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The path get's a bit clearer!

tcphd

Hello -

I have posted here a couple of times on my diagnostic journey. Originally, I was told RA, then a second opinion didn't confirm the RA diagnosis, and the Doc kept looking for several things, thinking possible peripheral ankylosing spondylitis. Well, after a LOT of ultrasounds and a few more appointments, my rheumy thinks it is Calcium Pyrophosphate Deposition Disease (CPPD). I had never heard of such a thing, but I am in the midst of researching everything I can.

If anyone has experienced chronic CPPD (sometimes called psuedo-rheumatoid arthritis and often misdiagnosed as RA), I would love to hear more about it.

Rheumy wants to put me on Meloxicam (Celobrex hasn't helped much and I can't take ibuprofen because it is too harsh on my stomach) and Plaquenil. If you have expereince or information about Meloxicam or Plaquenil, I would love to learn more!

Thank you so much for any insights you can provide. I am finally feeling a bit hopeful that we will get to the bottom of this pain!

tcphd

Tamara Haag Moderator & Contributor
Hi tcphd,

I've followed your diagnostic journey through some of your posts and questions, and I must say, you have had an unusual story, so thank you very much for sharing it! This is the first I've heard of CPPD, so you are educating all of us!

As far as the meds, I too had absolutely no luck with Celebrex, so you're not alone there. I currently take Plaquenil in addition to Orencia infusions. I have not had any significant side effects from it. I do have to have my eyes checked by an ophthalmologist due to the possibility of toxicity in the eyes from the drug. However, he has assured me and echoed the research I've done that Plaquenil-related eye toxicity generally takes place with high dosages and/or long-term (7 years+) use of the drug. Of course, it is still concerning, so while I've decided the pros outweigh the potential cons of taking the drug for my own situation, I do stay on top of those screening appointments. I've written about it here: https://rheumatoidarthritis.net/living/eyes-on-the-prize/.

Thanks again for sharing your updates with us. I hope you can continue to find answers and hopefully some relief from the pain!

Wishing you all the best,
Tamara
tcphd Member
Thanks Tamara. I have been doing a ton of research and found that it is actually common to be mis-diagnosed with RA before a diagnosis of CPPD. It appears as if I have the "chronic" version that looks very similar to RA (even called pseudo-RA at times). The path of treatment is not as clear and still relatively anecdotal, but it looks like I need to get started trying things immediately in the hopes of preventing joint damage and more pain.

https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Calcium-Pyrophosphate-Deposition-CPPD

http://www.rheumatologynetwork.com/gout/primer-pseudogout

Thank you for the link about Paquenil. You put in to words exactly how I feel. Sophie's choice indeed!
This site continues to be very helpful and I can't thank you enough for the quality work that you all do.

Have a great weekend,

Tcphd
Richard Faust Community Admin
Hi tcphd. Sorry you are having these difficulties with the diagnostic process. If your doctor is in favor of starting treatment to avoid damage and condition advancement. If your doctor wants to use plaquenil this can be especially true, as it can take 1 to 2 months to start working and 6 to take full effect. This article from one of our contributors, while dealing with RA, may still be applicable, as it urges early treatment: https://rheumatoidarthritis.net/living/treat-it-please/#. Wishing you the best. Richard (RheumatoidArthritis.net Team)
Tamara Haag Moderator & Contributor
Hi tcphd,

I'm so glad this site and our articles have been a help to you. It always makes my day to hear that someone feels supported via our site. Again, all that I know about CPPD is what I've learned from you (thanks again for sharing!), but if they believe the medications that decrease RA symptoms may also decrease the symptoms of "psuedo-RA", I can say that medications that are effective for me have made the difference between a good quality of life and a pretty miserable existence. Before treatment and between treatments (Enbrel worked great for me for seven years and then stopped working, and we had to find something else that worked) I was unable to work and was in severe pain on a daily basis. Medical treatment (along with reducing stress in my life, eating a healthy diet, and getting enough exercise) has allowed me to be a working mom with a social life - three things I didn't know if they could be possible before treatment. Of course everyone's journey is different, and some people have a harder time finding drugs that work for them than others. I do hope that you are able to find some relief soon. I welcome you to continue updating us as you move forward.

Wishing you all the best,
Tamara