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New RA patient

Posted , 3 users are following.

donna82193
donna82193

Hello all. Ive been reading your comments and worries for a few weeks. Im new and have been diagnosed with RA, osteoarthritis

in all of my spine and carpel tunnel syndrome. Im 43yrs with two kids. Ive read so much about the drugs and quite frankly they scare me more than the RA. The consultant hopes to put me on a drug trial. The worst part of all this is fatigue. Im worried about my job, money etc. Any advice would be very welcome. X x

0 likes, 7 replies

7 Replies

  • slm222
    slm222 donna82193

    Posted

    Hello Donna, and welcome!

    Sorry that you have to be here for the reasons we're all here for though. This forum has been wonderful for me. You learn so much more from the people who deal with RA day to day than most doctors.

    Like you, I was terrified of taking the drugs for RA. But I was starting a new job with a hospital (doing registration of all things, so my hands are busy all day! Ugh!) and knew I had to do something. 

    They do help somewhat but they don't take every pain or swelling away and they definitely don't do anything for the fatigue (at least that has been my experience). My doctor is also putting me on a clinical trial in a few months with Enbrel. She said that the TNF Inhibitors in those drugs (which are apparently very expensive) are what really help with RA. It blocks the inflammation which causes the pain. Now, if it helps the fatigue or not is a different story. I asked my Rheumatologist if the fatigue would go away eventually and she said Yes. But I'm not so sure when I read out here as others have had the disease for much longer than I have and still deal with fatigue, even on medication.

    I too worry about my job because it simply exhausts me. I have been wondering how long I will be able to work, or if I can afford part time work because most of the time, I feel like I can only handle part time work. 40 hour work weeks seem impossible to me now.

    Keep getting information---read, read, read is my best advice. Don't get too involved in all the scare tactics about certain drugs. But be mindful of what you end up having to take and ask questions. Don't let your doctors leave you wondering about anything. It's their job to take care of you, so ask them any questions and concerns you have.

    Good luck and keep us updated!

    • donna82193
      donna82193 slm222

      Posted

      Thankyou so much for your reply. Its so good to talk to people who are the same as me. Im currently off work and will be seeing consultant to see if I can return on reduced hrs. I had a kenalog inj a week ago which has helped a little.

      I dont know how u cope working full time. Hats off to your dedication and determination.

      Let me know about your drug trial.

      All the best. X x

    • frances85589
      frances85589 donna82193

      Posted

      Hi there Donna..I hope what ever drug you try works as it doesn't always.methotrexate was working for me but had to come off it as it was damaging my liver.have tried embrel humira and rituximab.currently on sulfasalazine but still struggling in pain now unable to work.unfortunately I think last drug rituximab has damaged me as I am now having spasms when I sit and my body is jerking to left when I walk. I am having MRI Sunday and see a neurologist week after.Strangely I was ok before December and I think it was the rituximab.consultant very worried but baffled. Think all these drugs have been too much for me
    • donna82193
      donna82193 frances85589

      Posted

      Oh wow thats awful. Im so sorry. I will

      Definitely be making an informed decision about these drugs. The thought of never have a glass of wine again!!

      I don't think ive comes tp terms with my diagnoses yet and might just take my chances.

      May I ask if u are similar age?

      U take care x x x

    • frances85589
      frances85589 donna82193

      Posted

      I am 57.used to climb mountains and walk about 16 mile each month when out with walking club.just hit me.think stress of losing my mum brought it on do doctors say.don't worry about the wine I always drink that !
    • donna82193
      donna82193 frances85589

      Posted

      I was an armed and unarmed self defense instructor and tactical advisor until this struck in November. Woke up like this. Devastated. X
    • slm222
      slm222 donna82193

      Posted

      I was walking half marathons and doing Pilates 3-4 times a week. Slowly I was unable to do these things. I'm just now getting back into walking and although I love Pilates, I have a Pilates Reformer machine and my hands can't do any of the arm work with the loops on the handles yet. It causes too much pain.

      I'm on Methotrexate now. I just started my 3rd dose after being on Leflunomide for about 4 months. I am a 'per diem' (on call) employee so thankfully right now I am not working full time; however, we're getting a brand new software for the hospital and I was told to prepare for 40 hour work weeks. The money will be great, but I worry very much about my body and being able to do it. I just turned 50 in December and I feel like I'm 80 some days. The fatigue gets to me the most. It causes a lot of depression recently for me. I hope some day they can find a cure for this awful disease.

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