Chondrocalcinosis CPPD

Does anyone have this disease? Looking to find anyone interested in having a support group. How do you deal with the constant pain? Need someone to talk to who knows what it is like.

Edited August 6, 2009 at 8:57 am

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I was diagnosed with CPPD deposition disease recently. It manifested as a severe pain in my left knee. I went to an emergency room where they withdrew fluid and it felt much better but not completely right. Last week I had a appointment with a rhuementologist who gave me a shot of cortisone in my knee and it feels almost back to normal. I had a similar attack 15 years ago.

I also have severe pain in my lower back which I feel is also likely due to CPPD crystals depositing in the spine. 15 years ago I had a similar attack and I was told that CPPD could not manifest in the spine. Now I am not so sure as I have found several references to CPPD crystals in spinal vertebra on the internet. I have not sought any medical help with regard to the back pain because in my experience, there is little the medical field has to offer regarding back problems unless the symptoms are very clear. CPPD is apparently not an accepted cause for back pain. Last time in desperation I ended up at a chiropractor who wanted me to come in for spinal manipulation and ultrasound messages three times a week for months. He had no idea of CPPD - he also x rayed my spine and could see nothing wrong.

I am home from work today because of the pain in my back. I am contemplating trying to reach the rhuementologist who treated my knee - but it is impossible to reach any medical specialist without an appointment. (There emails are not publicly available either.) My follow up appointment is in 3 weeks so I will just wait, I guess.

My diagnosis of CPPD came out of the blue. It is not common but it is not unknown either. In my experience few doctors know of it, and unless they can actually withdraw a sample of fluid and identify the CPPD crystals they are very skeptical of it being the cause of any discomfort. My back problem last time was never diagnosed - eventually it cured itself. (The crystals spontaneously dissolved?) I am hoping for the same this time but the pain is worse and it shows little signs yet of letting up.

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I am so happy that you responded. I have been searching for years for people who have this, I was wondering just how rare this disease really is. With me it started in my hands then feet, knees, hips and yes the back also. I was originally diagnosed with rheumatoid arthritis and was getting treatment for that and nothing seemed to have been giving me any relieve from the pain. The other patients I talked with during the treatments all seem to improve but me. It took over two years to see a specialist at a teaching hospital in Milwaukee, WI , who diagnosed me with CPPD. I am currently taking 80mg of Methadone daily to control the pain. This is just to make it tolerable. I don’t know what it is like to be pain free. The fatigue is another story. I am only 57 but I feel 87. It seems like there is no real information, studies or help out there for people like us. Yes, depression is also a large part of my life because of this. There is a part of me that thinks maybe I had some sort of other disease, but at this time I do not have health insurance to pursue the search for help further. I had to retire from my job because of this, I am under Social Security disability, but Medicare does not start for another six months. Cobra plan was way too expensive, $1300.00 a month and my wife lost her job due to the economic situation. She finally found a job after 6 months at a much lower wage and insurance coverage will not start until she has been there for ninety days. I know I must sound very negative, and I am sorry. We need to be more positive, there are a lot of people out there in much worse shape that use and I hope you are doing much better than I, but I am very happy to have finally found someone that I can talk to that is in the same boat. Someone who can understand the pain and aggravation that we are in. For that ,I am extremely grateful. Have you found any support groups or others that you can share your thoughts with? I would like to start a group, but as of now, you and I are all I have found. So if you are interested in forming a group or would just like to talk to me I would be more than happy to be that person. If not I understand. We could also share any information about the disease to each other to help us understand what is happening to us.
Gary

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I was recently Dx. with CPPD. Have suffered with this for years an gone "mis-diagnosed", or Dx. with gout or osteo arthritis. I had my thyroid removed in 2000, followed by breast Ca which required chemo and rad. Things seemed to go down hill after that. I feel the Radiation Rx. has had some impact. Two weeks ago my right metatarsal joint and right knee was so inflammed with severe pain I could not walk. I was started on Colchicine .6mg two bid and this has helped with the severe pain. I go back for more blood wk to R/O hemochomotosis next week. Would love to chat with more folks about their Rx. ruth

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Hi Irishman, I posted a reply on 7-25-09 but since then see there have been no other postings regarding this disease. I am not much better, still on the colchicine 2x day and also added celebrex 200 2x day. it is not doing much to decrease the accelerated joint arthropathy. my rhematologist has essentially bailed on me and told me I now have to see yet another "specialist" rheumatologist. Geez, and my insurance reimburses him as a specialist.??so... i have not had any synovial fluid aspirated, which seems rather painful to have a needle shoved into a joint that is already painful and inflamed. i do feel i have had this malady for years and have gone undiagnosed by other physicians. i would like to know if there is anyone else out there with polyarthritis, multiple joint arthropathy or whatever the buzz word is for this stuff today. i did find out that a fellow named McCarty coined the phrase pseudogout which is caused by the calcium pyrophosphate crystals. that once in the joint, unlike the monsodium urate crystals never go away. the urate crystals can of course cause extreme pain and tophi, but they can be controlled. my uric acid level wa normal, however one patient I read about had two distinct crystals aspirated from different joints. the monosodium urate and the calcium pyrophosphate. also found an article relating low magnisium as a possibility. and more articles on possible cppd neuropathy. this stuff CAN attack the vetebrae and cause erosion as well. i continue to hunt down information and actually seemed to have more info then the dumb a-- guy i went back to this week. I guess that is why he is punting me away. docs dont seem to like treating nurses much either. you will find better articles if you google cpdd on medline instead of cppd. somehow this got tagged as cppd, so if we have ANY smart physicians in the house, i certainly welcome your recommendations. diet recommendations? (exercise is becoming more painful every day and I can hardly walk the dog anymore) but I do manage the pool once or twice a day, (until the cold weather kicks in) i feel i have a rapidly accelerating form of this that is causing rapid destruction of all of my joints. feel free to email me with any tips on how to better treat this. not keen on staying on colchicine the rest of my life. with hope and regards, ruth

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I was browsing and came across this site. Amazing, someone who has the same problem as I do. This is what I wrote in the Arthrits journal. I keep searching for relief.

Pseudo gout…. I am now almost 54. I am female and was very active. When I was 50 my feet started to ache terribly. I went my rheumatologist and was tested for arthritis, MS, everything under the sun. The pain spread to my hands and to my back. The swelling was minimal but the pain was excruciating. I was put on many arthritis meds including Enbrel. My immune system went off the charts. I started having infections that they could not control. The meds were doing nothing to help the pain. I had 2 surgeries to stop a breast infection and part of my breast has now been removed.

Nothing showed up on labs, MRI’s, X-rays and after seeing 3 doctors, and running every test possible I am sure the doctors thought I was crazy.

After one year of trying different arthritis meds, I begged for relief and I insisted on a shot of cortisone directly in my foot. The shot had a global effect and I felt normal for the first time in 2 years. It lasted about 1 month and the intense pain returned. The doctor refused another shot stating it could cause cataracts and destroy my tendons.

I changed doctors because I had a feeling my original doctor thought I was making it all up. The second doctor started the testing all over from the beginning and prescribed the same arthritis meds. He did not have a sonogram machine and was not able to give cortisone shot in my foot. Another year and a half, I suffered in pain. I complained to everyone that would listen. The doctors found nothing. After all of this I feared he too was thinking it was in my head.

I decided to go back to the original doctor because he had a sonogram machine and he could give me another shot in my foot. I needed relief from this pain so I tucked my tail between my legs and crawled back to him.

I went in for the 3rd sonogram of my feet and lo and behold the girl that did the sonogram said “I think I know what you have! You have a thing called pseudo gout. It is rarely seen in someone your age. You are so young and healthy. She did a sonogram on my hands and after 3 years of testing, and excruciating pain, I finally have a diagnosis of chronic pseudo gout causing secondary fibromyalgia from the pain.

The doctor quickly pulled fluid from my joint for confirmation and gave me cortisone shot in my foot. This time, the shot felt like someone split my foot in half with a sledgehammer but in 3 days all the pain was gone.

That was a little over one month ago and the pain has returned. Cortisone shots can not be given often enough to relieve my pain but it is like having a remission that I can look forward to a couple times a year. I must pick my periods of relief sparingly.

I am now taking Darvocet 4x a day for pain (my stomach can not handle anything stronger) and he prescribed Celebrex which is not helping. The only constant med I had previously taken is Hydrochlorothiazide for 30 years. After searching the internet, I see that it might be the culprit.

It has been quite the 3 years. I am told that there is no cure and only treatment to make the reoccurrence less. Mine is different, it never goes away. It is always here. There is constant pain. The days of painless days are far and few between.

There must be some treatment out there.

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Sorry it took so long to reply. It's been hectic.. Welcome to the club, It is not one any of us want to be in. There is another woman, your age that I want you to communicate with and when I get her approval to send you her info I will send it to you. She is a nurse with CPPD. She has helped me. We have been communicating for several months. We are trying to get together a support group for people with CPPD. At this time there is not one out there. Would you be interested? It would be on this site and we would all share our problems with each other. We all need a release from time to time. I will send you updated of what We all have been through, so you can see that you are not alone in this fight. I look forward to our chats.

Gary

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Hi all, my life has turned upside down in the past 4 weeks. I learned yesterday that I may have CCPD as I tested positive with calcium crystals in my knee. I have to say that it is all very frustrating as they also think I have SLE (Lupus) because I am testing strongly positive to ANA antibodies. First my hands were both swollen and wrists really bad. Then they said I have carpal tunnel and need surgery. I come off the prednisone and both knees turn into balloons, which they aspirated and found the CPPD... Not sure if they are all linked. Starting to come off the prednisone again now, lets see what the next few weeks say. Can anyone relate?

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We can relate. Consider us now related. The four of us now have been mis-diagnosed for years and now have destructive arthropathy in a variety of our joints. mine being feet, elbows, neck!!! knees etc. the pain can be excruciating. the people diagnosed with gout seem to fair better with the treatment then those of us with this particular crystal. gary and i are talking about starting our own web support group. this could be done through a yahoo site as i visit two other support groups there as i strongly feel there is a thyroid connection and have come across several articles on medline pointing me in that direction. please feel free to email me at rwatchorn1@hotmail.com or post another thread here. i think having our own site might be beneficial. this disease is MISSED until the destruction has set in. most of us are diagnosed with good ol osteoarthritis until it is way too late. and these crystals can and will do their damage on our joints. you are not alone. i must run out to the bank and hobble around the grocery store but will check back in later. ruth

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Hello,
I've been searching for some type of communication group for months and this is the first I've found! I'm almost 34 and was diagnosed with CPPD over the summer. It began last fall. I had what doctors believed to be a rhuematoid arthritis attack but tests for that and lupus came back negative. I've been diagnosed for years with Hashimoto's Disease as well (chronic hypothyroidism). I went to my internist who of course began thinking I was a head case until I began to swell. Once the swelling began it continued until I couldn't walk. My right knee was huge along with my left ankle. I understand that this unusual. With a referral I finally got the the rhuematologist weeks later. I'm his youngest patient. They withdrew the fluid from my knee. Not fun but instant relief and I was sent for x-rays while the sent the fluid to a lab. I got the shot and a prescription for prednisone too. The CPPD crystals showed and came back positive in the films and lab work. After weeks it finally calmed down. I got a pretty bad cold (swine flu maybe, not tested) and 3 weeks after getting over that I can feel an attack beginning again-like needles under my knees. I've read that after an illness or trauma that it can "trigger" an attack. I had a check up a few weeks ago and have osteoarthritis in my fingers (pinky starting to look funny shaped). I questioned the dr then that my muscles were bothering me. Now it is getting worse. Today I'm having a lot of muscle spasms that are painful and I'm finding it hard to sit at my desk. Does anyone else have associated muscle pain?
Best health to all of you out there!
Thanks

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Welcome to our group, As you are aware, there is not any other support group for CPPD out there to our knowledge. We are in the process off forming one. If you are interested please continue to comment here for now. Every one that has comunicated has been misdiagnosed, everthing from RA to mental disorders so don't feel bad, we have all been there. There seems to be a varity of syptoms out there from one joint to all the joints. Pain only in specific spots to pain in all of the joints. Most Doctors are unaware of all of the symptoms. and sorry to tell you this, there is no known cause of this disease, no treatment or cure at this time. The only thing they can do is to treat the pain. If you wish more info please add me as one of your friends and I will send you some of what I and others have experienced. I to am proud to be IRISH

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I've decided to go and get a 2nd opinion and will go and see another Rheumatologist on Monday. I can't wait another 2 months and 'see what shows up'. My doc says that whilst I definitely have CPPD he can't rule out Lupus. The thing I don't get, is that is started without notice bilaterly, first the hands then a couple of weeks later the knees. Nothing since the aspiration and cortisone injection in the knee. I've had one hand surgery done for carpal tunnel, diagnosed from the hands swelling, the other one will be do e before Christmas. Is CPPD a single joint thing, or have others had bilateral symptoms, ie both knees, both wrists etc. I think there is something underlying. Frustrated doesn't even begin to explain how I feel...

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The 2nd opinion is always a good idea,but don't have too much hope. I don't want to sound negative but from what I and the others in our group have found out, not to many doctors are up to date on this disease. My first signal of CPPD was also bilateral Carpal Tunnal. Now it is is every joint in my body. It also started very suddenly. Be aware that some only get CPPD in one or two joints and others get it in all of the joints, incuding the spine, where most of what is written states that it dos not go into the spine, but it does. there is prove out there. I for one. Right now I am facing total hip replacement on both sides due to this disease. and my knees are also very bad, then my ankles, all bilateral. I pray that your second opinion goes well for you and you do not have CPPD. I am working on getting a support group together on this site so we may all discuss our symtoms, fustrations and work together to help each other ou,t in there time of need. Just to have someone that can relate to what you are going through helps mentally get us through these tough times. Good luck on your 2nd opinion and I will be thinking and praying for you.

Gary

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Hello all! I have symptoms for CPPD but, haven't been diagnosed yet. I was test for Gout which came back negative. Right now I am eating Ibprofen like candy to manage the pain. Anyway, I am wondering if any of you have noticed that the weather makes the pain worse or brings on an attack? Also, I'm in Indiana and am thinking about finding a doctor to go to if any of you have any suggestions.

Thanks!
Cindy

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I certainly hope you do not have it. Its seems to affect individuals differently. I live in Wisconsin and I can deffinatly tell you that weather plays a factor in my pain, but everyone is different. I also have Bursitus which may account for the weather factor. Doctors are not well versed on CPPD's affect on people so beware. We all have been misdiagnosed in our quest for help. Your best bet is a teaching Hospital. They seem to be the most knowledgeable. Good luck and let us know what your diagnoses comes out as.

Gary

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Have yourself checked for hemochromatosis (iron overload). Just call your doctor's office and find out what your last blood reading was for ferritin. It causes CPPD!


Have a great day,


Peter41

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I can't believe I found this discussion board. I had given up checking since there never seemed to be anything new out there. I was diagnosed with CPPD over 10 years ago by virtue of clearly obvious calcium crystals in x-rays of my knees that were swelling mysteriously. Once I began researching this disorder, I realized that I had experienced symptoms as early as age 20yrs. with unexplained pain and swelling episodes in various joints. This despite the literature suggesting that "this is a disease of the elderly". Just recently underwent total hip arthroplasty on one hip and will need to have the other done soon as well. I am a medical professional myself and am fortunate to have an excellent orthopedic surgeon who is familiar with this diagnosis. I currently take meloxicam, colchicine and plaquenil. I have pain despite these meds but generally can get some relief from Tylenol. I firmly believe that fitness exercise is crucial in maintaining function. I am interested in reading the experience of others on this board.

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I am glad you found us. I have not been able to find any other support group for CPPD either that is why I posted the request. There are 3 or 4 of us that have been communicating back and forth and I will be happy to share our experiences with you. I have already received authorization from those to share our e-mails and will send them to you separately. It was suggested to me from my rheumy to have both of my hips replaced and I am very apprehensive about it. Will you share in your experience? Also you stated that you are a firm believer in exercises, I know we need to keep the joints moving and I am aware of the benefits also but it is so hard to keep going through the pain. What type of exercises do you do ? It takes all I have to just walk a half a mile. Yet I know I must keep moving. I was forced to retire from my occupation as an automotive technician several years ago due to CPPD and the pain it brings. It seems that all of us have been misdiagnosed over the course of the years and there is just nothing out there to help us to understand, the cause, treatment or any hope for living a decent life without pain. Those who do not have it cannot understand what we must fight through each and every day. Then when I feel I can no longer take it I read from inspire and find I don’t have it as bad as some others and I keep going taking it a day at a time. If you would, please share your experiences.

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As far as the hip replacement experience, I am only 6 wks. post-op, so I can't tell you the ultimate outcome. I can say that it is a very long, slow process of recovery and rehab. I would definitely recommend that it not be done unless the degenerative pain in your hips is dramatically impacting your function, because the recovery phase will definitely put you down for at least 2-3 mos. Does your orthopedic surgeon agree that it's time? With respect to exercise, I have always been active in recreational fitness as well as strength training, cardiovascular exercise and flexibility. Exercise does not produce my pain. Joint stiffness may prevent me from achieving full range of motion in some exercises on some days. I believe that when we avoid movement because of pain or stiffness we create a cycle of immobility that worsens the pain and stiffness. I recently discovered a new book that has positively impacted my exercise practice. It is "The 10-Minute Total Body Breakthrough" by Sean Foy. M.A. With this book one can design an exercise routine to meet current abilities and advance as possible. Remarkably, with guidance from this book, I feel that I benefit from only 10 mins. of specific exercise each day. My job is quite physically challenging as well, though. Also, for most arthritic conditions, water based exercise is generally beneficial and easier on the joints than land based. My research has suggested to me that I may have the more rheumatoid form of CPPD with persistent swelling and inflammation and intermittent flare-ups of severe pain. Driving in the car where I cannot change position at will is most uncomfortable. You had mentioned in an earlier post that you are on methadone for pain. Do you also take anti-inflammatories? I take 3 different drugs that help with inflammation, and these aid in keeping the pain and discomfort at a tolerable level most of the time. I do not like to take pain medication and do so only if I have to. An occasional dose of arthritis strength Tylenol is usually enough. I hope that my reply contains at least some information that you will find useful.

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Thanks for the reply. If you add me as a friend I can send you more info.

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Hi All, Hope everyone is doing well.
What a hard winter! I am in Virginia and feel like I'm an (accurate) early winter storm warning system. Granted it has been a harsh winter for most this year and my sympathy goes out to all those with any arthritis types of diseases.
I go back to the doctor in April, its been a while and my symptoms have continued to progress. I haven't experienced the swelling to such a severe extent as before but the pain is now 100% of the time and worse then ever.
This is going to sound a bit ignorant but I stopped taking almost all of the medicines I have been given. I'm 35 folks and want my vital organs to outlast my joints! I was on a TON of medications. So I always have pain but I also have a very high pain tolerence and figured I would suck it up as long as possible. I know that really before to long not taking anything won't be an option. I drive the straightest routes possible so I turn less, my husband drives me home on bad days so I don't have to do the rush hour brake/accelerate-brake/accelerate, I hardly use a cell phone because holding it causes pain in my hand, arm, and shoulder that lasts for an hour after a call.
Question about Cholchicine (sp?)-for those taking it does it really make you that sick to your stomach? I have a prescription for it but have yet to have it filled.
Also, I was told that when I have the pain/swelling NOT to exercise as this created further (damaging) friction. I know that for me it made the swelling worse. I understand that this is good for regular arthritis that it helps with the range of motion, etc. Has anyone else been told the same thing?
Thanks everyone. I really like knowing that this community is here.

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