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Frustrated with current meds and rhuematologist

Posted , 8 users are following.

Melly37
Melly37

Hi all first time I've ever post but need some help. Been on 12.5 methotrexate injection for 9 yrs and its just not working anymore still getting flares every couple of wks, steroids don't work anymore! Also on hydroxychloroquine too. Rheumy will not change me to another mediation as he says disease is under control? all I get is painkillers and gabepentin? I'm 37 and cant live on painkillers. Can anyone help or been in the same situation? 

Thanks 

0 likes, 14 replies

14 Replies

  • sherry29159
    sherry29159 Melly37

    Posted

    Hi was started on low dose of MXT and now on 22.5mg plus bio drug. The MXT was OK at first but gradually had to keep upping it as my body got used to it and flaring. I was on hydro as well but now off it. Try and check your blood readings. If you are flaring surely it shows.
    • Melly37
      Melly37 sherry29159

      Posted

      Hi Sherry

      thanks for the reply. was also on a higher dose of mtx but had too many side effects and kept getting ill so reduced back down. bloods don't show inflammation this is the problem and why they won't experiment with meds but my flares are the worst they've ever been apart from when I was first diagnosed! 

    • sherry29159
      sherry29159 Melly37

      Posted

      I am not sure what alternatives there are but there must be something. When you flare do your finger joints swell? Mine did so it was obvious but I assume if they don't they won't take it seriously. But I know the bloods don't always show when you are in pain. I was on steroid tablets as injection did nothing. But I was taking too many and my gp warned me it was not a good idea long term. My rheumy docs never warned me and I think as long as I wasn't complaining they were happy to keep me quiet with steroids! Do you see same doc all the time?

    • Melly37
      Melly37 sherry29159

      Posted

      I know this is my feeling. My hands swell and get very hot but I only get to see my rheumy twice per year so he rarely sees them bad. Steroid injections don't work anymore either. I see the same specialist, I've asked about biologics but because I don't meet criteria they won't change me. Only route I can see is to go private or try a different speialist? sad 

    • sherry29159
      sherry29159 Melly37

      Posted

      Well to qualify for bios it seems you have to prove that all the standard cheap drugs are not working and then get assessed by NICE for approval as they are very costly. Do you have a rheumy nurse? I phone my nurse if I have a flare. Its important you are seen during a flare. Have you explained to the doc that you are not being seen when you flare?
    • sherry29159
      sherry29159

      Posted

      You have got to be persistent
    • Melly37
      Melly37 sherry29159

      Posted

      Its really hard to get an appointment quickly normally just get answerphone with nurses. I will go back to the doc I think for another referal. Thanks for your guidance sherry 
    • elspeth97587
      elspeth97587 Melly37

      Posted

      You can be having a flare up even if it doesn't show on blood tests. Is it possible to change your Rheumatologist?

      I hope you can get sorted soon. Do you take folic acid after your methotrexate?

      I have 25mg Meth inj and 300mg Roactemra inj weekly as well as hydroxychloroquine daily.

      Take care, Elspeth

  • Merdie
    Merdie Melly37

    Posted

    Hi... this is my first time too!

    i have been in a flare up for the last 16 months & understand your frustration. I was started on sulfasalazine which worked for several months until I had a tooth removed 

    ! After that it was down hill all the way, my rheumy then added MXT self injections January of this year along with steroids again after several weeks on &I off of them, my CRP readings in my blood tests were raising higher by the fortnight, these are the markers for inflammation in the body so if you can get the results of these it shows how active your RA is they should be around the 3-5 mark I think but mine were constantly rising &I a fortnight ago they were reading at 59! I've also had steroid drips on 4 occasions which gave a relief for a couple of days then the swelling would begin again. I have now been told I am immune to steroids, after going through a full body bone scan, CT scan & ultrasound to check for any under lying issues they might have over looked I've been told all was normal so it is the RA that is very active.

    tomorrow after months of pain swelling & stiffness I am being started on bio injections with the hope this will control this awful desiese.

    dont give up hassling your care provider, keep asking for blood results and push for something to be done, nobody should be told they can't try other medications 

    good luck x

    • carole78111
      carole78111 Merdie

      Posted

      Hi Merdie, have been on biological ( etanercept) for 10 years, changed my life, but, you sometimes have to have another drug alongside the biologics  for it to work. When I first went on it, it did not seem to work for me, but fibromyalgia was diagnosed, so it was this that was causing me so much pain as well as the RA. After treatment for fibro, the etanercept started to work, and I was put on small dose methotrexate to run alongside. Have been on for 10 years now as I have said, but the flare ups do not just stop, I have recently had pneumonia so am off all meds pending results , RA can cause damage to your soft organs, so can the meds, so do some research, I am caught between a rock and a hard place at the moment, major flare as off meds, but trauma of pneumonia also caused Fibro to flare, so am not in a good place at the moment. 2 steroid jabs barely did anything, and no sign of going back on meds till after results 6th Sept. 
  • lyn1951
    lyn1951 Melly37

    Posted

    I have been through the chemists shop of meds, so know a little of this issue.

    I am on 35mg of MTX injectable, once a week and also 10mg of leflunomide, usual dose is 20mg of leflunomide or arava.

    If Arava works, which it did for me, wonderful, but the side effects, extremely high blood pressure nearly put paid to me, BUT apparently only a small number of people have problems with high blood pressure, so its worth a try. 

    GP DR denied it was the arava, but it was the only new drug that had been introduced in the previous two weeks, for years prior to that mildly elevated bllod pressure, but nothing dangerous, I contacted the manufacturer of Arava, and they asked me who my GP was, I got an abrupt phone call a few hours later telling me to stop taking the drug from GP.

  • Gloria814
    Gloria814 Melly37

    Posted

      I agree with Merdie--you have to be persistent .   Get blood tests but they could be near normal so that is not what always works.  You could take pictures of the swelling and forward to the rheum. Md.   YOu have been on that drug--low dose for 9 yrs so it has stopped working!  They have to either increase the dose or add another.

       I don't know how far away another Rheum. doctor is but it is worth checking into that.   This one is not listening to you.    I find helpful to keep a diary of your symtpoms to take with you to MD but if you are seen infreq. and he doesn't listen that isn't much help.   Hope you can get it under control.    Keep posting and let us know how you are managing.  

  • Rowbirdie
    Rowbirdie Melly37

    Posted

    Hi

    it is puzzling that your blood test doesn't show inflammation.BUT- if you are taking steroids when blood test taken they will reduce inflammation markers( crp) could this be the case? 

    The issue seems to be whether you are flaring or not so they need to look further if you are in such pain. Could there be other issues like fibro myalgia?

    if they accept it us an RA flare then there is a third dmard that can be tried- sulphasalazine. I was on top dose of methotrexate, sulfasalazine and hydroxychloroquine- still flaring - so was put on a biologic which changed my life (uk protocol is to ' fail' on 2 DMARDS and still have high DAS score before biologic tried. The DAS score is derived from a ' formula' which considers your own opinion of pain / disease activity from 1 to 10 combined with their observation of number of swollen and or tender joints combined with how high the crp blood result showing inflammation is.

    Are you in the uk?ask you rheumy for your DAS score which shows mild/ medium or high disease activity. This should be looked under NICE regulations. If your rheumy can't respond to this I advise you to get another.

    you need to know clearly if this is RA getting worse- in which case there are further meds to try. Or if it s not then what else is causing such pain. 

    I have found polite persistence works- ask questions even if you feel awkward doing so and try to get informed.

    • Melly37
      Melly37 Rowbirdie

      Posted

      Hi thanks so much for your reply. Just been to see rheumatoid nurse. She went on about pain and how the brain thinks you're in pain.....😳I said no my hands are double the size you can see the swelling! She said they need to see my hands in this state but when I'm bad I can't get seen immediately so will now be rigorous with pics and diary keeping. Now want to poss try 3 dmards but I'm pushing for biologics. Such a battle to fight! 

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