So, here goes! I'm 48 and just "celebrated" 3 years Kidney-versary September 14th! I have PKD and was having a lot of pain and other issues before, so even though I was still around 17% function I was listed for transplant. I was very fortunate though to have a living donor come forward to donate and after only 9 months of Peritoneal dialysis, I was transplanted. My kidney has been great the whole time but the immunosuppressants have wreaked havoc on me one way or another. I've come to the conclusion (I say I because I've seen 2 different rheumatologist so far and both were too afraid to commit to anything BECAUSE I had been transplanted) that I have developed psoriatic arthritis. I had never had any psoriasis that I knew of until around 3 months after I was switched from Tacrolimus/Envarsus and Cellcept to Belatacept infusions. I had a few spots on my arms that developed. The whole time though I had been developing severe joint pain in my hands and feet some, but now my elbows and shoulders as well as wrists and some occasional lower back and neck gave joined the party! My question is for anyone who may have experience with any autoimmune disorders, such as PsA or RA, etc and has been transplanted or experienced onset once they were on the immunosuppressants...I'm interested in treatments that are available to us or if you've been seen by anyone that was able to help you out at all? I'm at a loss because since my transplant has been great, my transplant team takes the stance that their "job" is done! And so far I've struck out with the rheumatologist so far because I guess I'm what's known as seronegative but PsA doesn't have the same markers as RA and some others...Yet I LITERALLY have every symptom! Frustrated would be an upgrade to what I've been experiencing, so ANY tips or shared experiences would be greatly appreciated! Thanks in advance ~
Post Transplant psoriatic arthritis trea... - Kidney Transplant
Post Transplant psoriatic arthritis treatment
Hi, I’m in the same boat. I have PKD. One month after my transplant in 2021 I began having buckling knees. That led to back pain, sciatica. I had neuropathy in my feet before and now it’s worse. Can’t sleep. Can’t take natural supplements, nobody gives anything for pain. I’m talking 24 hours a day pain. I’ve been to doctors, had MRI, been to physical therapy. Nothing helps. I’m at my wits end!! Now it’s gone to my knees hurting. Hard to walk. Nobody helps. Thinking of trying neurologist next. Sorry I couldn’t give any helpful tips. I don’t have any😞
After I first had my transplant, for the first month or two, I was on Tacrolimus and Cellcept. I was having a lot of joint pain in my hands and elbows, and if I remember correctly my knee as well. Now granted, I was a self employed contractor and was used to physical strains and sore joints, etc...but I knew this was different because it came out of nowhere, and I had literally not been able to do anything physical for a few months. They ended up switching me to Envarsus from the Tacrolimus, which is just extended release tacrolimus anyway. It did help some with the tremors and maybe some of the insomnia, but I felt like the joint pains and such briefly started to subside, then came back in different variations in areas, basically my left thumb versus my right and now my first 2 fingers on my right hand, etc. That's when I started researching more and came across the side effects that no one was readily admitting with the immunosuppressants. I finally was able to switch to the Belatacept, because the "brain fog" was getting so bad that I could literally stick my hand in my pocket and not remember what I was looking for! That part got better but I did become very lethargic with the Belatacept. The tacrolimus and Envarsus are known to cause tendon and nerve issues, but more importantly they are neuro and neurotoxins! So basically they're eroding the whole reason you had the transplant. I realize it's the best of some bad options, but no one wants to address the issues and the fact that there are other options for immunosuppressants! One thing I came across early on that may be pertinent to you is what is called "CiPs"...It's Calcineuron inhibitor pain syndrome caused by that class of immunosuppressants. Each med has their own setbacks but getting the specialists to address them and not think on "Autopilot" is the biggest part of it! I also had 90% blockage of the L.A.D. (the Widowmaker artery) and had to have a stent placed because the Envarsus was effecting my cholesterol so much and so quickly. It took them finally doing a catheter that they had no interest in doing, to finally start listening to me...somewhat! Good luck and you DEFINITELY have to be your own advocate!
Exactly how I’m feeling. First my knees buckled, then pain set in. Going on 3 years. 24/7. I researched CIPS in the very beginning, the doctors reply was a laugh and oh you’ve been reading 😡 Nobody listens, nobody wants to do anything meanwhile this pain just keeps traveling around. I’m at my wits end
I don't know if it's an option for you, because I'm not even sure for myself, but depending on where you are, maybe look for one of the transplant hospitals or groups that are supposed to offer a "multidisciplinary" approach...Supposedly they have the different specialty types all work WITH each other to take care of your issues in a more efficient setting. I've heard different ones will have you go from one appointment straight to another group afterwards depending on what you're experiencing. I believe Cleveland Clinic and Mayo are the two most prominent with this approach but I haven't tried that route just yet...although I'm ready I think. I would imagine a great deal of the University based groups could offer that approach because with them being institutes of higher learning, it's kind of their purpose I would think🤷♂️. One of my biggest hurdles is the fact I had my transplant at the University of Cincinnati but live in Louisville, Kentucky. Although I was listed here locally as well, Cincinnati had my donor volunteer in for testing within a week and both of us worked up within the month...DURING COVID! Although it's only a couple hours away, once I switched to the Belatacept infusions at the end of my first year, I was released to UK transplant so I could have my infusions and testing done locally. Then Cincinnati decided that since it was after a year that they would FULLY transfer my care and i am no longer listed as their patient. I'm not sure where the breakdown between the two was but of course as patients, we're the ones stuck dealing with it! I understand some aspects, as they have many, many patients as well as lives of their own...But we can't leave our issues at the 30 minute appointment! We get to live them 24/7...I'm 90% sure I wouldn't be ALIVE right now if I didn't go with my gout feeling and educate myself on my conditions, and MOST IMPORTANTLY....ADVOCATE FOR OURSELVES and don't take NO as a valid answer if it doesn't actually address your issues! Once I started having severe fatigue no matter how much coffee I had or whatever I did, I started cross-referencing my symptoms and that's when i learned about the psoriatic arthritis (PsA). I just need someone willing to attempt to address it! 😤🤬😭 Oh...and keeping a sense of humor, I KNOW, has probably about the only thing that has kept me somewhat "Sane" through the whole process!
Oh...and since my wife is actually a family Nurse Practitioner, I will give you the advice to be very "creative" in how you present your research! They DEFINITELY don't like you bringing up Google or the likes! LoL!😬😁 Maybe tell them someone in your "support group" had XYZ experience!?! Good luck!🙏🏼🤞🏼🤙🏼
Oh I have done that too trying to get off prednisone. Many in my group were never on it, or taken off quickly. One doctor in the group said he would try it the other said no. I get nowhere. I’m in so much pain now I wonder what’s the point
So true about bringing up research. They just can’t seem to park their egos at the door.
I typically arrive with a series of questions meant to “guide” the conversation in the direction I want to go in situations like this. It doesn’t always work though.
To top it all off, my transplant nephrologist was disparaging the treatment plan the infectious disease specialist the nephrologist had referred me to. It was frustrating and frankly rather disgusting. I ended up having a serious conversation with both of them.
I made it clear that I expect them to work together. I literally mentioned Mayo’s team approach and told them I expected them to emulate it as they worked on my case. After all, if doctors at Mayo can work together, I had complete faith that my doctors can as well…I told them that I won’t come to appointments with either if they haven’t taken time to confer about my case a few days before my appointment. Of vourse this means I have to pose questions to each to assure they’ve spoken to the other, etc.
In addition, I told them that I will follow the nephrologist’s guidance regarding my kidney and infectious disease specialist’s guidance regarding my recurrent CMV.
And finally, I told them both that I expect to see a consistent positive CMV data trend by the end of February 2024. (This CMV situation has been nonstop since mid April 2023.) If they haven’t accomplished that by then, I’ll bring outside consults to the team to help them.
Honestly, more or less fighting with one another as I feel poorly and struggle with round after round of CMV? Truly, enough is enough. I felt like a preschool teacher dealing with preschoolers who couldn’t share the sandbox. This is NOT what patients ought to have to deal with amongst doctors while not feeling well.
Ugh!
Jayhawker
PS For the time being they are communicating with one another and are touching bases on my case regularly. We’ll see how long this lasts and whether it leads to positive outcomes gif my recurrent CMV.
I send my links from medical research and they send me theirs.
I am sorry you are going through this. I do not understand why you were not helped by the Rheumatologist. PsA has other markers for inflammation. I know when I was developing PsA, I had every indication. I had 85 % of my body covered with a "rash", which they did not even diagnose until after, but it was psoriasis. It just presented differently. I had curled hands, discolored fingernails and toes and my joint pain was all over with flares. After almost 3 years of no one listening to me, they did a SED rate test and a CRP for inflammation and it was off the charts. Find someone who will listen to you as PsA is miserable and also will impact the kidneys with high uric acid. They should be all over this.
I am not transplanted but on dialysis and I take Remicade every 6 weeks. It is a good infusion for people with CKD. I was on Orencia before for five years but then it failed.
Thank you! And yes...I agree as far as the rheumatologist go. I had started developing small spots of psoriasis on my elbows and a couple other places right as it was all starting to make sense, to ME anyway! There are cases where the Belatacept induced PsA, and I was even trying to share the med journal studies to no avail. I think they were just scared or too lazy to go outside the box per say, since I am already on immunosuppressants obviously. The testing basically showed that I was seronegative but physically I had EVERY SINGLE symptom. I go to pain management. I get cortisone shots in my hands. I use braces and gloves and wraps and creams and gels and anything else I think may work but other than maybe knock the edge off, I'm wasting my time getting out of bed when I even feel like doing that! Because of course the fatigue is RIDICULOUS! It's so frustrating, and it's gotten to be a huge waiting game because the options get very limited when it comes to the "specialists". The good thing is, my transplant has worked great since day 1...The problem is that the transplant side looks at it as their job is done BECAUSE my kidney function is great! Like I said, FRUSTRATING! But...Didnt come this far to quit I suppose! 🤷♂️😉😤
What I have discovered like you that due to the specialization of transplantation doctors take a tunnel vision of the body when it comes to testing and health plans. These are good doctors but the set up of medical care promotes this independence. In any other field collaboration is the key to success but in the medical field the patient becomes the facilitator of communication between doctors. Doctors rarely go through the complications of the medicines they prescribe and the patient has to rely on Google. I ended up with a bone disease called AVN from prednisone which resulted in hip replacement. Even though this happens in several cases of transplants, it was never mentioned. In fact during the many meetings required by transplant centers drug side effects are vacant from the conversation until after the fact. My post is not a direct answer to your question, but like you many transplant patients are on their own to solve medical problems that you have little expertise. And trying to find doctors to help in the process is overwhelming. I often think back to the time when my ex wife was diagnosed with MS almost 40 years ago and we were looking for answers. We finally went to Mayos and were surprised when a team of doctors analyzed her problem. The answer was not what we hoped but the assurance that a team of doctors was involved in the process made us feel more self-assured that we were cared about. That was 40 years ago, you would of thought that the same approach would have spread. In the final analysis what I have realized that a transplant is only a treatment with side effects and those side effects can be devastating for some and for others never appear. Which is the challenge. This forum has been a great asset in bringing transplant patients together and assist in the sharing of experiences and information, but it is a shame that it does not happen in transplant centers on a regular basis. Each one of us is waiting for the next shoe to drop. What new side effect will I experience that I am not ready and where will I turn to for answers. I am a person with many parts. The kidney although an important organ is not the only part of my body.
Well said! I can't imagine what it would be like if I DIDN'T take the initiative and educate myself along the way! And kudos to having to deal with MS BEFORE having all of the information available to us that we have today! Although I've definitely experienced life before the "information highway", I can't imagine having to have dealt with these types of life altering scenarios before...Then again, maybe having to do that in depth research would have strengthened the so called specialist's approach. I can still see the somewhat sly grin on my transplant nephrologist's face when I said that "since my kidney function was great, I realized the transplant doctors felt their "job" was done" and it was basically somebody else's puzzle to solve! I realize there's a fine line that you don't want to cross either because they have all of the power, Heaven forbid I ever need another transplant! 🤦♂️😳 I can't believe I even typed that!!! Ugghhhh...It's definitely a greater challenge the further along it goes though because some days I feel like they're just waiting for you to give! And with the psoriatic arthritis, the first symptom that really tied it all together was the extreme fatigue. And what I'm realizing now is that the temperature changes and changing weather fronts and systems are one of the biggest triggers for me...Unfortunately, I'm starting to think living in Kentucky isn't the best option when it comes to changing weather were..."If you don't like the weather, Wait 5 minutes!" 😁 I had the rheumatologist telling me that they didn't think the few spots I had on my arms and elbows were "psoriasis" and my dermatologist saying I needed to have a rheumatologist look into it because it was effecting my joints and multiple issues, and another rheumatologist saying that since I was "seronegative" with my bloodwork, they would be worried it could be PsA(😳Which of course was what I was saying all along!🤯) but she would suggest I talk to the dermatologist because THEY could work with my transplant team...While dermatology was saying they had to be VERY careful about defining it as "psoriasis" on my skin because of insurance...?!?🤔😯🤦♂️ I'm not even sure what the hell that means AFTER I asked for multiple clarifications! And of course the transplant neph. was referring me back to rheumatology...🥳🤗 And like I stated...EVERY. SINGLE. SYMPTOM! Except the bloodwork, which I'm sure you know isn't even geared towards PsA! Sorry for the Rant!🙏🏼😬🤯🤗 It definitely sucks not having treatment options...YET!🤞🏼🤞🏼🤞🏼
Thanks for sharing. And you definitely have a story. Now it is so real, but later you might consider writing your story. In fact, any of the people who post could contribute their story. Put together it would make a good coffee table book for every transplant center.
I can't help with your specific problem, Still, I wanted to say how terribly awful it must be when doing it alone when in pain as well. Praying and hoping you can continue to advocate for yourself in spite of your pain and demand that someone help. If you stop hollering, they're not going to hear you.
BTW Use the site MEDIFIND and try to locate a highly ranked specialist near you who may be able to help. My best
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Thank You for the kind regards! I realized a few months in why exactly they refer to US as "Warriors"! 🙏🏼💚🙏🏼
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