MRSA and immunosuppressants...

[CountessDracula]

Any docs on mumsnet who can help me with this?

My stepfather had a massive stroke at Easter and has been in hospital ever since, left a couple of weeks ago to go into a nursing home. He has MRSA in his throat and at the site of a feeding tube.

I take immunosuppressants (azathioprine 150mg a day) for Crohn's and I have been told that I can't go and see him. Is this right? I can't bear the thought of him wondering why I haven't been (I did go before I knew it was a problem - so could I have caught it anyway and if so what ar the symptoms?)

They don't want to tell him he has it as he is a terrible worrier. So i can't go in in a mask or anything

No real advice CD, but for you.

If I were in your position I'd speak to my GP or NHS Direct and ask them the questions you've listed below.

Wishing your stepfather a smooth recovery. Hugs, xxx

could you have a chat with the infection control nurse at your stepfather's hospital? i suspect that this is a bit too specialised for NHS/GP to give a definitive answer.

Well, I asked teh GP but she was a trainee and I think she was just covering her arse by saying no. I just don't know how likely it is that I will become infected and if I do what effect it will have on me

I've been taking azathioprine for 20 years, and never got any of the nasty things they predict. Do get lots of colds, though.

Could you phone your consultant and get a definitive answer? Alternatively, you could wear protective gear and tell him it's because you've got a horrible cold you don't want to pass on.

Hope you get some good answers soon.

frogs I never get anything horrible either - like you am more suceptible to colds but my blood tests never show and low white blood cell counts or strange LFTs (other than from glandular fever recently!)

Good idea about the cold thing but that won't work every time

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Twiglett that's exactly how auto-immune diseases work! But it is generally localised ie your immune system detects what it considers to be an area of your body that needs it response but it is wrong, so in my case it attacks my colon, causing ulceration. However as it is localised it doesn't mean that your general immunity is any stronger than anyone else's, so when you take the drugs to suppress the overactive immune response in the localised area, you end up more susceptible to infection etc.

Does that make sense?

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I am on immunosuppressants and caught mrsa while on dialysis from a dirty piece of equipment it was cleared up with v strong antibiotics.I was told at the time that mrsa usually enters via a wound or catheter .Maybe ring the hospital and ask

OK firstly a proportion of the population (about 6% I think) carry MRSA all the time. They are carriers and it does not affect them at all. The places people are most likely to be infected are in the nose,groin and armpit. It can also be present in the throat but we don't even normally test for that routinely at our hospital (although I know others that do) which (I'm not basing this on fact) would lead me to believe that it is not particularly infective from that point.

What I am trying to say is that he may have had MRSA even before this admission. You may have had or infact do have MRSA yourself. You are unlikely to know that you do. MRSA only usually becomes a problem when it becomes systemic (ie, infected blood) or is at a wound site (stops wounds from healing and is likely to enter the blood stream from an open wound). If you did have MRSA, as with any infection you may begin to feel unwell but only normally if it was systemic or in a wound site, and you would develop a high temperature. I'm assuming that his feeding tube is sited at his stomach? So there will be a small wound there. However, as long as this wound site is securely dressed it is of little infection risk to you.

I'm also assuming because of the feeding tube and being in a nursing home he must of had quite a severe stroke, so will probably be in the home for the forseeable future if not permanently? In my experience it can take many weeks to try and clear MRSA and sometimes once you are colonised, it seems to stay. If you would like to visit him then I would suggest that you do so with caution. Wash your hands before and after visiting him and try and visit in a well ventilated room. Make sure that he is being treated with anti microbials, the nursing home should be aware of these.

What does the nursing home suggest about visiting? Because even if you step dad is declared MRSA negative Nursing homes are notorious for being riddled with MRSA. I'm probably making this all hugely complicated for you, I'm sorry. Hopefully I've answered some of your questions and helped you make a bit more of an informed decision. MRSA has been around for years. The media has picked up on this subject recently and is very much dramatiscing it. It does upset me as it is causing so much worry for my patients relatives. We recently had a patient pass away from causes of which we are fairly certain, and the distraught family were pushing for a (otherwise unnesescary [sp]) post mortem. So it is causing a lot of distress, although is good in the respect that it has moved MRSA prevention up the list of the managements priorities.

Flossam thanks so much for such a sensible and time consuming post. I do appreciate it.

The nursing home didn't seem to have an opinion tbh. It is a very posh one more like a smart hotel and v. clean, he has a lovely room and he eats in there and doesn't mingle due to the MRSA. Not that he can mingle much as he is fairly bonkers and can't walk anyway.

I agree he may have had this before, I can't go around avoiding anyone who I think may have something I can catch. I will make sure I do the handwashing, ventilated room etc.

Thats ok CD! I hope you enjoy visiting him and I hope he recovers. I'm sure he'll be pleased to see you!
(Also sounds like the nursing home is a nice one, thats so important!)

Of course you can go and see him, IF you have an open wound, make certain it is covered, but please don't stay away or be frightened to touch him. It really does take contact to an open wound, so if you cover it you will be OK. Also you can always wear surgical gloves, next to any patients bed with MRSA. PLEASE IT IS IGNORANCE of this illness that makes me angry and feel like a leper...The chances of you catching because of your drugs is negligable
I have a permenant indwelling supra-pubic catheter, a hickman line and MRSA. I take 30mg of Prednisilone a day, (steroid), and have done for over 5 years, so I am permenantly immune-surpressed. It doesn't really affect me and it seems to affect me more when I go into hospital every few months, as I need IV treatment I always get a nice single room to myself, unless they are short of beds, in which case I am treated as if I have leprosy.
No one will touch me or anything without apron and gloves, however I manage at home perfectly well. I do all my own intravenous injections, catheter and colostomy changes. So only I have my bugs to give to myself, however in hospital they will not let me do what I have to do at home. If they did there would be less chance of me giving any patient my MRSA. I always tell people, and put up with their ignorance, because I would rather be treated as a leper in hospital than know I have passed this on to one single person.
The only thing I can say is, Yes OVER 6% of the population carry it naturally in their noses, groin or armpits. You can only get it if you have an OPEN wound and I feel it is now EVERYBODIES responsibility to say to a nurse AND doctors BEFORE they touch you, "have you washed your hands"? If they take offence that is their problem, but if you explain why and ask them to use the 'SPYROGEL' an alcohol based hand rub that HAS to be placed at the bottom or side of EVERY patients bed they should understand.
It should not be your responsibility to ensure your safety but it is, and I wish I had more confidence in the governments proposals.

BUT PLEASE, don't be frightened of it, it really is not something you should be worried about unless you are elderly, immuno-surpressed, have a pre-existing infection, like pneumonia and have an open wound. IF you are all of these then yes, stay away, but I don't see why you should if you take the same precautions the nurses are supossed to.

I am so sorry I seem to have gone on...and on, but I am a bit cross about this subject, NOT MNers, but because people are frightened of me, and treat me as if I am carrying something like a lethal strain of ebola virus. It is a bacteriological infection and can therefore be preventd by simple barrier nursing techniques.
Sorry

I am so sorry in all my 'blusterring' I forgot to say, I do hope that your stepfather makes a good recovery. But please have a relaxed visit with him and don't worry, because having the 'bug' is NOT the worse thing in the world and I would not know I had it if it were not for being swabbed every 3 months.

But Bunglie, the reason I am concerned about it is because I AM immunosurpressed! (you say you don't need to worry about it unless you are, so here I am, worrying) I have had so much conflicting advice from health professionals about this. I also take prednisolone up to 40mg a day on and off so I have to consider that too, though touch wood I am off them at the moment.

I do appreciate that it isn't the worst thing in the world, but I am ill so much anyway with Crohn's and recently Glandular Fever for 6 months, plus arthitis, iritis etc that all go with Crohn's, that I do want to avoid any further illnesses as much as possible.

Also they do not seem to barrier nurse him, no one wears gloves, he is not in isolation etc.

Go to bed woman. PS fancy a pint tomorrow?

Sorry CD, only just realised that I worried you.....So Sorry

IF, and it is a big if, you did contract MRSA, I doubt that it would make any difference, you would not know you had it unless you were swabbed. Yes, I have tubes in and out of me like spaghetti junction, but the only reason I know I have MRSA still is because I am regularly swabbed. It does account for a slight discharge from my supra-pubic catheter site, but nothing else.

I am sorry, I was insensitive, I did not mean to worry you (or anyone) however most people don't know they have MRSA until they get a positive swab back from an OPEN wound site.

If they do not barrier nurse your stepfather, washing their hands is sufficient if done properly, but to be honest I am more worried about catching something like hepatitis or a cold.

To be honest again, I have lived with MRSA infection for 5 years and it really does not affect me, it only affects me , as I said before because of peoples attitude towards me, the MRSA and the scare stories.

I know people, many people who have had MRSA and when their wound has healed the MRSA has gone. It may take longer for a wound site to heel but they do. It will not affect your Chrones disease, and unless you have a colostomy (like me) because of your Chrones, then I really would NOT worry. Even with a colostomy it is only the 'stoma' that can sometimes discharge a bit of pus, but when you think what it does discharge naturally you don't notice it.

PLEASE, don't worry and go and visit your Stepfather, There is no reason why YOU can not follow barrier nursing rules if you are worried.

I am so very sorry that I have got a personal bee in my bonnet about this, but it is due to ignorance that people are frightened. I hate the comparison, but it is like when 'AIDS' first become a 'headline' people would not touch each other or kiss, only by education has this altered. The same needs to happen with MRSA.

I hope your Stepdad makes a good recovery, but he will be happier and make it faster IF you do visit him....I don't often make promises, but I promise you that MRSA is not the end of the world...if you are just immuno-surpressed, so what if you get MRSA? I doubt you would know unless they swabbed you.

I don't mean to appear uncaring, I do care, but I am also the recipient of hysteria over this subject. Flossams response I think is of more use than mine. I am sorry I have made things worse.

Love to you and your Stepdad.
Bunglie

Oh no bunglie you didn't make it worse at all! I actually feel much happier about it now.

Ignorance is the problem as you say, and lack of a consistent medical "line" - different doctors tell me different things all the time.

If you don't mind me asking, why do you take them? Do you have Crohn's too?

No CD I have a really rare disease, only 14 people in the country have it, so to give you a name would be pointless, however it is called Weber-Christian disease.
It is where the body attacks it's own fat cells!
You need fat believe it or not as it protects all of your major organs. That is what 'suet' is, from around the kidneys. You also need it in order to digest food properly and it protects your nerves with something called a myelin sheath. So take away the myelin sheath from around the nerves, the nerves degenerate and that is what multiple sclerossis is. In my case it goes a bit further, I also have a malapsorbtion problem so need high protein drinks, (yuk!) and I have heart and kidney problems because I have lost the protection of the fat layers, so I have a kind of cardiac failure....sounds dramatic but it's not, I just need to make sure I take 'water tablets' too keep the fluid retention down and digoxin to make sure it all stays regular.
It sounds awful,(think of it as natures lipo-suction, ) As you might remember I am in a wheelchair, due to the 'de-myelinisation' of the nerves and I just make certain that each 'new' symptom is treated. so I take the same drugs someone with kidney disease, heart disease and MS would as well as steroids to try and slow down my body attacking the fat cells.
The main problem from my point of view is because it is so rare it is not worth the drug companies finding a drug to treat it and therefore I have to take drugs to treat the symptoms rather than the disease.
My malabsortion syndrome due to the lack of fat around my digestive tract meant that I have lost the micro-villi, as you do in Chrones, so I have similar symptoms but a different cause. I take salozopyrin also and buscopan which I find helps with the digestion and stops it coming 'out' too quickly!!
I live with the view that EVERY person is disabled in some way, some might wear glasses or some not like crowds; what I am trying to say in a long winded way is that everyone has their own disability but it is how you let it affect you that matters.
I am a 'Bunglie' first, and have an illness second.

I really do hope that you don't let the MRSA thing stop you from giving your Stepfather a big hug! You sound to me as if you have done a sensible thing in 'asking' about MRSA, I just wish others would find out the facts rather than be frightened by sensational tabloid headlines.

Much love, Bunglie XX

Oh Bunglie that all sounds like very hard work. But then I know my Crohn's sounds like a mare to most people, but to me it's just a minor inconveniece every so often these days. Though I do have stomach ache, diarrhoea, arthritis etc most of the time i am kind of used to to and I certaily don't let if affect my life. The only time I get really down is when I have to go on steroids again and puff up and my hair starts coming out in clumps again And then go through all the weight losing again afterwards GRRRRRRRRRRRRRRRRRRR. However I figure it is better to be a bit fat etc than really sick so ho hum!

You sound like you are a very brave woman. And I will try and spread the MRSA message a bit. It is true, when someone asks how my SF is, if I say he has MRSA they say OMG etc, but if you quiz them they really don't know what it is or what it does to you etc.

I will give him a big hug!

Good luck to you. BTW I am so allergic to Salazopyrin, Asacol etc that my whole body puffs up like a balloon and all my skin peels off for a month!

CD...next time you puff up due to your steroids I will join you on a support group thread.
I know the feeling...you can't eat this or that 'cos you know you look like a balloon and it will affect you adversly... however you get the steroid 'munchies' and that takes sheer will power and a padlock on the fridge at 3am

I ate half a packet of chocolate hobnobs (love them!)and was on the loo for two days, groaning with cramps and did I get sympathy....Noooo, all I got was "Well you know you shouldn't" but I had the 'munchies' and it was the only thing I could reach!!

Could luck with your Step dad and I am sure he will appreciate the hug, best medicine I know 'Love' to be given as required!

Oh yes please! They are the worst munchies in the world aren;t they? Normally I am a picker, can't eat a lot in one go, on steriods I can happily wolf down a 5 course meal and go back and pick half an hour later but also cos get to eat lots of nice food!

I don't know if this might be applicable to you but as I have thinning bones due to long term steriod use, they have said they will give me an Infliximab infusion next time I have a flare, this apparantly is v expensive for the NHS but stops you having to go on steriods in most cases.

Info here Hope it is of some use to you.

CD, It is V. expensive, however have had it TWICE. It is much better than taking one of those once a week tablets to stop osteoporosis, but my health authority said they would pay for me only because I took steroids and inject heparin daily which makes me very high risk.
I think if you can get the infliximab you will notice a difference. Not sure if it is true but told it costs 120 pounds an injection!
Tell you what CD, If you contact Janh and tell her Bunglie said all OK, she will give you an email address to contact me at...If you like, I would like to keep in contact? I will email Janh and tell her that if you do send her a CAT to pass on my email address...Is that OK