I need Advice!

[jtausan]

Hello All,

I hope everyone is doing well. I have not been posted in a while but I have been reading here and there.
I have been to Mayo a few more times since my last post. I had the throat dilation procedure done in April. I felt pretty good (as far as airway breathing) for about a month and then I realized that I was short of breath again etc. I had a recheck of my throat in June and the surgeon put the camera down my nose to my throat and it was narrowed with red inflammed tissue and some scar tissue. He said that we needed to figure out if it was narrowing due to Wegeners or acid reflux. I had been having a lot of acid reflux symptoms. We scheduled me with the GI doctors a few weeks later, also at Mayo. I had and Endoscopy last week and they determined that I do have Esophogitis but it was not severe enough for surgery so they gave me an RX for Nexium as Omerprozole and Zantac have not been working. Coincidently, on my way home from Mayo (we drove, its a 9 hour drive) I finally had a "talk" with myself and realized that I just really needed to eat better and lose some weight. I am 5 4 and I weighed 171 at my Mayo visit. So 25-30 lbs would be ideal for me. The "talk" worked because It has been a week and I have done great! I am eating good foods and eating my meals slower, I don't drink any soda, I don't eat after 7 pm. I don't own a scale (scales are the devil) but my clothes fit much better already. The great thing is I have not had heartburn at ALL!!! Wow! I haven't even started taking the Nexium because my insurance hasn't approved it yet.
Anyway my deilema! When I went for my GI tests I saw the Wegeners guy Dr. Specks and he said that the Methotrexate is prob not helping and that we should procede with Rituxin. He scheduled me for Pulpomary function tests, sputum tests etc the next day. He wanted to review those before he made a decison. I went home and I was to call this week to find out test results etc. After having the weekend etc to think over things, I decided that I really wanted to go ahead with the Rituxin. I want to have the chance to go into Remission. I know the Rituxin isn't easy to take and I have read the posts on here but I am willing to go forward with it. I called my insurance an since it is FDA approved now they just have to have a pre authorization done. I also have used my deductable and my co insurance this year so if I do it now I won't even have a co payment. So I talked to Dr Specks nurse Vicki and said that I wanted to go ahead with the Rituxin because I wanted to get to remission. (btw I was home from work sick this week with a sinus infection that went to my chest, so I had had it with that too) She understood etc and explained that I would prob get 4 infusions with the first one being at Mayo and then I could tranfer to my town and get the other 3 infusions here, one week apart. She was to call me the next day.
She called me yesterday and said that Dr. Specks wants me to up my Methotrexate to 10 tabs per week instead of 6, to take 5 in am and 5 in pm. She said he thinks with the Nexium and the Methetrexate it will help. Well I still need to have the throat dilation again but am waiting until the Wegeners is under control. I guess I just feel like I am running in circles here. I get so upset because it's like I am not sick enough to go for the "ACTIVE" treatment so lets just keep throwing these other drugs at you. If Im not sick enough why do I feel like it all the time? Why do I have ACTIVE Wegeners in my sinuses, nose, throat etc.
Should I demand that I have the Rituxin? I am not really that kind of person but dammit I want the chance to be in remisson. What are your views, any help would be appreciated.

Jodi :drool:

[marta]

Hey Jodi,

My gut reaction after reading this is that you talk to Dr. Specks and tell him how you feel - not so much demand, but explain your side and feelings. It's hard when there is a go between in the mix as everything gets lost in translation. I know it's far for you to travel, but is there a way you can consult with him one on one - phone, email, skype....? I find that all my docs are very respectful of my opinion and unless it's way out there they will oblige. I do get to speak to them one on one though, and we have good relationships now, after I fired my awful never listen to me rheumy. I hope you get what you want, as I also find that peace of mind is a huge healer alongside our cocktail of drugs.

[Psyborg]

Jodi,

Sorry things are going rough for you. I kind of feel the same way when dealing with the secretary for my specialist. She's not actively rude, but I never feel as if my full message has been relayed. The jerking around from one drug to another has got to get old. I don't understand why he'd suggest the RTX then back off when you got back to him...that seems weird.

[Brooke]

I agree with Marta, if you can talk to Dr. Specks over the phone and let him know of your concerns. Maybe write down all of your thoughts and concerns and questions for him, so when he is able to call you back, you won't forget anything.
I hope everything works out for you!

[Sangye]

Jodi, it may be that you have active disease but not active enough to justify rtx. Sometimes it's almost a toss-up between using a higher dose of a milder drug or going for a stronger drug. Rtx is a very potent drug with some major risks. I know the Wegs specialists do not want to use it unless it's really needed.

I agree that a talk with Dr Specks will be helpful. You and he have to get on the same page, and you have to find out what he's thinking. I'm often surprised to learn how much Dr Seo is looking not just at my present situation but way down the road. They really do look out for us, even when we don't know it.

BTW-- good job with the diet and getting off acid-blockers. Unless your acid-reflux is caused by pred, it's always better to treat it via diet.

[vdub]

Methotrexate to 10 tabs per week instead of 6, to take 5 in am and 5 in pm
That would be 5 in morn and 5 in eve on one specific day of the week, right? Not everyday. That is the regimen I have been on for about 6 months and now they are tapering off as the blood tests are showing remission.