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Rheumatoid arthritis need help with medication

Posted , 5 users are following.

mg-guner
mg-guner

After harrasing my GP for four years i finally got referred to rheumatolgy.

I went to see the consultant in Oct2014, he looked at my hands,feet and blood results and said i have RA and to go with the nurse. The nurse took some more blood, gave me an inj of 80mg depo steroid and sent me to x-ray.  I then had a chest, hands and feet x-ray and was told i could go home, i asked about info etc and they said have you got the internet. So i left along with thousands of questions in my head.

My GP subsequently put me on Sulfalazine 500mg 8 x day.

i struggle with any tablets never mind these bricks and even after forcinga couple down they make me sick and unwell and had to give up after a few weeks. I managed to speak with the RA specialist nurse and they put me onto weekly methotrexate injections at the hospital.

I have a 15mg injection weekly but every 3rd week my WBC and neutrophils are always low so they wont give me it. So it is always stop and start. The last couple months i have had to stop twice and have antibiotics as they found a heavy growth of H.influensae on my chest.

I have now started injections again last one being 11th march.

On the 13march my GP receptionist showed me a letter from my consultant, dated 26feb saying my methotrexate has been stopped and to put me back on sulfalasine 500mg 8 x day initially????  even though he hasnt informed his own hospital as they still giving me methotrexate, next one booked for 19th march.

the last couple days my chest and sinusses have been really bad again, with poor breathing and i know its the H.influensae again, and feel really unwell.  So obv on 19th march will tell the nurses about letter and wont be able to have inj, but hey have still mademe ill again.

Been to GP today and he said will do another sputum test and the mix up isnt his fault.

sorry about the long story but this isnt half of my problems with hospital and gp.

I also suffer from osteoarthritis in hips, knees from previous motorcycle accident, migraines(cyst on brain), sciatica pains, depression and insomnia.

Medication also includes, Fentanyl patches, Zapain, Rizatriptan, Diclofenic, Baclofen, Folic acid, amitryiline.

Thanks mark

1 like, 10 replies

10 Replies

  • mg-guner
    mg-guner

    Posted

    Sorry forgot to mention i am still struggling with the pain, and only feel worse with no improvement at all since october, which was main reason for posting, thankyou
  • mg-guner
    mg-guner

    Posted

    Also ever since being on the methotrextate my bones feel as if they are in deep freeze and i cannot get warm, so any ideas on alternative medicine would be great thanks
  • murray2
    murray2 mg-guner

    Posted

    Hi Mark, did your rheumy start you slowly on the sulphsalazine? Mine instructed me to gradually build up the dose, starting with one 500mg a day for a week, then two a day for a week etc to the regular dose of 4 a day. This is to minimise side affects like nausea.

    The same applied when I started methotrexate, building to the regular dose of 20 mg a week, taken by mouth. My rheumy says that methotrexate and sulphsalazine work well together. It seems to be working for me for the past three months or so. I am also taking 9 mg of prednisone a day, reducing gradually.

    I also take an ayurvedic liver tablet each day to help protect my liver while taking the medication.

    I wish you well.

  • murray2
    murray2 mg-guner

    Posted

    Hi Mark, I sent another reply but it is being moderated. I forgot to say that my knee area always feels cold. Not sure if it is the methotrexate though, because I usually feel cold.
    • mg-guner
      mg-guner murray2

      Posted

      Hi thx for your reply murray2, will wait to read the other, yes i also feel cold a lot, only built thin, lol, but since the methotrexate all my bones often feel like they have been in a freezer and nothing can warm them, luckily its not all the time,  Theres so much going on i dont know whats the medication and whats the illness causing problems, thx
  • eileen11130
    eileen11130 mg-guner

    Posted

    Sorry to hear of your problems. I am un USA   I have RA after a long list of Drs and test.  Also have PolyMyalgiaRheumatica which makes my arms and mid ask difficult to move and very painful.  Methotrexate pills and injections madevmillmso sick to my stomach I had to stop.  Have had several different shots and infusions and none really work long.  Have had Osteo and Fibro too.   All very painful. For five years.  Am on Fentynal patch as long term Oxy does not work and am on breakthrough Oxy.   Which are ok.  Pain still there but livable except for walking.  Can hardly move anymore.   Have been on Enbrel,Remicade, ORENCIA, and now SymponiAria .  It seems if you don't take through, they don't work so well.  But everyone is different.  I definitely would call Rheumy dr.   GPS usually don't handle RA.  But metro is a killer...it ruined my stomach...wake up ill every morning.  Live on Prilosec.  Folic Acid did not work long enough in one day.  Hope you try something different. Sounds like these are not giving you the relief you need.   By the way I take Prednisone for the Polymyalgia.  That's the ONLY. Thing that works.   Have gained 60 lbs in a year.  
    • mg-guner
      mg-guner eileen11130

      Posted

      thx for your reply eileen, i read about Prednisone but my GP reckons its to damgerous, brittle bones? so wont prescribe.

      I have lost over a stone, i am now just over 10, was 11 and half stone, i am 6ft1 and though they say no problem with weight i feel like i am wasting away, was only slim anyway, lol. But seriously it is the fatigue and tiredness which is ruining my life at the moment.

    • Light
      Light mg-guner

      Posted

      I totally sympathise with you about the fatigue. It's a bummer!

      Losing weight is good in that it takes off the burden from the joints, but don't waste away - please!

      Your GP is right about prednisolone, but if you supplement your diet with good calcium and do weight-bearing exercise when you can bear to, you can offset the brittle bone problem.

      You might also put on weight with it, oddly enough.

      To not prescribe the one drug that can help because of its long term effects is a little odd, to say the least. It should just be carefully monitored, and your bloods done every two months, maybe more often to start so as to watch how your body reacts.

  • barbara58180
    barbara58180 mg-guner

    Posted

    I  think maybe you need a new rheumatologist. I saw so many after my first one moved away. I'ts really hard to find the right ine. I am in the US, not sure how things work in the UK, but also have had serious depression problems that took a lot of differernt Psychiatrists to diagnose and treat effectively. It IS SO HARD.

    Just keep trying. Prdnisone saves me sometimes, I hate it, but at times is the onoy way to get relief, and sometimes that's all we need. Find a good compassionate doictor--don't stop until you find one!! Good luck.

  • mg-guner
    mg-guner

    Posted

    Hi been back at hospital today and they have stopped the methotrexate and put me on sulfalazine liquid, got to wait a few days for script and then see how that goes, thanks everyone for support and replies
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