How do you know if your meds are working when looking at your labs?

[HawaiianPrincess]

Just wondering what to look for when viewing your labs to see if your meds are working? We've only had 2 appointments with our Rheumy Specialist, but have had more labs run done in the last two weeks due to a recent hospital stay. My hubby, Steve is starting his 3rd week of Imuran, (Azathioprine, 150 mg daily) 60mg Prednisone daily.

So far, he's had basic metabolic, CBC w/plt & AD, manual diff, lipase, T4, urine micro. He hasn't had a recent sed rate. Last one was 18, but that was when they were trying to diagnosis him in September. Not sure if that's considered high? Our Rheumy hasn't explained much with that.

[annekat]

Just wondering what to look for when viewing your labs to see if your meds are working? We've only had 2 appointments with our Rheumy Specialist, but have had more labs run done in the last two weeks due to a recent hospital stay. My hubby, Steve is starting his 3rd week of Imuran, (Azathioprine, 150 mg daily) 60mg Prednisone daily.

So far, he's had basic metabolic, CBC w/plt & AD, manual diff, lipase, T4, urine micro. He hasn't had a recent sed rate. Last one was 18, but that was when they were trying to diagnosis him in September. Not sure if that's considered high? Our Rheumy hasn't explained much with that.

Others can be of more help regarding the details of the labs, but my intuition is that it's a little early to see a lot of change. I'm remembering that your rheumy said neuropathy is not a symptom of WG, so thinking that you need another rheumy, since we all know it is. But you already know that and have some ideas for other medical advice, I know. I'm just hoping he does see some improvement soon!

[Dirty Don]

So far your rheumy is off base and reading from a book...keep looking for a better one skilled in WG or at least AIs. As for sed rate, 18 is a bit high but not dangerously so. Without knowing which tests to administer, the doc is getting close but not exact info about the disease even if he/she doesn't know exactly what to do with it. Best to you.

[annekat]

So far your rheumy is off base and reading from a book...keep looking for a better one skilled in WG or at least AIs. As for sed rate, 18 is a bit high but not dangerously so. Without knowing which tests to administer, the doc is getting close but not exact info about the disease even if he/she doesn't know exactly what to do with it. Best to you.

I also seem to remember her saying that joint pain is not a symptom of WG. A quick internet search shows that not to be true and many of us know it from first hand experience. Perhaps for some it is caused by pred or other meds. Not for me; it is a symptom and I expect to feel it again as I continue tapering pred. I echo Don's sentiments above. However, I know it takes time to make these decisions, get appts., etc. So I understand your sticking with the rheumy until you work something else out, as switching docs is not easy and he needs treatment now. One other thing, I wonder if Imuran is a strong enough immunosuppressant right now. Not that I'm any expert on that, have never used it, but it seems unusual on here for that to be the one people are started on when their case is fairly severe.

[HawaiianPrincess]

Dealing with this Rheumatoid Specialist is frustrating! I find that I argue & I'm skeptical with her observations & responses back to my hubby when he tells her his symptoms. Again, her reply is, "that's not classic with Wegener's disease." Not sure what handbook she's been reading, but we're definitely NOT on the same page with her. We want to switch to another specialist, but there's over a month wait to see a new one. I'm worried that during that time, he may start having lung & kidney issues, who knows with this disease what path it might take. Maybe it's a chance we have to take so we can be set up with a better MD.

I have asked her about Imuran and how aggressive this med is when trying to immunosuppress an active autoimmune disease. She claims that it's just as effective as methotrexate, but easier on his liver. His liver enzymes have been elevated due to all the ibuprofen he had been taking for his aches and pains. Looking at his most recent labs, his wbc count is normal, liver enzymes normal, creatinine normal, chest xray clear, urine clear. It actually looks great, although he said he feels awful.

Thank you for your thoughts & advice on this. We may just need to start now & see if we can get in sooner to a new Specialist. I'll keep you posted.

[Pete]

If Steve's labs are close to normal, and he's still in pain, I'd be looking for a new doc now! Sounds like you no longer trust the current doc. That's not a good situation at all!!

You can probably get through the next several weeks without too drastic deterioration in his condition. A new doc GPA/WG specialist ought to be able to keep the disease in check while providing more effective pain management.

Good luck!

[annekat]

It sounds like she has a false sense of her understanding about Wegener's, spouting off about what is "classic" or not, when WG has so many variations in the way it presents. I forgot if you said he was given any RTX infusions before being put on Imuran. If so, that would make more sense. If his labs look good, you perhaps needn't worry much, although I'd still want another doc given the unpredictability of WG. His not feeling well could still be from the side effects of the meds. Many of us take MTX and it's not a problem as long as our liver data is monitored. And we aren't supposed to drink alcohol. But I've gotten the feeling it can take years for any liver problems to show up, as in the case of my neighbor with RA whose labs were fine for 12 years. I would rather have a more experienced WG doc weighing the pros and cons of different meds. Is he on Bactrim (sulfa antibiotic), to prevent lung infections that are harder to fight off while immunosuppressed? As for lung and kidney involvement, yes, those need to be watched, but chances are he won't get those anytime soon now that he's being treated and his labs look good. I didn't get my lung involvement until after 2.5 years of having undiagnosed and untreated WG. Presently, I just have ear, nose, and sinus involvement with coughing from the bronchii trying to expel stuff that dripped down from my sinuses. Good luck, and we look forward hearing more!

[HawaiianPrincess]

Steve doesn't drink alcohol, he's never acquired a taste for it. He actually hates alcoholic beverages. Back when he was in his mid 20's, he went on Accutane for acne. He had to get his liver enzymes monitored monthly. He had to stop taking it because his liver didn't tolerate it. Yesterday he had some labs drawn that included hepatitis A,B,& C. He was previously taking close to 1600 mg of ibuprofen daily for his aches & stiffness in his legs. That's what caused his stomach irritation, & now he's taking 40 mg Prilosec daily which helps. No RTX infusions, only methotrexate 15mg weekly. He only did I week of that after we saw how elevated his liver enzymes were.

Sadly, he's allergic to sulfa drugs, especially Bactrim. He broke out in a horrible red splotchy rash after taking 2 doses.
I've already called another Rheumatoid Specialist and I hope to hear back from their office by Monday. Hope you're feeling better! Hugs!

LeAnn

[annekat]

Thanks for being so thorough in your answers! If he can't take MTX because of liver numbers, that explains the Imuran, unless she were to go with CTX, usually reserved for severe cases... or RTX, which is becoming preferred. Sorry about the sulfa allergy.... I remember my ENT doc asking me that back when he was treating me for a sinus infection with Bactrim. I wonder if there is something they could use instead, but I haven't heard of anything... I wish the pred would do something for his aches and pains! Good for you, being proactive and making a call to another rheumy. The trouble seems to be that a lot of them have plenty of experience with arthritis and maybe with other more common things than WG, like lupus.... but fall short with vasculitis because they don't run into it much and may have forgotten a lot of what they learned in med school!

[drz]

If your doctor seems uninformed about Wegs or GPA as it is now called, it might help to print out the info on Wegs from Cleveland clinic and Mayo Clinic or similar reference source and bring them along. There should NOT be much debate about typical symptoms of Wegs. You could also put her name on a mailing from Vasculitis Foundation as they will send her info free on dignosis and treatment.