in hospital due to kidneys :(

[malin]

Hi Everyone,

Thank you for your support and best wishes.

I am very very tired but will try to do some updates

I had three days of 1000 mg pred infusions and then on Monday I had my first RTX infusion, 1g in a 500ml saline mix, will have another round in two weeks time.

I still don't know too much about what is going in, have a doctors appointment next week. Doctors said kidneys are inflammed and some levels were at 190 when they should be around 70 - 100. They hope with the treatment things will go back to almost as they were before, with just minimal scarring but we will have to wait and see.

It was such a shock. My brother had come over from Sweden to visit for the weekend, on friday we went shopping and had just had lunch when I noticed I had 3 missed calls, voicemails and then another call from the doctor, saying I had to come into hospital to be admitted straigth away.

The hospital stay was disgusting as I should have started RXT the same day but because of f-ups it didn't get started until Monday evening. Will explain more when I have some more energy.

I am now on 60 mg pred daily, 30 mg lanzoprazole and nystatin to prevent thrush. I have also got co-trimoxazole 480mg twice a week and doctor said I will probably be started on Azathioprine next week instead of MTX.
I was wondering about that, being on Aza while doing RTX infusions at the same time? Is that a bit overkill or what is the reason? Will of course ask doctor when I see him as well but as we all know, its better to get as much info as pos. before appointments

[Psyborg]

I hope they've nipped everything in the bud Malin. I think staying on the maintenance drug along with RTX is pretty standard. I was kind of surprised when they did that for me as well.

[Yvonnea]

I was put on MTX while on RTX. Reason was that RTX can take up to 3 months to fully "kick in". I definitely saw improvement after about 6 weeks of taking the rtx.
Hope you are well on the road to recovery Malin.

[chrisTIn@]

Good to see you back here, Malin!
Hope you 'll soon have more energy...

[drz]

With those high dosages of steroids you should be feeling some effects. I found that just a hundred mg of steroids for my surgery yesterday kept me going all day with no fatigue. It also raised my BG quite a bit. Hope the meds are helping you and that you are feeling better soon.

I have had good luck with Azathioprine which is lucky for me since I can't take MTX due to kidney damage. Good luck with Pred taper down.

[Sangye]

I'm glad you're out, Malin.

Dr Seo told me that keeping someone on mtx or aza while on rtx is outdated thinking. They've since learned that rtx is strong enough on its own. He did add that it isn't necessarily harmful, just unnecessary. (Personally I don't agree that being on a chemo drug is fine unless it's absolutely warranted)

It doesn't make sense to use aza or mtx as a cover drug while waiting for rtx to kick in, since neither of them starts to work immediately, either.

[Lightwarrior]

Oh Malin,
I am happy you are improving, sorry you are having to go through this in the first place. Close your eyes and feel the burst of light and energy that I just sent your way.

[elephant]

Get better soon Malin!

[Debbie C]

Malin..we've never talked since I've joined the forum.But what a hell of time you've had...hope u get to feeling better soon !

[malin]

Thanks for all the best wishes n support!
It's been a bit of a rollercoaster lately, almost like being diagnosed again. I have now had 2 RTX infusions, don't know if I will do another one yet or not but have doctor's appointments in beginning of september to find out more. I now have a new rheumy as my "old" one is on a years sabatical, I have also got a renal doctor and he's sorting out a referal to addenbrookes vasculitis clinic for me so that we can have "shared care" with them and my local hopsital. Hopefully it won't take too long to get the referal sorted.

I am doing better at the moment, have more energy and so on but there's a few new things going on as well, have got small red dots on my legs and feet, like broken blood vessles, they don't itch or anything and are under the skin so it's not a rash but they are slightly worrying as I am not sure why they pop up?
My sinuses are better with the crusting almost completely gone now but I have some bleeding which my ent cauterizies? (I can spell it properly!) but it is still bleeding a little bit when I sneeze etc.

My kidneys are slowly improving so far, I am not sure what all the numbers mean but perhaps someone else does? This is part of an email that the renal doctor sent to me and to the doctors at addenbrookes: " Her creatinine was found to have risen to 180umol/L. Her PR3 titre was 26 and her CRP was approximately 50. She was treated with steroids and Rituximab and appears to be going into a remission with her last serum creatinine being 168umol/L."

My CRP went down to around 19 but then last week I had a blood test and it was at 68, I do think I had a bit of a cold at the time so don't know if that might have been why it was back up again? I feel ok now tho

The only other niggle I have at the moment is that my bladder feels a bit "funny", like I almost constantly need to pee, even when I do pee it doesn't feel like its emptying properly. Will bring this up with renal doctor on my appointment on the 3rd September. I am wondering tho if it could just be down to the fact that I am drinking alot of water all the time? Since this kidney thing happened I have been drinking water all day long.

Oh and I had a bad reaction to the azathioprine (although my liver enzyme test was fine) so had to stop it and rheumy wants me to try again after my next appointment with him (4th September) but renal doctor said he def. does NOT want me on aza at the moment. So confusing when they don't say the same thing! Who do you listen to? :/
I am on daily 60mg pred, lanzoprazole and bactrim 3 days a week at the moment, should be reducing pred in september if all bloods are ok

It's so scary tho, how it feels so brand new when I have already had my diagnosis since I was 16. Wegs is such an unpredictable pain in the bum!