New to group, diagnosed 11-22-15

[Kymberly911]

Hello all, my name is Kymberly, I was finally diagnosed with Wegener's about a week ago. It's been a long road of sinusitis, two surgeries many months of illness, rounds of testing, and my blood wrk gave away my low kidney function, anemia, and much much more! Then Drs stared listening to me and understanding that my lung issues were not asthma but shortness of breath I couldn't explain. Anyhoo, many test later, we found it, fluke but found it and it's ugly face! I'm 45, nurse with teaching certificate, stay at home mom right now, two beautiful kids, daughter 15 and son 13, both stellar athletes and scholars students, husband who is an executive and my best friend for 23 yrs, so this disease has thrown a wrench in our lives.

I had a kidney biopsy yesterday and I visit the rheumatologist for the first time tomorrow. My question to those of you who have been treated, what can I expect of treatment, meds, or for dr to start tomorrow? I really need to be on a treatment and fast, my numbers are dropping and I'm feeling so bad each day. Its unhealthy to walk around with numbers so low, feeling a but like a time bomb.

Any advice on what to ask or advice on meds to request?

thank you in advance, looking forward to reading more on this site and getting to know you all better!

Kymberly

[Debbie C]

Hi Kymberly,you have found the best forum to answer your questions or come here on those days you just need to vent. First of all,I hope your drs. are experts in their field with wg. If not you can go to the VF website for more info. The most common treatment at first is cytoxin (sp?)- (ctx ),prednisone and Bactrim also Vit. D. Everyone handles the side effects differently so its hard to say how you will react. What numbers are low ? I am sure others will chime in with more advise for you. Let us know how it goes tomorrow and Good luck

[Birdie]

I visit the rheumatologist for the first time tomorrow.

Any advice on what to ask or advice on meds to request?

Kymberly

Hi Kymberly,

There are a number of different treatment plans for Wegener's. Hopefully you've found specialists who know how to treat it. If so then you need to trust them on the choice of medications. It sure doesn't hurt to find out in advance what the options are. Also, you're correct in wanting to start it soon. Full onset Wegener's does a lot damage very quickly.

Prednisone is most common and a partner to most of the main meds treating Wegener's. High dose at first and then tapered down slowly, over a period of probably months, until you get to a maintenance dose of perhaps 5 to 10 mg a day. Make no misteak, pred is awful. Side effects suck for everyone in a handful of varying ways, but it's important in getting Wegs under control and keeping it controlled.

I was treated with Cytoxin (cyclophosphamide) at 150 mg. The dose is based on weight. It's a very dangerous medication you don't want to be on for very long. I took it for a year and a half and have not yet developed any lasting serious issues as a result. It caused major bladder problems resulting in numerous hospitalizations and over a year of recovery, still I don't call that a lasting serious issue since that's what it took to control Wegener's. Cytoxin is thought of as a sort of sledge hammer, used to knock down more serious cases.

I was switched to Azathioprine at 150 mg after a year and a half. Far less dangerous than Cytoxin and so far it's working well, or at least I haven't had a Wegs flare and I attribute that fact to the Azathioprine.

I did 80 mg of pred for about a year, with many failed attempts at reducing. I've been at 5 mg for nearly three years with no obvious side effects directly attributable to prednisone.

Other people can comment on other treatments, since they have first hand experience.

I would ask a new rheumatologist a couple of questions about him/her. How many Wegener's patients have you treated? How many do you have now? If the answers are few then I'd look for another doctor, starting treatment with this one of course since that's what's needed and you may not find anyone with more experience. At least push for him to consult with an expert.

Hopefully he will have all the info needed to begin treatment tomorrow, if not then I'd ask about starting prednisone. Even at a low dose it may improve your symptoms in the short term.

For a tid bit of understanding on what to expect, try reading this:

http://www.wegeners-granulomatosis.c...html#post98791

Check back before going to the doctor tomorrow, there may be more (maybe helpful) replies to you post.


Gary

[woz]

Hi Kymberly, welcome to the group, depending on where you live and how badly you are affected, most people who are diagnosed these days start on rituximab, and prednisone, if it needs to be hit hard and quick they might use cyclophosphamide instead of rituximab, there are other drugs they may start you on (depending on other issues), it varies,, wegs differs greatly in all of us. The hardest part is being diagnosed before too much damage is caused, make sure you have doctors that have experience in treating wegs, and get regular blood work done, read as many posts as you can on this site, the information here is endless, and the people who frequent this site can answer most of your questions, all the best.

Regards Woz....

[Pete]

Hi Kymberly,

I'll echo what the others have said about seeing a doctor who is familiar with wegs. This disease, in case you didn't know already, is sneaky. It can come at you with very vague and subtle symptoms - or it can hit you like a sledge hammer.

Your initial treatment will likely be an immunosuppressant to induce remission. The current drugs of choice seem to be cyclophosphamide (cytoxan) which is a cytotoxin or rituximab (rituxin) which is a biologic that attacks the blood cells in our system that have run amuck.

If you're on cytoxan, you need to keep well-hydrated and urinate whenever the urge occurs. The metabolates of cytoxan are hard on the bladder. Bladder cancer is a side effect. You should be on cytoxan for no more than 4-6 months.

Rituxin is given only by infusion - usually a series of four weekly treatments, but some docs only do two. Usually, the side effects are mild (I have a bit of fatigue the day following). In concert with the rituxin, you will get a steroid (solu medrol) and an antihistamine (usually Benadryl). The first infusion is given very slowly to make sure you don't have an allergic reaction. My first infusion lasted a bit over five hours. Subsequent ones last around four.

As mentioned earlier, you'll be put on high dose prednisone. This will make you feel better. It will also make your appetite ravenous! Weight gain, Cushing's syndrome, and mood swings can occur. Best advice I can give you is (1) eat healthy, (2) exercise to the extent your body will allow (start slow and build up gradually), and (3) taper down slowly. You may get off pred entirely. I got off it once for about four months and had a minor flare. I do ok at 5 mg/day.

Bactrim is a prophylactic against PCP pneumonia, which could be deadly to a weggie.

Other maintenance drugs are methotrexate, Azathioprine, and cellcept. They all have their own side effects. I was on methotrexate for about three years until the fatigue got excessive. I now use rituxin as needed for maintenance.

You can expect to return to a more active lifestyle once the disease is controlled. I'm 69. I walk 2-3 miles 3-4 times a week. I also do light resistance training once or twice weekly. I also have three grandkids age 4 and younger that I play with a couple of times a week. I eat healthier than I did pre-wegs (more fresh fruit and vdggies, almost no processed foods or soda). At this stage nearly five years in, I feel pretty good.

Let us know what your treatment plan is and how it works. You can also come here to vent frustrations, celebrate successes, get advice, and share the "wegs experience".

Good luck!!

[MaxD]

Kymberly,

Do visit the www.vasculitisfoundation.org web site if you haven't already - there is a wealth of information, treatment options, lectures, anecdotes, ... As others have already mentioned, you will be started on high dose prednisone, plus an immunosuppressive (rituxan or cytoxan - also known as rituximab and cyclophosphamide), bactrim, and maybe an anti-heartburn pill (it's one of the many possible side effects of prednisone).

I was treated with the standard 4 infusions of rituxan - I did not have kidney involvement, however. Rituxan had no noticeable side effect for me. Once you are in remission (and you will be!), there are many different choices for maintenance therapy. It is best to consult with a GPA specialist at one of the Vasculitis Centers to plan, and your local doc can work with the specialist. Again, in my case, I get one infusion of Rituxan when my B-cell count goes above 0 (that happened 9 months after my first treatment, and it's been 9 months since the maintenance, so I expect the bell to go off again soon!).


But this is getting ahead of ourselves. Right now, take the time to read up all you can and ask many questions of your doc, and you can be sure to get many people here to answer from our experiences, all of which are unique to us. The prednisone will give you a boost of energy, but don't be supermom, take it easy and allow your body the rest it needs. And, as Pete advises - get some regular exercise. That will help recover from the dreaded prednisone taper.

Oh, and your doc should order a bone density scan - to get a baseline. Prednisone depletes calcium.

Here's wishing you all the best for your recovery!

[Kymberly911]

Thank you everyone, I've just returned home and my course of treatment will be Rituxan infustions, start next week, 6 hour IV infusion for 4 weeks; on prednisone and bactrim for inflammation and infection. it's not the road I wanted to go down but I want to get better and go into remission.... I really hope I can get back to my 5 mile a day walks, I miss them so much! All of your replies have helped me so much to understand what I"m up against. Thank you all for your words of wisdom! I will start treatments, trust in God and let Him guide me to health! My testimony starts now! ��

[Middlesista]

Kymberly - also new diagnosis. Started rituxin and had second dose today, also initially solumedrol 1000mg for a few days while in hospital,and currently on 60mg of Prednisone as well as bactrim

you have had a lot to cope,with and I well understand how huge of an impact on our life and the life of our family this living wth GPA has. But live with it we will - as the folks here have stated you have to get the disease in remission and never be complacent about your treatment plan. Like yourself I am also a nurse and as they say we sometimes have a great deal,of difficulty being on the other side of the stethoscope

[Kymberly911]

No truer words are spoken. I have no problem nursing anyone back to health, critical care patients come and go, but with me, it's me and totally different to treat on the other side. Glad to know I have others here I can talk too!

[annekat]

Welcome, Kymberly. You've come to the right place. You are now a lot less alone with WG. Being a nurse will help you get a handle on the whole thing, and there's lots of good info here, via current posts and the search function. Your treatment of RTX, prednisone and Bactrim sounds pretty standard these days. When I started treatment in 2011, RTX was a little newer and hard to get approved by insurance, which it still may be for some. CTX is a heavy hitter, and that's what I got, in pill form, meaning I could start right away, no delays whatsoever. I was on it for longer than I would have liked if I'd known more, and probably could have been switched to my maintenance drug, MTX, a little sooner. RTX is said to be a little slower to act for some people, while others respond right away. If your kidneys are not recovering soon, your doc could always give you some CTX in pill or infusion form, to provide a bit more of a kick start. That is me talking without being a doctor. Just something I think I've heard of being done occasionally. I hope you can avoid that and the RTX will kick in fast and get you on the road to recovery. I haven't as yet had kidney issues so had a little less to worry about at the start. So RTX might have been pretty good for me, it just wasn't in the cards at the time. Many on here do consider it a miracle drug, and if I have big problems in the future, I might get to try it. Right now I'm doing OK on just the MTX, pred, and bactrim. Best of luck, and do fill us in on where you are being treated and how things are going. Ask any questions and share anything that you want to. Best of luck to you, and I hope you are back to walking soon, one mile at a time, until you are back up to 5.