1. Community
  2. Bones, joints and muscles
  3. Rheumatoid Arthritis

Thoughts on overall prognosis of RA

Posted , 7 users are following.

slm222
slm222

Hi All,

I was diagnosed in September 2014 with RA. I was put on Leflunomide 10mg but it felt that not much other than my foot pain went away. The dosage was increased to 20mg, but just about the same time I increased the dosage, I started seeing a new Rheumy, and she put me on Methotrexate of 15mg in stead of the Leflunomide.

Within a few weeks I could feel old pains come back that I hadn't realized the Leflunomide had taken away. She told me it was due to the change of meds (even though they are both DMARDS) and to give it time. Also, I was in line to get in on a clinical trial for Enbrel and the only way I could get on that trial was to be on MTX for 3 months. 

Still, more pain and the loss of hair was much worse than when on the Leflunomide and the fatigue even felt worse. WhenI told my Rheumy this, this time she said that none of the DMARDS would really work for me because my RA was very involved and only the biologics like Enbrel would do any good for me.

Unfortunately, I found out recently that the trial I was supposed to start on next month closed before I could get on it. Needless to say, I was devastated. I had just kept thinking that all of the pain and fatigue would be taken care of when I got on the Enbrel and now it's not going to happen.

When I saw my Rheumy for my follow up a couple of weeks ago, again I told her that the MTX was doing less for my RA than the Leflunomide. This time she said I needed to give it 3 months. Well, I've been on it for 2 and 1/2 months and it seems that by now, I should be feeling at least a little better; not worse, right?

I work as a medical lab registration clerk and I see RA patients daily who tell me that the Enbrel worked for a short time for them, but stopped and even though they're still on it, along with the MTX, nothing really helps.

My Rheumy is out this week but I decided on my own to start taking my Leflunomide again and stop the MTX, since it wasn't helping and there's no clinical trials to get on at the moment. AND, it appears that Enbrel isn't the 'end-all, be-all' drug my Rheumy says it is. I know that everyone reacts to meds differently, but right now I'm feeling completely hopeless.

It seems like no matter what I end up on, I'm never going to get rid of this awful fatigue along with the daily pain and the bad flare ups. For those of you that have had it for several years, what is the REAL prognosis of RA? Will I ever feel better? Is there a good drug out there? I just feel so depressed and hopeless that I'm not going to find anything to help me. I can't stand living the way I'm living right now. Never knowing if I can work a full day, never knowing if I'll be too tired for events that I plan...I'm 50 years old and I feel 80. Thanks for letting me vent. I'm just feeling really down today. sad

 

0 likes, 25 replies

25 Replies

Prev
  • Hala_Ahmed
    Hala_Ahmed slm222

    Posted

    Hi Sue.

    An interesting thread.

    I have exactly the same experience.

    Mtx strangely increased my pain as if it spread the symptoms allover my body. I have discussed that with two rheumies. One said it's impossible to have this. The other said that they have seen that but they don't know why this happens. Both defend Mtx and kept increasing my dose. I still say my disease was milder before I used mtx.

    I tried leuf. before. It just vanished my symptoms. But my rheumy keeps saying I must give mtx time.

    I agree anti inflammatory drugs e.g. Mobic helped get inflammation down. But it comes back when I stopped it.

    Mtx is a weird drug for me. Don't understand why it caused me more more joint pain.

    • cheria
      cheria Hala_Ahmed

      Posted

      Hi Hala, my thoughts on why MTX causes more joint pain (for me, fibromyalga pain also ) is because it lowers our immune system, and causes more underlying infections ( dental is huge). When our body has other infections going on, this enters our blood stream and causes systemic joint pain, hugely contributing to our systemic RA condition. I dont understand at all how rheumatologists can say they dont understand the association between our RA compromised immune system and MTX. This can cause underlying infections which spread and compounds our pain.
    • slm222
      slm222 Hala_Ahmed

      Posted

      It IS a weird drug, Hala. I'm sure it works well for a lot of people but it just wasn't doing anything for me, other than making me feel worse. It is my opinion that we know our bodies better than anyone else and if a drug isn't working, then the doctors need to respect that. I'm hoping to find something better but will stay on my Leflunomide until then.
Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.