New Member... possibly. In need of an expert in the field.

[Birdie]

The doc mentioned if you are taking Cocaine you can get positive ANCA's.

A quick search makes me think it's p-ANCA rather than c-ANCA, and not truly from the cocaine but another drug sometimes added to cocaine. That's if everything on the internet is true.

[MaxD]

Hope,

I'm sure Dr Spiera will arrange to have you closely monitored through the infusions. But be sure to remind the nurses about all your medications and symptoms nonetheless. You should expect a shot of benadryl and one of solumedrol (a steroid) prior to the infusion of Rituxan which is diluted in a saline solution.

As for the Rituxan, you shouldn't suffer any side-effects. But the Benadryl will make you drowsy so if someone can accompany you home that would be ideal. If not, you should plan to stay in the waiting room of the infusion center for some time until you are sure that you are steady on your feet.

The question about cocaine is standard - regular use can cause symptoms similar to GPA and it's important to rule that out in diagnosis.

Great to see you in good cheer and looking ahead. Lots to give thanks for this season!

Keep in touch, and all the best.

[Hope003]

Thank you All very much for your advice and help.

This is getting really frustrating. Dr. Spiera called and my ANCA's are negative, which I thought was great but he didn't. He said he's seeing some changes on my CT Scan in May, June and Sept. He said he's ready to pull the trigger on the Rituxen! I was stunned! I feel unsure and my Cardiologist is also... not convinced it's Wegs. Although he did say, I do have the symptoms, my CT is abnormal, they can't explain my shortness of breath... he admitted if it walks like a duck, talks like a duck... must be a duck! I've been seeing him for over 16 yrs and I trust him! And I mean, TRUST him! He saved my life numerous times when other doctors failed to pick up on my symptoms. So My Cardiologist told me he doesn't know much about Wegs but spoke with Dr. Spiera about everything. He said to me, he doesn't want to say don't take the Rituxen because if it is Wegs and I'm dying a few months later... Not good. So he asked, can you hang in there 1 more month? 1 more month and give the inflammation time to go down in your lungs. If it doesn't get better, or it gets worse, we have our answer. He doesn't like the Rituxen at all for me. He was not happy. When he's not happy... that makes me nervous! On a side note, they both agreed a biopsy is completely out of the question! It's a start I guess.
I have to call Dr. Spiera back on Monday. My doc was asking if maybe the doc can start me off on something less potent? The Bendryl is going to make my heart race, the steroids are go to cause fluid retention and send me right back into CHF. And there is talk that I may have to come off my beta blockers, which kept my Vtach below 200 BPM. This is a complete mess! On top of this, the GI doc thinks I have a stone in my bile duct and they will be going in to look on Monday at the hospital. He said I may need a ERCP. I'm praying it's a stone and ALL my symptoms go away!!!

Yes! I am thankful! Very thankful to God for leading me to this board and all of you!

Happy and Blessed Thanksgiving everybody!

[Aneinu]

Our hearts and prayers are with you. May God bless. As an aside, what is the danger in the skin biopsy? Stay strong please.

Sent from my SM-G920V using Tapatalk

[MaxD]

Hope, Here's wishing you all the best. It's a very tough situation that you're in, both with your health and the uncertainty around diagnosis. It must be gut wrenching, not knowing if the treatment will solve one issue and make another worse, while not proceeding may be a worse option still. On the plus side, you have competent docs who you have faith in, who are looking out for you, and are communicating with each other. Let them know all your fears to remind them they're treating a person and not only a complex mix of diseases. Everyone here is rooting for you!

[Birdie]

This is getting really frustrating.

Wow, I understand the frustration.

You obviously have a couple things working in your favor. First is good health care and second, maybe as important, you have a very good understanding of the situation. Keep studying everything involved so you can make the best choices. Don't ignore any changes and don't hesitate to use the emergency room.

[annekat]

It's not uncommon to have a negative ANCA reading and still have Wegs. I'm sure Dr. Spiera knows this. It seems you might be more afraid of the things that are given along with RTX than of the drug itself. CTX is an alternative that is just as potent as RTX and has its own set of risks, as do all the meds, but is usually, though not always, given in oral pill form with no need for benadryl or a heavy dose of IV steroids at the same time. You might not need to be on it longer than 3-6months and could then switch to something milder. You would still need oral steroids in the form of prednisone, but not the heavy dose at one time like you'd get with RTX. There's really no need for me to say all this, as Dr. Spiera is a top doc who no doubt has thought of this. I just wanted to point out that the CTX worked fast and effectively on my lung involvement, which was clearly seen on a CT scan. I have little or no understanding of your additional issues involving your heart and other issues or how any treatment for Wegs would complicate them. You are in the hands of two excellent doctors and I guess will likely go with the plan that they agree on. Many of us are afraid of the meds before we get them and they turn out not to be so bad, and end up saving our lives. If you are administered RTX under the watch of Dr. Spiera, with your cardiologist close at hand, I'd think you'd have a lot less to worry about than any of us without such good docs. Best wishes to you in dealing with this situation and coming to terms with it. We are all pulling for you!

[Jaha]

I welcome you to the forum and am wishing you all the best with treatment. I am one of the 20% of Wegs patients whom are ANCA neg. It took almost 7 mos. to get a dx after having an open lung biopsy, at a local small hospital. I self referred to CC and they sent for the biopsy and dx'ed me. I guess my point is, your cardiac problems could be caused by Wegs and it is good that you have both docs working on your case now. You have come this far and they will figure you out, but just don't discount the Wegs guy, because I bet he has seen lots of patients with cardiac problems. All the best to you.

[drz]

Generally most people have few problems with RTX but my experts at Mayo also believe to defer it until it is certain that is really needed. Their thinking is that it might tend to become less effective from repeated use so best to save it for a serious situation. Hope things do get better. Other problems like infections or other health issues can cause increase in Weg symptoms and other symptoms. These usually do dissipate in few weeks or when the other problems are resolved.

[Hope003]

Wow! Thank you ALL for encouraging and helping me along.

I had the Procedure and the doc said there was no stone in my bile duct but found Polyps in my stomach! 50 to 100! He removed a few and I'm waiting on the biopsy results this Friday. He said he thinks the polyps are caused by the acid reflux medication, Protonix. He took me off it and I have been really sick to my stomach since Monday! I called a few days later and he put me on Pepcid... I felt worse! Today he told me to go back on Protonix. I was stunned and even questioned him. He told me to come in for an appointment.
Dr. Spiera spoke to all my docs and none agree with him! Actually one, my cardiologist is open to what Dr. Spiera is saying. Dr. Spiera asked me to see the ENT. Dr. Lebovics, if I spelled that right. I'm going in tomorrow and I'm hoping he may shed some light on all of this. Dr Spiera asked me to do three things. See the ENT, Send him my biopsy report when it comes in and get another CT Scan in 1 month. He wants to see if anything changes or gets worse in my lungs. My cardiologist was the one who told me to hang in for 1 more month then get the CT scan and Dr. Spiera agreed! It's crazy that none of my docs agree and it's giving me doubt! I have to try and stay well for the next month and my Cardio told me to get the flu and pneumonia shot! My lung doc said because my immune system is compromised I could get an infection. That would cause my lungs to get inflamed all over again and then the CT scan would not be accurate! This is like a vicious cycle!
What is the lest dangerous med or a starter medication used to treat Wegs?

Thanks again everybody!

God bless you All!