Pseudogout

I had routine blood labs a month ago and my parathyroid hormone was elevated. I was prescribed Calcitriol .25mg everyday. Recieved a call from nephrology to cut back on the Calcitriol to 3 days a week because the meds made my calcium level spike. Sometime during this situation I acquired a severe pain in my ankle that radiates up my lower leg. The pain is excruciating. My meds doctor told me it was pseudogout. My nephrology group told me to go to my primary care physician. I am in the middle of trying to get in with the pcp and really am irritated because it hurts and I have to drive to the next town, talk to another doctor and avoid covid. Anyone familiar with this issue?

[Alfredmynewkidney]

I know about hyperparathyroidism but not pseudogout. That sounds really painful. Hope you get some answers

[WYOAnne NKF Ambassador]

I have issues with parathyroid hormone also. My nephrologist has me take calcium 2x a day. I know my husband gets gout. He takes allopurinol 3 x a day to prevent attacks. Hope your PCP can help you with the pain. Have they done a blood test to see what your uric acid level is? That is the culprit for my husband.

[Hidden in reply to WYOAnne]

I thought with pseudogout it was the calcium crystals that cause the problem and with gout it is the uric acid. I am pretty sure I cannot mix gout meds with generic cellcept or azathioprine. Haven't gotten in with pcp.

[WYOAnne NKF Ambassador in reply to Hidden]

I am not familiar with pseudogout. I do know from my husband whether gout or pseudogout that it is VERY painful. Hope they can find out the cause soon.

[Hidden in reply to WYOAnne]

Thank you. It is a challenge.

[Hidden in reply to WYOAnne]

I did some research and determined that typical gout medicine wouldn't work because it isn't uric acid it's calcium crystals. Somehow the crystals have to be dissolved. That means I need to probably take large amounts of an anti inflammatory medication. Knowing I cannot take NSAIDS, it will probably be a crap load of prednisone. I have had issues with high pth in the past, but never this pain situation. We will see next week when I go to the doctor. Will keep you posted.

[WYOAnne NKF Ambassador in reply to Hidden]

Will be thinking of you....good luck with the doctor appt.

Keep me posted.

[Hidden in reply to WYOAnne]

Today I saw the PCP. He agreed it was pseudogout and prescribed 80mg of prednisone for 3 days and then a taper down and back to my regular dose of prednisone. I will keep you posted.

[WYOAnne NKF Ambassador in reply to Hidden]

I hope the prednisone does the trick. Let me know if it works.

[Hidden in reply to WYOAnne]

More updates. I still have the ankle pain and at a level 9 now. I went back to the primary care physician of whom re-diagnosed my ankle as an osteoarthritis outbreak and put me on more prednisone on top of the prednisone I already take for the kidney transplant. Then, I saw the nephrologist for regular lab work and she looked at it and put me on more prednisone and colchicine in case it was gout. Even though my uric acid wasn't elevated. That didn't work and a week later I called back and they told me to hit it for three days in a row with a heavy dose of prednisone on top of what I've already taken. Didn't touch it. I made an appointment with foot and ankle for next week even though Nephrology told me to go back to the primary care physician. I've about had it.

[WYOAnne NKF Ambassador in reply to Hidden]

There has to be a cause for your pain. Don't give up till you find it.

Take care!

[Hidden in reply to WYOAnne]

I will. Thank you.

[Hidden in reply to WYOAnne]

Sorry it took so long to get back to you, but it has literally taken this long to figure out the problem. On Saturday morning my husband suggested we go to the ER. There was some bantering back and forth, due to the fact I can be stubborn and do not want to pay anymore medical bills. We weren't getting anywhere with nephrology or other doctors and their opinions, so I went. Turns out I have a broken ankle with a chip missing from it and a one and a half foot clot (DVT). No wonder it hurt so much and has been going on since the second week in October. Also, the medication calcitriol is involved somehow. Further testing is needed and I have to wear a boot for the duration. I am taking Eliquis to thin the blood. Nothing helps with the pain. If you think something is wrong keep pushing. This clot could have killed me.

[WYOAnne NKF Ambassador in reply to Hidden]

I don't know if I ever told you my COVID story. So, it was March of this year and we were getting locked down. I started to run a temp the end of that month. After a week, my nephrologist said I probably had COVID, to stay in place because he didn't want me to go out among sick people. When it was the end of April and I still had a fever I was seen via telehealth after my COVID test came back negative. Infectious disease ordered every blood test imaginable and a renal ultrasound. All came back negative except it showed I had inflammation some where. I was sent in person to cardiology and they did a TEE - done at hospital under anesthesia with camera looking at my heart. Luckily they were able to rule out endocarditis. By now it's June and my PCP scheduled an hour long in person appt for beginning of July. More tests! Finally mid-July he ordered a gallbladder ultrasound. They inject a hormone to make your gallbladder think you just ate a rich fatty meal. When they did that, I got deathly sick. My gallbladder was enlarged, inflamed and was backing up into my liver. 2 days later I had surgery. Due to COVID and doing so many things via telehealth it took them 4 months to find the cause of my fever!!Yes, you are so right....if you know something is wrong you do have to keep pushing and don't give up till you find the cause. So glad they found out the cause of your pain. Can't imagine why they didn't take an x-ray sooner?@#$ And the clot, so glad it didn't move...

Take care and keep me posted!!

[Hidden in reply to WYOAnne]

Wow!

[MomofRecipient in reply to Hidden]

My son had a transplant two years ago. He also has HF Autism so we work as a team on his medical conditions. He was having pain over his transplant area. Called his nephrologist said his recent bloodwork was normal so probably muscular. Over the next day or so the area became pinkish-red and warm and now one of the elbows was red and warm. No fever. Called the nephrologist and he said go to PCP. My son's PCP was gone that day but we knew it needed to be looked at so saw his PA. PA said it was dermatitis and sent home. We called the transplant coordinator hoping we may get farther with her. I said I had pictures of the progression of redness and could I send them to her to show the doctor as our PCP was out of town. Dr. was in her office and heard my request and actually said NO! Didn't need to see him. We are not pests. Do not call frequently. So I took my son to ER. It was CELLULITIS caused by being immunosuppressed! He was septic. They admitted him on IV antibiotics for one week and outpatient IV antibiotics for 3 weeks. He has a mechanical heart valve and they did extensive testing to be sure the infection did not travel to the artificial valve. BIG trouble if it had. Did we let the nephrologist know he dropped the ball! He apologized but little good that would have done if my son had died. He was a very caring doctor in the beginning, so I don't know why he seemed uncaring. Wish we could go to a new transplant center, but no others even remotely close. The moral of this story: If you know something is wrong persist. Get new eyes on the problem. I hope your health continues to improve. Stay safe.

[Hidden in reply to MomofRecipient]

Sorry to hear about your son. Glad he is getting the care he needs. Sometimes you have to push pretty hard to get answers.

[Slcallat in reply to MomofRecipient]

Totally Agree!!! I’m so sorry you went through this but I have had similar situations when it comes to physicians that almost cost me my life. My advice to patients who unfortunately have developed a chronic illness or have love ones who are suffering from this, You Have The Right to question your physician and if in doubt of the service and/or answer(s) you are getting, please get a second opinion. Remember we are paying them for care. It’s not the other way around. All we ask is to be listened too. If that physician is not satisfying your concerns....if you can, Fire Them. This is your health and we have to be active participants in that care for ourselves and our love ones. You as A Caring Mother demonstrated that and saved you son’s life. I applaud you!😊

[MomofRecipient in reply to Slcallat]

Your kind words of support are much appreciated. Wishing you good health! Stay safe.

[Gatun]

Pseudogout and gout have nothing in common other than pain and the word gout. Think of pseudogout as fake gout, it acts and hurts like gout but it's calcium chrystals and not uric acid. There is "no" cure for pseudogout so limiting any food intake isn't going to alleviate the pseudogout pain. The only way to be 100% positive you have pseudogout is to take fluid from the joint that's affected. I have pain every day and what works best for me is acetaminophen and walking, my knee pain stops when walking. Note: with gout, you have to limit your intake of beer and wine, whereas with pseudogout you can drink until the cows come home with no effect other than a hangover. Cheers!

[Hidden]

It turned out not to be either gout, but you are right about taking fluid to be sure.

[Slcallat]

Having the same issue! Nephrologist assured me that the PTH level will get resolved. It’s been 6 months and we are still tweaking Calcitrol, resulting in increased calcium levels etc. Now phalangeal joints hurt like crazy. Is it possible to stabilize the PTH? Should I get a second opinion?