I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Falkenbach on August 25, 2007, 03:24:35 AM
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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!
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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.
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How long ago did you have your transplant Romona?
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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. :waving;
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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!
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:waving;
Well hopefully we can both get this figured out so we feel better!
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I'm sure hoping so.
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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? ....
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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.
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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. :urcrazy;
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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 :rant;
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.
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I am sorry Cycobully- it just seems like one thing after another. Hoping the biopsy goes well. Sorry you are going thru this.
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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.
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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! :lol;
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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*
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I hope changing that medication will make a difference. I will have my fingers crossed for you also. :cuddle;
Amanda
xxoo
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Hope it fixes the issue Cycobully. :grouphug;
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Cheers guys! :beer1; I'm feeling pretty positive about it - well, hopeful might be a better word, but hopeful is a positive thing!
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Cheers guys! :beer1; 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.
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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. :(
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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.... :cuddle;
I hope you feel better real soon.
Sending good thoughts your way.
Amanda
xxoo
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Oh, I hope everything gets straightened out soon! I'm keeping you in my thoughts and prayers! :cuddle;
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:grouphug;
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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.
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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. :grouphug;
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I called back this morning and was told not to take any more Sirolimus until further notice. I have to have blood tests tomorrow, and we'll see what they tell us.
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Hows it all going Cycobully? :cuddle;
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Hi Amanda
Well, after a few days of not taking the sirolimus, the levels came into the normal range, so they have started me back on it at half the dose (now 2mg per day). But by GOD this drug gives me headaches. Constant headaches, which Panadol doesn't do a damn thing for. I have 4 days of work lined up next week, and I think I'm going to struggle with it.
I still have some residual pain in my ankles, I'm presuming I still have some bone marrow inflamation from the cyclosporin, but largely the joint problems and fluid retention have improved out of sight, so there is an upside to being on the sirolimus over the cyclosporin. Let's just hope these headaches go away!
So that's where it's all at, at the moment - so mostly pretty positive I think. Thanks for asking :)
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What is your other anti-rejection med besides the Rapa? And how is your creatnine since you weren't taking your Rapa, and now it's been lowered. I'm also on Rapa, so it's nice to at least talk to someone who is also on it, so nobody here is on it but you and me.
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Hi Angela
My last creatinine (from Thursday just gone - re-started sirolimus on Friday) was 108 - I'm usually around 100, or the low 100's, so it hadn't changed much. It was actually higher (124) earlier in the week when I was still taking the sirolimus at 4mg, because it was making me sick in the tummy, and therefore dehydrated.
I see my neph again tomorrow, and they'll take more bloods, so in a few days' time I'll know what the creatinine is doing now that I'm back on the drug.
Oh, and my other anti-rejection drug is mycophenalate (sp? - aka Cellcept).
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So the Rapamune was making you sick? Eek, that's not good. I currently take 4mg everyday at noon, have been on this dose for over 4 months now.
I take Prograf as my other anti-rejection med.. I am glad your creatnine is coming back down, and hopefully they can get your meds under control where you don't get sick! That's no fun. :(
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So the Rapamune was making you sick?
By "sick", I mean Norovirus. It lasted a week. It was so hard to maintain hydration!! I checked into the hospital ED (ER) for some IV fluids after a few days. Didn't want to land in hospital for a week like last time I got ill and dehydrated.
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Sheesh, that's not good. Glad your better now and hopefully it stays that way!
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Yep, now once the ankle pain and headaches go away, I will really by happy!
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Cyco--I'm glad to hear that things are slowly getting better! :cuddle;
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Doing my 4-day work assignment atm, I'm half way through and not coping well. The headaches are incredible, and the joint swelling and pain by the end of the day is just terrible. Makes walking to public transport very difficult. :(
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Sorry things aren't going well. :'(
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Guess I'll just have to rest again next week, and see how things go after that.
But we really need the money right now, which is why I want to work. Our grocery bills (everyone's grocery bills!) have sky rocketed with this horrible drought we've been having (me suspects the supermarkets of using that as an excuse to profiteer, to a degree - only SOME of the price increases are justified or valid), and on top of the interest rate rises we've had on the mortgage - well, I guess you all know the story. It's the same for everybody. :)
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K, I'm just bumping this because I am now 6.5 months post-transplant and there really is no improvement in my joint problems and I am still looking out for anyone who may have had this experience post-transplant. Without being loaded with over-the-counter painkillers, I can't do anything much at all. Getting to work (and home) every day is very difficult, though I am enjoying the work.
I am also suffering fatigue, which is disappointing because that was the major problem I had PRIOR to transplant. It went away after transplant, for quite some time. Now it seems to be back, and again I put this down to medication :(
But this joint problem - it's seemingly fairly severe and not letting up despite time, and medication changes. But I feel SO ALONE in this, no one else I speak to anywhere (face to face, or via internet) seems to have experienced this. AND I DON'T KNOW WHAT TO DO NEXT. I can't exercise, I'm putting on weight, I can't do much around the house, I can't walk my dogs..... I'm 32 years old, and I feel so.... DISABLED.
*cries*
:rant;
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I'm sorry your are feeling so crappy, but ranting at times like this is always good.
OK well i don't have much advice for you about the joints, other then what i said before but i do totally know what you mean when you said your energy level is low, a lot of my friends down at clinic feel the same, and the doctors said its because when they first give you prednisone it gives you this big buzz and boost of energy, and then it kinda dies town... well thats what they told me.
I will ask around and see if anyone has experienced the same thing to deal with the joints.
Thinking of you.
Amanda
xxoo
:cuddle;
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hope someone can help cyobully , thinking of you :cuddle;
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Are you on prednisone by chance? I was on high doses of it to treat my FSGS a few years ago and had awful joint pain. It took until I was off prednisone entirely for a couple of months before I could walk without pain again. I can't fully bend my knees anymore.
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Thanks everyone.
Deanne - yes I'm on prednisolone, but only 10 mg (started on 30 mg straight after transplant) - what kind of dose were you on?.
At 6 months post transplant, apparently they usually decrease the dose to 7.5 mg, but as I had a recent immuno-suppressant change (from cyclosporin to sirolimus), they want that to stabilise first before reducing it any further. I believe I'm expected to be on Prednisolone for 1-2 years. God, I can't go through this for that long.
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I was on 60 mg of prednisone and started having muscle and joint problems within two weeks. With the joint problems, it got so that I couldn't walk after I got up some mornings until after I took my morning dose of prednisone and waiited for it to kick in. When I started lowering my dose to come off it, my feet were in constant pain when I walked. I think that lasted for a couple of months after I was completely off it.
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That's weird you ha pain while ON prednisone. I could understand getting joint probs from prednisone and having pain while OFF of it, but not ON it. Weird. I was on prednisone, very high doses, talking over 80+mg a day on the pill and as high as you can pretty much go on Solumedrol (IV prednisone) for months at a time. I was on prednisone itself for over 11 years. I have AVN caused by prednisone, and my joints are literally dying and hurt like a bitch, but on prednisone they don't hurt on a high enough dose... however I'm not allowed to go on it so, that sucks. Anyways, just wanted to comment on that.
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Hi Angela
What is AVN?
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Hi Angela
What is AVN?
Here is my thread about my situation with my AVN: http://ihatedialysis.com/forum/index.php?topic=4517.0
And here is the short definition of AVN:
Avascular necrosis is a disease resulting from the temporary or permanent loss of the blood supply to the bones. Without blood, the bone tissue dies and causes the bone to collapse. If the process involves the bones near a joint, it often leads to collapse of the joint surface. This disease also is known as osteonecrosis, aseptic (bone) necrosis, and ischemic bone necrosis.
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Interestingly, I went shopping with my sister and her best friend, Rosa, yesterday (my sister is getting married, and Rosa and I are the bridesmaids, so we were dress shopping).
Rosa has Crohn's disease and intermittently has to take high doses of prednisolone (prednisone). Apparently she has problems with quite bad joint pain when on prednisolone, as well, like Deanne.
It's all very odd.
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Interestingly, I went shopping with my sister and her best friend, Rosa, yesterday (my sister is getting married, and Rosa and I are the bridesmaids, so we were dress shopping).
Rosa has Crohn's disease and intermittently has to take high doses of prednisolone (prednisone). Apparently she has problems with quite bad joint pain when on prednisolone, as well, like Deanne. And Angela's situation is completely different again.
And who knows where my situation comes in! :urcrazy;
It's all very odd.
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Angela - thank you for your info regarding Avascular Necrosis.
I continued to complain to the doctors about my joint problems. They were quite empathetic, and arranged for a second MRI scan.
The scan showed no evidence of AVN in my joints, so that is good news!
The bad news is, no one can really explain why I am still having this pain! It HAS improved, hopefully will continue to do so. I am more than 9 months post transplant now, and still can't do normal exercise - tho at least I can walk pretty well now. (lucky my job doesn't involve much walking).
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I continue to have pain as well. The last few days, when I get up from sitting I have pain until I move around a bit. :)
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Spoke to my doctors again today. They think my parathyroid may be the problem. Gawd, I don't feel like more surgery just yet.
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Fingers crossed it won't come to surgery :cuddle;
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Hope you get some answers soon. You've been hanging in through so much hard stuff. :cuddle;
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Thanks everyone, but at least it wasn't AVN. I think Angela is a lot tougher than me!