in hospital due to kidneys :(

[malin]

hi! quick update from hospital!
was admited frday due to kidneys, tvey say the are inflammed. got iv pred 1000mg for 3 days then 60mg tablets. dont know how long for . getting rtx infusion tomorrow. scared n shocked but other than that feel ok. wil try to update more later.

[Hammy8241]

Take care Malin - You're in the right place. x

[mishb]

I'm glad you are in hospital getting expert care.

Wow, it was only last week you were wondering about the nose crusting and now its the kidneys. Has the nose cleared up at all?
shifty sly little disease.

Take care of yourself and I hope all comes good after this treatment

[chrisTIn@]

hi! quick update from hospital!
was admited frday due to kidneys, tvey say the are inflammed. got iv pred 1000mg for 3 days then 60mg tablets. dont know how long for . getting rtx infusion tomorrow. scared n shocked but other than that feel ok. wil try to update more later.

Hi Malin!
I'm sorry to hear your kidneys got inflamed. Like Michelle, I wonder if there's any connection with the nose-crusting you mentioned earlier. Could be that the crusting was a sign of a flare coming up. Are you able to consult your docs at this point? I sure hope the medication does the trick and eliminate the inflammation soon. Good to know that you say you feel ok. Hold on, and please keep us posted! :thumbup:

[drz]

hi! quick update from hospital!
was admited frday due to kidneys, tvey say the are inflammed. got iv pred 1000mg for 3 days then 60mg tablets. dont know how long for . getting rtx infusion tomorrow. scared n shocked but other than that feel ok. wil try to update more later.

Best wishes for quick recovery. Glad you are getting good treatment and hope they caught it in time.

[KathyB]

Sounds like you have done everything possible to get the best care, Malin. Wishing you a quick recovery and many good days ahead!

KB. :biggrin1:

[Sangye]

Oh shoot, Malin. I hope they get you squared away quickly and easily. :sad:

[pberggren1]

Hang in there Malin....you will beat this.

[HopeinTN]

Hope you get to feeling better real soon!~

[beeinformed]

Hi Malin!

I hope you can give us an update as to how you are feeling as I'm sure all of us here at the forum wish to know how you are doing.

[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 :p

[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...:hug2:

[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.

https://encrypted-tbn2.google.com/images?q=tbn:ANd9GcRGJJ_P86H_xDlfcbl2OGMFAec00j_cv ImXuQQOo5wenMAYVPtx9A

[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! :(

[Psyborg]

I had a rash like that last year. Well that was the end result, and mine was related to a flare at the time. If you are currently flaring then I'd say it's probably related.

[KathyB]

Hi Malin,

Like Bob, I had the "dots" all over my arms and legs during my initial flare. They eventually faded... Hope you keep feeling better!

KB

[Sangye]

Malin, I'm glad that you're doing better. The red dots sound exactly like a vasculitic rash. I'm concerned that they're still there, since even just high dose pred should be enough to get the rash under control. Please make sure your doctor knows about it.

The bladder symptoms sound like a bladder infection that's either brewing or being masked by the high dose pred. Important to get that checked out asap, since any infection can go wild very quickly.

[drz]

Glad to hear there has been some improvement and efforts to provide you good care. Dealing with confusing and conflicting recommendations is difficult and often very stressful. Do you have an advocate friend to help you with this? When I was in treatment on in-patient basis only one doctor could actually write orders but all the many consultants had to make recommendations and have meetings together to try come to consensus which my health care director then approved the treatment plans after hearing all the concerns and recommendations from all the doctors. She was a relative who did her own research and consultation with various medical people elsewhere to check on their recommendations and proposed treatment plans. It often took a long time it seemed many times but at least I felt decisions were deliberated and not made in haste and the outcome was pretty good for me. This process also resulted in several back up plans to deal with most contingencies and was generally rather reassuring to me since I was in no condition to make such decisions.

[jola57]

Malin, Im glad you are doing better. I had the rash at the height of my vasculitis but it went away quickly when I was put on ctx and pred. Do you still have it? Big and gentle hug to you :hug1:

[malin]

Hi Everyone!

Another update, the rash is gone, the bladder issues are getting better, I think it might have been an uti coupled with my period! :p ( i have very irregular periods due to my pill)
I had bloods done yesterday and appointments with renal doctor and rheumy next week, hopefully things are starting to get better. I am feeling much better than I did anyway but then on 60 mg pred and 2 rtx infusions I would hope so!

Had some bad news from work though, will probably be made redundant at the end of september, as if I needed the extra stress! But have decided to do my best to be positive and see it as a new, fresh start instead! Am now on lookout for full time employment :o I hope that with my new doctors and treatment I will feel well enough for it, and perhaps having a job that is more positive and fun, it will give me more strenght and hope to move on in life! :)

[Debbie C]

Good Luck with everything Malin. I sure hope things start looking you for you soon

[BrianR]

Hi Malin.

I hope all goes well for you (I am sure it will!) and look at the work change as a positive thing; it almost always is so... carpe diem!

Brian

[malin]

Have just had appointments with both Renal and Rheumy. Things are getting better at the moment, my creatine levels are going down, was around 190 when I was admitted to hospital and it is down to around 128 at the moment. My CRP was about 68 and is not down to 6! I am generally feeling much better than I was earlier in the summer/spring. Have been told I can start tapering pred now, so went from 60 mg to 40 mg today :D If things go well I might be able to drop to 30 mg in two weeks time, then 20 mg for two weeks and then down to 10 mg and then things will go a lot slower from there.
I am still on bactrim, 480 mg three times a week and we're going to try Azathioprine (imuran) again, starting with 50 mg a day for about 4 weeks, then go up to about 100 or 150 mg depending on my blood results. I am a bit wary about Aza as I had a reaction to it before, I woke up with very bad shaking/rigors and couldn't stop sweating, felt like death warmed up for 2 days after but Renal doctor thinks it might have been the inflammation/infection due to kidney problems that casued it, so he said "be brave" and try Aza again, if it doesn't work out we will try something else. I think Rheumy said if Aza doesn't work out we will try Mycophenolate, which I think is CellCept?

Anyhow, I hope the aza will work out ok this time, am starting 50 mg tonight, atleast if I have a reaction we will know for sure its the aza this time and what to do about it, but fingers crossed!

[Dirty Don]

Good luck on the AZA Malin. Be careful on tapering pred too fast, has caused reactions in the past. Mine was tapered over months, not weeks, and I was on about same dosage as you.