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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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  • robert271163
    robert271163 rach9999

    Posted

    Hi Rach 

    I am on MTX and i have not found it makes any difference to me but in saying that i was only on 7.5mg for 3 months which is now being increased to 15mg over 6 weeks of which i am 3 weeks into the increasing. The problem is there are so many drugs to treat this condition. There is some that say it can take upto 6 months for MTX to work. Has there been any improvement in the inflamation markers in your blood test? I would of thought you would start to see some improvement in those even if just a little. I am in the same boat as you it took my GP two years to get the correct diagnoses and to get me refered by this time a lot of the damage was done which can not be reversed. If it was me i would be saying this is not working for me and that you want a second opinion. not sure if this is helpful or not best wishes Rob 

    • rach9999
      rach9999 robert271163

      Posted

      Hi Rob,

                       thanks for your reply. Inflamation markers are higher!!! not by much but certainly not the outcome I was expecting from this drug. I will admitt I am inpatient with this whole thing,  I'm very much over walking around like I'm double my age, I have also been trying to hide my condition from family friends and especially at work so I guess I was hoping for a quick fix so to speak and then I would get on with life.

      I'm on 10mg looking to change to 15. I've had other joints join in over the past 5 months and I'm concerned as to the quick nature of this disease. I guess it will be trial and error when it comes to the medication.

      Also my Dr is very old school, hes 76 and although he listens I dont think he takes on board that I know myself and this isnt getting any better despite treatment

      That second opinion is looking like the way to go,  I dont want to get another 12 months into this with still no change.

      On another note, have you had any side effects on the MTX?

      Thanks so much for the chat

      Take care

      Rach

    • robert271163
      robert271163 rach9999

      Posted

      Hi Rach 

      It does seem to spead very quickly that i have noticed too.

      There is thought that this should be blasted with a high does but due to the nature of the drug being as dangerous as it can be it does take time to increase the doseage but in saying that it can be achieved quicker than 5 months. No i have not had any side effects to notice i am still on fortnightly blood tests, apart from when i decided to stop all my meds which was a big mistake i became very unwell within 3 days but stopped as soon as i started taking them again.

      rob 

       

       

  • robert271163
    robert271163 rach9999

    Posted

    Hi Rach 

    I have been thinking about it i am also wondering about the affects of MTX, as it lowers our immune system i was wondering  with the system being low it allows the disease to attack if the dose is not high enough to attack it. this might be why it gets worse before it gets better. 

    • rach9999
      rach9999 robert271163

      Posted

      Hi Rob,

                   thanks so much for your comments, glad to hear you are free of the side effects...very lucky hope it stays that way for you.

      I was thinking about what you said and re the immune system, you might have something there. I'm sticking with the MTX to see how it goes. I'm tryng to remember back to before I was on it and I guess I no longer lie in bed at night feeling my joints being tortured so maybe even though I am in pain still perhaps there has been some benefit. My toes always feel like and elephant is standing on them however.

      Getting some bloods back next week so fingers crossed I see a difference.

      Take care

      Rach

       

    • robert271163
      robert271163 rach9999

      Posted

      Hi Rach 

      I am now at week 4 of the increase so i am now on 5 x 2.5mg next week i go to 6 x 2.5mg. I am not sure if i am having a good couple of days or if the MTX is doing its job but the pain has started to feel less these last couple of days although in saying that my hand were very painful last night for a couple of hours until more painkillers were taken and started working. I will keep you posted on the progress, thinking about it i have not been using my hands that much this week either so that may be why i am not in as much pain either. I do not work due to my condition as i was a chef and it becaume very difficult with gripping and the pain. Hiding your conditon from your employer and struggling on may not be helping the pain you are having it is nothing to be ashamed of its a condition that we can not control, maybe changing the way you do things or lighter duties using your hands and not standing as much may help the pain and also allow the MTX to be more effective might help. Its something you may like to think about. 

       

  • pippie56520
    pippie56520 rach9999

    Posted

    Hi Rach

    I have been on MTX for five months building up to 20mg, I did feel that there had been an improvement about 4 months in but either I have had a flare up or the PA has just progressed but the pain has increased.

    I don't bother going to GP about PA problems any more just phone rheumatologist helpline and either ask for advice or make an appointment. The secretary usually has a chat first to see how things are and sometimes make the dicision to make an appointment straight away without transferring me to specialist nurse.

    I was given an appointment in advance for when I had reached the 20mg dose so would think that you are due to be seen soon but it wouldn't hurt to give them a ring and chase it up or just request one.

    All the best Pippie

    PS I was given meds for bleeding (just one of the lovely side effects).

    • rach9999
      rach9999 pippie56520

      Posted

      Hi Pippie,

                      thanks for replying, looks like we are at about the same stage with the MTX treatment. I'm looking to increase the dosage soon but it will only be to 15mg due to the side effects I am getting, sorry that you have the nose bleeds....I must ask re meds for that.

      I am finding it amazing as to how fast this disease can progress, and every shooting pain I get in a new place I think "no no dont go there"

      I'm sure we are all the same.

      hope all goes well for you.

      cheers

      Rach

       

  • lol8
    lol8 rach9999

    Posted

    hi, i've been on mthx for a year after waiting years for a proper diagnosis, i inject 20mg weekly, i was told to come off all steroids and have been fre off them for 6 months, i really missed them!!. to cut a long story short i still felt bad with lots of flare ups, so back to my rheumy who is brilliant to be told i have to go on another nasty drug to work along side the mthx, well i had my 1st monthly injection last week (golimumab) and i do feel better with my joints being less swollen... Do not bother with your GP they have no inderstanding of the disease. just ring your rheumy  clinic they will always fit you in and they understand what you are going through, it is strange how many of you are on such low doseages of mthx.

    Hope this helps

    • rach9999
      rach9999 lol8

      Posted

      Hi there, thanks for your reply, so after a year on MTX at 20mg you still need more to meds to control the disease, sorry to hear that, but glad it has given you some relief. So far it seems like Mehtotrexate itsnt that helpful. I'm on 10 mg due to the fact that I suffered from the side effects quite a bit, I'm getting used to them so it will be taken up a notch soon, I will persist with it and hope that it does start to have some effect, and like everyone says maybe I have forgotten how I was before I started it.

      Good luck with it all

    • lol8
      lol8 rach9999

      Posted

      Hi, do you take folic acid 6 days a week, do you take tablet as it seems to me that the ones that do have more side effects!!

      At the mo my joints are the best they have been for a long time but i'm soo tired, i do live on a farm and am on the go all day tho.

      I'm just hoping that i can get through the winter with my horses( the last few winters have been a nightmare of pain and very swollen joints) and not be a bumbling wreck of tears and pain!. x

    • rach9999
      rach9999 lol8

      Posted

      Hi again, I only take folic acid 2 days a week the two days before I take the MTX, its worth looking into.

      glad your joints are feeling better, winter can be a test, sounds like you have it much worse than me, I hear you on the tired thing, that doesnt seem to go away, I remember going through a few months before i was diagnosed having to take afternoon naps on the weekend and thats not like me. Working  a farm cant be easy you would always be on the go.

      Get some rest!!! if possible and may winter be kind to you x

    • lol8
      lol8 rach9999

      Posted

      Hi, please look into the folic acid as it's job is to stop side effects, mthx day is the only day i dont take the little yellow pill, it was stressed to me DON'T FORGET TO TAKE IT, i wonder if this is why some lovely people have more side effects!!

      Thanks for the kind words i'm my own worse enemy, daily i usually do about 18/20000 steps a day, i then suffer with my poor feet  all evening, but i will not give into this horrid disease..............x

    • robert271163
      robert271163 lol8

      Posted

      i only take 1 folic acid once a week 2 days after i have taken the MTX i guess different doctors advice is different 
    • hope4cure
      hope4cure robert271163

      Posted

      Oh that is also what helps the Mtx folic acid can make a big difference while on MTX.
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