onatreetop update

**annekat** · 10-02-2012, 04:18 AM

True, there are dental schools that will do work for a lot less. If you can find one associated with a top university, that sounds even better. Here, we have the University of Washington with both a medical school and a dental school, which I've heard have resources for people who can't get help any other way. A little far for me, though, about an hour and a half drive. Not that I wouldn't do it if it came to that.

**onatreetop** · 10-08-2012, 02:29 AM

Alot has happened in the last 10 days. WG stopped by and reared its lovely head. Ended up in infusion with mega doses of steriods for 3 days. 1 gram a day. That was fun. The second day I was better but the third day the swelling got bad again. feet and legs this time. And that wonderful flu like feeling that comes with all of it. Back on cytoxin 25mgs for now. we where woriod that the last infusion of rituxan was only 11 weeks ago and overlapping them. The rituxan only worked for about 2 1/2 monthes this time. Not long enough. Labs said T19 cells at zero which seem to be another issue.
The other issuse was the pain. I tried making an appt. with the pain clinic doc and left messages for a week. No response. Doc soloways office finally called for me and got through to make an appt for a refill visit.Got in and explained thatthe system doesnt work for me because every day is different. Then asked about brake though short acting pain meds and they said no. Back at Soloways the next day told him what happened and he called the pain doc on his personal cellwho was at the airport getting ready to leave the country. He said told him he doesnt normally ask about stronger meds or messing if the contract between them. He convenced he to let me get the meds. I havent had to take them yet but he went that far to make sure I had them and his help. He has gone over and above the call of duty many times now. Thats why I keep him. Feel better than I did but the swelling feet and legs are new to me. Never there before. I was kiddnapped by my sister in law and am in Vermont for the long weekend. It is breath taking. All we want to do is sit an stare at the lake and trees in there fall folage. We are very content just abborbings the calming amazing scenery. Will never forget this trip. The drive wasnt easy 8 hours with our youngest brat boys. But they made it alive. My hands kept cramping really bad even though we stopped every couple of hours. Drank water the way up but ended up taking extra valium to keep the blood presure down. Still at 32 mgs of steriods. Better than 1046 mgs during infusion days. So here I am..................Trying not to visit the local hospital as part of the trip.

**KathyB** · 10-08-2012, 06:46 AM

Originally Posted by onatreetop

Alot has happened in the last 10 days. WG stopped by and reared its lovely head. Ended up in infusion with mega doses of steriods for 3 days. 1 gram a day. That was fun. The second day I was better but the third day the swelling got bad again. feet and legs this time. And that wonderful flu like feeling that comes with all of it. Back on cytoxin 25mgs for now. we where woriod that the last infusion of rituxan was only 11 weeks ago and overlapping them. The rituxan only worked for about 2 1/2 monthes this time. Not long enough. Labs said T19 cells at zero which seem to be another issue.
The other issuse was the pain. I tried making an appt. with the pain clinic doc and left messages for a week. No response. Doc soloways office finally called for me and got through to make an appt for a refill visit.Got in and explained thatthe system doesnt work for me because every day is different. Then asked about brake though short acting pain meds and they said no. Back at Soloways the next day told him what happened and he called the pain doc on his personal cellwho was at the airport getting ready to leave the country. He said told him he doesnt normally ask about stronger meds or messing if the contract between them. He convenced he to let me get the meds. I havent had to take them yet but he went that far to make sure I had them and his help. He has gone over and above the call of duty many times now. Thats why I keep him. Feel better than I did but the swelling feet and legs are new to me. Never there before. I was kiddnapped by my sister in law and am in Vermont for the long weekend. It is breath taking. All we want to do is sit an stare at the lake and trees in there fall folage. We are very content just abborbings the calming amazing scenery. Will never forget this trip. The drive wasnt easy 8 hours with our youngest brat boys. But they made it alive. My hands kept cramping really bad even though we stopped every couple of hours. Drank water the way up but ended up taking extra valium to keep the blood presure down. Still at 32 mgs of steriods. Better than 1046 mgs during infusion days. So here I am..................Trying not to visit the local hospital as part of the trip.

You've had quite a time of it! But it sounds like your support system is incredible. Taking in a long Vermont weekend was a brilliant distraction for you! I hope you will continue to find comfort from the meds AND those around you. Take care of yourself!!

KB

**drz** · 10-08-2012, 07:18 AM

The best sounds like being able to enjoy the beautiful Fall colors. Ours are mostly gone after last wind storm with little snow mixed in. Like you plan to avoid more hospital stays if possible. Good luck with that one.

**onatreetop** · 10-14-2012, 09:27 AM

went back to docs on tuesday after we returned from vermont. The swelling was still bad and now can feel it brewing in my left foot. He took a look and increased the cytoxan to 50mgs for now and have to visit weekly and labs weekly for 6 weeks. He said he still has room to play with the doses until the the white blood cell count go down to 3000. Thats the limit. spinal tap scheduled for monday am. Also biopsy of right foot thursday. or the cubfoot as we named it while driving back from vermont. instead of a leadfoot a club foot was going to be my excuse if we got pulled over.
The weekend was beautiful and amazing for the most part. the only stress that wasnt fun was the evil spawn boys several times during the day. It did rain off and on the whole weekend. We did go to the national park at lake dunmore and drove all the way through the mountains to several overlook points and stopped at a very old cemetary. the stones we could read where from the late 1700s to very early 1900s. It was a great way to see over two hours in the mountains.

So........the stroids are at 36mgs and the cytoxan 50mgs, bactrim back on board aslo.

**onatreetop** · 12-02-2012, 01:29 AM

Hello everyone!! Helen and I are both on cytoxan again. She at 50mgs and has lost all her hair. I am at 150mg and coping well. My body is falling apart but my mind is still working kinda. I am going to get my first replacement part dec. 17th.....A whole new right hip!!!!! I waited as long as long as I could.The ferum head is breaking in pieces and the bone is dead. So have to fix it while there is still something to work with. 3 weeks recovery give or take a week either way. Going for a lumber injection before the surgery, my idea to avoid extra pain.also a muscle and aurul nerve biop. Had skin biop done and cyst removed from my back also. Pulm. functutions are good and have clearance from all the docs. And everything is a go as of now. Rituxan wont be used again til sometime next year. It only worked for 10 weeks the last time. The Doc said there is a new dosing scale for wegeners patience that we will use when its time.

Otherwise I am a pred head again. Moon face and body to go with it. I am staying active as much as possible. Better to move it than get swollen and stiff. Next replacement will be a knee but going to wait as long as possible.

Hope all is well with all of you guys.......think of you all every week while waiting in the many docs offices saying to myself how can I keep up this pacwAnd how do others? 14 visists this week.................................ugh.

**drz** · 12-02-2012, 01:35 PM

Originally Posted by onatreetop

Hello everyone!! Helen and I are both on cytoxan again. She at 50mgs and has lost all her hair. I am at 150mg and coping well. My body is falling apart but my mind is still working kinda. I am going to get my first replacement part dec. 17th.....A whole new right hip!!!!! I waited as long as long as I could.The ferum head is breaking in pieces and the bone is dead. So have to fix it while there is still something to work with. 3 weeks recovery give or take a week either way. Going for a lumber injection before the surgery, my idea to avoid extra pain.also a muscle and aurul nerve biop. Had skin biop done and cyst removed from my back also. Pulm. functutions are good and have clearance from all the docs. And everything is a go as of now. Rituxan wont be used again til sometime next year. It only worked for 10 weeks the last time. The Doc said there is a new dosing scale for wegeners patience that we will use when its time.

Otherwise I am a pred head again. Moon face and body to go with it. I am staying active as much as possible. Better to move it than get swollen and stiff. Next replacement will be a knee but going to wait as long as possible.

Hope all is well with all of you guys.......think of you all every week while waiting in the many docs offices saying to myself how can I keep up this pacwAnd how do others? 14 visists this week.................................ugh.

Sounds pretty rough and hope you get through everything OK. Nice to see you are feeling good enough to update us on your status. I get stressed from just having 14 visits in a month and get anxious over a minor flare with increased bleeding in sinuses. Suddenly after reading you story I really feel much better. Good luck with the surgery and treatments and best wishes for better health soon.

**HopeinTN** · 12-11-2012, 10:12 AM

Good luck with your surgery and a speedy, peaceful recovery. I don't know if it's an option for you, but for my lung lobectomy I had an epidural put in before surgery for meds after surgey. It was by far the best decision I made. Not saying I didn't feel the pain, but no where near what it should have been.