Labs Monitoring

[Rose]

Since drug induced remission in October 2008, I feel i have never been monitired adequately. To date 3 different doctors have overseen my treatment and each one has done 3 monthly labs. I recently consulted with a Nephrologist and asked his opinion on how often my kidney function should be monitored and he says as long as I am stable 6 monthly should be fine.

I have renal involvement (stage 3 CKD) and so I am worried about a 'silent' flare and feel that I should be monitored more frequently. I do what I can to monitor rmyself by checking my BP frequentlty, urine dipsticks for protein etc and check for fluid retention. But is this enough? I did mention to one doctor that WG patients in the USA are monitored monthly and her response to that "because the doctors are afraid of being sued"!!! Just thought I'd mention that so you get an idea of what I have to deal with.

I haven't had labs done since end November last year as my Rheumy now says 4 monthly labs is adequate. I am also on Cellcept 750mmgs twice daily and that alone should call for more frequent monitoring.

Any suggestions on how to approach this subject with the doctors without coming across as if I am telling them how to do their job??

[pberggren1]

I would say you need labs more than once every 4 months for sure. I am sure my doc would not let you go without at least once a month

If it were me I would be totally up front and explain it your doc. If your doc does not comply then I think I would start to look for a new one.

[mishb]

At the beginning I was on fortnightly labs and then at 6 months went to monthly labs and now I am on every 3 months. I guess every Country has different ideas.
I think every 3 months would be okay especially since you are also doing your own tests and know to go to your doctor straight away for labs to be done......if your own tests were elevated or changed in any way.
Another home test I would add is monitoring your blood sugar levels, if you are on pred.

[delorisdoe]

At the beginning I was on fortnightly labs and then at 6 months went to monthly labs and now I am on every 3 months. I guess every Country has different ideas.
I think every 3 months would be okay especially since you are also doing your own tests and know to go to your doctor straight away for labs to be done......if your own tests were elevated or changed in any way.
Another home test I would add is monitoring your blood sugar levels, if you are on pred.

I have always wanted to know what a fortnight is.

[Debbie C]

I have a appt. to see my reumy in a few weeks and I called him and asked him if I could get a urine test done to check my kidneys. I've been having alot of pain on my left side and towards my back and he said it wasn't necessary to have any urine tests and he also never checks my anca levels.
I had to have a colonoscopy and a endoscopy done a couple of weeks ago and every thing came but o.k. and I told that dr. I was having pain on my left side also...so whats he do..order an echo of my liver(on the right side) so I asked the lady if she could just look on the other side real quick,she didn't want to but did any way. Yesterday they called me from the hospital and the radiologist saw something on my kidneys so tomorrow I have to go get an echo of them. DRS....you gotta love em!!!! I am trying to find a kidney dr. in the area that know something about Wg.....the search is on.

[Lightwarrior]

Debts, I am so sorry you had to go through this and irritated that your rheumy was so unconcerned about your left sided kidney pain. Do you have other choices for a rheumy? Do you have the ability to get to a wegs specialist? I am really proud of you for pushing the tech to take a.look. I can't tell you how many times I have had to guide and force my own care. Good job at keeping yourself alive.

[Al]

I have a appt. to see my reumy in a few weeks and I called him and asked him if I could get a urine test done to check my kidneys. I've been having alot of pain on my left side and towards my back and he said it wasn't necessary to have any urine tests and he also never checks my anca levels.
I had to have a colonoscopy and a endoscopy done a couple of weeks ago and every thing came but o.k. and I told that dr. I was having pain on my left side also...so whats he do..order an echo of my liver(on the right side) so I asked the lady if she could just look on the other side real quick,she didn't want to but did any way. Yesterday they called me from the hospital and the radiologist saw something on my kidneys so tomorrow I have to go get an echo of them. DRS....you gotta love em!!!! I am trying to find a kidney dr. in the area that know something about Wg.....the search is on.

Debra, not all Weggies have kidney involvement, but all Weggies are candidates for kidney involvement, and should have a regular renal panel. These things can sneak up on you in a hurry. You should have have a nephrologist on your team. While the rheumy takes the lead most often in WG cases, it is worth noting that not all rheumies are good with vasculitis. In my experience, though, most nephros know enough about WG to take it seriously, especially if the diagnosis has already been made. By the way, there are many reasons for back pain, but it is, in fact, one sign of kidney distress. And if the ultrasound has any "shiny" areas, have a serious and immediate talk with the nephro. Be sure he knows about the WG.

For most people, it is not necessary to check ANCA titers regularly, at least past the initial diagnosis. However, it is a useful test to monitor how well CTX or RTX is doing its job. Also, for a few people, ANCA corresponds quite directly to disease activity.

Al

[pberggren1]

I have always wanted to know what a fortnight is.

2 weeks..........

[Rose]

Thanks to everyone for their input. I see my rheumy next week and I will insist on monthly monitoring. I would just like to say that if I am aware of a problem i could contact my Rheumy at any time and blood work would be ordered. The concern is the damage that might be happening without being aware of it especially a silent kidney flare.

[Dryhill]

2 weeks..........

Well strictly speaking Phil, fortnight means fourteen nights coming from the Old English expression feowertyne niht. But that is all history, after all this new device the horseless buggy has us all excited and wondering if it might become popular.

Jim