Category Archives: bladder

Urine infections in MS – an integrated approach to prevention & treatment.

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I always discuss the need to stay one step ahead of the bladder in MS with my patients, as having a urinary tract infection (UTI) can mimic a relapse and cause real setbacks.

Explain this to your GP, request they prescribe antibiotics at the first sign of infection, and that NICE guidelines recommend a longer (5–10-day) course for these ‘neurogenic’ UTIs.  It’s also worth taking at least a prescription away with you on holiday to prevent losing days trying to see a doctor.

Check! Whenever you experience new or worse symptoms of MS, always check for a silent UTI. Aswell as  visiting your surgery or MS nurse, you can also buy urinalysis dipsticks for home use. A change of colour to Leukocytes or Nitrites may indicate infection, which should be treated.

dipsticks

If you take antibiotics, top up with probiotics (good bacteria), during and afterwards, to prevent digestive problems and thrush, and boost your health and resistance to future UTIs. Lactose-free capsules or powder are better than sweet probiotic drinks. In fact looking after the good bacteria in your gut is a huge and important topic for all of us, and particularly if you have an auto-immune condition, and there’s lots of ways you can do this.

bacteria (1)

Also drink plenty of water, pee frequently, and cut out sugar to help your immune system fight back.

Causes.

One cause of UTIs with MS is the bladder not emptying fully, because the muscles involved are not working together properly. Struggling to start passing urine, feeling there’s some left, urgency, and UTIs can all be signs of incomplete emptying. This needs to be identified by ultrasound scan, generally with the continence service.

bladder ultrasound

Try peeing twice every time, but if a residual (left over) volume of 100mls or more is found, you may need to learn how to use intermittent self-catheterisation with small, lubricated, disposable catheters, to empty fully.

ISC can be liberating, but also potentially cause infection; technique and catheter type are important, so stay in touch with your advisor.

ISC

Prevention and natural treatments

If you seem to keep getting urine infections one after the other, it’s quite likely that you are just not completely throwing off one infection.

It’s a very dispiriting situation, However –  there are lots of things you can do to shake off and help prevent recurrent UTIs.

The most common bacteria causing UTIs is E coli, which can cause recurrent UTIs, as it can burrow into the bladder wall, and release spores after antibiotics are finished. However, it’s important that your urine goes to the lab, as rarer bugs are also possible, including from candida, which we’re not covering here today. GPs are recommended not to prescribe low dose daily antibiotics, but they sometimes help as a last resort.

e-coli bacteria

Sometimes antibiotic treatment no longer seems to work, or some people prefer to try herbal remedies with antibiotic properties. Stopping the bacteria from sticking to the bladder wall and flushing it out when it does is the aim of these natural agents. There are many, with varying degrees of research to back them, but the ones that I have seen most success with are: (Nb I don’t get any benefit from these companies!)

For prevention:

  • Concentrated cranberry tablets,  eg Cysticlean

http://www.cysticlean.co.uk/main/index.phpcysticlean 2

For prevention ( low dose) and/or treatment ( full dose)

  • D-Mannose; a simple sugar that e-coli latches on to and can be flushed out on, and is now being tried by consultants at the national hospital for neurology and neurosurgery.  https://www.waterfall-d-mannose.com/dmannose-options.html

d-mannose

  • SOS advance; a colloidal solution of antibiotic herbs that can be used preventatively or at times of infection.

http://www.sosessentials.com/s/

sos-advance

For recurrent UTIs with an indwelling catheter

If after a catheter changes, with symptoms, ask District Nurses to test from the port after 48 hours, and have an antibiotic at the ready; test again 48 hours after completion.

The ‘Bardex IC’ ( infection control) silver tipped catheter has been shown to reduce UTIs, (reports infections 3.7 x more common in those catheterised with a normal catheter vs a sliver tipped one) as it prevents a biofilm forming. It becomes effective after around 3 months ( and has to be changed regularly like all indwelling catheters), so don’t give up too soon.

Uro.13.BardexIC2way.0165SI (1)

If all else fails, ask for a referral to urology, to check for bladder stones, and possibly for bladder washout, and to discuss possible treatments.

See a doctor if you have a fever, chills, pain in the flank area, nausea or vomiting, and always check any natural/herbal remedies are safe to take with your condition and medications.

UPDATE: – I thought this comment from Jenny was important enough to update the blog with:

“I thought I’d let you know about some other treatments for UTIs that are being tried on me that no-one seems to know about (not even doctors in Oxford, nor the MS specialist nurses – I’m keeping them posted too)..

So one is Uromune, supposedly a vaccination against four strains of UTI including e-coli. It’s inactivated bacteria taken in pineapple juice under the tongue once a day for 3 or 6 months. They’re doing a trial in Reading and there are details here http://www.readingurologypartnership.com/uti-vaccine/4594063839 – you can’t get on the trial if you self-catheterise but can pay privately for it (not cheap – including seeing the consultant it was about £600 for me).

And the other is iAluRil, a GAG layer replacement, which you stick inside directly with a catheter, to replenish the non-stick lining of the bladder, and keep in for as long as poss (I do it at night and sleep with it in – it’s only 50mls). There are apparently two places in the UK which don’t do this and Oxford is one, so I go to the Royal Berks for that, on the NHS. Info here http://ialuril.co.uk/

Apologies if you knew all this and that just took up time that you’ll never get back! But I thought, if you don’t know about it, you’re the sort of person who will be interested and use the info to help people. (btw I have no financial links to any of the organisations – am just a person with MS and RUTIs who’s trying everything!). And also I should let you know that I’ve been on the Uromune for nearly 3 months now and just had an e-coli infection… hey ho.”

–Dear Jenny – this is fab; I’m going to post it up as an update so everyone can see, thankyou. I do have a patient who was on the immunisation trial but unfortunately it did not work for her. The aAlUril I have never heard of and am going to look into. Thanks again for your most useful comments!
all the best, Miranda

 

 

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

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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

Noll Campbell,4 Malaz Boustani,1,2,3 Tony Limbil,1 Carol Ott,4,5 Chris Fox,6,7,8 Ian Maidment,6,7 Cathy C Schubert,3Stephanie Munger,1,2 Donna Fick,9,10 David Miller,3 and Rajesh Gulati11
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

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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 🙂