It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Arthritis Message Board

  • 29 year old, unresponsive to RA meds, any ideas?

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 07-26-2012, 11:45 PM   #1
    atlantao4w
    Newbie
    (female)
     
    atlantao4w's Avatar
     
    Join Date: Jul 2012
    Location: Atlanta, GA, USA
    Posts: 2
    atlantao4w HB User
    Unhappy 29 year old, unresponsive to RA meds, any ideas?

    Hello,

    I'm new here and hope it's ok to start a new post, I've read through several categories and believe the Arthritis forum is the best place to start. Would appreciate any help anyone can offer.

    I'm a "frustrating" case as my new rheumatologist puts it. I was diagnosed with Juvenile Rheumatoid Arthritis when I was 15-16 (1999-2000). Honestly it never seemed like a huge deal, only my feet and wrist bothered me, more noticeable on some days than others. At that point my ANA was positive, not sure about Rheumatoid Factor (doctor has since retired, still trying to find out if I can access medical records). I was put on Vioxx once a day and life was good. While in college I didn't take it regularly, and wasn't regularly seeing a rheumatologist. When Vioxx was pulled off the market, I just didn't take anything and was fine.

    I started feeling run down about 3.5 years ago. In May of 2010 I finally went in to see a rheumatologist. He ran every blood test under the sun - CRP, ANA, Vitamin D, CBC, Rheumatoid Factor, and didn't see anything overwhelming in the results but some joint damage was observed in my wrists via x-ray. I was put on Plaquenil 2x a day. At that point my hands were swollen and stiff and I was just run down. After allowing the Plaquenil to build in my system I still was complaining of stiffness and malaise, and occassionally we'd see a small increase in my C-Reactive Protein levels but nothing else ever raised a red flag (Rheumatoid Factor negative, ANA negative, Vitamin D normal, red and white blodd counts normal, IGG negative). Since my bloodwork didn't seem right, and as he put it "something was going on" with the occasional C-Reactive Protein elevation, he decided to start me on Methotrexate in March of 2011. Turns out I'm highly allergic to MTX resulting in large hive patches that lasted for months after only a couple injections. Steroid injections and steroid dose packs ensued. His idea was to continue the MTX - I disagreed as I was scratching through my skin with the hives and went in search of another rheum.

    During this time I went off all Plaquenil. I was unable to get in with the rheum my primary recommended for 6 months. In September 2011 I finally met with my rheum who has since done everything right. She started me on low dose NSAIDs which we've gradually increased adding new drugs as symptoms persisted. As I'm allergic to MTX and of child bearing years, there's a number of things we can't try. We landed on a cocktail of Sulfazine (increased now to 3000 mg a day) to serve as a MTX substitute, Diclofenac (twice a day), Plaquenil (twice a day), 3-5 mg of Prednisone daily for the last 6 months as well as Humira injections. I started Humira in January or February via bi-weekly injections. As of last month we received insurance approval for weekly injections which tomorrow I'll be 6 weeks into.

    Since late last year my rheumatologist has witnessed nothing irregular on my bloodwork and in addition to ANA, Rheumatoid Factor, CBC, CRP, etc she's done the anti-CCP test twice as well with no positive results or even elevated CRP, my ANA is negative as is my Rheumatoid Factor.

    In the last 11 months, I have lost 15 pounds (which frankly as a 29 year old female I'll take!). I've never been overweight and now am 120 lbs, 5'2". I can no longer walk up a flight of stairs. Working out is out of the question. Luckily my doc has witnessed red, hot to the touch joints. While my hands and feet don't feel great, its nothing like my knees, hips, and elbows. I've had one great period of 10 weeks which started about 2 months after I started Humira, I didn't feel like other 29 year olds but I was walking without hobbling!

    Since then I'm back to a limp from either my hips being on fire or my knees blowing up to twice their typical size. I now possibly have hip bursitis as well as suprapatellar efusion in both knees. I may have Bakers cysts as of a few months ago but I believe they have now ruptured. I'm on a once a month schedule with my rheumatologist and unfortunately I don't seem to be making any positive steps forward and my bloodwork still doesn't show anything. I also when feeling like crap have nightsweats. My joints are most definitely affected by weather (changing barometric pressure) and I'm better than the local meterologist to let you know when rain is coming. I've also noticed a correlation with my period and feeling worse.

    The fatique is unbearable and feeling like I'm dragging around a body laiden with weights is getting old. We've discussed going to Remicade infusions as a next step but that is typically paired with MTX which I can't take. Four weeks ago I had (yet another) max depo-medrol dose injection, a week later we did steroid shots into each knee joint and a week later another steroid shot back into my butt to try to get my hip in check. And yet, nothing continues to show up on my bloodwork or urinalysis. As of Wednesday she did take blood to run Lyme Disease tests again. And I also started yet another medrol dose pack today (thus why I'm awake this late).

    I'm single, live alone and luckily have great friends who help when I'm collapsing after work each night with the small things I can't do around the house (dishwasher emptying, lifting anything more than a few pounds, the lids I can't open, etc etc.). I'm incredibly self-reliant but I'm reaching a point where I need some answers.

    Has anyone else had a situation where it looks like RA but nothing EVER shows in your bloodwork? Did it turn out to be something else? Could this be Infectious Arthritis? (STD negative in all screenings - had a fun convo with my mom when she started googling and found Chlamidyia as a cause of infection arthritis, I'm defintely free and clear of that) Does this sound like it could be late diagnosis Lyme Disease? Apparently, per my mother, I was bitten by a tick once, no rash, no flu symptoms, as a small child living in Connecticut.

    While in college and until last year I had recurrent sinus infections - typically 4-8 a year, made worse when I travelled 100% for work. I had sinus surgery last year and no longer have complaints in that area, don't know if that has any tie in.

    Sorry for the never ending entry. A bit frustrated and searching for answers. My doc thinks she is missing something and after reading these boards the last 2 years I figured it was time for me to post and ask for anyone's input or advice.

    Thanks in advance, and let me know if you need any other info.

     
    Sponsors Lightbulb
       
    Old 07-27-2012, 01:54 AM   #2
    ladybud
    Senior Veteran
    (female)
     
    ladybud's Avatar
     
    Join Date: Jun 2012
    Location: Colorado
    Posts: 6,101
    ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
    Re: 29 year old, unresponsive to RA meds, any ideas?

    As many as 40% of RA patients have neg RA factor and CCP, with other tests being negative as well. If you have symptoms, esp. erosions of joints on Xray, you clinically have RA. It sounds like you just haven't found the right med yet. What you are on is fine, but the new biologics can be particularly helpful, and I would try those, one at a time, until you find one that works. Some people have arthritis that is rather resistant to treatment. You must not be on oral Prednisone. That would be a consideration to take a low dose daily or every other day until a biologic starts working for you. Long term= nasty side effects, but short term it can be a life and joint saver while searching for something to take its place. Good luck! I have seen good results with colchicine daily or twice daily, an old medicine but good one usually used for gout. A potent anti inflammatory well tolerated in low doses.

     
    Old 07-27-2012, 09:48 AM   #3
    atlantao4w
    Newbie
    (female)
     
    atlantao4w's Avatar
     
    Join Date: Jul 2012
    Location: Atlanta, GA, USA
    Posts: 2
    atlantao4w HB User
    Re: 29 year old, unresponsive to RA meds, any ideas?

    Quote:
    Originally Posted by ladybud View Post
    As many as 40% of RA patients have neg RA factor and CCP, with other tests being negative as well. If you have symptoms, esp. erosions of joints on Xray, you clinically have RA. It sounds like you just haven't found the right med yet. What you are on is fine, but the new biologics can be particularly helpful, and I would try those, one at a time, until you find one that works. Some people have arthritis that is rather resistant to treatment. You must not be on oral Prednisone. That would be a consideration to take a low dose daily or every other day until a biologic starts working for you. Long term= nasty side effects, but short term it can be a life and joint saver while searching for something to take its place. Good luck! I have seen good results with colchicine daily or twice daily, an old medicine but good one usually used for gout. A potent anti inflammatory well tolerated in low doses.
    Thanks so much for your response! I actually have been taking prednisone daily for about the past 6 months, as well as doing intermittent steroid shots and steroid dose packs as needed. I've been on Humira for 6 months now and for the past 6 weeks have been doing weekly injections. Since I can't take MTX that eliminates a lot of biologics that need MTX paired with it.

    So as of now I'm on 3000 mg of sulfazine daily, 2 Plaquenil daily, 2 Diclofenac (NSAID) daily, weekly Humira and daily 3-5 mg of Prednisone. I'm currently on day 2 of a steroid dose pack as well.

    Will keep searching for the right drug combo! Just didn't know if anyone else had been through this type of a RA course before.

     
    Old 07-31-2012, 09:29 AM   #4
    Moldova
    Senior Veteran
    (female)
     
    Moldova's Avatar
     
    Join Date: Dec 2006
    Location: NYC
    Posts: 3,714
    Moldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB User
    Re: 29 year old, unresponsive to RA meds, any ideas?

    Hello and welcome dear heart!

    I read your post with tears in my eyes - for some time it was about my life too. I was diagnosed with JRA at age 12 and also never thought much about it. Although I was put right the way on preventive drugs (to prevent flairs, not to treat. At that time in Europe they didn't have much of this type treatments) and dealt with it well. I was active, gym every day, happy life and thought this will always be the case.
    I start to develop harsh symptoms by age 30. It was really bad ordeal with DRs since my blood work wouldn't show much to diagnose me with adult RA, until I met my wonderful and knowledgeable RA Dr who told me that I have very advanced RA only b/c I wasn't diagnosed on time. Despite the fact that my blood work was negative (just some C-reactive up or Sed rate up, rather than that it wasn't a strong suggestion it's RA), she said it happens often when patients show all aggression of the disease, blood work may come back negative for some time.
    By that time I developed "RA Lung" with irreversible damages of the heart, not to mention joints, soft tissue, cartridge, etc.

    I was on Viox and Celebrex, but for Fibromyologa, not RA.
    I will tell you something about a young woman who I used to work with. She had symptoms so close to what you have nowadays. She was so cute, full of life and all of a sudden, she could hardly come to work, she was missing days of work, or sleep at her table. We knew something is wrong and insisted her to go to see her DR. You know how some people are, they didn't care that she is sick, they needed work to be done. I was her manager, I am a mom and knew something is wrong with her. She also lived alone, never saw a DR in her life and was scared. Guess what? I made an app for her and took her there. Her first Dr was a jerk; I didn't blame her to feel disappointed. Only 3rd DR sends her to see RA Dr. And here they started: MTX, Humira and so on.
    She was hoping it will continue working and she will feel better. All her joints were red and hot, she hardly moved. Finally I suggested her to go and see my DR in NYC. Outcome was unbelievable!
    My RA dr takes her off all RA drugs and checks her for Lyme disease. She told the girl that very hard to diagnose Lyme by testing, most patient's blood doesn't show anything, meanwhile they have Lyme.
    Of course blood comes back showing inflammation and nothing else.
    My RA gives her a name of the DR who treats patient whose symptoms suggest Lyme disease. She puts her on certain antibiotics and from day 3, my girl start to blossom. I am not joking; I saw smile on her face first time in month, she even went back to gym in 3 month after starting treatment. She was on antibiotics for the whole year on and off. She still gets very weak once in a while, but nothing like she was before.

    I read that so many doctors go only by what blood work show; big mistake. I am not a DR, but if my previous doctors wouldn't go by book only, I wouldn't be in such poor place I am now with damages which cant be fixed...
    You have to go and see as many doctors as you need to get right diagnoses. While RA treatments can make you feel very weak and sick, make sure you don't have something else, more serious. I would suggest you to see Lyme disease specialist, check whatever you need to get to the bottom of your problems. I also know that so many MS and RA misdiagnoses, doctors keep patients for years on treatments for these conditions while patients don't have them but have something else. My son's young teacher was treated for RA for 3 years while she had ovarian cancer and died from it soon after being diagnosed too late.
    I do know that Clamidia or any STD may cause a lot of similar symptoms you have if not treated for years and becomes chronic.

    While RA definitely makes you weak, treatments makes you feel worse as well; but what you writing here makes me feel you may have more serious issues for some reason.
    Another thing concerned me; I never heard the DR suggest to continue the drug which gave his patient hives and reaction. Are you kidding me? I know what this reaction means. I had hives which lasted for 2 month and I itched so bad, it was bleeding! If my Dr do that, it would be the last time I saw him, I mean it.

    Be careful, your story touched me a lot. You are so young sweet heart, you need to build health now, not to be so sick.

    Hugs,
    Moldova

     
    Old 08-04-2012, 08:25 AM   #5
    ladybud
    Senior Veteran
    (female)
     
    ladybud's Avatar
     
    Join Date: Jun 2012
    Location: Colorado
    Posts: 6,101
    ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
    Re: 29 year old, unresponsive to RA meds, any ideas?

    I too have lupus and RA, RA factor neg, ANA +, but regardless of what shows now in your blood, you need treatment aimed at your clinical picture and severity of symptoms. There are biologics that do not require MTX, one is given subcutaneously (Simponi) rather than IV, and I would pursue those because of the severity of your disease. I would give up on trying to "prove" this thru blood work. Your disease is proof enough, and it just adds to the frustration of being so sick, adds time effort and expense to your health care, and may never show anything. As long as you have a Dr who will work with you to find relief and get this under control, you are doing as well as you can. Remicade has been very good for a lot of people with RA. I wish you the best and hope you get great results so you can live like a 29 year old should!

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Help with psoriatic arthritis, Sacroiliitis, and pain meds please! absmom Arthritis 18 06-15-2011 01:16 PM
    suddenly arthritic finger, looking for ideas SOTM Arthritis 7 03-03-2011 06:16 PM
    Symmetric pain in multiple joints- any ideas? kate511 Arthritis 4 02-12-2010 12:36 AM
    ? about RA+ man trying to concieve and RA meds... jeff'sdawn Arthritis 2 09-04-2008 11:16 PM

    Tags
    lyme disease, misdiagnosed, rheumatoid arthritis, seronegative



    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 04:07 AM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!