Medication frustration!

I am thirty-four years old and have had RA for almost four years now. I do not know anyone who also has RA and I have surfed different sites/blogs/supports but this is the only one I’ve joined/spoke so please bare with me. I would like to share my story.
Four years ago I woke up in the middle of the night with my shoulder in so much pain I was crying. There was nothing I could do to stop the pain every movement I made was excruciating. The excruciating pain passed within a couple of hours but my shoulder was still extremely uncomfortable sore and tender with very limited mobility. A family member suggested that it might be a bone spur. Then it went away and I didn’t give it any more thought. Shortly after I became pregnant with my son within a week or two after delivering my son, I noticed an ache in my DOMINANT right hand. It was the middle of the night between feedings and my hand had become visibly swollen and drawn up with that same excruciating pain. Then, baby starts to cry and I am unable to lift my newborn out of his side sleeper in order to nurse.
This continues to be my life with my newborn baby. Back and forth between my hands and shoulders. All I could do was cry and go to Dr. Google searching for an answer. Thankfully I am still having check ups with my OB and every visit I am telling the Dr. of another flare (of course not known at the time). He prescribed me some medicine told me he thought possibly rheumatoid arthritis and referred me to my now rheumatologist whom I love.
After my first few visits not having the RA factor she diagnosed me with RA. I had logged all of the flares and how long they lasted from the time it started to the time I finally got to see her. Apparently while pregnant women go in to remission and after delivery it comes back with a vengeance. Obviously I then realized the problems with my shoulder those many months ago was the first flare.
I’m going to throw in a little bit of back story, in 2001 I was diagnosed with ITP and received large doses of steroids. Having large doses both in the hospital and out of the hospital all the while trying to taper down hoping my platelet count would stay up. Of course when I would be almost off my count would go back down. So my hematologist made the decision to remove my spleen and voilà! I went in remission and have had no problems since. But in response to all the steroids I now have avascular necrosis in my left hip. Therefore, steroids and me = bad. We try avoiding steroids as much as possible but it seems as though I cannot ever get completely off of them or if I do it isn’t for long.
So back to me and my rheumy. I’m going to go through this quick since everyone here knows what I’m talking about; my first treatment plan as it is probably for everyone was Plaquenil, then adding Methotrexate, adding Humira. My body did not like the humira, next came Enbrel and couldn’t do it either. We then went back to just the hydroxy and changed to injection Methotrexate. Next came Enbrel, body said no. I then started having major vision problems so we took out the Plaquenil and Methotrexate and went to opthalmologist, I have small/early cataracts; not Plaquenil related but steroid induced. So we try Orencia, that was a no. Symponi, that was a no. Next comes Sulfasalazine and Leflunomide, YES! Finally!! I finally found a combination that kept me from having flares and kept me from feeling so much like I have RA. During all of this I am also trying to find something for all the nerve damage in my legs, Gabapentin=no and Lyrica=lifesaver!
Here I am with my last refills of Sulfasalazine and Leflunomide done this past November and I get several bad labs showing my liver proteins too high. Frown. Finally, I found something that worked and it is doing too much damage too quickly. I get off both of those and start back on my Prednisone but at higher dose than usual due to flares and no other RA med. I gain 40 pounds; I’m assuming because of the Lyrica, Cymbalta and Pred. Love it! We are now in the present day and I now have almost two weeks of Xeljanz in my system. I’m crossing my fingers like with every other medicine. I get so frustrated. I get so depressed and woe is me until I remind myself or read others shared stories and I understand it could be so much worse. It’s hard not to get down when my 2 wonderful children are begging me for things that I can’t do at the time or I get behind on my housework due to fatigue or a flare. Or my poor kids watch me cry and moan in pain during the first hours of a flare. My mother tells me I shouldn’t let them see me cry but I am a stay at home mom and when it is just us, what am I to do? She doesn’t understand the pain.
I could keep going on and on but I believe I have almost written a novel…sorry. I have no one around me that understands at all and it is nice to feel like I’m speaking and listening to people that share the same ups and downs. Hope this all makes sense and I wasn’t all over the place.

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Comments

View Comments (4)
  • ssotherden
    3 years ago

    Wow, I just turned 30 and was recently diagnosed after giving birth. I kept telling my OB something was wrong but they brushed it off as ‘hormones’. Getting my baby up in the mornings is one of the most difficult and painful things for me. It breaks my heart. I’ve been on plaquenil for almost 2 months now and haven’t really noticed any help. I can’t tolerate the steroids, I was ruining my relationship and staying angry at my kids. I’m really scared about all the medicine side effects but it’s amazing to hear how many woman have been down my road. Hugs!

  • JordynAshleyH author
    3 years ago

    I’m sorry you’re having to go through it, it is heartbreaking. Hopefully they will figure out a cocktail for you soon! I hear you on the steroids, I have had countless times I’ve had to apologize for my “roidrage!”

  • JordynAshleyH author
    3 years ago

    Thank you and thank you for the article links!

  • Kelly Dabel moderator
    3 years ago

    Hi JordynH, Thanks so much for sharing your story! You have been through so much. I know others in our community will be encouraged by what you’ve shared. I’m glad that our site is helpful to you and reminds you that you are not alone here! Sending positive thoughts your way that Xeljanz agrees with you and gives you some good results. In addition to speaking with your doctor, this article on Xeljanz may be helpful to you: https://rheumatoidarthritis.net/treatment/xeljanz-reviews-how-well-does-it-work/
    Also this article: Parenting Amidst The Pain: https://rheumatoidarthritis.net/living/parenting-amidst-the-pain/. Please stop by anytime and join in our Facebook page discussion as well. We’re here to support you and answer your questions. Thank you again for sharing so genuinely from your heart. We really appreciate you being part of our community! Kelly Dabel, RD RheumatoidArthritis.net Team

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