I start treatment for WG on Wednesday

[jjwestside]

It took about 3 months to get a diagnosis, mainly because I also have Cystic Fibrosis and that was causing some confusion with certain test results. I've been on 5-15 mg of prenisone daily for the last 2 months and next Wednesday I get my first infusion of Rituxan. I'm hoping to get some quick results because my symptoms (especially pain) have really kicked up over the last 10 days. I'm a little nervous about the infusion and any possible side effects from it. Does anyone have any advice for someone who is just starting out with treatments?

Thanks!

[Pete]

Hi JJ,

Welcome to the "club". Hope you get the help you need from us. There are a lot of experienced weggies on here.

In most cases, the rtx infusion is a non-event. The most common side effect is fatigue for 24-72 hours. Some folks have an allergic reaction and they need extra antihistamine or steroids, and the rtx flow rate will be much slower. On average, the infusion will last around four hours - maybe more.

Rtx usually takes a few weeks for the main effect to fully kick in. It took about six weeks for my labs to improve.

Your pred dosage seems a bit low. At disease onset, I was on 60 mg/day. It takes awhile to get off pred. You can do a forum search for "prednisone taper" to read others' experiences.

Good luck and keep us informed about your progress.

[jjwestside]

Thanks Pete! I'm not 100% sure why I'm on a low dosage of prednisone but I assume it's because of my CF. Since CF causes constant lung infections, my docs are concerned about the immunosuppression. Maybe they're trying to limit the amount of immunosuppresants as much as possible.

[annekat]

Welcome, JJ. I'm glad you found us. I would agree with Pete that your prednisone dosage is too low. Most of us start with from 40-60mg. per day and then taper down gradually. I haven't had RTX, but would encourage you to relax and just go with it, as many have found it to be the best thing for them. As I hear, the first infusion may be more of an "event" as they will go slow and monitor you for reactions, etc. After that, it should get easier. Best of luck.

[annekat]

You could take Bactrim, an antibiotic, as many of us do as a prophylactic against lung infections. But then, I know nothing about CF. Having both diseases would certainly complicate things, I'm sure.

[jjwestside]

Yeah, I'm going to start Bactrim when I start getting the Rituxan.

[Gab122]

Hi JJ - I was just dx 3 months ago and found this site to be very helpful! I'm glad you found us. I agree with everything Pete and Anne said above. (Regarding pred dosage, ritux and bactrim.) be ready for a long day for your first infusion. Maybe 6 hrs. My 2nd one was 4 hrs. Going for my 3rd in Dec.
wishing you the best!

[jjwestside]

Thanks Gab! Have you started feeling better since you started the Rituxan? If so, how long did it take for you to notice a difference?

[Gab122]

JJ, my primary symptom was ear pain and drainage. I was started on 60 mg prednisone and a week later I had my first ritux infusion. I think my ear pain responded very quickly to the high prednisone- I think within a week. I had granulomas in my lungs and I was coughing a lot for a month I think. My coughing and chest tightness really was only taking off about the time of my diagnosis. Cough got worse before it got better. I think coughing was minimal within 3-4 weeks of ritux. My granulomas were almost completely gone within 2 months of first ritux.

Dx was 8/1/16 and so now 3.5 months later I am doing well. I feel weird sensations in my ears and sinuses still but my lab work is good and I'm told I don't have gpa in my nose. Maybe it's a side effect of prednisone (there are many).
I am tapering pred and am at 20 mg as of yesterday. I was on 60 for 6 weeks. Then 40 for 4 weeks. I've gained 25 lbs since my dx. :(. but im very grateful for modern medicine and not having pain. :)

let me know if you have any other questions.
Gab
pS. Are you working with a rheumatologist? One who has many weg patients?

[jjwestside]

I'm working with a rheumatologist at Vanderbilt. He's a fellow but I also see his boss and he has consulted with a group of 20 other rheumatologists in his office about my case. My worst symptom is the pain in my joints, which has gotten much worse over the last week. I'm taking a combination of tylenol, Mobic, and Tramadol for it. Staying active seems to help ease the pain a bit. I'm just ready to get my treatments started so I can hopefully get some relief soon.

[whatthewhat]

Hey jj, welcome!
i used to volunteer at a camp for kids with cf, back when they had camps for kids with cf!
My daughter has WG, I do not.
Her rtx takes much longer than 6 hours. Her day at the infusion center starts when they open and finishes when they close (first in, last out, like the marines I think!) and can run as long as 10 hours, all told. It seems they run pediatrics more slowly than adults in general.
Best of wishes to you. I personally think Rtx is as close to a miracle drug as you can get with this disease.

[jjwestside]

Well, the first infusion went really well. I was there from 8-4 then came home and took a nap. Pretty boring, overall.

[Alysia]

Welcome to the forum JJ. Once you are on rtx ask to regularly check your Igg levels in your blood tests to make sure that you can fight infections. If it gets too low, dont worry, there is a treatment, some weggies get Ivig. I know at least 4 friends who get it.

[Hal]

I would suggest that you should listen to your body. If it says "I am tired" then absolutely rest and nap and do not feel guilty about it. Boring can be a good thing for us.

[MikeG-2012]

Well, the first infusion went really well. I was there from 8-4 then came home and took a nap. Pretty boring, overall.

I have fun with the staff. In about 5 minutes, I will have completed my 14th RTX infusion. Yea INSURANCE!! So by now they know me and my personality and that I enjoy having fun. So they play long nicely.

I also take my noteboook computer along so I can anxiously await any new posts to the wegs-list.

[Jaha]

JJ,
Welcome to the #1 forum for our kind. I'm am glad that all went well with your infusion. It is a long day and as you get to know the staff it will get more interesting, sometimes you run into a fellow Wegeners person. I wish you all the best with you treatments. I wonder if because you are on Mobic, if that's a why you are on a lower dose of preds?

[pfries]

Well, the first infusion went really well. I was there from 8-4 then came home and took a nap. Pretty boring, overall.



Welcome to the forum JJ. Once you are on rtx ask to regularly check your Igg levels in your blood tests to make sure that you can fight infections. If it gets too low, dont worry, there is a treatment, some weggies get Ivig. I know at least 4 friends who get it.

I am currently doing a Cytoxin regimen and IvIg was added after the second round as my numbers dropped.
I tend to schedule my infusions as early as I can in the morning and go to bed late the night before so I can nap :blink: