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METHOTREXATE NIGHTMARE

Posted , 6 users are following.

rach9999
rach9999

Hi there,

              I was diagnosed with psoritic arthritis in Feb of this year, however looking back at it I'd say I have had it for a number of years but I had been given various explanations as to my aches and pains, I too had brished them off as a "i'm sure it will go away" thing. Well last year I thought I had broken some toes, thinking no problem they will heal, over 8 months they just seemed to get worse, along with a pain that felt like I had a brick attached to the back of my knee and back pain that made it hard to breathe some days. Anyway I'm sure this isnt anything new to anyone here.

So off to the Dr... and great all these things were psoritic arthritis, I absolutley loved the description of my "sausage toes" what girl doesnt want to hear that! So me, my limp and my sausage toes went to see the specialist. Ok waffaling aside, that brings me to today, I have been on Methotrexate and steroids for 5 months with no result other than weight gain, thinning hair, extra exhaustion and I dont seem to heal very well, oh and not to mention the lovely random blood noses that come from no where in the worst places. Im really here to see if anyone has had any luck with this treatment, my Dr still says give it time, and each time I see him I get steroid injections into the worst joints which makes me forget that the methotrxate isnt doing anything for a few weeks. I'm asking myself how long to I give it? I feel I have done enough damage given the length of time I went undiagnosed for. Perhaps its just time for a second opinion rolleyes 

 

2 likes, 22 replies

22 Replies

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  • Lisa_Batts
    Lisa_Batts rach9999

    Posted

    I have sausage toes and fingers... Sexy eh! 😂😂 I can't give you answers but I have been on MTX for some while and have all the symptoms you have. I begged to be taken off it and due to an infection which landed me in hospital they had to take me off it for 6 weeks. I would have said it didn't work for me but towards the end of that 6 weeks I was going to start it again myself because the pain was so bad. It's catch 22 really. Why not give it another say 3 months and if you feel the same go back and they can't fob you off with 'try it a bit longer' as you will have.

    Best of luck

    Lisa

    😊😊

    • rach9999
      rach9999 Lisa_Batts

      Posted

      Hi Lisa, thanks for your reply. Sorry to hear about the sausage toes and fingers!! Just on that, I havent been able to wear anything but flat shoes due to my toes, after nearly a year they still feel like they are broken and I almost jump out of my skin if anyone stands on them or I stubb them.

      Do things get better, I'm told I should be pain free when the MTX kicks in but they are so so sore, everyday everynight , there hasnt been any releif from that area, well it seems like that anyway.

      I'm giving the treatment a bit longer, I'm trying to hide my condition but its getting harder and harder to explain the limping and stiffness, so heres hoping that a few more months will make a difference. biggrin

    • Lisa_Batts
      Lisa_Batts rach9999

      Posted

      Dear dear Rachel,

      Somewhere in this world there are 19 pairs of heeled boots that once belonged to me happily being worn by somebody else!

      Hopefully give it a bit more time and you will notice some difference. If you are still not then maybe you need to try something else. Just wondering if you are on a steroid such as prednisone as that certainly eases my ankle, foot and toes along with the MTX. Also I'm sure you have your reasons for trying to 'hide' this but (and please that is your business and I'm not prying) letting people know may actually relieve a burden and get people to understand.

      Support is very important to me with this.

      I'm so sorry you weren't one of the people to get one of my fabulous pairs of boots at a ridiculously low price! 😂😂😵☀️☀️😊

  • lol8
    lol8 rach9999

    Posted

    Hi I have been told by many sufferers that when they came off mthx after a few weeks they realised it did WORK, most of them are back on it again.. So give it more time like Lisa says ...
    • robert271163
      robert271163 lol8

      Posted

      Maybe we do not realise it is working as the pain always seems the same but infact without it the pain is worse as the condition is worse but because of MTX we are not feeling it 
  • Lisa_Batts
    Lisa_Batts rach9999

    Posted

    I think one of the problems I come to terms with is that even with treatment we will have pain so it is very difficult to judge whether the meds are working. There is nothing wrong with asking for a 6 week break from the meds to see if it is worse or better after you have tried it for a fair amount of time 😊
  • hope4cure
    hope4cure rach9999

    Posted

    Mtx or steroid injections never helped me. Only since I started on stellara injections did I finally get my life back. Mabe that would be the next step to discuss with your doc. I have had no side effects. Feel much better and can do things again that I thought I would never do again. 

     

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