in hospital due to kidneys :(

[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

[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! ( 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 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 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.