Joint problems and medications?

[Falkenbach]

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.

[Amanda From OZ]

Hows it all going Cycobully? 

[Falkenbach]

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 

[angela515]

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.

[Falkenbach]

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).

[angela515]

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.

[Falkenbach]

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.

[angela515]

Sheesh, that's not good. Glad your better now and hopefully it stays that way!

[Falkenbach]

Yep, now once the ankle pain and headaches go away, I will really by happy!

[paddbear0000]

Cyco--I'm glad to hear that things are slowly getting better! 

[Falkenbach]

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. 

[Romona]

Sorry things aren't going well. 

[Falkenbach]

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. 

[Falkenbach]

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*

 

[Amanda From OZ]

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

 

[charee]

hope someone can help cyobully , thinking of you

[Deanne]

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.

[Falkenbach]

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.

[Deanne]

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.

[angela515]

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.

[Falkenbach]

Hi Angela

What is AVN?

[angela515]

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.

[Falkenbach]

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.

[Falkenbach]

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! 

It's all very odd.

[Falkenbach]

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).