What The Heck ?!?!?

[Stephanie78]

So, the week of Christmas we had incredible news from Johns visit. Remission was the word given. Then today I get a call from his doctor (I guess they had other tests out still) and were informed that the RTX was wearing off and the "CELLS" are coming back! WHAT THE HECK?!?!? So now he has to go back to UNC on Friday for round 1 of his 2 part RTX treatment. Really?!?! Can you say DISCOURAGED?? I hated calling John and telling him. I'm so over this crap!

[Brooke]

When was the last time he had Rituxan? My doc wanted me to have more than one round of Rituxan, so I had 4 infusions in April 2010 and once my BCells came back, I did anther round in April 2011. So I don't think it necesarrily means he is flaring, they probably think another round of infusions will be beneficial.
How many rounds of Rituxan has he had?

[Stephanie78]

In July he had his first treatment, August was his second. He had 2 treatments of Cytoxan to start off with in June (as well as oral Cytoxan for 3 months). He had 7 Plasma Exchanges in August.
His ANCA has been negative the past 2 visits to the doctor (so since November).
His doctor stated 2 weeks ago that he "may" have another round to be on the safe side BUT at that time the BCells were no where mentioned.
It's just so frustrating.... The part that scares me is that he had a "cold" begin a week ago (which is sinus issues is what started his flare last time) . Ugh!

[Sangye]

Stephanie, it's very common to need a second rtx infusion to maintain remission. Some of us have to get them regularly to stay in remission.

It should continue to work for 6-12 months though. If it wears off faster he may have to switch to the 4-infusion protocol (ie, 1 infusion a week for 4 weeks). I did the 2 infusion protocol once last year and it didn't work. I had to do my usual 4-infusion protocol within a couple months.

[pberggren1]

I'm curious to know exactly what level his B cells are at.

[Stephanie78]

Sangye, that definitley makes me feel better to know that it is "normal" for a WG patient to have more infusions in remission.

Phil, I'm curious about that as well. Funny how you realize the questions you should have asked AFTER you have the conversation. John has two main doctors (Falk and Kidd). In Falks office there are numerous other doctors who John deals with once in a while. Dr McGregor is a colleague of Dr Falks (Who John has seen before). She is the one who called to inform us of the results and the need to come back for RTX. I then emailed Dr. Kidd because I was quite confused. (Also for a referral for a hotel so that we could get the deeply discounted price for Hospital Patients). He said that there were "signs" of B Cells coming back. He also said that Johns Creatine levels were continuing to go up. He had an issue with this in September and they put him in the hospital for fear he had an infection of some sort. They finally decided it was because he was not eatting/drinking like he should (He was still losing weight). However now he has gained quite a bit of his weight back (about half of what he lost) and the numbers are still "slowly" going up. He said they will possibly do a Ultrasound OR MRI of his kidneys on Friday as well. Also mentioned that he "may" have to undergo another kidney biopsy.

He says he feels fine. He did say he has felt more worn out for the past week or so then before. We will have the chance to talk with Dr. Falk on Friday so we will have a chance to ask more questions.

Dr. Kidd called back later (after I posted the original post) and said it is more of a "PROACTIVE" then "REACTIVE" so that makes me feel better.

[Al]

Stephanie, as annoying as this is, I wouldn't worry about this too much. "Remission" is a curious term for weggies. It means, mostly, that inflammation is not currently active, not that we need never to worry about being sick again. We are all aware that lifelong vigilance is where we are at; we go about our business as we can and as we enjoy, knowing that things can always change. But, then, how is that different from what everyone goes through?

Among other things, B cells produce antibodies, including ANCA. The fact that the B cells are returning just means that there is more possibility of ANCA returning as well, not that they are actually present. And, even if ANCA are at large, it does not mean that there is active inflammation. Finally, there can be some inflammation that could have nothing to do with the ANCA. As for the rising creatinine, many things can account for this--not just vasculitis. It is wise to be suspicious of any infection, including a minor cold. But neither are they an automatic cause for concern.

Finally, it is good that there are RTX protocols that will get things back on track. I realize that the drive is a nuisance for you, and we all get tired of dealing with the white jacket folks, even if they are legitimate gurus. But you are doing an amazing job, and we are proud of both of you.

Al

[Stephanie78]

I love replies that make me feel more at ease, thanks Al.

I guess it just feels like another blow hearing "he needs another round of RTX". Keep in mind this was his first flare and it kinda turned our lives upside down (as I'm sure it has with everyone who has been dx'd and their families). I understand that his doctor has said that it should never be as bad as it was this time since they have a dx and know how to treat it, but until I live that part myself I'm not sure I can feel the assurance that it won't (make sense??)

The upside to this is that John and I have had all this "alone" time together. We will be leaving for UNC when I get off work tonight and stay in a hotel so that we don't have to get up so early for the drive. Downside to this is, that all of our alone time over the past 8 months has been in a hospital room OR the car on our way there or back home. PLUS we have to leave our two kids with my parents (which I'm so grateful for). Zach (15) has a better understanding. Kimberlee (8) doesn't. I've never minded the drive for a good reason. It is sometimes annoying that we drive 5.5 hours round trip for a 20 minute dr appt, but driving it so that he can get the proper care has never been an issue.

Plus side to it all, my best friend just moved to Raleigh (10 minutes from UNC) so we will get to visit and have dinner with her tonight. YAY!

[annekat]

I'm so glad this forum is here to set your mind at ease and provide such good information. I hope you two get to enjoy some "alone" time in the near future, that is NOT related to WG or any other medical issue but strictly for pleasure.

Anne

[delorisdoe]

it took me more than 2 years for remission.

[Al]

....The upside to this is that John and I have had all this "alone" time together. We will be leaving for UNC when I get off work tonight and stay in a hotel so that we don't have to get up so early for the drive. Downside to this is, that all of our alone time over the past 8 months has been in a hospital room OR the car on our way there or back home. PLUS we have to leave our two kids with my parents (which I'm so grateful for). Zach (15) has a better understanding. Kimberlee (8) doesn't. I've never minded the drive for a good reason. It is sometimes annoying that we drive 5.5 hours round trip for a 20 minute dr appt, but driving it so that he can get the proper care has never been an issue. Plus side to it all, my best friend just moved to Raleigh (10 minutes from UNC) so we will get to visit and have dinner with her tonight. YAY!

You are right, Stephanie--we take our joys where and when we find them! I love the long rides with my wife; we can talk about things that require thought, rather than just covering the daily business of shopping lists, what to take to the post office, who will run what errands, and so on. On the long ride, none of that can get done anyway, so it works (at least for us) as a special time--to share DDVftF (Hopes, Dreams, and Visions for the Future). And there are some pretty good places to eat in Raleigh, both the state capital and a university town. And the weather shouldn't give you any trouble.

These things are hard to understand at any age, though your 8 year old is likely quite vulnerable. I feel for her; that is about the age I was when I realized that my father was seriously ill. But neither does it work to shy away from what you have to do. I think you and John are doing everything right, Stephanie.

Al

[KathyB]

I hope your visits and subsequent treatments are successful! My husband is a UNC grad (played football "back in the day") and coincidentally, my rheumy is a med school grad from UNC who played football one year with my husband! Small world! I'm glad to hear UNC has a knowledgeable staff when it comes to WG. My doc expects Rtx to be a regiment for me every six months. I've only had one so far -- four treatments, one each week. Due for round 2 to begin at the end of February. P.S. My niece also did her residency at UNC but is an OB/GYN in Cleveland now!

[Al]

I hope your visits and subsequent treatments are successful! My husband is a UNC grad (played football "back in the day") and coincidentally, my rheumy is a med school grad from UNC who played football one year with my husband! Small world! I'm glad to hear UNC has a knowledgeable staff when it comes to WG. My doc expects Rtx to be a regiment for me every six months. I've only had one so far -- four treatments, one each week. Due for round 2 to begin at the end of February. P.S. My niece also did her residency at UNC but is an OB/GYN in Cleveland now!

UNC and Cleveland are both among the top institutions for both vasculitis research and treatment, Kathy. You aren't too far away from Chapel Hill; maybe you should get your doc to wangle a consultation referral....

Al

[KathyB]

I've talked about this with my husband since we have a vacation place down in Currituck and we are in Chapel Hill at various times during the year. Can someone share a doc name and specialty at UNC? We also have Johns Hopkins north of me. One of our high school students was diagnosed last spring and uses JH. His mom and I have connected ... They are very pleased. I trust the folks at VCU's MCV (Richmond), but realize they are relatively new at this. One thing I know is I've become a very interesting patient for them and received some priority care as a result!

KB

[Dirty Don]

One of our high school students was diagnosed last spring and uses JH.KB

Sangye uses JHU, talk with her...

[Al]

I've talked about this with my husband since we have a vacation place down in Currituck and we are in Chapel Hill at various times during the year. Can someone share a doc name and specialty at UNC? We also have Johns Hopkins north of me. One of our high school students was diagnosed last spring and uses JH. His mom and I have connected ... They are very pleased. I trust the folks at VCU's MCV (Richmond), but realize they are relatively new at this. One thing I know is I've become a very interesting patient for them and received some priority care as a result!

The main guy at UNC is Ronald Falk, a nephrologist. Stephanie's John sees him, along with others in the vasculitis center. as for JHU, Sangye knows those folks. In either case, the VCU folks would, I am sure, be delighted to provide a referral for consultation. After all, it would be a reason for them to have a dialog with world-class folks--on your dime!

Al

[Sangye]

I've talked about this with my husband since we have a vacation place down in Currituck and we are in Chapel Hill at various times during the year. Can someone share a doc name and specialty at UNC? We also have Johns Hopkins north of me. One of our high school students was diagnosed last spring and uses JH. His mom and I have connected ... They are very pleased. I trust the folks at VCU's MCV (Richmond), but realize they are relatively new at this. One thing I know is I've become a very interesting patient for them and received some priority care as a result!

KB
Kathy, I've been going to JHU since 2008. I see Dr Phil Seo in the Vasculitis Clinic and various other specialists. They are all well-versed in Wegs and see hundreds of Weggies. I thought I was getting decent care at Mayo AZ but when I got to JHU the difference was amazing.

UNC has some Wegs docs but I've heard mixed reviews from others in the group about how well they were treated. I'm not sure they're considered a major vasculitis center. My advice is don't skimp-- go to the best.

[norcalian]

My blood createnine levels have been slowly rising over my past couple of blood tests as well (my last test was at 1.42 mg/dl - which isn't much...but it's trending up, which is disconcerting). The rest of my blood and urine work is normal (even for a weggie). I wonder if it has anything to do with my blood pressure - which has been pretty high since being on prednisone.

By the way, I haven't been able to get on this site in a while. Glad to see that it's still going.

[Al]

My blood createnine levels have been slowly rising over my past couple of blood tests as well (my last test was at 1.42 mg/dl - which isn't much...but it's trending up, which is disconcerting). The rest of my blood and urine work is normal (even for a weggie). I wonder if it has anything to do with my blood pressure - which has been pretty high since being on prednisone.
I'd give my eyeteeth for cretinine levels like that! And the slowly rising part isn't so scary; the spikes are. Pred can push up creatinine some; so can azathioprine. But probably not much. The blood pressure in concerning, though. Are you taking any meds for it?

Al

[norcalian]

I'd give my eyeteeth for cretinine levels like that! And the slowly rising part isn't so scary; the spikes are. Pred can push up creatinine some; so can azathioprine. But probably not much. The blood pressure in concerning, though. Are you taking any meds for it?

Al

I'm taking 480mg(I think - it's the maximum daily dose anyways) of Verapimil. I was on Cozaar but my ID doc took me off it the last time I was in the hospital. my last appt my blood pressure was 146/88. It's been on an upward trend. I'm down to 15mg of pred a day, but I gained a lot of weight and haven't been very physically active lately (that may be an understatement) beyond occasionally taking the stairs at work.

[Al]

I'm taking 480mg(I think - it's the maximum daily dose anyways) of Verapimil. I was on Cozaar but my ID doc took me off it the last time I was in the hospital. my last appt my blood pressure was 146/88. It's been on an upward trend. I'm down to 15mg of pred a day, but I gained a lot of weight and haven't been very physically active lately (that may be an understatement) beyond occasionally taking the stairs at work.
Activity is one thing I would try, If not handball or snowshoeing or kick boxing, then at least a half hour walk every day. A walk is therapeutic on many levels.

Did the doc give a reason for taking you off Cozaar? It is a high potassium drug, but, unless you have severe kidney involvement, that should not be a problem. Amlodipine is a more commonly prescribed calcium channel blocker than verapamil; the latter better controls arrythmia, however. In any case, please consider the walk, or similar physical activity.

Al

[norcalian]

Did the doc give a reason for taking you off Cozaar? It is a high potassium drug, but, unless you have severe kidney involvement, that should not be a problem. Amlodipine is a more commonly prescribed calcium channel blocker than verapamil; the latter better controls arrythmia, however. In any case, please consider the walk, or similar physical activity.

Al

My ID Doc took me off Cozaar when I was in the hospital for PCP. originally I thought it was to deal with my orthostatic hypotension. But later he said he would keep me off of it because of my kidneys (which was strange because all my kidney numbers were normal - however it meant getting off another drug, so I didn't question it too much).

Thanks for the advice about getting active. Before I went back in the hospital I was exercising for an hour a day walking and doing yoga. After spending two weeks in the hospital for PCP, I've had a tough time getting active since. I gained about 20 lbs since then...I really need to do something. I've been eating a lot better (a lot of juicing), but haven't started back in with the exercise. I probably also should back off the salt.

[Al]

My ID Doc took me off Cozaar when I was in the hospital for PCP. originally I thought it was to deal with my orthostatic hypotension. But later he said he would keep me off of it because of my kidneys (which was strange because all my kidney numbers were normal - however it meant getting off another drug, so I didn't question it too much).

Thanks for the advice about getting active. Before I went back in the hospital I was exercising for an hour a day walking and doing yoga. After spending two weeks in the hospital for PCP, I've had a tough time getting active since. I gained about 20 lbs since then...I really need to do something. I've been eating a lot better (a lot of juicing), but haven't started back in with the exercise. I probably also should back off the salt.

Yeah, we need salt, but not as much as most people get. And for those of us with distressed kidneys, even a normal amount is too much. Another thing about exercise: Pred will leach important minerals out of the bones, leading, potentially, to osteoporosis. The way to combat this is with some light resistance work and walking.

Al