Does it get better?

esparks88 Community Member November 27, 2008
  • I have been living with RA for almost 2 years.  It seems that everything we have tried is not working.  I was on Methotrexate for over a year and have recently switched to Leflunomide.  Things have gotten worse but my doctor told me it would get worse first.  If this doesn't work I qualify for injections.  The pain in my hands has gotten worse.  I feel like it's never going to get better.  Can anyone give me some advice on what I can do to turn this thing around for a while? 

10 Comments
  • happymomma
    Dec. 01, 2008

    I too am taking Leflunomide along w/ the Methotrexate.  My Rheum. Dr. also has me on Dicloflenac, Folic Acid, & Neurontin (pain med.); I also have to take a multi-vitamin & a vitamin C tablet daily along w/ 1200mg. of calcium (one 600mg. tablet twice a day). It seems like a lot but I am getting some relief.  I've been dieting for a while but...

    RHMLucky777

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    I too am taking Leflunomide along w/ the Methotrexate.  My Rheum. Dr. also has me on Dicloflenac, Folic Acid, & Neurontin (pain med.); I also have to take a multi-vitamin & a vitamin C tablet daily along w/ 1200mg. of calcium (one 600mg. tablet twice a day). It seems like a lot but I am getting some relief.  I've been dieting for a while but now I'm really ramping things up so that I can get this weight off to see if it helps w/ the joint pain. It does seem like things get worse but once the new med. is in your system (usually about 6 weeks) you should feel a difference.  The advice I was given was to drink pomegranite juice & take a tablespoon of cherry juice daily; doesn't sound appetizing but actually the pom. juice is tasty & the cherry juice is sooooooo very sweet but I just gulp it down instead of mixing it w/ another juice. I am like so many of you~~willing to try almost anything to get some relief.  I don't like taking meds. but RA is something that requires some form of medicine.  Take care & God Bless.

    Kellie

  • Josephine
    Dec. 01, 2008

    Yes, I think that things will likely get better for you.  Its a matter of finding the best meds for you and that can take some time.  I know that's hard to hear when you are in pain.  Your doctor should understand your need for adequate pain management.  Ask him for something to help with the pain until he finds the right disease-controlling...

    RHMLucky777

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    Yes, I think that things will likely get better for you.  Its a matter of finding the best meds for you and that can take some time.  I know that's hard to hear when you are in pain.  Your doctor should understand your need for adequate pain management.  Ask him for something to help with the pain until he finds the right disease-controlling meds for you.  In the meantime, try to reduce your levels of inflammation by avoiding foods that are linked to inflammation, such as meats and saturated fats and omega-six fats.  Load up on omega-3s, rice, and lots of fruits and vegetables to help combat inflammation.  Hang in there, and maybe push your doctor to try a biologic drugs sooner rather than later.  Good luck.     

    • ger
      ger
      Dec. 01, 2008

      jOSEPHINE,

      tHANKS

  • Michelle
    Nov. 30, 2008

    Hello!! Im also a 32yr old mother of 5 kids!..Believe me there are so many things that you will experience with this illness..Especially Depression and feeling as if it will never go away! ITs so hard, Believe me I know..BUt it will get better..I have been taking Enbrel..And OMG..The first shot I took..I was up and down..for the whole week..IT has helped me...

    RHMLucky777

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    Hello!! Im also a 32yr old mother of 5 kids!..Believe me there are so many things that you will experience with this illness..Especially Depression and feeling as if it will never go away! ITs so hard, Believe me I know..BUt it will get better..I have been taking Enbrel..And OMG..The first shot I took..I was up and down..for the whole week..IT has helped me alot..I mean I do have my days..Especially with the winter season here..U dont feel happy..You wonder if your going to be like that for Thanksgiving..Christmas..You wonder if your ever going to put a smile on your face..But take it one day at a time..IT will happen..And dont beat yourself up..I have received so much help on this site..I read so many posts of people that sound just like me..And you will to..

    IF u ever need to chat...

    Im here...

    (HUGS)Smile

    • ger
      ger
      Nov. 30, 2008

      Hi,

       Read your comments. Seems like you have a good handle on it. I was only recently diagnosed and i'm finding it impossible to deal with . i have it in my hands and i just don't know how to get on with life anymore. Otherwise i am very healthy and active, but i am going to have to go on disability now as i work with my hands. I am depressed over it and...

      RHMLucky777

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      Hi,

       Read your comments. Seems like you have a good handle on it. I was only recently diagnosed and i'm finding it impossible to deal with . i have it in my hands and i just don't know how to get on with life anymore. Otherwise i am very healthy and active, but i am going to have to go on disability now as i work with my hands. I am depressed over it and find that i feel my friends wii desert me now that my life has utterly changed and i am a totally different person inside. I have lost that spark for life i had and i am feeling sorry for myself and blaming myself for bringing it on due to injuring my hands at work some years ago. Am i a lost cause? How can i go on and start living again? I am full of guilt also for causing it myself.I am 52 and single.  

                                                ger.

    • Josephine
      Dec. 01, 2008

      RA is not caused by anything that we do to ourselves.  Actually the exact cause is not known, but experts think that it is caused by some unknown combination of genes and an environmental trigger.  Beyond that, I can't think of anyone who would knowingly bring RA on themselves.  It is important to take very good care of yourself, especially...

      RHMLucky777

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      RA is not caused by anything that we do to ourselves.  Actually the exact cause is not known, but experts think that it is caused by some unknown combination of genes and an environmental trigger.  Beyond that, I can't think of anyone who would knowingly bring RA on themselves.  It is important to take very good care of yourself, especially with RA. You can learn a lot on these web pages.  Learn as much as you can and find a good rheumatologist. 

       

      Yes, life does change with RA, but it can still be a good life.  I am a similar age and have had to make major changes after being diagnosed last year, including changing to less work and giving up a job I loved.  One of the things that has helped me is saying to myself, "Okay, this is where we are today." and making it the best day that I can given how I'm feeling and what I'm able to do on that particular day.  Its all about grieving our losses and starting again.

       

      In regard to friends.  Your true friends will still be there for you.  Other friendships that were not as deep but based on common activities that you may no longer share will fade away, but new ones will take their place.  You will likely find new friends who also have RA and they will understand your new life and its challenges in ways that others cannot.

       

      Best wishes to you.

    • ger
      ger
      Dec. 01, 2008

      Josephine,

      Thanks for your kind words. I guess i haven't accepted it yet, and i am finding it very difficult to cope. It's like grieving i suppose, the question being-How long does it take to find a balance? It's a major loss when your hands are your tools for so long , then finding out you cannot use them anymore for work. That makes me feel unworthy and useless...

      RHMLucky777

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      Josephine,

      Thanks for your kind words. I guess i haven't accepted it yet, and i am finding it very difficult to cope. It's like grieving i suppose, the question being-How long does it take to find a balance? It's a major loss when your hands are your tools for so long , then finding out you cannot use them anymore for work. That makes me feel unworthy and useless and i struggle with that daily. I don't know how long i can carry on like this, it's very debilitating and i feel less of a man because i cannot work with my hands anymore. But i will have to get on with it and find something new and fulfilling that will make me function in some meaningful way. I don't want to be a burden on everyone and constantly being inward looking and self absorbed to the detriment of everything else.                                               ger.

    • Josephine
      Dec. 01, 2008

      I think that grieving is an ongoing process when one has a chronic disease, but it will ebb and flow.  I understand about the feeling of being less useful and less valuable because of not being able to work like before RA.  But everyone has value beyond their ability to work.  Just keep doing what you can and that is all that you...

      RHMLucky777

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      I think that grieving is an ongoing process when one has a chronic disease, but it will ebb and flow.  I understand about the feeling of being less useful and less valuable because of not being able to work like before RA.  But everyone has value beyond their ability to work.  Just keep doing what you can and that is all that you can do.  Let the rest go.  Most people really do like to help when their help is needed, and find value and inspiration in helping.  I worried about my husband feeling that I was a burden, but he has been great about helping and so have other family members. 

       

      As your disease comes under better control you may find that you will be able to use your hands more than you can right now.  Not saying that that will happen, but once inflammation is under control there is often less pain and greater ability to function.

       

      I remember meeting a wonderful man long before I had RA who had to give up his career as a professional musician because of RA.  He went back to school and got a degree in business and then began helping people develop businesses in economically deprived areas.  To me he was incredible courageous, and perhaps even helped more people than he ever would have had he not been forced to change careers due to RA.  I guess my point is, there are many ways we can still contribute to the world.  Don't let RA rob you of your self-worth.

  • Anonymous
    brissie girl
    Nov. 28, 2008

    Unfortunately, you just have to take it a day at a time. I'm 32 and have had RA since I was 4. I've been on all kinds of different treatments through the years and there's never a guarantee that something that works now is going to work in 5 years' time. I do think that people who are diagnosed now are in a much better position than they were when I was diagnosed....

    RHMLucky777

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    Unfortunately, you just have to take it a day at a time. I'm 32 and have had RA since I was 4. I've been on all kinds of different treatments through the years and there's never a guarantee that something that works now is going to work in 5 years' time. I do think that people who are diagnosed now are in a much better position than they were when I was diagnosed. At the moment I am on a combination of Leflunomide and Humira which has got it pretty much under control. I think drugs like Humira are having amazing results and are worth mentioning to your rheumatologist.

    It may seem at the moment like it will never settle down, but remember that every flare-up ends eventually. I hope I've been of some help to you.

    • esparks88
      Nov. 29, 2008

      Thanks for your comments.  I guess I haven't really had a flareup as such.  I don't think I remember what "normal" feels like.  Since I was diagnosed in March of '07 I have not been able to get it under control.  Thanks for your advice.  I will take this with me to my next appointment in December.  Thanks also for the support. ...

      RHMLucky777

      Read More

      Thanks for your comments.  I guess I haven't really had a flareup as such.  I don't think I remember what "normal" feels like.  Since I was diagnosed in March of '07 I have not been able to get it under control.  Thanks for your advice.  I will take this with me to my next appointment in December.  Thanks also for the support.  I am so glad I found this site.  Now I can talk to people who are going through the same thing as me. 

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