Joint problems and medications?

[Falkenbach]

About 3 weeks after my transplant, I started having trouble walking due to arthritic-type pain in my ankles and feet and knees.

The knees often hurt, which I put down to fluid retention, but the ankles really seem to be more of a deep, embedded, pain in the bones. I can hardly walk. When I first get up in the morning, I have to shuffle to the kitchen (can't walk) and take Panadol just to be able to walk well enough to gave a semi-normal day.

Early on, one of the nephs said it could be osteo-arthritis and just to keep taking Panadol. But now I've gone back to see my original consultant, and he says that Cyclosporin can cause this problem. Anyone had any experience along these lines? He is sending me for a bone scan on Tuesday and depending what it shows, my Cyclosporin may be reduced or changed to a different medication.

The ankle/knee problem is seriously affecting my quality of life because I have been unable to get back to doing a proper exercise routine - I sooooo wanted to get fit again after my transplant.  Also, it makes sitting in one place very difficult, and as I have returned to work and spend a lot of time at a desk, I come home in too much pain to do anything else.

I can cope with, say, doing a load of groceries, but once I get home, I have to put my feet up again. The poor dogs will be milling about wanting a walk, and there's nothing I can do for them. When I do walk them, they get to go around the block once!

[Romona]

I have been having pain too. I'm on Progaf. At times my legs really hurt so bad. Sometimes the pain is in my hips. They are still trying to figure out what it is.

[Falkenbach]

How long ago did you have your transplant Romona?

[Romona]

Hi Louse, It was a year ago in June. The pain I have seems to go in cycles. Very intense for a few days then eases up. It feels like it is my bones. They adjusted the medication I take because of my parathyroid function. I just recently started taking magnesium. I had a sleep study this week, but haven't heard what they found out. I hate to complain too much because I'm doing very well with the transplant. Sometimes it is hard to be happy when there is pain. 

[Falkenbach]

Yeah, that's exactly how I fell - I dont' like to complain because otherwise my health is doing so well since the transplant. I've even gone back to work, as I've mentioned. But this pain is really putting a dampener on what should be a great time in my life!

[Romona]

 
Well hopefully we can both get this figured out so we feel better!

[Falkenbach]

I'm sure hoping so.

[Amanda From OZ]

Sorry your feeling so crappy.

My sister who had a transplant More than 10 years ago, had similar pain, they figured out her PTH went up for some strange reason, and has been feeling a lot better since having them removed 2 years ago. Unfortunately the damage can't be reversed but it has made her feel much better.

Whats ur pth at? ....

[Falkenbach]

I'm not sure, though I know it was quite high prior to transplant and my neph was talking about the possibility of having them removed, which I wasn't keen on. I'll have to ask my neph about my PTH when I see him on Thursday.

[angela515]

My sister who had a transplant More than 10 years ago, had similar pain, they figured out her PTH went up for some strange reason, and has been feeling a lot better since having them removed 2 years ago. Unfortunately the damage can't be reversed but it has made her feel much better.

I also had to have my para's removed *after* transplant... wierd. 

[Falkenbach]

Okay, well the nuclear med scan certainly seemed to show the cyclosporin milling about my knees and ankles, and this weekend just past, I had an MRI which showed that I have swelling in my bone marrow - all apparently caused by cyclosporin.

My neph said today "we haven't seen a case of this in years" - so I couldn't help but think "why me?" damn damn damnit all 

Apparently it used to be more common in years past when they used to use larger doses of cyclosporin, but is not common now. Trust me to be the odd one out. Dunno whether to laugh or cry. 

I am having my second kidney biopsy (on the transplant) next week, and depending on what the results of the biopsy are, my neph said he will look at changing the Cyclosporin to a different drug. It's only another week. I've lasted 4 months like this so far, I'm sure I'll survive.

[paris]

I am sorry Cycobully- it just seems like one thing after another.  Hoping the biopsy goes well.  Sorry you are going thru this.

[Falkenbach]

Thanks Paris. The more I thought about it as the day went by yesterday, the more I thought "how on EARTH does your bone marrow SWELL???" No wonder it hurts so much!

I still get about and do the the things I have to, I'm even going to work today. But it's extremely hard and it's painful, even a short trip to the shops is difficult. So hopefully this will all go away with a change of medication.

[Romona]

Wow, That is interesting. But now I wonder where my pain comes from I'm not on cyclosporin. I wonder if it is my parathyroid. I'll have to ask when I go in a few weeks. It is better since I'm taking magnesium, my levels were very low ever since my transplant. But I still get pain in my hips when I am sitting for a while. And pain in my feet. I certainly can't "power shop" anymore. Which is probably healthier for my budget anyway!

[Falkenbach]

Okay, well as my biopsy results from last week were good, my neph was happy to change my medication. As of tomorrow, I will be on Rapamune (4mg per day) in place of Cyclosporin. So I guess it's a case of let's just wait and see if this makes a difference to my joint problems, and if I will be walking normally again in the near future.

*fingers crossed*

[Amanda From OZ]

I hope changing that medication will make a difference. I will have my fingers crossed for you also. 

Amanda
xxoo

[Roxy]

Hope it fixes the issue Cycobully. 

[Falkenbach]

Cheers guys!  I'm feeling pretty positive about it - well, hopeful might be a better word, but hopeful is a positive thing!

[Romona]

Cheers guys! I'm feeling pretty positive about it - well, hopeful might be a better word, but hopeful is a positive thing!

Good for you! What a good attitude.

[Falkenbach]

New medication is not agreeing with me just yet. I've only been on it a few days, and I'm sure the side effects will pass, but I'm a bit tired and fed up with all this, and I just want to cry.

I've had diarhhea for days on end - last time this happened (when I had gastro some weeks back) I landed in hospital for a week with acute renal failure, severely low blood pressure and an almost non-existant white blood cell count. So, needless to say, I have been a bit worried.

When the problem was still there yesterday morning, I took myself to the emergency department. They gave me some IV fluids (I'd managed to keep myself pretty well hydrated with electrolyte solution) and checked my vitals - my creatinine and blood pressure etc were good. So I was allowed to go home, but the renal registrar asked me to go in this morning to visit the renal unit and have my medication levels checked. So I went in this morning, but it was a bit of a wasted trip, really. The Dr. didn't ask me any questions, didn't even write me a blood form - I basically asked/told HIM what should happen. I already had some blood forms in my bag, so we agreed I'd get my bloods done to check the Sirolimus levels and see if it needs reducing. Just a blood test! I could have done that at my local hospital, instead of the 1 hour drive and paying for all that petrol and parking. grrrrrr. I felt a bit cheated, and a bit annoyed that he wasn't more concerned about checking me over. I felt like crying all the way home.

He was supposed to ring back this afternoon with my blood results. He didn't. I was sleeping, but had the phone beside me, it never rang. By the time I woke up, it was too late in the afternoon to get hold of him. I'll ring them in the morning. But I'm pretty unimpressed.

Overall, I think I'm going to be just fine, but I feel crappy, am still at least a little dehydrated, and expect a bit better care from my own hospital and team of doctors. 

[Amanda From OZ]

Sorry to hear about your bad experience and those crappy doctors. 

I also had similar stomach problems at the beg. and it got better after about 2 or 3 weeks. Hang in there i know its crappy.... 

I hope you feel better real soon.

Sending good thoughts your way.

Amanda
xxoo

[paddbear0000]

Oh, I hope everything gets straightened out soon! I'm keeping you in my thoughts and prayers! 

[angela515]

 

[Falkenbach]

I rang back this morning. The registrar advised they hadn't received my results (re the medication level) back yet, but my creatinine had gone up to 125 (it was 105 the day before).

But he went on to say he'd spoken with my nephrologist and the two of them don't believe it was my medication level causing the problems, and that maybe I had a virus. I doubt this, as there's no other signs/symptoms of virus - not to mention in the ED that all the other doctors (the ED doc, the renal registrar I saw on the day, plus the senior nephrologist she contacted by phone) all agreed with me that the medication is the likely cause.

So today I had another sleep (I'm just so exhausted) and missed a phone call from my nephrologist. He left a message saying he'd just received the results re my sirolimus level - he wants me to call him back first thing in the morning - and get this - he doesn't want me to take ANY sirolimus until I've spoken to him, and he wants to double check I'm taking the right dose. So - do they still think my medication level is not the problem? Don't you just feel like screaming I TOLD YOU SO, when things like this happen?

I have followed the prescription instructions to the letter, and I've checked to ensure the pharmacy dispensed the right dosage tablet, so as far as the dose goes, I'm doing everything right as per prescription. Evidently the levels are still way too high for me. So we will see what they have to say when I call them back tomorrow.

[angela515]

I agree, I wish they would listen to us (or other dr's) more often, and at least CONSIDER our opinion on what is wrong, or causing the problem, as they are not perfect and therefore not always right.

I hope you get it all straightened out soon and everything bounces back and your not as tired.