On Azathioprine for SLE got MRSA: I have over the... - LUPUS UK

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On Azathioprine for SLE got MRSA

11 Replies

I have over the last year had more than 9 chest infections which all was treated with Augmentin. All of them required additional steroids due to my Asthma. But this one did not clear up, I became worse and worse since it led to severe Asthma attacks. Saw my GP 4 times in total, my body was aching I literally could not breathe or move. Sputum was checked for new bacteria, but no new bacteria was found. 2 weeks ago I had enough. I consulted a private GP who suggested that the sputum and a nasal swab should be tested for MRSA. I thought he was mad. But he explained that the Aza made me immunosupressed so it was worth a check. 5 days later I get the phone call; MRSA was found both in my sputum and in my swab!! He immediately put me on Doxycycline 100 mg twice a day, and Bactoban nasal spray. And guess what?! Already 24 hours later the infection started to clear up. I was able to sleep for the first time without coughing my lungs out. 2 days later it's like no infection has existed. I have no Asthma attacks, and I can breathe!! So please remember that don't be afraid to ask for additional tests if you are not improving. You should not have to go and see a private GP like I did. Most people who have MRSA in their nose do not have any symptoms. But if you are immunosupressed for some reason you can become very, very sick. xx

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11 Replies
Acorn1 profile image
Acorn1

Thanks for this advice. I'm on Azathiaprine 175mg daily, and have had a bad chest for a while now. It started with a severe cold but now I have bubbling at the bottom of my lungs just above my diaphragm. I don't have a temperature or other signs of infection and am really concerned as it's something I've never had before. I've always suffered with bad coughs after a cold but this is different. I'll leave it another week then go and get my sputum checked.

Happy to hear you're feeling better.

Alison x

in reply to Acorn1

Thank you so much for your reply :) Just remember to ask for an MRSA screening, not just a normal swab and mucus test. It is not standard procedure to have an MRSA screening on the NHS. I hope the screening result will come back as negative. But at least you will have it done and you can relax. Instead you can ask them to perform additional test to find out the cause to you breathing problems. Pls pls let me know how it goes xx

Binkey profile image
Binkey

I was told I had Lupus about three years ago now and have only been taking hydroxychloroquine for about six weeks.Not feeling any benefits yet.I have another flu infection and have had varioius other infections.By the time I get to see my reumatologist the infections have usually cleared up.I don't for various reasons even try to see my GP.I am afraid,as we know,we are more prone to infections but,we can't close ourselves away.Never have been a great beleiver in pill's because there are so many side effects but,what choices do we have.

Caroine profile image
Caroine in reply to Binkey

Hey Binkey, you are not alone on your feelings on taking drugs but with our state of health what can we do.When I was first diagnosed 7yrs ago,my first thought was how I would live through my life on drugs;helpful but come with various problems.With hydroxychloroquine sulphate,I did not feel much impact, it was not controlling my SLE but rather gong on the opposite (not scaring you) so I was placed on Azathioprine in addition in 2009 .Reacted badly to azathioprine constant nose ulcers and unexplained bruises on my legs which developed into massive ulcers.Young woman in mid 30's 4-5 times in a week went in to my GP surgery to treat very painful ulcer.Every thing applied never did work for 6months until I decided no more dressing,was also on courses of antibiotics,the pain was so bad I thought i would never have my legs back but today I'm okey.Its a pain sometimes to relate how you feel to a health professional.One thing they would be looking for from what you are relating to them ,if you are reporting the medical markers.It is not always about the medical aspects but a whole package.To me it is important that their training incorporate how to promote health.Sometimes,its also down to the position they've found themselves.I would advice even though your symptoms have cleared up by the time you see your rheumatologist still report how you felt since your last visit.Anything could be happening.Most times when lupus go into remission we are giving longer appointments but within this times a lot goes on so it is important we let them know.

I hope you do feel up to it to see your GP because it is of benefit that you are reasonably well so that.............All the best

lucy-may profile image
lucy-may

Hi Binkey, I was diagnosed with Lupus 18months ago and last Dec 2010 was started on Hydroxychloroquine and can honestly say they have only seem to have kicked in this last month. So hopefully you may soon benefit, I too hate pills but what choices do we have, Keep going and l hope they work for you soon. x x

Caroine profile image
Caroine in reply to lucy-may

hey mind you we are told it takes 6 months before you start feeling the impact of Hydroxychloroquine sulphate/.I hope this cheers you Binkey

Gillyg profile image
Gillyg

I having been having nose infections for a year almos every month. The doctor takes a swob (sometimes) and gives me antibiotics but in the long term they don't seem to clear it up. 2 months ago my consultant took me off Azathiprine because he thought my immune system was too low. I was also getting frequent urine infections. I have not had any more urine infections but still getting the problem with my nose. Do you think I should get it checked for MRSA. Is that why it is not clearing up. My doctors are not very good. I am in terrible pain in my neck and head at the moment well 5 wks but just don't feel I can go to the doctors because of there attitude. I have Lupus, Fibromyalgia and Sjogrens syndrome. Thanks for any advise.

in reply to Gillyg

I am so very sorry for what you have been and are going through. It sounds like a complete nightmare :( I don't know if MRSA could be the reason for your problems with the nose. But for your own good and wellbeing it is def. worth a check. See your GP tell him/her that you want an MRSA screening - NOT a normal nose swab (it does not come up on the normal nose swab). Inform him/her that you have had longterm problems with infections from your nose, that you are tired and fed up. It takes approx. 5 days for the result to arrive. If it is MRSA it is so easy to treat, if it is not. Then at least you will have that test done and you will know.

Please, pls let me know how it goes :)

In regards to your Rheum. Tell them upfront how you feel that you feel let down. Because Aza. is not the only treatment for SLE there could be another one which will work for you. But be honest and tell them exactly how you feel, otherwise they will be totally unaware how extremly bad you feel.

Remember you are not alone xxx

Gillyg profile image
Gillyg

Thank you will investigate . Keep well.

Binkey profile image
Binkey

I do find that people plus Doctor's look at most of us(because with most of us,there are no outer signs)with schepticism.I am sure they don't mean it but,I have mentioned this before,as a Doctor friend of mine once said,'You look to well to be ill'.He did know about my Lupus but.admitted that he did not know a great deal about Lupus.Hopefully,more is learnt each year now.

tracyxx profile image
tracyxx

hi just had mrsa test waiting for results were you ok afterwards. worried a minute have kids.

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