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My journey and struggle with RA

Diagnosed in 2004, woke up one morning with what felt like a broken very swollen wrist. Since than my life has been nothing but complicated to say the least. I went through 7 years of intensive infertility treatments, 7 surgeries, and many, many and still looking unsuccessful medication combinations.

I am still looking for help. I’ve tried Methotrexate pills and injections, Humira, Enbrel, Cimzia, suffered these with terrible results, increased pain etc. I have been on the only (remotely successful) treatment Prednisone with Leflunomide (for the past 10 years). Prednisone dose has been as high as 80 mg (after the miracle birth of my son in 2006. This high dose (luckily only for 2 weeks) caused me to leave my very precious new born son in my car (had no clue he was with me, just forgot). I was arrested, and suffered so much anxiety, embarrassment and heartbreak. I was arrested (of course), but I really had no clue just what an effect this medication was having on me.

My doctor immediately reduced my dose but I will carry the heartache of what happened in my heart forever. Needless to say, my goal is to be off the Prednisone completely but nothing else works for my disease. I am down to taking 8 mg. of Prednisone along with 20 mg of Leflunomide and every 4 weeks an infusion of Gammaguard.  Just recently (my doctor still trying to remove the Prednisone dose) gave me Sulfzidyme (Sulfa drug) which resulted in an increase/flare of all my RA symptoms. So, now I can’t take that.

I was just wondering if there is anyone else out there like me…What are others with RA taking and what is working?
I have 2 small boys (age 8 and 5) and really need something that works. I’ve had a cast on my foot now (on and off) for the past 2 years as my bones break easily due to the steriods. My entire family (brother, sister, nieces, and nephews) have totally disconnected from me and my husband. (Not 100% sure why exactly) but part of it I know is due to the personality changes I have gone through due to the side effects of the steriods. Sadly, I can not get anyone of them to tell me what I did or why as none of them will speak to me or acknowledge my letters so I’ve just basically given up. Heartbreaking because I need them so much. I know that my brother says I cause too much “drama”.

I am 48 years old and have a walker, scooter, no job, and just want my life back. Anyone?????? offer some success stories???? tips????

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Comments

  • Rachelle
    5 years ago

    Hi Patricia,
    I am 30 and have a rare lung disease and am currently being tested for RA as well. My heart goes out to you as I was on a high dose of prednisone along with another antibiotic that both happened to have the rare side effect of psychosis…by the time I got to a psychiatrist that knew what was going on, I hadn’t slept for 5 days straight and he said 10-12 more hours and I would have been dead. He also told my husband and family that I was so far gone, that he didn’t know if I would come out of it or if I would have permanent side effects. Thankfully I recovered completely, but there are little things I notice and I have also had another psychosis episode after having an inner ear injury caused by another antibiotic trying to treat my lung disease. The thought of having another progressive disease is intimidating, but I’m thankful I was led to this site by another woman who also has my rare lung disease (Primary Ciliary Dyskinesia or PCD) and an aggressive form of RA. Because of my severe reactions to a bunch of different meds since then, I am very limited on what I can take, so I can understand the frustration of not having something that works, albeit for a different reason. Thank you for sharing your story and if you’re interested, I have shared a lot more of my story on my blog, http://www.rachelleandjordan.blogspot.com. Hope you find something that gives you some relief soon!

  • Damian
    5 years ago

    Hi Patricia – Thanks for having the courage to post your story. As you can read here your pain, frustration & daily struggle is familiar to us all. I agree 100% with Mariah re looking at second opinions with 1 rheumatologist & 2 your GP. I’ve changed both & found the success of change. My GP was of 20 yrs & rheumatologist of 10 yrs. Again Mariah is right as there are many different combinations of medications, unfortunately its trial an error to find what works best for you. I’ve been on Prednisone max dose of 80mg along with 20 mg of Leflunomide daily.
    After i spent many months living on the chemotherapy ward, I realized that my my RA is no where as bad as others with immediate life threatening disease’s.
    I’ve been a volunteer working with a number of organizations and found getting out there helping others in turn has helped me.
    Good luck & may the force be with you 🙂
    Damian

  • Mariah Z. Leach moderator
    5 years ago

    Hi Patricia – Thank you so much for taking the time to share your story! I am so sorry to hear that the last few years of your life have been full of so much struggle. Unfortunately it sometimes can take a frustrating amount of time to find a combination of treatments that works – though it seems you have been more than patient and that must be very difficult for you. And I know from personal experience that it is much more difficult to manage a chronic health issue and be a mom at the same time! So my heart goes out to you!

    My best advice is to make sure you are seeing a good rheumatologist. If you have been seeing the same doctor all this time without finding a treatment that helps it may be time to see a new doctor for a second opinion. I see that you have tried some biologics – but there are still other options out there that might work for you! And new treatments are being developed all the time.

    Hang in there and remember that we are here to support you!
    ~Mariah~

  • Patricia Darstein author
    5 years ago

    Thank you so much for your input. I have thought about a second opinion but there are few Rheumatologist in my area and I am honestly afraid to start all over again as I’ve been this doctor and formed such a solid relationship at this point. It’s been over 10 years. Guess I just have to keep trying different things and hang in there. Unbelievable the amount of embarrassment I have suffered through all this.

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