimes be cause by the bladder not emptying properly, and in this case, the drugs don’t work, they only make it worse!

If however, you’ve been assessed, and found to have a severely overactive bladder, one option, under urology, is to have botox injected into the bladder wall, which completely relaxes the bladder, and lasts for several months. You have to be willing and able to take on intermittent self catheterisation if necessary, and when it works, it can be a real life changer.

Non drug options?

One of the commonest (? rude?)- most common things that people report are being benefitted by hyperbaric oxygen at the Therapy Centre is bladder urgency.I don’t deal in ‘miracles’ but there’s a link in today’s telegraph online about it: http://www.telegraph.co.uk/lifestyle/11376969/The-miraculous-healing-powers-of-oxygen.html

Other little pieces of magic can be reflexology or acupuncture. Small studies have  shown positive effects for treating this problem, and I have had patients reporting good results after seeing our reflexologists, Theresa and Lorna but non are large or robust enough to become very official ( the studies, not Theresa and Lorna! )

Here’s one of the main acupressure points for self help: acupressure for bladder

400-600mg of magnesium can sometimes have a calming enough effect to reduce bladder symptoms, and reducing caffeine and bladder retraining can also have a good effect. (4) Your best source of expertise on the bladder is your continence service nurse, and its a good idea to go back every couple of years to stay one step ahead of any bladder problems in MS.

What about nerve pain?

Luckily, there are other effective medications for distressing neuropathic pain in MS, the most commonly prescribed being Gabapentin, and its updated ( and more expensive) version, Pregabalin. Although there are, as with all drugs, possible side effects, the most common for Gabapentin being weight gain, they are not linked with the dangers to cognition that the anticholinergics are.

At the MS Therapy Centre, we are lucky to be able to offer APS Therapy, which has had a great result for many people, and the therapies Shiatsu and reflexology also have potential to help. So – if you find that you are regularly taking medication with an anticholinergic effect, have a think about the alternatives, and work with your GP to change your prescription, for a clearer head.

1) Clin Interv Aging. 2009; 4: 225–233. Published online 2009 Jun 9. PMCID: PMC2697587

The cognitive impact of anticholinergics: A clinical review

2)

Cumulative Use of Strong Anticholinergics and Incident DementiaA Prospective Cohort Study

Shelly L. Gray, PharmD, MS1; Melissa L. Anderson, MS2; Sascha Dublin, MD, PhD2,3; Joseph T. Hanlon, PharmD, MS4; Rebecca Hubbard, PhD2,5,6; Rod Walker, MS2; Onchee Yu, MS2; Paul K. Crane, MD, MPH7; Eric B. Larson, MD, MPH2,7
JAMA Intern Med. Published online January 26, 2015. doi:10.1001/jamainternmed.2014.7663
3)

4)     Hartmann KE, McPheeters ML, Biller DH, Ward RM et al. Treatment of Overactive Bladder in Women. Evidence Report/Technology Assessment No. 187. Rockville: Agency for Healthcare Research and Quality (AHRQ). August 2009. [Full text] [PubMed]

PML on Tecfidera and more

PML

PML

Important news if you are on, or considering the new oral drug Tecfidera ( also known as BG12).  On 22nd October Biogen Idec reported the first case of progressive multifocal leukoencephalopathy (PML) in a Tecfidera patient, who had been part of a clinical trial and was taking the drug for 4-1/2 years. PML is the rare but potentially fatal brain infection that is a serious possible side-effect of Tysabri, but until now had not been reported in people who had only taken an oral medication. 11 people taking Fingolimod have had PML; 10 of these had previously been on tysabri, and one is considered to have had PML before commencing fingolimod.

If you are on Tecfidera, the advice is not to panic. This patient, who died of pneumonia, had been suffering severe lymphopenia, a low white blood cell condition, for more than three years, which Biogen said was a risk factor for developing PML. A more in depth discussion about this is on neurologist Gavin Gionvannoni’s blog, here:

http://multiple-sclerosis-research.blogspot.com/2014/10/clinicspeak-pml-and-dimethyl-fumarate_24.html.

Now here’s the More …

Personal Health budgets   present

Not to be confused with personal budgets (!) which means you get to control the money for any social care, a Personal Health Budget is a one-off payment that can be used to pay for something that helps you in your life with a long term health condition. It could be something like an air conditioning unit, or piece of medical equipment, or it could pay for regular therapy or exercise classes, transport, or help to remain independent or at home. If you receive Continuing Health Care -( extra money to support your health if you have complex needs which are rapidly changing and you need nursing type interventions fairly often), then you now have the right to have a Personal Health Budget. There’s a lot of talk about how other people with long term conditions now have a right to ask for one – but sadly neither Bedfordshire or Northamptonshire are offering these to people with MS at this stage.

On a lighter note,

Reasons to be cheerful – part 1 tibial nerve stimulation

New and more effective treatments are becoming available for overactive bladder. If you’ve been through all the firstline treatments and are still suffering from urinary urgency, ask about Mirabegron, which is having great effects for some people.

Also becoming more easily available on the NHS is Tibial Nerve Stimulation, a treatment that developed from acupuncture, where a course of treatment using a tiny needle, inserted just behind the ankle, can calm down both an overactive bladder, and sometimes also be very effective for bowel urgency.

Reasons to be cheerful – part 2stereotactic radiosurgery

Another area that affects some people with MS, where advances are being made, is in treatments for Trigeminal neuralgia. If you have been plagued for a long time by this very painful problem, have a look at Sterotactic radiosurgery on the NHS choices website, or ask to talk to someone about this. http://www.nhs.uk/Conditions/Trigeminal-neuralgia/Pages/Treatment.aspx

Reasons to be cheerful – part 3 … wish I could sing it like Ian Dury…

Following the success of APS Therapy for many people’s painful conditions, and  noticing that many people have reported other unexpected benefits, we are now opening APS therapy at the Bedford MS Therapy Centre up for other problems that members may wish to use it for.                                                                                                                          The most noticeable and frequent ‘other’ benefit is improved length and quality of sleep, so for sleep problems.                                                                                                           Some people, though not all, report improvements in energy, so; fatigue.                  Significantly, 3 people have reported that they were having recurrent urinary tract infections prior to starting APS, which resolve when using it, so; recurrent urinary tract infections.

Anyone wishing to discuss this, please make an appointment to see Miranda or Emma.

and Part 4 –

Training going on apace all over the place! I’m doing the first presentation and training course for practitioners from the MS Centre on Saturday 1st Nov

Ovecoming MS evidence based approach to stabilising MS as per http://www.overcomingms.org in Birmingham on 6th November

Updating modern matrons on MS on 14th December, and, nudged by recent bad experiences one of our members recently had in hospital, Emma and I will be offering MS updates for hospital staff, and instigating working with hospital staff to improve the ‘pathway’ – ie -what happens to a person with MS when they interact with the NHS in Bedfordshire.

Also, if you don’t follow my online blog, you will have missed me banging on again about the importance of gut health etc. It’s all coming together, so watch this space for the ultimate plan!

Busy times! Keep well 🙂