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First time in this forum and please excuse my spelling because I am not a native english speaker.

I have been diagnosed after changing 3 doctors with atypical Lupus (not having all the symptoms) mostly because I have positive ds DNA (240) but negative ANA,arthitis and constat joint and muscle pain! Till now I have many tendinitis in my  shoulders, hands and lately even Achille tendinitis.So I suffer a lot! I have been taking methotrexate for 4,5 years but unfortunately after a liver biopsy I saw that now I also have liver fibrosis (medium stage).I also take Plaquenil for 5 years and a cortinoze injection every 3 weaks for 5 years also.My doctor proposed biological treatement but I can't take it cause I also had 2 times blatter tumor removed, so it cause them again.

I stop take methotrexate 2 monts ago because if it is the cause for the liver fibrosis maybe I can recover after 1-1,5 years if I stop taking it. 

I visited the best ,well known doctor in Athens and he was furius because I took for so many years methotrexate and now he said, I should take only Medrol 4mg -once a day -and some antidepressant. He says I don't have Lupus but I am very anxius person and I keep worsing things for my health I need physical exercice to gain muscle mass!!!

What should I do in this case?I can't  tell my regural doctor that I had a second opinion and I am so confuse.On the other hand no one in the family can't realise how much I suffer even though I can't get up from the bed or the sofa sometimes.Any ideas or experience with methotrexate and liver fibrosis?

Thank you for being patient with my  english!

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  • Posted

    Hi Liana

    I can't talk about your meds and liver as I don't take that drug, but I can tell you that it took over 2 years for my SLE (Lupus) diagnosis and I believe now this was quite a quick diagnosis as many other waited a lot longer. All my bloods kept coming back negative apart from my ESR (inflammation) marker which was always very high. I suffered with inflammatory bowel disease because of the anti-inflammatory meds I was taking. It was eventually my bowel specialist who diagnosed me from the regular blood tests he did, where all my blood tests came back positive and enabled him to make a SLE diagnosis. It is always 'hit and miss' with lupus. You were right to get a second opinion. It's your body and you know what you're suffering with isn't right. You need to find a good rheumatologist who will hopefully be able to diagnose you. Don't take no for an answer from you doctor, and don't feel bad about getting a second opinion. I manage my Lupus  with: Co-codamol. Tramadol, Amitriptyline (which is a muscle relaxant). I also take Ranitidine as I get severe acid reflux.  I hope you can get some answers from a good rheumatologist. I feel your pain!

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    • Posted

      Hi, Stephanie,

      I'm sorry but you're mistaken about Amitriptyline, it's a tricyclic antidepressant but at low doses it is very effective in lessening neuropathic pain, such as that experienced in fibromyalgia, SLE joint and muscle /tendon pain. Muscle relaxation is an end result rather than the targeted offending problem! I take it myself for Lupus joint, muscle and tendon pain in addition to Trigeminal Neuralgia. It's very effective too, thank goodness.

      Hugs to all.

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    • Posted

      Hi Susan

      Yes, I agree it is an anti depressant in higher doses, so I may have mislead by saying it's a (muscle relaxant). I was prescribed it like you, for SLE as it certainly helps as part of my pain management.

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    • Posted

      I find it does more for the Trigeminal neuralgia than for the other pains I experience. It's interesting that most medications have a secondary use. Amitriptyline is a great example of this, designed first and foremost as an antidepressant but found to be helpful in treating neuropathic pain.

      I also take an anticonvulsant for the neuralgia. Another example of a secondary use for a drug! It interrupts/stops the impulses which causes the pain. I don't know what I would do without either of these drugs to be honest. They allow me to function.

      Sigh! 😁

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  • Posted

    I can't tell you anything about your liver and methotrexate but think your doctor is wrong to say you don't have Lupus. With positive dsDNA that is about as definite as you will get for Lupus.

    I recognise you are now limited as to what meds you can take but would think it wise to follow the advice of your vasculitis specialist.

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