Methotrexate: Hi all,iv felt very ill last few... - LUPUS UK


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Jeffscott69 profile image

Hi all,iv felt very ill last few weeks,im on 4 x 500mg of flucloxacillin all the time as have sinus problems and staphycocus infection,im on 17.5my mtx injections weekly and 400mg hydroxychloroquine daily,my GP told me to stop mtx,let my immune system build up to fight infection in sinuses?,iv left message with rheumy secretary to ask if i should do this,feel my GP doesnt know much about lupus,dont know what to do.

14 Replies

Hi I've come down with a suspected chest infection and after reading this I'm off to the drs tomorrow,

I take 20mg of methotrexate a week and 200mg hydroxychlorquine daily and this site suggests I should stop the mtx if I do have a chest infection. Have you not been given a number for the nurse who talked you thro the mtx? You should speak to your specialist or the nurse if your unsure

Jeffscott69 profile image
Jeffscott69 in reply to Sami1982

Iv left a message with rheumatologist secretary,said she will email rheumy and get back to me tomoz,i took pleurosy 7mths ago and got nebulisor and steroids to clear it,on these antibiotics evday,yet they not working?,maybe it because of mtx,but without that my joints very sore.

Sami1982 profile image
Sami1982 in reply to Jeffscott69

It more than likely is the mtx stopping you heal hopefully you'll get some sound advice tomorrow 👍🏼

Aw as you know,its debilitating feeling like this,back to work tomoz,rested most of weekend,do they put us on mtx for the joint pains,feel the hydroxychloroquine doesnt help wi fatigue much,horrible tablet,wish they would come coated,taste horrible.

Hello JS👋👋👋👋

Glad to find your post, but very sorry you're having a vvvvv bad time

I was on long term daily high dose flucloxacillan for 5 months due to osteomyelitis of the upper jaw + sinusitis in the neighbouring sinus. This was back in 2011 when rheumatology had only just recovered my infant onset lupus diagnosis & begun me on daily hydroxy. I hated fluclox caps...they were very hard to swallow & tasted dreadful. Those 5 months of 4 caps per day were a nightmare...but the infections did damp down by the close of those 5 months. So am vvv much feeling for you

During those 5 months my GP dispensary sought out different brands of fluclox to find one I could tolerate better. Turned out there was a slightly more bearable brand, thank goodness. Have you asked your pharmacy to help this way?

For what it's worth, my daily rheumatology combined therapy treatment plan is myco + pred + hydroxy + amitriptyline. And immunology has me on daily augmentin (the antibiotic aka coamoxiclav) indefinitely due to Primary Immunodeficiency + persistent pockets of bacterial sepsis (inc sinusitis)

Recently I reviewed with both rheumatology & immunology what I should do if I have a breakthrough infection. This is their advice:

- Get lab sample sent off by GP (sounds like you've done this, as you know it's a staph infection)

- Start appropriate wide spectrum antibiotics daily (again, you're doing this)

- If infection doesn't show clear signs of damping down within 3 days, stop mycophenolate & contact immunology re starting IV antibiotics (I am classed "low threshold for IV antibiotics" due to chronic lymphopenia & hypogammaglobulinaemia)

So, I like the way you're thinking & I'm glad you'll run this by your GP & your rheumatology clinic as planned

Hope you'll let us know how you get on

🍀🍀🍀🍀 coco

Thanks for your help,omg you have been through so much from a young age

Am not alone here though 👭👭👭👫👭👬👭👭👭: there are others whose immune dysfunction & connective tissue disorder started early in life....the empathy & solidarity here mean the world to me

Take care dear JS 🍀😘

Its a great site,why am i on the mtx?,when my immune system not right,is it for the soreness in my body?

Sorry JS: I know little about mtx....except, as I understand it, joint cases are given it 😏

Been in bed all day,but got work tomorrow,need energy,im scared o be off as im getn biopsy soon on sinuses and possibly getting them obliteated,i see a specialist ENT in dundee on 30th nov to decide what to do,but rheumy wants biopsy done 1st to see if anything else going on.

Am so glad you see ENT soon..just wish it could be sooner. Hang in there JS, go gently if you must be at work 🍀🍀🍀🍀

Hi Jeffscot,

As you are ANCA positive as well it may be that your sinus symptoms are inflamation not infection so coming off the Methotrexate will make them worse not better. As I have said before the Dr's better be very sure what your diagnosis is before they " obliterate " your sinuses.

Lupus, Vasculitis etc are auto immune diseases which cause an overactive immune system ( basically the body attacks itself ). Methotrexate is an immunosupressant which calms the immune system down, that's why you are taking it. Unfortunately one of the potential side effects is it can interfere with our ability to fight infection.

Sinus biopsies aren't great for Vasculitis as they have a very low yield, have you thought of asking for a second opinion from Dr Else?

Jeffscott69 profile image
Jeffscott69 in reply to

Iv ended up off work,feel awful with sinus infection,iv stopped the mtx,joints sore?,been on phone to ninewells to find out when biopsy is,scared to ask for 2nd opinion with another rheumy,just so fed up and teary feeling like this,i want to be at work and feel normal,days i have like that are great but they getting few and far between.

Hi, I had pneumonia last November, admitted to hospital twice, the head consultant there told me to stop my metho injections until the infection had gone, as methotrexate lowers your immune system (never been told this in all the years I have been on it!!) and it needs to rebuild. Hope this helps x

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