New Member Introduction

[SandySH]

Hi Everyone, I was just officially diagnosed in July but I think I probably have had it for a couple years. I have had all the usual symptoms: rash chronic sinus issues, chronic lung, fatigue, Kidney numbers are off, etc. My sister died 3 years ago from a blood clot to the brain. She was just diagnosed with Wegener's and more or less gave up. I have been to 3 types of doctors with the same response - they don't know much about it. Now I am seeing a Nephrologist who just prescribed Methotrexate 2.5 to put me in remission. The pills are making me sick. My question for you all is everything I read suggests predisone too. This doctor has been dragging his heels and originally prescribed 250 mg of Methotrexate but his nurse could only find that dosage in injectables. That and his inability to explain how things work and why makes me a little uncomfortable. What do you all think? Should I be looking for a new physician? I definitely can feel this getting worse. I have been trying to keep a positive outlook but I feel like I need something to believe in like my doctor's abilities. Any ideas or suggestions would be appreciated.

Sandy

[annekat]

Welcome, Sandy, and you have come to the right place, with a WG diagnosis. Others will chime in, but it really sounds like your doc doesn't know what he is doing. I think it should be the responsibility of any doc to know when he is in over his head and make every effort to find the patient a more appropriate doc, consult with experts, or whatever. A lot may depend on your location, how easily you can access good doctors with WG experience. So let us know where you are, and that will be a start. Here are a couple of links to lists of vasculitis specialists or docs that have been recommended by patients in different areas of the US and the world.
Vasculitis Foundation » VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/)
http://www.vasculitispan.org/
Some of the specialists may give free consultations with your doc via phone, email, etc.

You are correct that prednisone is almost always given along with an immunosuppressant as an integral part of the treatment. As for MTX (methotrexate) it's usually given in the form of several 2.5mg pills one day a week, and the dosage can be split to minimize the sick feeling. How many are you taking? The usual I've heard of here is 15-25mg per week (6-10 pills). The 250mg. your doc mentioned sounds like an awful lot but could be taken in pill form by taking 100 of the 2.5mg pills(!). That, or an injection of that much, sounds pretty excessive. So, I don't understand his reasoning or exactly how much you are taking, and how often. You may find the side effects will lessen after awhile. And there are other meds available that may be more appropriate for your situation.

Anyway, we are here for you, so continue to ask away, and share as many details of your WG journey as you wish! Long rambling posts, as well as venting and whining, are OK on here. We have all been through the gamut of emotions and complaints about symptoms and meds, though everyone's case is a little different. I hope to keep hearing from you! :smile1:

[Pete]

Hi Sandy,

Welcome to the "club". Methinks you need to find a WG specialist, or at least have your nephrologist consult with one. You can find a list at the Vasculitis Foundation's website.

I'm guessing that you're taking 2.5 mg of methotrexate daily. That's a very small dose and probably won't get you into remission. Also, methotrexate is not usually the best drug to induce remission. Cyclophosphamide or rituximab are more potent and more widely used to induce remission. Rituximab is frightfully expensive and only given by IV. Cyclophosphamide is much less expensive, but may have some long-trek side effects. Ask about them.

Prednisone is the drug we love to hate. It reduces the inflammation and helps begin healing. Initial doses of 60 mg/day are not uncommon. As the disease comes under control, you should be able to (slowly) reduce the dosage or stop taking it altogether. Side effects include Cushing's disease (moon face and/or buffalo hump), increased appetite (and weight gain -- I gained the 25 lbs I lost at disease onset and a new 25 lbs), sleeplessness, and sometimes (rarely) some very pronounced mood swings. All things considered, it's a very useful/necessary drug. I can't seem to get below 5 mg/day without disease symptoms recurring. I started at 60

Again, welcome to the forum. Let us know if you have questions or just want to vent frustrations, fears, etc...

[Birdie]

What do you all think? Should I be looking for a new physician? I definitely can feel this getting worse. I have been trying to keep a positive outlook but I feel like I need something to believe in like my doctor's abilities.

Yes you should be looking for a new physician. Even if you weren't unsure of your current treatment plan you should be looking for a second opinion. Doubt about your doctor makes it even more important.

On the flip side... keep on keeping a positive outlook. A clear head makes a big difference in decision making so it's important to more than just your emotional health. Here's a thought to help the positivity, this forum is filled with people who've done well with Wegeners. Many of them for a very long time.

[LCL2013]

SandySH,

Can you clarify your Methotrexate dosage. First, you should only be taking it once per week, not every day, and it's not clear to me from your original post how often you are taking it.

My Rheumy also started me on MTX (I took 8 pills once per week). They made me slightly sick for a day or two afterwards, so he told me it was okay to split the dose so I took 4 in the morning and 4 in the evening. I took my on Friday or Saturday so that I would have a day or two to recover (fatigue) before I had to go to work on Monday. I was also on 80mg of Prednisone to start (with a slow taper), as well as Folic Acid and Bactrim.

I think you definitely need to find a Rheumy that is experienced in WGs as soon as possible.

[SandySH]

Thank you all so much for your responses. I will look into those lists. I live in Placerville, California which is half way between Sacramento and Lake Tahoe in the foothills. And the doctor has me only on 2.5 mg a week. I really appreciate all the support. I feel like most of my family looks at me like I'm crazy, lazy or want attention. Sending you all love and positive thoughts.

Sandy

[annekat]

Thank you all so much for your responses. I will look into those lists. I live in Placerville, California which is half way between Sacramento and Lake Tahoe in the foothills. And the doctor has me only on 2.5 mg a week. I really appreciate all the support. I feel like most of my family looks at me like I'm crazy, lazy or want attention. Sending you all love and positive thoughts.

Sandy 2.5mg a week of MTX is not enough to do a dang thing. I hear there is a vasculitis clinic at the UC Davis hospital in Sacramento. But better yet, a specialist at UCSF who is listed on the VF link sent above. Your problem with your family not taking this seriously is not uncommon. In time, they will, especially if you don't get the right treatment and things get worse. WG, and especially with kidney involvement, is nothing to play around with.

[Birdie]

I feel like most of my family looks at me like I'm crazy, lazy or want attention.

Send this link to anyone you need to have understand:

But You Dont Look Sick? support for those with invisible illness or chronic illness The Spoon Theory written by Christine Miserandino - But You Dont Look Sick? support for those with invisible illness or chronic illness (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)

Spoon theory isn't a theory, it's much better.

[Jayne 14]

Welcome Sandy
i think as everyone's suggested u need to find a doctor with wegners knowledge / experience
but for general support help & advice this is the place
good luck xx

[annekat]

Also wanted to say, 15mg/wk of MTX, that is, 6 of the 2.5mg pills, is considered by top WG experts to to be the LOWEST effective dose. So that is how far off your doc is, prescribing only one pill, 2.5mg. a week. Is there any chance you misunderstood the directions of how to take them? A doc might start someone at say, 7.5mg. or 10mg. per week to get them acclimated to the med, and then soon raise it up to 15mg. or more.

[drz]

The only reason to start at a sub-therapeutic dosage is to help your body adjust to the medicine. Often this can make the difference between being able to tolerate a new medicine and rejecting it because of the side effects. I started azathioprine at a very low dosage but this was explained to me so I understood the treatment plan. If you are having considerable trouble with the very low dosage, that might not be the best med for you. It is important you have a lot of trust in your treating physicians so if they lack adequate communication skills to inspire your confidence you should seek help elsewhere. You are also close enough to SF to find some experts there too if needed. You can often get treatment closer to home if the area doctor consults with a recognized expert with lot of experience. It often is a good idea to see the expert directly for a consultation too to help set up the consultation setup.

[annekat]

I agree with drz that MTX might not be the best med for you, not only because such a low dose is making you sick, but because it is not a heavy hitter for lung and kidney involvement. Most who are started initially on MTX only have sinus involvement. A specialist would be more likely to start you on one of the stronger drugs that Pete mentioned above, CTX or RTX. Once you had made quite a bit of progress and were heading toward remission, you could be switched to a milder drug. Some people just can't tolerate certain meds, so it is good there are alternatives, but most will feel some side effects at least for awhile. And each med has its own set of risks to keep in mind. A specialist could explain all of these things to you. If you can get in to UCSF, it is probably the best alternative for you. In the meantime, though, it would be nice to find a doc who would get you started on the right meds, in case there was a wait for an appointment at UCSF. Sacramento is a big enough place that there should be some competent rheumatologists or nephrologists who have some knowledge and experience with WG. Rheumatologists are the first choice for a WG doc, but it has to be one who knows the disease, and not all of them do. Then, most of us have ENTs, pulmonologists, nephrologists, and others as needed, as part of the treatment network. Good luck.

[annekat]

Actually, any doctor can prescribe you the right meds to get you started, if you have to wait to see a specialist. They just have to know what they are, and it isn't that hard to find out. My suggestion would be 100-150mg of CTX per day, or more, depending on your weight. The formula is 2mg. per kg. of body weight per day (1 lb = .45kg). And prednisone, 60mg. per day, or if you are in really bad shape, 80mg. You would start tapering the prednisone at some point, possibly within a few weeks. And you could take the antibiotic Bactrim DS 3x/wk to prevent certain lung infections that immunosuppressed people are subject to. I'm not a doctor! But I'm going by my own dosages and the typical ones I've read about here on the forum. It's just important that you get some effective meds into you, soon! The alternative could be that you end up in the hospital, and if it's the UC teaching hospital in Sacramento, you will probably do OK for starters. (I used to live down there.)