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Methotrexate - too soon??

Posted , 6 users are following.

heledd77
heledd77

Sorry in advance for the long post. I’ve been prescribed MTX but I think a little too soon for my symptoms, and I was looking to chat / get some advice really.

I was diagnosed with RA in Nov 2014 and put on 200mg of Hydroxychloroquine a day. At that point the pain was in my legs and right hand. In March 2015 my dose was increased to 200mg / 400mg on alternate days. By this point my left knee was causing the most problems, the main issue being quite painful to walk and straighten especially in the morning.

In July 2015 I went to see the consultant again and my dose wasn’t increased as by this point my hand was happily almost completely symptom free. My knee though was worse and I was sleeping badly due to the pain, morning stiffness was lasting over an hour, and I was feeling quite low and tired. However I think I was lucky in that I didn’t miss any days off work, didn’t need help dressing or bathing etc.

As usual I had blood tests, and went back in Sept for my next appointment. My consultant said that having looked at my blood results that she didn’t want to put me on MTX but would book me in for a steroid injection in the knee. I didn’t have blood tests during this visit.

I had the injection in Nov and I’ve been really blown away by how effective it’s been. Truly, I felt like I had a new knee. It also had a massively positive effect on my emotional and mental health. This lasted until the beginning of Feb when I had the beginning of pain in the morning and fluid on my knee again.

I went back for an appointment in Feb and was seen by a different consultant. I told her how much better I’d been feeling but she said I would now need to move on to MTX and I have a nurse telephone consultation on the 10th March, after which a prescription will be sent out. I had expected her to want further blood tests before making this decision as I had been feeling so much better and she was basing this decision on tests from July, which the previous consultant had already seen and decided against MTX. I was so disappointed and surprised I just accepted what she said and it was only afterwards that I started to question her decision.

I really don’t think I’m at the stage where I need this drug. I’m due to have another steroid injection which helped so much last time, and I really think the potential side effects outweigh the positives, given that I feel well most days. Currently my thoughts are that I’ll speak to the nurse on the 10th but say I don’t want to proceed.

Has anyone else been prescribed MTX when they’ve been feeling pretty well, and dealing with the symptoms well? Or am I being a fool to myself and should go ahead with this treatment?

 

0 likes, 5 replies

5 Replies

  • sally83545
    sally83545 heledd77

    Posted

    Hi Heledd77,

    I was started on MTX about 10 weeks ago for Lupus Arthritis similar to RA . My understanding is that the these types of arthritis can progress quickly and since it does take time to start seeing the benefits of the MTX it is best to begin treatment early. I also had a Cortizone injection that gave me great relief but was told you cannot keep getting the injections to manage the problem. The MTX is also supposed to prevent damage to the joints. I have noticed increased energy on the MTX and overall less inflamation. I did have some side effects at first but the longer I have been on it the side effects have decreased. I think it is a good idea to start taking it now..I take five 2.5 mgs once a week. (also has helped with my fatigue. Also I take 400mgs Hydroxychloroquine daily. Good luck and feel better,

    Sally

  • mjaxx
    mjaxx heledd77

    Posted

    The sooner treatment with an immunosuppressant is initiated, the longer you may be able to enjoy good health and an active lifestyle. Often, methotrexate is prescribed early because it actually slows the progression of the disease and may even place it into remission for a long period of time and prevent further damage to joints during this time. Some doctors like to treat aggressively to try and produce remission early into a diagnosis because remission is easier to achieve in the months and first few years after symptoms begin.

    Methotrexate can have serious side effects depending on dosage, and your doctor has likely weighed these against the quality of life you're expected to have over the next few years if you do not begin treatment. A steroid injection into a joint will greatly relieve the inflammation and pain in that area, but will do nothing to reduce the systemic immune response that causes rheumatoid arthritis and eventually damages the joint. Methotrexate, on the other hand, will.

    You definitely have choices however, and you should only continue to take the methotrexate if the side effects aren't becoming unmanageable, at which point you may want to discuss a trial of a different medication like a monoclonal antibody injection. This type of immunosuppressant acts only on the immune system to reduce specific cytokines that lead to the joint damage, rather than suppressing all proliferating cells like methotrexate, cyclophosphamide, and azathioprine. Of course, antibodies have their own side effects and will still increase the risk of infection and cancer like the other immunosuppressants. You need to weigh everything up to determine the best treatment for yourself, based on side effect tolerability, effectivity, and ease of use.

  • Rowbirdie
    Rowbirdie heledd77

    Posted

    It sounds as if they re suggesting mxt on the basis of the cortisone shot in the knee only lasting 3 months-  therefore the need for a further disease modifying drug to tackle the underlying problem . 

    Have a good honest chat with the rheumy nurse. Mine is brilliant.

    Put all your concerns to her and see what she says.

    Probably it's best to follow what the consultant has said , but don't worry, mxt is a very common med for RA. While you are taking it you will have to have a blood test every month , which will show your inflammation levels( crp) and check you are ok with the med.  I suppose you could ask the nurse if you need crp level before you start treatment esp as that s your concern that you could be better than the consultant thinks.

     

  • heledd77
    heledd77

    Posted

    Thanks everyone, really appreciate your throughts. I suppose what;s been concerning me is the potential side effects when weighed up with how well I feel right now, but of course I appreciate that treatment is best began early.

    what were your experiences of MTX side effects? I've been told that tiredeness is quite bad on the day you take it, and at the moment that makes me a bit nervous as I'm so busy at work.

     

    • sally83545
      sally83545 heledd77

      Posted

      Hi heledd,

      I had heard all the horror stories so I was very anxious about starting the MTX. I took two suggestions that I think really helped. I take my dosage at night after a bowl of oatmeal. Try to eat things that are starchy and easy on the stomach the day of your dose. This is my 11th week. The first 4 weeks or so I was very tired and had an upset stomach the first 2 days after the dose. As time goes by I have fewer and fewer side effects just tired the next day. Try to stay ahead of stomach problems by drinking alot of water and eating starch. I am mostly gluten free but make an exception for these days. Remember your body does get used to the MTX so don't give up if you can tolerate it. I have noticed improvement in my inflamation joint pain and neck and shoulders. There is a good reason MTX is the "Go to" drug.

      Power through! Good luck and feel better,

      Sally

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