Slammed: Left at the Plate

By saundragk1

1 min read

Diagnosed at 13 with Juvenile Arthritis which never went away. 59 years later, I was also diagnosed with RA. Now I'm on hydroxychloroquine, have fibromyalgia, fuzzy vision, frozen shoulders and not much hope. My RA doctor seems to feel he's done what he could. Suggestions?

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Alesandra Bevilacqua Community Admin
<inline-mention user-id="3232779" username="saundragk1"/> thank you for sharing with us! I'm disheartened you're managing so much and your doctor feels like he's done everything possible. Have you considered getting a second opinion from another doctor or rheumatologist? Some folks do find it to be helpful, if it's available to them. Also, have you had a discussion with your doctor(s) around biologics or JAK inhibitors for treatment? Perhaps there is another medication out there for you that would bring you some relief. I'm hopeful some other community members will chime in with their own experiences or perhaps give you some insight. Hang in there! Wishing you a restful evening. -Alesandra (RheumatoidArthritis.net Team)
1. saundragk1 Member
 Alexandra, Thank you for responding to my plea for understanding. I've felt alone on this journey for a long time, so your words gave me comfort. When the Corona Virus cools down...I will get a second opinion, especially since Plaquenel seems to be affecting my eyes. The rheumatologist recommended pain management as one route to follow but I'm afraid of potentially addictive medication.
Richard Faust Community Admin
Hi saundragk1. Sorry you have been struggling. You certainly are not alone here with JIA. We have several contributors diagnosed very young. One of them is my wife, Kelly Mack, who was diagnosed at two, has had it for over forty years, and has used a wheelchair since her late teens. You mention being on hydroxychloroquine and having vision issues. Does your doctor have you get your eyes checked regularly? Vision issues are a major side effect of this medication. You can read more here: <a href='https://rheumatoidarthritis.net/treatment/hydroxychloroquine' target='_blank'>https://rheumatoidarthritis.net/treatment/hydroxychloroquine/</a>. I also want to note that treatments for RA have advanced quite a bit in recent years, with many new drugs coming to market. In fact, Kelly wrote this article on the evolution of RA treatments: <a href='https://rheumatoidarthritis.net/living/the-evolution-of-ra-treatments' target='_blank'>https://rheumatoidarthritis.net/living/the-evolution-of-ra-treatments/</a>. In addition, this article gives an overview of current medications available for RA: <a href='https://rheumatoidarthritis.net/treatment/drugs-and-prescription-medications-for-ra' target='_blank'>https://rheumatoidarthritis.net/treatment/drugs-and-prescription-medications-for-ra/</a>. If you feel your current doctor is offering no options, please don't hesitate to seek a second opinion. Hoping you get some relief soon. Best, Richard (RheumatoidArthritis.net Team)
1. saundragk1 Member
 Richard, Thank you for your kind and considerate reply to my reach out - it means a lot to me. I'm devouring all the information I can put my hands on to learn more about this condition while deeply regretting the years not one of my many doctors suspected my plethora of symptoms were screaming RA. I believe only those who are experiencing this disease or have a loved one, like you, who is, can understand the anger and despair I feel. Putting a label on it this late in the game feels too little and too late, so I'm grateful for this community's support. When the Corona Virus dies down I will get a second opinion. Fused shoulder joints and blurry vision are no fun. Saundra Kelley, Author and Storyteller
shoconnor Member
I have had RA for 25 years and I am 57. Your doctor should take you through a sampling of medications to find what works for you. It sometimes takes years to figure out the right combination. I have been using Enbrel and Methotrexate for approximately 12 years and feel great.
gma2 Member
It’s never too late! We are the same age and I began experiencing JRA about the age of 13 too but I never saw a doctor about it until I was 27 when the diagnosis was arthritis. Not even JRA or RA as I have now. I had Ulcerative Colitis for 20 years and had a continent ileostomy done at the age of 40. It wasn’t until my primary care doctor sent me to a brilliant Rheumatologist about 2006. They began injections in both knees. Later the course of treatment was Methotrexate which I couldn’t take followed by Humira weekly. It helped a lot but was immune to it after about 2 years and was prescribed Enbrel which is a great product for me. In addition I take generics for Arava, Lyrica, Ambien, as well as hydroxychloroquine and cyclobenzoprine. Please don’t give up. Talk to a Rheumatologist if you have one and if you don’t have your doctor refer you to one. Good luck.
saundragk1 Member
I'm not certain that my doctors knew about juvenile arthritis back then. I recall a severely swollen leg, high temperatures with aches and pains that never went away. Was it Juvenile RA? I wonder. What I do know is eventually arthritis claimed most of my joints and now my shoulders have rubbed against one another until they are fused. The rheumatologist recommends shoulder replacement, the prospect of which I find frightening.
fyrgal17 Member
Saundragk1 don't give up! As my rheumy has told me many times over the course of my RA dx (since 199😎 " there are lots of medicines out there to choose from. We'll find one that works!" If your doc still says nothing else can be done look for a new doc. Your health is too important for YOU to not be feeling good. Hugs!