This is new to me.

[onatreetop]

I was diagnosed the end of June and began the meds asap. It has been a rollercoaster ride. But finally, after the monthes have gone by and I lost the energy of the teenager I had in the begining I have been looking for more answers.

I am forty-one and there has never been another case found in my family history. The levels the doc was hoping for are all there and good but I am still on all the meds. I was told that because it was found early that I wouldn't have to stay on the meds more than four monthes but.........I am still on and begining to feel the tired strain of 4 kids, 5 including the husband and the meds.
I have gotten some of the flow back into my hands and the other areas have not changed or progessed. So the meds are working. I am greatful that my very aggessive doctor did every test under the sun to find out I had this and not carpul tunnel or arthritis. My doc has only seen twelve people that have had this and eleven where to far along to help. All that he could try and do was make them comfortable. That was scary to hear.

Everything that I have read averages the meds at about a year? Then maintenance if ness.. Still go for blood work and catscans and mras , etc. and am starting to wonder how much radiation I can take in this short time? I still have my own small business and work it alone a few days a week.

Everyday is different but the same. Hoping for my energy to come back. :o

[andrew]

Energy is that slippery beast that always seems to stay just and inch or two out of kicking distance :) The more we force ourselves the further away it becomes although it sounds like your life is forcing you rather than the other way around! The more you look after yourself the more chances you give yourself of getting some more energy. Does your family appreciate what you're going through?

The amount of time you're on medication will be something that only you will experience. You've probably heard this a million times (no exageration!) but everyone is different. Some of us go through several months of medication and can exist without or with minimum med after that. I for one am not one of those people :) I have been on varying meds since 2003 with no sign of any change in that situation. I find (and this is just my personal experience) that the more I concentrate on finally kicking the meds or even going into remission, the more depressing it is and the more unlikely it seems. Weird yes but true. No one can accuse me of being normal! I keep trying to feel better i.e. healthy every day. The more normal/healthy I feel the less everything else seems to matter. Easier sad than done for many but nevertheless, taking the focus off kicking the meds or going into remission can only be a good thing.

The radiation from all the scans, xrays MRI's etc is pretty much negligible. I've had millions (no exageration) and I'm not glowing yet :D Seriously though, you have more to worry about by staying out in the sun too long and getting sunburned :)

You certainly sound like a person with a lot of drive. I can appreciate how you feel wanting that get-up-and-go back again. What kind of business is it that you run?

[Sangye]

(Andrew, the radiation from medical procedures is definitely not negligible. You might be thinking of dental x-rays or the very occasional extremity x-ray. CT scans are extremely high in radiation)

I'm the same way when it comes to digging my heels in and insisting that I'll be in remission, off meds, whatever. It always backfires. I think it's just that any time we harden our minds about something, it hardens the circumstances, too.

Getting dx'ed with Wegs as a chiropractor, I came into this with a very hard-edge opinion about how wrong meds are. And I was going to get myself off them way faster than normal, you can bet that! What happened is I got sicker faster with more and weirder complications than normal. With a lot of therapy I've developed more of a "bend instead of break" attitude. Even when things go wrong it doesn't get me down as much--not all the way to the bone, anyway. And I can see a light at the end of the tunnel. There's a way to move forward with motivation and not force.

[Doug]

Long term, we all may find cancer is our new BF for a while. I've often felt WG won't kill me, but something (disease) that WG made possible by weakening my immune system or because of WG treatment (Cytoxan- increased bladder cancer risk, for example) will. I don't worry about it. Of course, I haven't had that much radiation exposure after the first year. That could take the "smug" out of me reasonably fast if I had had more exposure.:)

[Jack]

Bet it will be something you are not expecting that gets you! Post to let us know when it happens. ;)

[Doug]

Ha! I suspect I'll be toasting in Heck before I figure out I'm dead!:rolleyes:

[onatreetop]

I do try to take one day at a time. Some days are much better then others. I have found what you say to be very true about the will to get better then going to the doc and him saying see you in five more weeks. It is very depressing when I hit that speedbump. I believe he is just trying to give me hope but...poop. I have become more aware of my symtoms and sometimes think that allergys are part of the WG. I have always had them. But conjestion has always effected my hearing and sinus. I forgot to mention that my mothers family has a hugh medical history. She doesnt have WG but there isnt much else she doesnt have. I had my first TIA in the spring. I figure if I am on her path I am about ten years earlier than her with symtoms for cur. art. dise. I was diagnosed with arth. in my hips and back in my early twenties.

I have my own cleaning business. So energy is required. Again, somedays are better than others. I know that most of my hand pain is aggrivated by the work but the pay is wonderful for hardly any time at the job. Most of the people I work for I have been cleaning for 5 to 12 years. You could say that I am a part of there families and houses. It took me 2 years to find work that allowed me to be home when the kids were and still make some cash. Now they are all in school and I try to work as much as possible. Things have slowed down of coarse. I am after all a lux option.

The urolgist appt.went okay. I thought I had caught a stone frag after the litho. but I didnt. It was setiment from our well water. oops. He wants me to drink a min. of two quarts of water a day and take 2000mg of vit. c. It was that or three more meds, no thanks.

I try not to act sick and I just keep moving. So............my family doesnt really SEE that I am not well. They just see a tired mom trying to keep up. I am a person who would rather laugh at everything rather than cry. Crazy? Yes , it is the only thing keeping me from going insane! Once in a while I do get overwelmed. It seems to happen about once every three monthes than I pick myself back up and get moving again. I do that for me and my family because I have found that when I feel like poop, the world around me turns into poop.

Thank you all again. It is comforting to know that there are others going through the same frustrations that understand, Kristi

Does anyone overheat the way I do? It can be 45 out and I am sweating.The swelling in my face is only once in awhile but it is like wearing a neon sign. I have made everyone aware fof my situ. Them being worried about me I had too.

[onatreetop]

I found out that a catscan , depending on legnth of time, is equal to 750 regular xrays, min.. yeppy!!:eek:

[Sangye]

I'm not sure where you got that number--it's way too high. No one would survive such a radiation blast, much less repeated ones.

Chest x-ray = 10 millirem radiation
Chest CT = 580 mrem.
So a chest CT is the same radiation as 58 chest x-rays. One CT scan is no big deal. Repeated CT scans to the same body area are not good. And if they use contrast dye, the radiation exposure is higher.

It's good to know this, because doctors will often order a CT just for the heck of it, often to cover their butts. Many times they don't realize how many you've already had. You should keep track and remind them.

I've had the same obstinate ER doc twice at Hopkins. Both times she's insisted on ordering a chest CT angiogram (uses contrast dye to show the blood vessels in the lungs) to rule out blood clots, even though my blood clotting levels show that there's no way I could form a clot and I don't have any symptoms of them. (I've had a ton before so I know)

I've had to argue with her both times. Not only is it much higher radiation, but each time they use dye, you're closer to possibly developing an allergy to it. And, for an angiogram they have to shoot the dye much faster than usual so they need the IV in a good vein. I have major vein issues and IVs are a nightmare. Because I know these things and know my body, I've refused to have the angiograms both times. A regular CT was warranted, with regular contrast dye. She was furious, but I'm the one left with the consequences. My Wegs docs later told me I was right.

[Doug]

Yes, I overheat very easily. It's frustrating to be sitting there in a sweat bath on a cold day, but I've pretty much got used to it. :(

[Sangye]

If you're on higher doses of pred, you will overheat a lot. It's one of the hardest side effects for me to deal with. Bleh.

[onatreetop]

It is thank you. I thought I would have superhero powers by now or be dead with a number that high. That info came from someone other than a doctor too. There goes that info fountain.

I remember six test with contrast. lately anyway. Two were nuclear testing. The last was a ct angio for my hand. The Tech said they only do two a year. I have been running warm to begin with but the hot rush was the strangest feeling I have ever had. Talk about HOT!

I do think about all the wonderful germs and illnesses that my family may bring home to me but I try not to freakout about that one either. I take a number of vitamins and wash my hands often.

I have to say that life looks a lot different after the dx. That and the surprise lose of my closest friend of 21 years. Sudden heart attack . She was 50.

I am sorry if I sound like a wiener but it has been a messed up year.
I could keep complaining but I am getting tired of that too.

I am happy to have woken up and tackle the day with all its obsticales.
Please forgive the bad spelling. May grammer/spelling went away after the twins were born.:D

[onatreetop]

I started on 60mg. That was way to much For me I thought. I couldn't stop shaking or sleep.My blood pressure went crazy high. After two weeks went down to 40mg. Then two more weeks at 20mg and have been at a steady 15mg since.

The cytoxin started at 25mg for a week than to 50mg. That is still the dose.

The bact. was everyday for the first month. Now three times a week.

Got a flu shoot for the first time too. There was another vac. I got early on too. Cant remember at the moment what it was for? Oh.................well.

Any thought on the Swine flu vac? I dont no if the doc is going to push that one on me too or not? I wont be surprised if he does.

[Sangye]

Unfortunately, the pred hits hard and there's no way around those high doses when you need them. On 60 mg, everyone has shaking and insomnia, high bp.

I'm surprised you're only at 50 mg ctx. That's very low. It goes by body weight, so maybe you're small??

You don't have to worry about sounding like a whiner (or a wiener--that was a hilarious typo BTW). We all understand what it's like living with Wegs and trying to make it fit into the rest of life's ups and downs. I'm sorry you lost your best friend. That must be hard to reconcile along with Wegs.

[onatreetop]

The pill is pretty big to get down I have to say. But down it goes. The doc says that he really doesnt like to keep anyone on it more than 4 monthes? Everything I have read says different depending on how advanced it is.
The doctor that is treating me I went to for an arth. eval. He is one of the top docs in the country. Happened to stumble on him. He seems very sure of himself and is well very different.

I do miss the late night phone calls for hours talking about everything with my bf. I sometimes think of the conversations we have had and never did they end with anything but laughter. There may have been tears during our conver. but always laughing. We really knew how to listen and talk to each other. We knew things about each other that we couldn't talk about with anyone else. That is a best friend isnt it. She was a guardian too. She has a few years older (ten) and she was my mom away from mom. We never had a bad time together always great. I cant even say that about my husband.

The losing weight is a joke to me. I keep waiting for that to happen but............I am not that small either. average height and a bit overwieght and gaining. I am very active and very rarlely sit down.

So I am confused about the pred.. Is it to go for the immune system or pain or both? I am sleeping better now but I think it is from exhaustion more than anything. i have been taking elavil for about 10 years off and on again. It does give me a deeper sleep quicker. That is the only thing that has made the 6 hours I get really good. I was one of those people who slept very lightly and woke up with every sound made. I was losing it. thats when I asked for help and got it.

So......wg showed in my hands and lungs. Everything else came back okay. It does explain this strange feeling in my face. For years the left side has felt swollen and sometimes numb. But nothing showed there in all testing except the div syptom from a bad nose job when I was a teen.

I tried the injections for my hands but it made them seem worse. So I wont be doing that again for a while. The next pain to deal with will be the tendonits.

Is the easy bruising part of the pred too? I did learn quickly about the sun over the summer. never had to use sun block over 70 before this last summer.

Thank you again. I keep thinking about things and find more questions. Thank you all for your time and help. It is nice to know that there are good people all over the world that care enough to share there knowledge and experiences.

[Sangye]

You can have an excellent rheumatologist-- top in his/her field-- but still not have a Wegs specialist. My rheumy at Mayo Arizona was like that. Awesome doc-- way better than my local docs at the time-- but didn't see Wegs day in and day out. The Wegs specialists all do Wegs research. When I got to a real Wegs doc at JHU, the difference was unbelievable. By 11:00, I was his 5th Weggie that day. Even the non-Weg rheumys at JHU-- who are truly exceptional rheumys-- are stumped by Wegs and missed my current flare.

It's good that he respects the toxicity of ctx and is hoping to get you off in 4 months, but that may not be long enough. (Or it may be too long if it's not the best drug for you) Ctx is usually given for 3-12 months. It varies enormously, depending on your response and how well you tolerate the drug.

Pred is an anti-inflammatory and is also an immune-suppressant. Its role is to put out the fire enough for the main immune-suppressant (cytoxan in your case) to work on the Wegs. They used to treat Wegs only with pred, but had a 50% survival rate within the first year. It's not enough. This is why I'm concerned about your ctx dose. Are you taking 50mg ctx TOTAL each day? It's usually 150-200 mg per day.

You can forget about losing weight while you're on such high doses of pred. I don't want to sound negative-- it's just a cruel reality of the drug. It makes you lose muscle and store fat. It also makes you want to eat your way across the state each day. There's not much you can do about it. Try to control your eating as best you can and hang on. Pred thins the skin, so you'll bruise easier.

It's great to ask us all your questions. There's no reason you should be in the dark on any of this!

[Doug]

Onatreetop, don't worry about passing the English exam on this forum. Don't worry about grammer and spelling.

The important thing is you state your concerns, your fears, answer a few questions from time to time (your Cytoxan dosage seems off to me, too.
The trend seems to be to limit a weggie's exposure to the drug, but I wonder if non-weggie specialists are able to handle the appropriate monitoring and dosage adjustments that may be needed in your treatment to get the best results possible.

Also, don't worry about unloading plain crap you feel right now. We know it's the Official Poison of weggies on this site talking, not the wonderful person you surely are off the Prednisone: it's normal to go through a huge range of emotions during the initial stages of healing. That's another reason we're glad you joined us on this forum: each of us went through a whole range of emotions during the initial stages of our healing, too! We can help you.:)

[onatreetop]

Thanks again! So much info that actually makes sense. So my RA is not the doc I need. I checked the web site for the closest doc and it looks like maryland. I am having a heatwave at the moment. My face looks like someone has been slapping me around! Red oh yeah. I wonder if I could fry an egg on my face when it is like this? Not going to try though.

I went to a Halloween Party with no kids for the first time in twelve years. I dressed up like a devil being red most of the time I thought it was perfect. danced for four hours and was sore the next day but had a load of fun. Only knew 3 of the 25 people there so I didnt care what anyone thought. Had a blast. Still recovering sort of.

[RCOSSIO]

Don't worry about ur face...last year at 60mg of pred, my wife painted my face orange, put a candle on top of my head had me sit in front of a window sill and called me "Jack"

Thank goodness I am close to 10mg of pred...swelling of face sure has gone down...

[Sangye]

If you can get to JHU in Maryland, you won't regret it. You can see the Wegs doc there and have him consult with your local docs.

[onatreetop]

What a great idea!! I am at 15mg right now. I go back to the RA the first week in November. Maybe? Just maybe he might cut something again. I do love the pumpkin idea. I thought the devil was pretty good too. I guess I would be pushing it if I tried to be the blue berry girl from Willy Wonka and the Chocolate Factory. That would have to have been in the first three months of treatment.

[onatreetop]

So make the appointment and bring everything. Test, images, etc.?

[Doug]

You are batting a thousand, Richard! Jack o' lantern indeed! That was a belly0 laugh for sure! :):):):)

[RCOSSIO]

OMG...you are talking about "Violet Beauregarde" you need to use that as your Halloween Costume....GREAT!!!!

[onatreetop]

Thats what I was thinking. What a better time to make the most of it!!