Jen's RA Story

By CommunityMemberf3f560

1 min read

I was diagnosed shortly after a liver transplant. The transplant limits the treatment options that I have. I am not allowed to take anti-inflammatories, supplements, or methotrexate. I have failed Humira, Orencia, Enbrel and am stuck on hydroxychloroquine (which isn't working). I had reactions to all steroids and Remicade.

I have tried to get a pain management referral and it was like I asked for illicit drugs. I am scheduled with my third rheumatologist in 7 years, but I don't see him until December. The other two left the area. I am changing hospitals this time. I am only allowed low dose acetaminophen for pain, but it doesn't work and it triggers a migraine when I take it. I am also dealing with chronic migraines at this time.

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Richard Faust Community Admin
Hi Jen (<inline-mention username="CommunityMemberf3f560" user-id="8898604"/>). It certainly sounds like you have been dealing with a lot and your frustration is more than understandable. I know that organ transplants can really complicate treatment for autoimmune conditions. I noticed that you mentioned Humira, Enbrel, and Orencia. Has anyone mentioned the interleuken-6 or 1 inhibitors or JAK inhibitors? I mention these because they inhibit different inflammatory molecules than the ones you tried and may yield different, hopefully better, results. Of course, only a doctor could tell you if they may be a fit for your case, but I want to share this before you have your appointment with the new doctor. Also, I know some in the community have had success with getting put on a cancellation list to get an earlier appointment. I don't know if this is possible with your new doctor, but you could ask the office. Hoping you can get some answers and relief. Best, Richard (Team Member)
CommunityMemberf3f560 Member
Hi Richard, I believe those may have been in the list my last Rheumatologist sent me a week before she left. My transplant team asked me if she could narrow the list down to one or two treatments. At that time I didn't think there was a point in asking because she wouldn't have been able to prescribe anything for me anyway. Hopefully my new doctor will have some ideas for me. Thanks. Jen
Daniel Malito Moderator & Contributor
<inline-mention username="CommunityMemberf3f560" user-id="8898604"/> I get what you mean - right now the state of pain treatment in this country is awful. It's politicized to the point of hurting patients! If possible, what helped me, was to see a pain specialist who is also an actual anesthesiologist. This gave the doctor a gravitas and background that was much harder for people to say that it was just a drug-pusher in a white coat. I don't know if that is an option, but if it is, give it a shot. Either way, remember, not only is the abuse % of actual pain patients something incredibly low like 1-2%, but wanting to get treatment for your pain does not make you an addict, a drug seeker, or a bad person - it just means you want to get treatment for your pain like anyone else. Let us know if there's anything we can do to help! Keep on keepin' on, DPM
1. CommunityMemberf3f560 Member
 <inline-mention username="christine.laaksonen" user-id="3148879"/> no, I didn't. It went right over everyone's heads
2. christine.laaksonen Community Admin
 <inline-mention username="CommunityMemberf3f560" user-id="8898604"/> Oh, Jen, I'm so sorry! How frustrating and infuriating that the doctor didn't listen to you or provide you with a referral. You deserve to be getting relief! (You might appreciate this article one of our advocates wrote about medical gaslighting, <a href='https://rheumatoidarthritis.net/living/medical-gaslighting' target='_blank'>https://rheumatoidarthritis.net/living/medical-gaslighting</a>.) I hope that you can keep at it and at least one of our doctors will listen to you and provide you with that referral. Sending you gentle hugs! -- Warmly, Christine (Team Member)
CommunityMemberf3f560 Member
<inline-mention username="christine.laaksonen" user-id="3148879"/> I just heard from a nurse in my former Rheumatologist's office because I called them at the beginning of the month about meds. The doctor who is there suggested medication that I can't take (N SAID) and wants me to have labs drawn. Suggested going back to my primary care for pain management 
1. christine.laaksonen Community Admin
 <inline-mention username="CommunityMemberf3f560" user-id="8898604"/> that sounds incredibly frustrating, being passed around and ignored. I hope that your transplant provider will be able to get you the referral, and that the pain management specialist is able to help you get some relief! Please don't hesitate to reach out here anytime, and, if you're comfortable, keep us posted with how you are and what you find out. Sending you gentle hugs. -- Warmly, Christine (Team Member)
2. CommunityMemberf3f560 Member
 <inline-mention username="christine.laaksonen" user-id="3148879"/> thank you very much.