Adverse Events - RA immunosuppresant meds & opportunistic infections

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UK NICE advice to MTX patients is not to take live vaccines if they are on or above 20mg MTX, (as your immune system will be too weakened to fight off even the attenuated but still live vaccine virus eg nasal flu vax).

Have people on MTX noticed getting more infections?

In your resp please can you mention what dose of MTX, (or any other DMARD)

What are the more frequent infections ?

Any change in behaviour that helped avoid them?

I am thinking about summer, when hopefully covid transmission comes down, will we be able to venture beyond the hospital blood test trips? Ie, simple things like a coffee morning… Haven’t been out since starting MTX.

Comments

  • stickywicket
    stickywicket Member Posts: 27,725
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    You understand more about these things than I do, @Arthuritis , but, for the record, I've always been told to avoid all live vaccines on any dose of methotrexate. but to have the flu jab each years. I've done that and my only problem was one year when, actually, I was on leflunomide not meth, and I did almost end up in hospital with breathing problems. However, I suspect I was starting with a cóld when I had the jab. Not made that mistake since!

    In my earlier RA life, I did find that anything that raised my temperature (cold/flu) set off the joints. I wouldn't call these flares as they settled down with the temperature. Now I just skip the meth if I have a hint of a sore throat etc and that seems to avert both cold and RA problems.

    I have wondered if covid transmission will actually go up in summer as people's 'vaccination life' comes to an end and, in any case, I think people are less concerned now. I do go out for walks and ,in the summer, we did have friends for coffee or meals in the garden, but anyone coming into the house (only vaxed people) know to do an LFT first. But Mr SW does go into shops occasionally. In summer, I might actually eat out - literally - at a restaurant.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • stickywicket
    stickywicket Member Posts: 27,725
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    Sorry, I think I managed to reply without actually answering your questions. What a plonker!

    I'm not sure I get more infections on meth but I am more careful to avoid them.

    Dosages, over the many years, between 10mgs and 22.5mgs.

    Usual infections - colds, flu (before I started having flu jabs).

    Change of behaviour? I do try to avoid people with coughs, colds etc and they now know to avoid me😀

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • jamieA
    jamieA Member Posts: 743
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    Hi @Arthuritis

    I think I might have got things the wrong way round here😯. I actually started getting recurring chest infections almost every month from March 2020 - only to then be diagnosed with PsA in October 2020 and put on 3gms daily sulfasalazine. I turned 65 in September 2020 and received my pneumonia and flu vaccine then - only to be hospitalised with community acquired pneumonia in November 2020, December 2020 and March 2021. I was only put on MTX in February 2021 - firstly 15mg, then upped to 20mg in March 2021. It didn't seem to work though and I was put on Amgevita biosimilar in July 2021. I was hospitalised with a chest infection in October 2021 and one of the consultants I saw was a rheumatologist who all but said he thought MTX might have caused it and reduced my MTX from 20mg to 10mg per week. I've noticed a slight difference since the reduction - my joints are more achy now but nothing in comparison to the pre Amgevita period.

    So the short answer is I've actually had less infections since I've been on MTX, however the devil is in the detail. Getting diagnosed with PsA during the period of covid has altered my life considerably. I was on high dose prednisolone for 4 months when I got my 1st covid vaccination, then 20mg MTX for my 2nd, then Amgevita and MTX for my 3rd and booster. So I've been - and I'm being - careful. Regular lateral flow tests, home grocery deliveries and Amazon purchases, gazebo garden meetings with friends and family and avoiding going to social gatherings where there are multiple households, pubs, restaurants etc. My best friend was diagnosed with cancer just pre-covid times and has gone through chemo and radio therapy so we haven't seen each other in the flesh for two years.

    A few of the rheumatology staff I've seen have suggested my PsA could have been triggered by a virus. It was also suggested my first March 2020 chest infection was covid - but testing was withdrawn at the time if you remember.

    So the 'new normal' is certainly significantly different that what I was used to.

  • Arthuritis
    Arthuritis Member Posts: 445
    edited 2. Feb 2022, 16:46
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    @stickywicket @jamieA Thank you so much for sharing your personal experiences, immensely valuable. Hopefully there will be a few more shares to add to yours.


    I guess things like going to the supermarket or shopping are out for you both then?


    @stickywicket Quick Q, 22.5mg MTX is close to the max, is that what you are on now? Which dose do you think you were on longest?

    Why was it changed?

  • jamieA
    jamieA Member Posts: 743
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    I've been into a supermarket probably 4-5 times in the last 15 months when I've needed to. I've a small, local Sainsbury's and I've ensured I've gone at a quiet time and used the auto checkout and paid contactless. I've been to very few other shops - Jeff Bezos rocket contributions have been significant😉.

  • Arthuritis
    Arthuritis Member Posts: 445
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    @stickywicket @jamieA @ToneBlues Any special arrangements for dental visits? Any other changes in routine or lessons learnt?

    Train & Air travel/Public Transport precautions or no go?

  • stickywicket
    stickywicket Member Posts: 27,725
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    Pre - covid we got a supermarket delivery weekly as we're in a semi- rural area. Mr SW sometimes goes to a local shop if necessary. I don't.

    I think, but I'm not sure as it was over 20 years ago, I was started on 10mgs then it was gradually pushed up as necessary. I've always believed in as few meds as possible so asked if I could reduce from time to time. The answers varied but I've been back on 10mgs for some years now.. I did try 7.5mgs but it didn't work out.

    My NHS dentist, since lockdown, keeps me regularly updated. All routine appts stopped but emphasis that they are there if needed.

    Haven't really done public transport for years. Covid stopped our annual flights to stay with son and grandson in LA. He came here before Xmas. Many PCR tests involved!

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • jamieA
    jamieA Member Posts: 743
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    @Arthuritis

    I used to work for BA and still get cheap flights - but I wouldn't even consider flying for the foreseeable future. Even without covid I think I'd struggle to be seated in cramped conditions for an extended time. Funnily enough I did take a short trip on an empty bus the other day. My dog loves travelling on buses and trains and I thought I'd give him a treat. Masks are still compulsory on public transport here in Scotland. I don't get the whole argument against masks it's such a small inconvenience.

    Like @stickywicket my dentist isn't doing routine work like check ups. I broke a tooth last year (before I was put on MTX) and the dentist agreed to see me but with no procedures that could lead to particles being aerosolized - so no drilling. She gave me a temporary filling that's now lasted a year. I broke another tooth a couple of weeks ago but haven't yet called them as I doubt they'll see me. I'm now on 8 different medications - including a blood thinner - which I know would cause issues. My wife still works part time in a respite centre for autistic kids. When she comes home she does a LFT, takes a shower and washes her clothes.

  • Arthuritis
    Arthuritis Member Posts: 445
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    Thanks @jamieA Hugely appreciate your personal perspective.

    Re Bezos, Amazon has been an absolute saviour and very customer focused, particularly with the immunosuppressed. Unlike other couriers that turn up coughing, no mask, refuse to do contactless insisting I open the door to sign, Team Bezos were the first to put me at ease completely contactless & covid compliant, so I share your enthusiasm for them, even if not the cheapest.

    BA has been having some tough times lately since the Spanish merger so you prob retired with perfect timing. My phone ring is Lakmé☺️☺️ (winds up Virgin when I used to get calls at their lounge/ticket desk😂) . VS had a great signature tune like BA, but they stopped using it. (Groovejet)

    BA Still my pref airline esp as I clocked up a lot of corp BA airmiles.

  • Arthuritis
    Arthuritis Member Posts: 445
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    @stickywicket @jamieA @ToneBlues

    Forgot to ask, did any of you change your diet in any way ie food/drink or found anything that set off flares? Or calm it?


    @ToneBlues BTW - Did you ever visit or play at the Blues bar on Kingly St, Carnaby, London? It used to be my fav haunt in London. B.L.U.E.S & Buddy Guys in Chicago. Seems soooo long ago.

  • jamieA
    jamieA Member Posts: 743
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    Hi @Arthuritis

    I've not found any food that has caused me any more issues. I have given up alcohol - I didn't drink much, only red wine - but I've found my taste for it has gone. I've always only eaten a small amount of red meat but I was diagnosed with anaemia just before the end of last year so I've upped my intake of red meat. and I'm eating more bran. It's something to watch out for as it turns out Omeprazole can cause anaemia. If you are on NSAIDs there's a chance you are also on Omeprazole to counter the damage NSAIDs can do to your stomach lining. In my case I'd been un-prescribed NSAIDs last June but nobody had picked up on the fact I was still prescribed Omeprazole - and I didn't know any better.

    Before I was put on Amgevita my really major flares coincided with my pneumonia/chest infections. I've had one bad chest infection since being put on Amgevita but it didn't cause a flare.

    Regarding my time in BA I didn't jump but was pushed. After 27 years service they outsourced my job - to Chennai in India. Initially they didn't offer any type of redundancy but simply said my job would be in Chennai in 3 months and it was down to me to decide whether to take it or not. Luckily most of the workforce was unionised so a redundancy package was finally offered and I retired at 61. There was little chance of a 61 year old IT professional getting a relevant position elsewhere. In some ways the timing was lucky as my work pension is now almost wholly protected since I'm drawing it now.

  • Arthuritis
    Arthuritis Member Posts: 445
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    @jamieA Lots of good points. I’d forgotten about the downsides of omeprazole or any ppi on long term use. I was prescribed it but after losing weight I found I didn’t need it continually. Heard ripe bananas are good for protecting the stomach lining. Also turmeric is better than NSAIDS as it has anti inflammatory effect without the stomach lining issue. Good volume of clinical studies on turmeric.

    Red wine - I now have alcohol free versions, and quite enjoy it. Sparks does a fine merlot and I like Dr Lindemann’s aussie red. (Barts doc emigrated to Oz to found a wine company).

    The chest infection thing with MTX is a worry. Were these bacterial infections? Did pneumovax not work?

    27 years with one company is def a long time, about 3x the average today however a protected pension is a huge bonus, as is the package, something increasingly rare today. Well done! Now you get to choose what your life hours are spent on, instead of an employer. A bit rum though being told your job is in another country!