Well the wonderful chaos of the holiday season has come and gone, and I'm taking little steps closer to my computer - alas, a post.
Things are confusing in my Weggie world right now. I'm cutting down on the pred (at 19mg right now) but you wouldn't know it to see me. I'm such a giant in my face, neck, upper back and torso. It's totally gross. People I've known for years don't recognize me from a foot away. Then they feel bad (and they shouldn't cuz I look totally different - totally). I have bizarre lumps growing all around my upper body - hump on my back/neck, two large humps on either side of my throat, a couple of large ones on my back between my shoulders and my neck - it's disgusting... and it's all from the pred. So I'm cutting down, BUUUUTTTT, the more I cut down the more my symptoms come back. So I'm in a pickle right now.
Brian has a new theory that might just be dead on. When I went to the hospital and we started treatment in May, I had lost a ton of weight, and they based the chemo dosing on that weight. I'm now about 15 lbs heavier than my normal weight before getting sick, so Bri's theory is that we're under-treating with the chemo drugs. I'm at a sub-therapeutic level and the pred keeps the symptoms at bay, but the chemo isn't actually snuffing out the fire. So I don't think I'm flaring, but I do think I'm smouldering and as I get lower on the pred I feel the smoulder more and more. To further support the theory, my WBC (white blood cell count) has been above normal for even healthy-non immune suppressed people, which is the exact opposite of what should be happening when on high pred and chemo - it should be way low, so what up? My inflammation markers are quite high as well so there is a few things that need to be tweaked I believe.
My head is starting to do it's constant headache, accentuated with the odd shot of crazy pain again, my sinuses are constantly stuffed and bloody and I can't sleep at night because of it. Getting some pain in my left leg again, like someone is holding a vise just below my knee. Face and scalp are sore, nose is crazy sore, pain in ears is coming back (and I hate that one)- so yeah, smouldering.
I have an appointment with my rheumy on the 17th but I'd also like to see someone with some vasculitis experience for a second opinion. I know that the biggest problem with Wegener's is under treatment or over treatment. Since I got sick, three people on the forum have passed away from complications of the above two mistakes made by docs not familiar with the disease. That's since last May. I don't want to be another stat of a doc who wasn't sure or didn't want to consult when they didn't know. Treating Wegener's is as much an art as it is a science and you have to look at the symptoms the patient is experiencing as well as the blood work and lab work - can't make decisions based on only one of those factors. I know they're busy but my life is my life and I plan on living a long time and watching my little monkey grow up into the wonderful woman I know she will be. I want to grow old with my amazing husband, and see if he actually will look old one day.
Wegener's Granulomatosis. A rare auto-immune disease affecting 1 in 30,000 to 40,000 lucky winners. I'm one of those winners. Diagnosed in May 2010, life has changed dramatically in some cases for the worse and in some for the better. This is where I ramble on about my observations with this new friend called Wegener's - which makes me a Weggie (pronounced 'weg-ee')
I had the same concern with my chemo dose, but they told me that they base it more on lean body weight. Since the Prednisone weight is mostly fluid retention, that doesn't affect your dose as much.
ReplyDeleteAlso, when I started to reduce the prednisone, much of the pain in my joints returned. And I had blood in my nose consistently for a couple months, then off and on for another year. It takes a while for things to heal, and I think the Prednisone can mask the symptoms of all the damage that was done, so you don't notice it as much until you start to get off it.
Anyway, that's just my experience. I hope you can get in to see a doctor with more experience with vasculitis. Did you have any luck with the doctors that the Cleveland Clinic recommended?
Thanks Mike,
ReplyDeleteThis is good to hear in a sorta not so good way. I just read it to Brian and we both agree that it's good stuff. Toughing it out might be the way to go. Although the headaches that are coming back are not that great - not sure how to tough those out for a year. I'm in the process of getting to see the doctor you sugested from the Cleveland Clinic team. Hopefully sometime in January. The referal fax has gone out already, and I'm seeing my GP on Friday and I think we might give her a call.
My dosing for the chemo was based on my weight when I went into the hospital which was way lower than my normal weight - I think that even based on my normal weight (which I've been for years before getting sick) I'd still be closer to 150 than to 100mg of cyclo (actually 130mg based on my healthy weight if you go with the high end of the recommended dosing 2mg/kg vs 1.5mg/kg). Even now I'm a little lower than 150mg but rounding it off it's much closer to 150 than 100.
It's good though to have this perspective. Relieves the panic a little makes me feel like I need to suck it up a little more, and it might actually get me a foot in the door of the doctor you recommended.
Thanks Mike, Hope you had a great holiday and that you are stronger than ever. All the very best to you and your family and may all your wishes come true in the New Year.
Marta: If you're symptoms are coming back as you lower the pred, it may mean that you are at a sub-therapeutic chemo dose OR that your chemo isn't working for you. The idea from the top researchers in the field is that patients should be off pred within 3-6 months, and in full remission within a year. I think with a good specialist on your case, you could get to a place where you will be off pred and your symptoms will continue to decrease/go away entirely. Good specialists know it's simply not realistic to have pred play a prominent role in WG treatment long term because it has devastating physical affects with long term use.
ReplyDeleteThanks Jan,
ReplyDeleteJust went to my GP today and we're upping to 150 until we get in touch with a rheumy next week (either my old one or the new one I'm trying to get in to see - the one that Mike suggested on the advice of the Cleveland Clinic - she specializes in vasculitis and has an interest in Wegener's). I agree with yuo on the pred - I'm so not interested in upping it again unless I absolutely need to, which is why I'm keen on getting the chemo figured out. Thanks for the post.
My doc said she does not work with cyclophosphamide (I know most docs have an aversion to working with it cuz it's so nasty, but we're going straight on the numbers - my weight at diagnosis, my healthy weight and my weight now, and even based on my healthy weight I should be on 150 if we do with 2mg) We'll keep an eye on the bloods and go from there on Tuesday when I see her next.
Thanks a ton to you and Mike for the support. Also Sangye and Brian for coming up with the theory in the first place.