Methotrexate (MTX) &/or hydroxychloroquine (HCQ) dosage & lifestyle..

Hope people can share their experience of this.

How has this medication impacted your lifestyle?

What can you do/not do/precautions in social context?


What dosage were you started with/on now?

My dosage is low 5mg/week & 200/once a day.

Also taking prednisolone 2.5mg at night, which takes the edge off the nightly marauding T cell attack.

Comments

  • stickywicket
    stickywicket Member Posts: 27,088

    To start with the bottom paragraph - I was started on hydroxy, two 200mg tablets per day. When that didn't cut the mustard I was taken off that and put on meth. I can't remember the initial dose. I think 10mgs per week. I also can't remember when hydroxy was reintroduced (just one tab per day) and the meth gradually shoved up to 22.5 per week. Over the years I've been able to reduce it back to 10mgs.

    I can't say it's had much adverse impact on my social life. I recall once having to ring my rheumatology helpline to ask if it was OK to go for a meal with some friends whose two grandchildren were living with them and had chicken pox. They'd scabbed over so it was. Other than that, I try always to fly out to L.A. on a Tuesday, well away from my Thursday 'meth day' to ensure I don't forget the pills with the time lag. Oh and I don't drink (alcohol) on Thursdays. Nowadays, with covid, not knowing how protected I am even with three jabs, I don't go into crowded places.

  • Arthuritis
    Arthuritis Member Posts: 290

    @stickywicket Thank you so much! That’s really helpful.


    There is a Roche Quantitative spike antibody blood test which shows the strength of your humoral immunity (the one that stops the virus getting in a cell). The TDL (The Doctor’s Laboratory) code is SCOV. NHS Hospitals also have this test as the gold standard. Do not use the Abbott one, its cheaper but doesn’t tell you what you need to know. I have had this test before and after each covid vax jab to see how its progressed. Despite having had covid twice, my antibody pre-vax was zero. After first dose 50, and 2,500 (upper measurement limit) after second jab. Doc called it an excellent immune response.

    Given the danger its worth paying for it for peace of mind, but it would have been nice if NHS GPs offered it routinely to immune suppressed, to determine if you need a second boost.

    Hope this helps. I am getting myself checked on Thursday.

  • stickywicket
    stickywicket Member Posts: 27,088

    You understand the terminology far better than I. My go to site is Johns Hopkins university. They do great stuff and had more info on covid and immunosuppressed before anywhere else. They said that antigen tests aren't much use for us as they only measure B cells (could be T cells) and you could have tons of the one they can measure but, without the other, ,have no protection. A couple of months later the Octave Study (UK) seemed to be saying they could test them and had done. I'm confused.

  • Arthuritis
    Arthuritis Member Posts: 290

    @stickywicket The B cells remember the antigen and produce antigens against it (Also the source of the ACCP antibodies).

    Their job is to produce the vast quantities of antibodies that disable the virus *before* it can get into your cells and start replicating.

    T cells are the bodies marines, they go round killing cells that *have* been infected, ie a mopping up job. You only have a few of these compared to the vast numbers of neutralising antibodies.

    Ideally, you want enough antibodies such that T cells do not have much mopping up to do.

    So in summary, the antibody level is a good proxy of how much mopping up your T cells will have to do, if there are not enough antibodies, which is bad news if they have to kill lung infected cells.

    Hence my reason to want to check, I need to know I have enough to prevent covid from actually getting inside & replicating.

    The booster works by ramping up production of all the antibodies to the vaccine antigen, some effective against omicron.



    Measuring T cell responses directly is possible, but very expensive, and is rarely done outside a research setting or investigating a specific immune issue.


    Johns Hopkins is indeed a high quality source, both website and on youtube.

    Incidentally, its the T cells that do all the damage in RA every night as the go round from joint to joint like a gang of marauding pirates. Given the agony RA causes us, I’d say our T cells are fighting mad!


    The latest in RA research is to target the B& T-cells specific to RA while leaving the rest intact.

    However any results are at last 10 years off.

    The theory is simple enough, link an antigen to a cytotoxic agent. The RA T cells will be drawn to this antigen, and the cytotoxic part will disable or kill it. Doing it in practice has so far been incredibly difficult.

  • frogmorton
    frogmorton Member Posts: 28,046

    Crikey you have done your research! I used to know plenty about T and B cells when my youngest had leukaemia, but brain is doing other things now.

    MTX 20 weekly and Hydroxy 1 tab daily for me.

    No affect really on my life I just time meds to suit me and rest a bit more on the day after MTX oh and eating savoury carbs too!

    I hope you will be able to come off your steroids as your MTX is increased. It's nasty stuff. Long term it's just so bad for us.

    Best of luck

  • stickywicket
    stickywicket Member Posts: 27,088

    Thank you @Arthuritis . You've even managed to explain it in an 'accessible' way. I love the mage of the marauding pirates. I guess we need to make them walk the plank.

  • Arthuritis
    Arthuritis Member Posts: 290

    @stickywicket @frogmorton Too Kind!

    I just had my 1st NHS Rheumy appt, 6 months after GP was notified by another doc i should be referred to a rheumy. Apparently gps are supposed to refer within 3 days due to the nature of RA & window of opportunity.


    Also explained how it had accelerated from a bothersome foot injury due to over use to bizzare, but typically RA symptoms 4 weeks after each vax jab (any vax, as most contain an immune stimulant, the one thing we don’t need). Rheumy agreed that my trigger was most likely the vax, where I likely started with low ACCP & the vax jabs revved it up to sky high levels above max measurable. MHRA are also investigating. Hopefully there will be improved practice to check ACCP if an injury is present before giving a vax.

  • Arthuritis
    Arthuritis Member Posts: 290
    edited 9. Dec 2021, 16:47

    Forgot to mention, my dosage will be upped if my latest bloods allow, to 15mg tab (6x2.5mg) MTX once a week & 200mg HCQ twice daily. Big jump from 5 & 200 respectively.

  • frogmorton
    frogmorton Member Posts: 28,046

    @Arthuritis

    Pleasure anything to help each other.

    I am glad things are being increased once things are under control you want off the steroids (I go on about them a lot but they are a double edged sword). Don't worry it seems a bit jump but the MTX could be done in stages if the Rheumatologist is happy to.

    Take care

  • jamieA
    jamieA Member Posts: 342

    I've been on MTX since February 2021. I started at 10mg and quickly moved to 20mg once a week. Unfortunately I didn't feel it helped. I was put onto Amgevita(Adalimumab) in July and that's made a real difference but was told to continue MTX and sulfasalazine. I was admitted to hospital in mid October with a chest infection and was seen by a number of doctors including a rheumatology consultant. He all but said that he thought it may have been caused by the MTX and as my rheumatology blood tests were ok he halved the MTX dose. I've been feeling a bit more achy in the last month but that may just be due to the winter weather. I've always felt a day or two after taking MTX I suddenly lose all my energy - really wiped out for a day. The other thing I asked about at my last rheumatology clinic was the fact my balance is off at times and the nurse confirmed that that was another possible MTX side effect.

    On the plus side whatever is working for me now - and I think it's the Amgevita - I've been able to go back to walking 50-60 kms per week, albeit with a significant limp!.

  • Arthuritis
    Arthuritis Member Posts: 290
    edited 11. Dec 2021, 22:43

    @jamieA That’s a really helpful and generous share. I am about to start 15mg MTX & worried about chest infections + covid. I can’t even take a booster as each jab has just ratcheted up my RA. (covid 1 covid 2 & lastly flu jab which got me reluctantly in the rheumy’s office). Hosp rheumy agreed this can happen, and MHRA studying it, none of which is a great help. I am amazed you do 50-60KM a week, its what I used to do pre RA.

    Now i’ll be lucky if I manage 5.


    I am so happy you found something that works for you. I take it you are not using hydroxychloroquine (HCQ) at all?


    Also how do you take your MTX, injection or 4 tablets?

  • Arthuritis
    Arthuritis Member Posts: 290

    @jamieA BTW What was the chest infection and how was it treated? Coamoxillin iv ? (assuming bacterial).

  • jamieA
    jamieA Member Posts: 342

    Hi @Arthuritis

    When first diagnosed with Psoriatic Arthritis in October 2020 I was put on Sulfasalazine - I've never been prescribed with Hydroxychloroquine.

    I first fell ill in March 2020 with what my GP thought was a chest infection - well before any signs of PsA appeared. I've had at least 10 chest infections/pneumonia since - only two since I've been on MTX (which started Feb 2021). When I was admitted in October 2021 the medics thought it was a viral infection and suggested it would pass in 7-10 days without medication. They made that call partly based on my blood results. My CRP level was 1, my ESR normal and the 3rd one - I can't remember the name - was only very slightly elevated. However it didn't pass and 2 weeks later my GP then decided it was bacterial and put me on a course of doxycycline which did seem to cure it.

    I take the MTX in 2.5mm tablets so 4 once per week. Every other week on the same MTX day I inject the Amgevita. I was also prescribed Capsaicin cream, specifically for my worst joints - knee and shoulders - and I think that's helping as well.

    I used to walk 60-70kms per week before PsA happened - I've a labrador and I'm a keen amateur photographer. I'm also retired so have plenty of time.

    I've been hospitalised 6 times in the last year due to chest infections/pneumonia and PsA. At times I couldn't even butter the toast they served me for breakfast due to my shoulders and hands. I couldn't get out of bed. They had me on morphine at one point for a week when I was in in June 2021. Since about a week after the second Amgevita injection - started late July 2021 - things changed significantly for the better and I've been building up my walking since.

    A number of the medics I've seen - including a Covid consultant - have suggested that my initial chest infection was probably Covid - though I didn't have any of the symptoms at the time so wasn't tested. I've also read a couple of reports of psoriasis sufferers being diagnosed with PsA after having Covid. That might explain the rapidity of it all as I have psoriasis.

Who's Online

8
Baloo
Baloo
Edgey_75
Edgey_75
RAPaul69
RAPaul69
+5 Guests