Anyone have kidney pain? Tingling in legs?

[aewaustin]

Quick background... Had flare in December 2010, I know a flare is starting when I get this tingling in my legs and at the same time I start getting blood in my UA's. The leg thing is not painful really, but it feels like sunburn on the inside of my legs, just a constant tingling/burning. It tingles enough that I have to take Ambien every night to sleep, nothing else can overcome it. When things great really bad then the tingling gets pretty intense, it not really painful, but not pleasant either, and in addition I get a pain in my right kidney. The kidney pain is intense, like really intense, pain pill intense. This past Feb/March I got to the point that I needed pain pills and then when I got the RTX infusions the pain went away in days. After the first infusion I was basically pain free and off pain pills for two months and then it gradually started again over the past month, now I am on pain pills everyday.

Went to the doc and she just does not get what is going on, but she is awesome and is helping me to limit the pain the best we can. Thankfully the RTX is working and the protein in my 24 hr. UA is going down by about 30 points a month, started at 310 and now am at 252. The fact that the RTX is working though makes it more confusing, technically pain should be going away and not getting worse. She thinks it is nerve and unrelated to Wegs, and wants to give meds for that, but I just don't think it is... I think it is Weg's related...

Does anyone else have this? It just is so weird. Especially the leg thing, although in my first go round in 1992 I had severe vasculitus in my legs so makes sense that something is going on with my legs. As I sit here typing this my legs are tingling/burning like crazy and it feels like someone is grabbing my kidney and squeezing away. Sigh...

[Psyborg]

I had the burning sensation when I was diagnosed, but not much since then. Is this maybe nervous system damage that is being irritated by the flare? I'm honestly not sure, I don't have as much experience as the other wiser folks on here, so I don't want to speculate too much. But I definitely had the same sensation myself.

[Sangye]

I think if you've had it before and it always correlates to Wegs activity you have to assume it's an accurate indicator for you. It sounds like they need to do further testing to find the cause-- ultrasound of the kidneys, maybe a biopsy. Are you seeing a Wegs specialist or having one consult with your doc?

[aewaustin]

Sangye, before when this came up before I had done all sorts of testing (ie spent all kinds of money) and they did not find anything so I really do not want to go down that road especially if tests show that my kidneys are improving. I saw Dr. Langford back in March and am following up with an Austin doc here monthly, so I am monitoring everything and am not worried that my kidneys in any danger. Basically the plan is for me to just suck it up until the next round of RTX which will hopefully be in September, and then hope that the pain goes away like it did after the first round of RTX. My doc has offered to try other kinds of meds to help, but I am not really excited about any of her suggestions so just want to stick with the pain pills that I know. But just so curious to know if anyone else has something like this and what their experience has been...

[Sangye]

Since the pain is on the right, it's possible that it's your gallbladder. Usually it causes pain under the front ribs but not always. Mine gives me trouble every so often and it feels like right kidney pain.

For your last rtx treatment, did you do the 2 or 4 infusion protocol?

[marta]

Hey Anna,

Sorry to hear about this new-ish development. I've been thinking about you recently. I can't add anything wise to your question because I've not been down that particular road, but I am going to say that I've been having some headache activity lately so I went to my doc (the good one - the rheumy) and told her about it and said I'd like to do something to nip it in the bud before it goes to a place that we have to start all over again with the heavy duty meds and high pred, and she agreed and has put me on imuran. I just took my first one today. You and I had our RTX at the same time, same day in fact - I was thinking about you getting infused while the magic elixir was getting pumped into me, so I think we might be getting some of our old symptoms at the same time.... just food for thought.

I also told my doc that I would like to work towards a drug free remission and she told me she doesn't believe that it really works. She said she believes (and she made sure I know this is her opinion only) that Wegs is always smouldering underneath and we don't know what sets off a flare so she believes that a maintenance drug for ever is the way to go the longest without having a flare. I said I'd really like to try going med free and she said in that case I'll have to find a different doctor. She sounded somewhat serious, but I think I'll try and work on her when I get to a better place, but that's a ways away yet. I know you've been med free for a long time, but maybe popping some maintenance drugs for a bit might help and then you don't have to go on pain meds, which we all know what can happen with that route....

Hope you feel better my friend. Sending you good vibes, and still looking forward to going for a run or a bike ride together sometime in the future... or even a ski :)

[Sangye]

Wow Marta, your doctor really needs to talk to the Wegs specialists. That is not their belief at all (about staying on maintenance meds). But like you said, it's not a conversation that needs to happen right away. Maybe she'll learn about it on her own.

Glad you jumped on the headaches before they got out of hand. Easier to lull the Wegs dog back to sleep when he's just got one eye open. :wink1:

[pberggren1]

I have to agree with Sangye here Marta. My doc has stated many times that it is always the goal to be med free. And I know for a fact he speaks from experience because he has worked with Dr. Adou, Jayne, Bacon.

[aewaustin]

I can be the poster child for drug free wegs :) I was drug free for 10 years before anything, and then after a year I was drug free for another 5 until this little round... Hoping for poster child status again. Marta, it is totally doable!!!

You guys have given me stuff to think about, need to stress at my next appt that I really do feel it is weg's effects and want to deal with it with weg's meds.

Sangye, the pain I am pretty sure it is from my kidney because it also causes blood in my UA's when it comes...

Good times! :p

[JanW]

Same hear Marta. I do believe that the top experts believe that med free is a goal that is achievable in many cases, and, that, in fact, if a flare does start to occur, if a patient is aware and not in denial it can be treated fairly quickly, and that this might be preferable to being on a lifelong immunosuppresssive regime, which comes with its own risks.

Personally, I think that my doc would feel more comfortable with a rtx dosing regime, even though I have been completely asymptomatic on mtx, vs having no 'coverage' at all, but he was also willing to try to have me go for a drug free remission and so far, so good on my reduction of medication.

[marta]

Thanks guys, I will continue to pursue a drug free goal, but I'm still quite a ways away from that, so no need to stress out about it right now (even though it bummed me out for a bit after the appointment - but a bunch of other great stuff came out of the appointment that trumped it). I totally trust my doc, she is a Weg/Vasculitis specialist and has worked at Mayo and with Dr. Specks. She told me that her opinion is based on what she has seen in her practice with her Wegs patients. I have some time still to solidify our relationship before I start challenging ;) I'm still tapering pred (and she's conservative, so we're tapering 1mg per month - I'm at 13mg now)

Anna, I hope this clears up for you. You are a poster child in more ways than one. You're a total inspiration and I too hope to be able to pull off the achievements you have after dealing with this WG speed bump in my road of life. We'll chat on Skype.

[aewaustin]

Thanks Marta, your comment made my day, and I feel pretty crappy today, so the pick me is much appreciated :) Will look for you on skype.

[Rose Cozzette]

Hey Anna,

Sorry to hear about this new-ish development. I've been thinking about you recently. I can't add anything wise to your question because I've not been down that particular road, but I am going to say that I've been having some headache activity lately so I went to my doc (the good one - the rheumy) and told her about it and said I'd like to do something to nip it in the bud before it goes to a place that we have to start all over again with the heavy duty meds and high pred, and she agreed and has put me on imuran. I just took my first one today. You and I had our RTX at the same time, same day in fact - I was thinking about you getting infused while the magic elixir was getting pumped into me, so I think we might be getting some of our old symptoms at the same time.... just food for thought.

I also told my doc that I would like to work towards a drug free remission and she told me she doesn't believe that it really works. She said she believes (and she made sure I know this is her opinion only) that Wegs is always smouldering underneath and we don't know what sets off a flare so she believes that a maintenance drug for ever is the way to go the longest without having a flare. I said I'd really like to try going med free and she said in that case I'll have to find a different doctor. She sounded somewhat serious, but I think I'll try and work on her when I get to a better place, but that's a ways away yet. I know you've been med free for a long time, but maybe popping some maintenance drugs for a bit might help and then you don't have to go on pain meds, which we all know what can happen with that route....

Hope you feel better my friend. Sending you good vibes, and still looking forward to going for a run or a bike ride together sometime in the future... or even a ski :)Marta, I recently had headache and when the preds was increased it went away. ??? who knows...

[marta]

Thaks Rose,

I'm now at 12mg - the lowest I've been at since the start of it all in May 2010. I'm so excited and don't want to go up on the pred just yet. I will see how the Imuran kicks in. I'm on day 6 of it now. Seems to be subsiding somewhat. Anyone know how long it takes for Imuran to do it's magic?

I'm happy to hear that you don't have the headache anymore. Wooo hoooo!!!! May it stay that way indefinitely.

[pberggren1]

I think Imuran starts working farily quickly like ctx and mtx.

[Rose Cozzette]

Thaks Rose,

I'm now at 12mg - the lowest I've been at since the start of it all in May 2010. I'm so excited and don't want to go up on the pred just yet. I will see how the Imuran kicks in. I'm on day 6 of it now. Seems to be subsiding somewhat. Anyone know how long it takes for Imuran to do it's magic?

I'm happy to hear that you don't have the headache anymore. Wooo hoooo!!!! May it stay that way indefinitely.I shouldnt talk too fast as had slight headache today but is now gone. staying on 5mg of preds for now daily. also we have some humidity right now and everyting still affects my sinuses so that could be the headache cause. usually we are 15% or less so 25-30 % is quite a change.