remission

[germaine]

I have been in the treatment phase for WG since November and since I also had a set back, it seems the chemo and the pred is going to go on forever.

How do they decide when you are in remission? If you are on very low doses of medication is that called a remission? Is it a negative anca? I sure would love to find out what to expect if I ever get there.

I am often surprised how good I feel, then I overdo it one day and am dead the next. Sometimes, a couple of heavy days can bring on the bloody nasal discharge. Does anyone think it is necessary to be sure to rest enough? I've never been a couch potatoe and had that really unfit feeling. Sometime I feel like I don't have anything wrong with me at all, then I had the brief scary relapse. I don't want that again. What is the best way to keep healthier? Germaine

[Sangye]

Hi Germaine,
We can all relate to the overdoing it part! With Wegs and the drugs, you can't act like you used to-- really overdo it and just count on bouncing back. Every time you overdo it, it digs a deeper hole as far as depletion. If you keep doing it, it's a good way to start a flare or make it drag on forever. You have to start very small and see how much you can do on any given day. Every day will be different. Also, the longer you're on chemo and/or pred, the more depleted you get. That depletion doesn't go away quickly even when you stop them. There may no way around being on those drugs, so you have to change to accommodate them.

Think of it like a savings account. Overdoing it means spending and borrowing money you don't have. Repayment won't be easy. Taking care of yourself means only spending what you have, and even leaving a little for the next day. From a physiological point of view, this is actually quite accurate.

[crackers]

hi germaine.i'm not sure there is a "best way to keep healthier".i think it's important to know your limits and try to keep to them.in my case this has lead to couch potatoe syndrome but the consequences of exceeding those limits can be much worse.
john.

[Doug]

Hello Germaine! I'm the new guy on the block, but have been in remission long enough to realize I've been through enough that I may be a good help to people still being treated in the early stages. Hope is the one thread you have with normality, which you yet may not feel you will ever see again. Though I tolerated Cytoxin well enough (after my doctor put me on a drug I can't remember these five years later to control the vomiting!) but the Prednisone was hell on earth! I fell asleep at eleven at night, woke up at one or so A.M. From wake up time till 11 the next night, I was rearranging the cupboards, baking bread, etc. etc.! I couldn't read a newspaper or focus on writing a letter for well into my treatment. At one point, perhaps five months after treatment began (and the medications, particularly Prednisone, were reduced, reflecting better results on blood and urine tests), I started to have better luck writing short letters, though reading a book wasn't possible unless it was very short. I was on Prednisone from December 2003 until April 2005. The day I took my last dose, I had a small celebration! I wish I had kept a journal, so my dates may be "approximate" in the next section. I was moved of the cyclophosphamine around June of 2005, and was somewhat in remission by then. I say "somewhat" because "normal" for me is on the high end of the scale for blood and urine tests because I'm stable at those points, never varying much from one test to the next. Bactrim is the only drug I take to maintain remission now, an amazingly agreeable development: my doctor says that is the newest treatment according to his sources, which include University Hospital-Denver

[andrew]

How do they decide you're in remission? It depends

As with many things WG, it's a individual thing based largely on blood results, particularly ANCA (for those ANCA positive weggies).

It's probably a mistake though to hang out for remission. It may never come. That's not to say you'll never feel better, that's a different thing. I feel great but I'm not in remission. I know this because my ANCA and other blood results is still high and I bleed from curious places when I've had a hard day I know all about nasal bleeding, aye yai yai! Funny though to see my work colleagues faces when I blow my nose and the tissue goes red. Teehehehehe. I always act like its a normal thing and don't even react to the blood. That spins them out even more. We weggies have to make our own fun.

I'm not on any Pred and I'm on a low-ish dose of Imuran yet I'm still nowhere near the 'big R'.

The best way to stay feeling ok is to work within your limits (yes, do what I say and not what I do ). Take it slow/steady even if you feel ok. You feel ok because you're taking it slow/steady. The best thing I find that makes me feel great is to go for a walk. Doesn't have to raise the heart rate to 200 but just a walk to 'get the blood circulating'. It can make you feel great and not screw you up.

So, my advice is to accept your nice, shiny 'new normal' and let remission take care of itself. Yes, I know, easier said than done.

[germaine]

Thank you everyone for the help and advice. It really means a lot to me to get this kind of help. I'm going to incorporate most of your suggestions and hope I have a little better luck in the future with my recovery. Germaine
ps, my last post got locked out I think, so hope I'm not repetitive.

[Carol]

My doc and rheumy are very pleased with my progress but do not mention the remission word. I've decided not to worry too much about achieving the R thing as they continue to keep a good eye on me. As far as I know I have not had any ANCA tests after the initial diagnosis. When I first got sick a biopsy of the lesions on my hands - big watery purple black ones -showed negative anyway.
The best way for me to combat shakiness and tiredness is to meditate. I have often mentioned this - I do 2 sorts now. The latest one uses Beta waves and I need to use earphones for it. After about 20 mins (it goes for 30 mins ) I begin to feel agitated so I figure i maybe I've had enough. The rest from meditation is quite different from sleep. When I had started to improve I decided to just have a sleep instead but it does not have the same beneficial effects I found. Regards Carol

[Doug]

There truly isn't one protocol! I've had one cANCA test every six months since diagnosis, and more often if there was a sign of a flare and a more definitive answer was needed.

[KtheC]

As active as I am now, my doctors are very, very happy. The "R" word has never been mentioned. All that has been said is that I don't need to be afraid anymore. Though in my own little world in my head, I have to believe I am well into "R". I do work out hard in the gym, most other things I take easy. I am sure wear lots of sunscrean and am very careful about what I eat. I never drink soda, so that's a plus as well. Be positive! I know that is difficult, but it's what got me through and I was at deaths door.

[Doug]

As active as I am now, my doctors are very, very happy. The "R" word has never been mentioned. All that has been said is that I don't need to be afraid anymore. Though in my own little world in my head, I have to believe I am well into "R". I do work out hard in the gym, most other things I take easy. I am sure wear lots of sunscrean and am very careful about what I eat. I never drink soda, so that's a plus as well. Be positive! I know that is difficult, but it's what got me through and I was at deaths door.

You are making us all look bad by comparison! If you feel well, are doing well, and the medical signs suggest the "R" word, you probably are there. I think that idea- achieving "R"- becomes so important the first time around, that we sometimes miss the fact that we are starting to function more like our old selves again. I hope you are in remission, and keep up the good work!