Chondrocalcinosis CPPD

• By Steve_03779
• Posted May 18, 2009 at 12:27 pm
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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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• By 1irishman
• Posted May 19, 2009 at 1:09 pm
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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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• By rwatchorn
• Posted July 25, 2009 at 11:55 am
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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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• By rwatchorn
• Posted August 20, 2009 at 9:12 pm
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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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• By Wendymini
• Posted October 13, 2009 at 1:43 pm
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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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• By 1irishman
• Posted October 15, 2009 at 11:17 am
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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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• By MarkandSusan
• Posted October 17, 2009 at 6:37 am
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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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• By rwatchorn
• Posted October 17, 2009 at 9:31 am
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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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• By longislandirish
• Posted October 29, 2009 at 10:45 am
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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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• By 1irishman
• Posted October 31, 2009 at 10:32 am
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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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