Hi everyone, it's been a while since I last posted. A lot has happened. I came off MXT in the end after 3 months of hell and that was over a year ago. My anti ccp was 281 , RF 40 and esr, Crp all normal back in July 2016 and in march this year it's now 97.5., Crp and esr still normal , didn't do rf for some reason. Most of my pains have gone bar my hands that are still inflammed, tendons not joints and no swelling. I am controlling with naproxen when needed.
I am wondering if anyone can shed light on this. I had one rheumy tell me that if my anti ccp went down i would be defying medical science and I saw another the other day and she told me anti ccp count means nothing really, you need to go back on MXT. Talk about mess with my head.. would love to here your opinions . Thanks in advance
If the MTX was making you feel bad there are other DMARD options that could be offered which may suit you better. (NRAS or arthritis research website have lists of drug options). Everybody reacts differently to this disease and we cannot see into the future so therefore it is very difficult to decide whether the drugs are vital or not. Unfortunately any damage done to joints is not reversible. I know for me that drugs are vital as I cannot function without them but this is not the same for everyone. Farm
I have never heard of cup going down. Do you get copies of all your bloods, tests etc ? I have not had mine repeated. Not CCP or RF. interesting situation. The CCP is 95% exclusive to rheumatic disease. It is what is referred to now when seropositive.
I do, I have all my medical records. I'm having another anti ccp done today privately so I can see if it's risen or dropped completely. I will then go and see a new rheumy for a third opinion and go with the majority.
Is the variability in affect simply amazing or is there a reason for this wide a disparity? Are we dealing with one disease or several different diseases that share certain traits?
I spend all my time on this site because of the rich diversity. It is a little sad that I find information in all area except were it should be, health care. As much as I love my Rheumatologist, the source of my knowledge has been the net not my doctors. In fact I am the lead in my own health care. I will determine for myself what drugs or treatments I will accept. I have also made it clear that I will not consider surgical options. I believe that the course of treatment can only be decided by the patient. Fortunately, my doctors are all open to my approach. I have more than proven my knowledge of all tests, drugs, treatments . I have seven years post graduate studies. My previous occupation was working with dualy diagnosed children. I have many years experience in that branch of health care. Genetics in particular. But even doctors with a career in Rheumatology remain baffled.
I repeat my contention than what is lacking is statistical analysis. Researchers should be pouring over sites that are used by patients. In the past year I have begun to notice distinct patterns emerging from apparent chaos. Despite the many differences we have there are many similarities as well and perhaps in identifying those patterns we could identify triggers. What sets off a flare or triggers onset. Prevention would be the key as once damage is done it cannot be undone.
I have been a Financial Planner for twenty years but started as a Developmental Therapist. I also owned a pet supply store specializing in raw, organic, holoistic products. All paths have proven beneficial in adjusting to chronic illness. Uniquely prepared for the chaos lol
Thank you all for contributing. This site has become my lifeline . With those who have years of experience blazing the path for us. Thank you for your bravery. Being a lab experiment is frightening.
I'm not the norm. Poisoned by faulty Silicone implants. I'm not the only lady going through this. I have a support group with hundreds of women on there being diagnosed with autoimmune diseases, included RA. My rheumy won't even take any of the findings into concideration. Yes maybe the faulty implants has caused me an autoimmune disease. But since the problem was removed - the anti ccp titre dropped by just under 200 points in 6/7 months!! Coincidence?!? I await my results next week to continue piecing the puzzle together. Today I have pain in one wrist even though I'm on naproxen, this brings me down and makes me worry and think maybe I should just take the drugs. A few more days and hopefully I will have a little more understanding and direction.
I strongly recommend you at least try them. If it is early you may get a nice long remission. DMARD's are the only drugs designed to prevent joint damage. I was diagnosed July 2015 but have had RD for at least ten years.
The delay in treatment and a very long list of allergies and drug intolerance has been adding up. But that is me. We all have our own response. I have almost reached two year mark so for me , at least for now, I am done. The only drug will be a cannabis vaporizer. No more Biologic she, DMARDs etc.
I also am severely allergic to Napraxen, Sulla, Lefludamide, etc... I have been on 14 drugs so far and have suffered through endless reactions. I stopped all drugs a few months ago and found I cope much better off drugs. Now that may change .
You might just get lucky right out of the gate, many do. Do not focus on side affects. If they are a problem adjustments will be made. It takes time to adjust to this new reality so deep breath. Remember it will be different for each individual. Hang Tuff
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