onatreetop update

[onatreetop]

Hello all. Been a long time again I know. Have had lots of adventures in the way of the weggie. Kidney issues Stones, got me a weeks vacation in August. Was on a mophine cruise for a week and 3 surgeries later kidney was saved thank you greater power. Stones blocked it but got it in time before it blew. So I still have my orginal parts so far.
Now I have been off the remicade for 3 monthes and started retuxin 8 weeks ago. Its been interesting I guess. It has come with antibiotic and 125mg steriod bags also. so it was 4 bags this infusion which is number 2 of the treatment. with the weather changing it hard to tell if the aching is from the wg or not.

I also found out left hip is broken but funtioning some how. Will need to replace it aventually along with all the others at this point. The steriods are sitting at 16mgs of medrol. Tried to tapper but only got to 12mgs and could not function. so went back to 16mgs. The problem is it is eating away at all my joints. I asked the rhumy if i will be the bionic woman in ten years. She said lets hope not.

Hand surgery is planned for the 22nd of dec. left hand this time. the joints are swollen enought that they dont work well and are in pain most of the time. hav e the drops worse.

Having the throat dialated again tuesday. If it doesnt last longer this time I have 2 go 2 penn univ. and find a GI there.

Started lube shots for the knees also. only on the second round of shots but havent noticed an amazing change yet. right knee is bone on bone and is very loud going up the stairs so that will be another replacement in the future also. Every doc wants to wait as long as possible i am turning 44 this month. They don t want to do any of that this early. me neither.

so thats a brief summery of the last three monthes.

[Dirty Don]

This last summer has not been good for me either...you're a battler ona, keep it up, a good inspiration for those of us who need it! Thank you for the update!

[onatreetop]

I decided that it is better to feel alive than waiting for the next bad news. With 4 kids I dont take time to feel sorry for myself much. I just get upset. and that doesnt help anyone around me so I try to laugh instead. Yes the pain is there and am scared but take it a day at a time and just keep going. its better for the family and I that way. when I tell them I need help or rest they are finally getting it. Also it is better laughing at everything even if its sarcastic.
And of coarse the good old move it or lose it is so true. I have proven that one to myself.

[Chris G]

Oh my, it seems there aren't many parts of you that weg hasn't affected! I hope things are turning around for you. Four kids! My two boys keep my hopping! I don't know how I'd do it with 2 more. Kudos to you for sure!

[onatreetop]

Thank you. They do keep me moving. 3 teens and one 8 almost 9 year old. They are all effected by the WG.More so than my husband. The youngest is having a hard time being away from me. He's afraid I might not come home or end up in the hospital again. He and another were with me when I went into the er last time and then they kept me for a week. So I have made the extra effort to do things with him. We take art lessons together and he joined cub scouts. I have a boy scout working to Eagle in the future also. We were all in the town pararde yesturday on floats. It was good for them hard on me because of the infusion was the morning before but it was another memory we have togeteher. Making memories is my goal besides keeping some of my own parts.

[Chris G]

Thank you. They do keep me moving. 3 teens and one 8 almost 9 year old. They are all effected by the WG.More so than my husband. The youngest is having a hard time being away from me. He's afraid I might not come home or end up in the hospital again. He and another were with me when I went into the er last time and then they kept me for a week. So I have made the extra effort to do things with him. We take art lessons together and he joined cub scouts. I have a boy scout working to Eagle in the future also. We were all in the town pararde yesturday on floats. It was good for them hard on me because of the infusion was the morning before but it was another memory we have togeteher. Making memories is my goal besides keeping some of my own parts.

I don't know how you find the energy for all of that! Fatigue seems to be my most lingering symptom lately. Good for you!!!

[onatreetop]

b complex vitamins. somedays are easiers than others for sure. thank you b vitamins!

[Al]

b complex vitamins. somedays are easiers than others for sure. thank you b vitamins!

Ah, we do find ways to cope. You've been through the wringer for sure. Keep hanging in, and taking those B vitamins!

Al

[onatreetop]

oh yeah! tried caffine first but it wasnt working well then i tried the vitamin b and that did the trick. I am a very determined to find a way if it is at all possible. Some meds have the backwords effect on me also. but the vitamin works for me.

one other thing did that the docs directed me otherwise is was to take the water pill in the night before bed instead of the morning. now when i wake up i am not as swollen and stiff. might wake up once a night to use the restroom but very rarely. Again works for me. not for everyone i know.

Almost forgot that i have to fast later tonight for the stretching in the morning.cant wait to eat and drink without gaging again.

[elephant]

It is good to hear from you ONATREETOP, I undertand how busy you are. Hope you start to have less pain.

[onatreetop]

Thank you also. Good to know whats going on again. Was disconnected from the outside world it seems for sometime. Just reading and hearing from you and others makes me feel like I am not alone again. many things are more possible just knowing that the wonderful and understanding people here are.

How have you been doing Elephant? Very well I hope.

[Sangye]

You have really been through the mill, Tree. I'm glad you let us know how you're doing. I miss you! I hope this round of rtx works well and helps with the pain.

[jola57]

I missed you too and am so sorry you had to go thru so much. I hope the pain eases quickly and you can have a great Christmas with your family.

[onatreetop]

Thank you all again. I miss you as well. And hope to keepup more often. Had a busy week. Monday infusion tuesday esoph. stretched with stomach biopsy. not digesting foos well sitting in my stomach more than 16 hours afer after eating? stomach was swollen also. so that will be interesting. wednesday eye docs. He put silicone beads in my tear ducts to keep the moisture in from the dry eye. Thursday was 3rd set of lube shots fro the knees. friday just work thank god. Had the split mwith nade for left hand to wear after surgery. Back on the nubb treatments i am sick with a cold and no voice at the moment.
The only new news is eyes. plugs and steriod drops. @ liesons and the start of cateract in left only. doc wants me to wait a few weeks of treatment then check for new lenses then. Made appt with ortho about new knee braces for the week and a dentist appt. to have 3 abs. broken teeth removed by oral doc. I am trying to get everything done this month. met the family deductable so............a very busy month for me.

[onatreetop]

Happy Holidays!!!! I am home and ok. had left hand surgery 2 remove swollen bone and white cell masses. So far so good. The dressing managed to work its way off partial the first night so had the gp redo the dressing. Resting at home. soreness is getting stronger but I am also kinda using it once in a while. it is wrapped up in a soft dressing til next week than a splint most likely after swelling goes down. Trying to keep the kidneystones at bay. They remind me that there there.
Just happy to be home. pulse ox is a problem when coming out of anist. but we got it up by moving around and talking. So I got sprung from hospital in philly. Hope everyone is doing well and we are hospital free for the holidays.

[Al]

Happy Holidays!!!! I am home and ok. had left hand surgery 2 remove swollen bone and white cell masses. So far so good. The dressing managed to work its way off partial the first night so had the gp redo the dressing. Resting at home. soreness is getting stronger but I am also kinda using it once in a while. it is wrapped up in a soft dressing til next week than a splint most likely after swelling goes down. Trying to keep the kidneystones at bay. They remind me that there there.
Just happy to be home. pulse ox is a problem when coming out of anist. but we got it up by moving around and talking. So I got sprung from hospital in philly. Hope everyone is doing well and we are hospital free for the holidays.

Hang in there! Resting at home sure beats not resting somewhere else....

Al

[elephant]

Get better soon ONatreetop. Merry Christmas!

[Sangye]

Glad you're moving through it all, Tree. Take good care of yourself. :smile1:

[onatreetop]

Happy New Year!!!!! Hands doing great. My car on the otherhand I am afraid played chicken with a telephone poll and lost for the most part. I dropped a key picked it up and cut the wheel as hard to the left as I coulds with with the spilt second I had. Saved myself from a head on but still shaky. The EMTS checked me out no cuts or bad hits. Promissed to go to to the ER if the I had problems. Rested the rest of the day. Made all the calls . So from what I have heard the next day is the worst and will findout if anything is not right. Side airbags opened but not front. So I got hit to the side abit while I was wearing my new glasses which are fine. Afraid the car is totaled. Bummer nicest car I ever owed or probably will. I know a car can be replaced and am blessed to have made that left turn or my family and children would be without me. Hard to believe after so many years and witnessing accidents by the hundreds on the same road and so many polls down and replaced over the years that its happened to me. My oldest son was home and rode his bike in 30 degrees because I couldnt get my husband or find him. He eventually drove by and stopped to help empty out my car. Got me home and havent left te house yet. Missed 2 doc appts. today. oh well can start again in the am.

[elephant]

Wow, Sorry to hear that ONatreetop. Glad you are ok.

[Al]

Happy New Year!!!!! Hands doing great. My car on the otherhand I am afraid played chicken with a telephone poll and lost for the most part. I dropped a key picked it up and cut the wheel as hard to the left as I coulds with with the spilt second I had. Saved myself from a head on but still shaky. The EMTS checked me out no cuts or bad hits. Promissed to go to to the ER if the I had problems. Rested the rest of the day. Made all the calls . So from what I have heard the next day is the worst and will findout if anything is not right. Side airbags opened but not front. So I got hit to the side abit while I was wearing my new glasses which are fine. Afraid the car is totaled. Bummer nicest car I ever owed or probably will. I know a car can be replaced and am blessed to have made that left turn or my family and children would be without me. Hard to believe after so many years and witnessing accidents by the hundreds on the same road and so many polls down and replaced over the years that its happened to me. My oldest son was home and rode his bike in 30 degrees because I couldnt get my husband or find him. He eventually drove by and stopped to help empty out my car. Got me home and havent left te house yet. Missed 2 doc appts. today. oh well can start again in the am.
It's wonderful that you made your move at the right time, Tree, though it must be tough dealing with the aftermath. Happy new year, indeed! But...stuff...happens, and we move on. Toward that end, I advise you to get out of the house soon, if only for a walk. It is therapeutic to be part of the bigger world. Secondly, I vote strongly for you to visit a really good massage therapist. Every part of your body will thank you!

Al

[onatreetop]

once again another reminder............thankful for everyday I wake up. How you doing? It has been a while Elephant?

[onatreetop]

Al that does give me something to think about doing it has been a long time since I have seen the ciro. He kind of got put on the back shelf with all the other doc appts. I will wake up in the am and start over again. Thank you.

[elephant]

Doing good, can't complain...busy with kids, dogs, doctors and denist. I too am thankful to wake up everyday and eat, drink, walk and talk.

[Al]

Al that does give me something to think about doing it has been a long time since I have seen the ciro. He kind of got put on the back shelf with all the other doc appts. I will wake up in the am and start over again. Thank you.

As I opined in another thread, healing, of all kinds, comes mostly from within. This starts with feeling good. You owe it to your overstressed body to do something nice for it!

Al

[onatreetop]

I am all for it right now. i have cut my work back so I can be home more regular hours for the kids. And also try to schedule work and appts. durring the day. It has been taking a toll on all of us. The docs and time and money but if it meeans me feeling better than not I go and do it for myself and kids. Husband is still in denyl about me having wg. he thinks its a doc scam etc. Yet he wont go to an appt with me to here it from the source. Anyway, i do try and still will to take care of myself. I had 5 appts for this week but missed mondays and todays. See the RA in the am thats the one that counts, Got labs back and numbers are boarder line. See whats next. Just had the infusions last month so I was hoping they would be better than worse. Will update again wednesday. Thats for letting me bend your ears this evening. There is something very leveling about this group of good souls even as the names change. Thanks again.

[Al]

I am all for it right now. i have cut my work back so I can be home more regular hours for the kids. And also try to schedule work and appts. durring the day. It has been taking a toll on all of us. The docs and time and money but if it meeans me feeling better than not I go and do it for myself and kids. Husband is still in denyl about me having wg. he thinks its a doc scam etc. Yet he wont go to an appt with me to here it from the source. Anyway, i do try and still will to take care of myself. I had 5 appts for this week but missed mondays and todays. See the RA in the am thats the one that counts, Got labs back and numbers are boarder line. See whats next. Just had the infusions last month so I was hoping they would be better than worse. Will update again wednesday. Thats for letting me bend your ears this evening. There is something very leveling about this group of good souls even as the names change. Thanks again.

Note to your husband: I understand your distrust of doctors. In point of fact, there is a grain of truth in the "scam" charge: The industry is happy to take your money whether the practitioners can actually help you or not. But Wegener's is a very real disease, and potentially a fatal one. But, these days, it can be controlled--usually--though even when controlled, most sufferers have tons of problems, ranging from cramps, rashes, and joint pains, to hearing loss, blindness, inability to breathe, and, in the worst cases, failing lungs and kidneys. While it is true that medicine has no cure for this disease, it is also true that without it, most of us with the ailment would be dead, and our families without loved ones. This treatment may be incomplete, because of incomplete knowledge, but it is no scam.

Al

[mishb]

Hi onatreetop and Happy New Year.

Ouch, your poor car. I am so glad you are okay, all things considered and hey, a car is just an object and can be replaced........you , my sweet, cannot.

I was also involved in a rather nasty incident prior to my WG diagnosis (a double semi decided it wanted to squash my little car) and thankfully for me I was not hurt at all ......but the next day, I could barely move .........ached all over.

Maybe do as Al suggests...... but either way try and get some rest, maybe a hot bath or shower and lots of sleep. Things always look better in the mornings .....but not for your car, unfortunately.

Take extra care of yourself these next few days and remember to always ...............

[Sangye]

Oh gosh, Tree. That's the last thing you needed! I'm glad you have a chiropractor already though. Don't wait to get in, okay? Hope you feel better quickly.

[Sangye]

Doing good, can't complain...busy with kids, dogs, doctors and denist. I too am thankful to wake up everyday and eat, drink, walk and talk.
That's great, Elephant! Where did you get to on your pred taper?

[elephant]

I am on 1mg of prednisone, but just recently went to the eye doc and having some swelling. Next appointment is ENT, possible CT scan of sinus to see if its wegeners or bacterial infection. THen back to the Eye and communicate to the Rheumatologist. The eye doc didnt want to up my Prenisone, he wanted to get things check out. I told him I don't think Im flaring, but the CT will tell the story. How about you?

[onatreetop]

wow 1 mg?that has to be tiny. And so close to the end. Great news for you.Hand is looking good . just tired of the weather. warm cold , cold warm, its painful on the joints. Anyway, have to retake some labs this week . had oral surgery this week also. teeth are braking.had to get the roots out. always fun in my world. never a dull moment.

[Sangye]

Wow, Elephant, I am just thrilled that you're down to 1 mg. I know how hard you've worked to get there!! It seems like a long time ago that you thought you'd never even get down to 5 mg. I'm doin' a happy dance for you. :thumbsup::hug3:

[elephant]

Thanks, I am dancing with you on that dance!:hug3:

[Lightwarrior]

Thanks, I am dancing with you on that dance!:hug3:

I want to join your dance even though I can't get below 5mg :hug3:

[elephant]

It took a very long time, to get down to 1. Don't give up, it is possible that you can get below 5mg.

[onatreetop]

Happy Feb!!! New month new start. Congrads on the lowest dose! Someday I hope for all of us we will make it there.

Jan. was a long hard month for my family and I. We just kept going with the speed bumbs and cliff's. Got a nasty virus that is still lingering in the lungs and sinus. More annoying than not.

My view on life and the world around me changed again as I was reminded that anything can happen in a blink of an eye. After totalling the car and being sick again I reliezeed it was time to live life instead of flowing with it again. An awakening of sorts. My daughter and I became much closer with her scare of the first time being late. Wasnt expecting that. But I have to say she waited longer than I did. she isnt late anymore thank you higher power. So we decided that it was time to take a look at the bucket list............We both had a few things that were the same. So......we did one. We got small matching tattoos in the same spot.. Only our intials inside a 3d heart. We went togetther and held each others hand and told each other no matter what the issue or problem we would be there for eachother. Oh and that we had eachothers back........the tattoos are on the top right hip on the back. I was so thrilled with mine that I decided and felt very strongly about my next one. Everyone close to me kept saying all month that I must have quite a few angels watching over me. ........I thought about it and said yes I do. So I went to work researching guardian angels and then images. I could pick just one so I pieced her together. Face wings etc. and most important four swords for the four strong close people I have lost over the years. The artist put her together on paper and two and a half hours later this amazing breath taking , strong determand guardian angel was permently placed on my right shoulder blade to watch over me. I dont have many friends with tattoos but the one friend I do saw her for the first time... it took her breath away and she said she had never in all of her worldly travels seen anything that amazing or alive. She and her husband have many tattoos and travel the world as enviormentalist. Sometimes they come home with souviner tattoos. They are mostly water related. They are both all about the ocean and saving it. Anyway......she said thats it .....my next is my guardian angel.
I did ask the docs for permission. They said the normal .....you are prone to infection etc. so I just made sure 2 keep it clean and everything is good. I feel like I have been given another chance to live and reminded to do so..... watchout world here I come!!!!!:hug3:

[Sangye]

I'm glad to hear you sounding so happy and revitalized, Tree. :thumbsup:

[KathyB]

I like your way of thinking onatreetop! Inspires me to be more decisive!!

KB

[mishb]

Wow, that's amazing.
Good on you. Look out New Jersey, here she comes :thumbsup::thumbsup:

[elephant]

Glad you have one permanently on your shoulder!

[onatreetop]

I am also. Keep just looking at it in amazment. I decided that she needed 4 swords for each person that is looking out for me. She holds one up and wears the others on a belt.

Green nasty mucus or not I am taking each day one at a time head on.

[onatreetop]

Yes here I come green mucus or not. aches and pains or not. I already have 2 more tattoos that I would like to do before summer.

[onatreetop]

make that 1 more tattoo to do before summer. also to some of the 50 extra pounds i am wearing.

[onatreetop]

Hello fellow Weggies! Just a quick whats up. Feb. was eventful to say the least. lots of docs appts and testing. thought i was dealing with kidney stones again but 3 urologist and an er visit later they all said no. all is stable nothing has moved and that they believe it to be reffered back pain. So whole body bone scan and another mri. They did let me out of the bone scan and asked me to wait and make sure they got all of the pictures they needed and put me back in for more. Asked if I had injured my right shoulder blade and chest area recently. of coarse not i would have remembered that or at least wrote it down. trying to keep a medical journal is time consuming but helpful to reffer too. cant remember everything. there is just to much.
I have my follow up appointment monday to findout whats going on. I swear it was the same pain was the stones. Flank pain. Otherwise labs were bad most of Jan.. Had 3 rounds of the cold that wouldnt leave before it finally did. I thought mybe the coughing but I was taking cough syrup to calm it and avoid damaging the ribs. guess will know more monday pm. The ER discharged me with a kidney infection. That was a joke. Even the urologist said you would have had a bladder infection first which didnt happen.
Saw the Endo. doc also. She told me to stop all vitamin supplements because they all contain calcium. I did but have to wait for labs to see if it went down. There were more crystals and a high count on the labs. I thought I needed more calcium because of the bone lose but if it isnt being absorbed I guess it will find its way out. i dont no anymore. So the docs are passing me around again. Hope all is well and your weather fair. i am feeling about 80 today. cloudy and 50 in NJ. Nap before work. check back later. need to do this more often. it is theraputic.

[annekat]

I'm glad to read your updates. You have some complex issues with WG and are a real trooper to manage them along with raising 4 kids, etc. The issues you bring up, such as calcium absorption, are helpful to us all. I know what you mean about the weather.... I'm hoping we all get a good dose of spring sunshine before long, which will help us maintain a positive outlook.

Anne

[onatreetop]

Turns out the whole thor. spine is bulging. My intire spine is in a very bad way also have frac. ribbs from Ra? Go to pain clinic monday. No injections from RA doc can help It is beyond that now. darn it all. See Endo. today thyriod is over the top also. Yippy! On the rollercoaster again.

[Sangye]

What do you mean your thoracic spine is bulging?

[onatreetop]

All of the disc in the thorasic area of my spine are bulging. Some more than others. also the pain I swore was kidney is fractured ribs bothsides. The bonescan found that out. The doc believes the disc is aslo raidating the pain to the ribs and hands. So I am going to have my first ever epideral in 2 mondays. RA doc said it was beyond his help and sent me to the pain clinic for the first time. Where I met a very nice and unique Doc who I got 2 educate about WG and whats new on the arthitis front. He is swedish I believe. Very heavy accent. Very interested and almost excited it seemed. he asked loads of questions and took the time to go through every single med with me and what it is for. That was something in its self. Most just look at the list and make some kind of face or move on. His staff kept coming in and trying to get him moving to other people he had appts/ with and he kept telling them to go away or wave them out of the door. We ended up in there for an hour drinking our VOSS water. He asked where I got mine? I told him TJ maxs or Marshells cant remember. He brought his bottle home from an over seas confence because, he said, he knew they would through it away. They are made out of clear glass and heavy as heck but a great size. So thats it for now. Like I said I am taking a doc. appt brake for a week if possible. Can only try.

just keep moving!!!

[annekat]

Tree, I'm glad the pain wasn't kidney, but sorry to hear about it all, anyway. Otherwise, I enjoyed your post, it was entertaining. Love the image of docs making faces while looking at lists of drugs. And that new doc sounds like such a character.... sorry he kept all those other patients waiting, but I think I'd be dreaming if got to talk to a doc for even half that time.

"Keep moving!" is great advice!

Anne

[Sangye]

Tree, I suggest you see a chiropractor. If you've got bulging discs you've got major underlying misalignments that caused them. You can treat the pain alone, but the problem and damage will only worsen if you don't address the cause. Also, you should know that just because a disc is bulging doesn't mean it's causing pain. So one or more of your discs may be causing pain, but all of them probably aren't. And--most importantly-- a large percentage of disc bulges are able to resolve. It's not a given that you remain in pain or need medical intervention.

[onatreetop]

Went in to a pain clinic for the first time and had my first injection in the t5 t6. so some of the side rib pain went but only the left. The right is still poking at me. I broke my leg in 2 places when i was a child. I also broke a few ribs. was in a body cast nearly 3 monthes. The ribs healed in the center but pointed inword. the shaped like an m. I hadnt had a problem with them until about Jan. . The test said that I had fractured ribs on both sides and they had begun healing. I am thinking that the RA or OA is taking its toll now. All I now is that it is painful and not sure if anything can be done about it. Can the rebrake ribs and set them or Remove them? At the sametime my body is or has built up tolerance to the pain meds because i have used them everyday for a long time. The pain doc doubled the injection amount to 80mgs because again my body is use to the steriods also. I can see more progress in my hands, my knunkles are getting much larger and toes arent straight anymore. The hands are begining to swan noticeable. Joint pain in hips and knees is worsening. My next infusion of Rituxan is in 9 days. otherwise I am in good shape.... ha ! ha! just kidding. Trying to hold of on the joint replacements as long as possible. But have a strong feeling I may have no choice soon. Once the pains dont work anymore i will be forced into that corner. ugh.

[elephant]

On a tree top sounds like you are going through a rough patch, I admire you strength. Thinking of you.

[Sangye]

Ditto. Hang in there, Tree!

[onatreetop]

Its been a little rough. Have had bad chest pain which led to a stress test which led to a heart cath. stress test said heart wasnt squeezing as much as it should. Cath showed everything as ok. or at least thats what I remember from the doc after the cath. So I have some big nasty bruises on the right side of my groin area with a disolving plug (90 days). otherwise I have beem taking all allergy produces that I can. pollen here is blowing around in clouds.

Recovered from 2nd infusion better than the 1st. Felt a lot better than 2 weeks prior. Went 2 work and everything. Rituxan 1000mgs each infusion. Still stuck at 16mgs of medrol with valium and pain meds.

Did have a weriod reaction last afternoon. took a nap and woke with very itchy feet which turned red and then other scares. Took benadryl and away it went after 45minutes. I keep having simular reactions but not sure why? docs are baffeled also. So... benadryl on board with the other twenty something. Dont count anymore. Hope all is well with you?

[pberggren1]

I'm so sorry to hear about all this Tree.

Are you still having chest pains?

The pollen this time of year can be deadly.

The itchy red feet sure sounds weird.

[Sangye]

Tree, are those allergic reactions soon after your rtx infusions? If not, you need to search for something in your environment that's causing it. Laundry detergent, fabric softener, air fresheners-- all are very common causes.

It might be something that "should" be okay. I've developed an allergy to aloe vera, of all things. Actually it's not overly surprising, since aloe's in the same family as onions-- a lifelong sensitivity. But it does make it complicated to buy simple products.

[elephant]

Onatreetop, get better soon. With all the medications your taking, it could be a drug reaction. Hope you find out answers soon. Lets know how your next treatment goes.

[onatreetop]

Hey. Still kicking! Have had another eventful month or two. Ended up doing a heart cath. came back good. they said wait a week or so and no should be back. well about 4 days after i was at my plato it seemed. My head was cloudy and I seemed to have more and more senior moments. back to back. I was doing things twice and falling asleep while driving or sitting for any length of time. so I called the cardio doc and they said wait a few more days so i did. then i called again and told them this isnt right i cant seem to do anything right and still having trouble with sentences etc. Finally the 3rd call did it. I went to the er and my pulse ox was allover the place my pressure which is ok was low, So I checked in to be monitored and tested for tia. 2 nights and 3 days stay. they had me on O2 the whole time but wouldnt send me home with any. Got home and all i wanted to do is sleep. still needed the O2. tried the gp and got a no. tried over the phone with the ra they said call the pulm doc. so i went back to the pulm doc and i did the 6min walk and failed. the equipment people came that night with 2 ox mach, 1 for upstairs and 1 for down. also the portable tanks. yippy! also failed the stress test at the cardio docs before the cath was done. thought maybe the tia happened during the cath. not unheard of. my mother warned me and didnt want me to do it. it got to the point while i was driving that i would pullover and take a nap. thats pretty bad. anyway getting use 2 my new leash. hope all is well with all of you.

[mishb]

Wow and wow.
I'm glad you are "still kicking" but goodness what a time you have had.

Is this all part of some weird WG symptoms or is your heart still not pumping enough? It doesn't sound like any of you doctors are too worried.

I'm glad that you eventually got the oxygen to help and I hope it does, and that you start to come good soon.

Take care

[onatreetop]

I am feeling clearer. Managed to do 2 things of 6 I set out to do today. Got a call from the school nurse.My 15 yr old daughter had a red rash around her thumb which was swollen and painful. Tried the gp office, nothing til thurs. tried the infect. dies.doc office nothing til thurs. so of to the ER we went. as we waited I watched the rest of her hand start swelling and red patches on her arms. I thought to myself oh god not this again.......she had shingles last month. It took 2 and 1/2 weeks to get through it. So...........I have been playing with the idea of bringing her into my Ra doc because her emmunesystem isnt working. Got her an appt for joint pain and swelling also to rule out WG. It was found in my hands first.So I hope and pray he can come up for a reason or idea at least. no one else seems to do any other testing or anything. she has missed to much school because of all this also. Time to get to the bottem of things.

[Dryhill]

I hope they soon find out what is wrong withn your daughter and also pray that is not our beloved WG.

Jim

[Al]

Yow! On top of your own completely yucky issues you have this to deal with too. Not good! Shingles at age 15? I would say that having her immune system messed up is an understatement. Has your daughter been taking immunosuppressive drugs for the joint issues? If so, that is likely the reason for the shingles virus coming out to play. (And a reason to temporarily get off the drugs that whack the immune system.) Yes, do get to the bottom of things (I'm thinking that the rheumy is just the right doc for this), and let us know what you find out.

Al

[onatreetop]

We went today to Dr.Soloway. Waited the normal 4 hours for the first visit. He was very kind and overfloowing with info. for her. He agreed that shingles twice wasnt right and proceeded with his evail. May daughter is double jointed so to speak. He explained to her and i that it doesnt mean you really have 2 joints just that you are able to hyperextend all joints beyond normal and thats why they hurt after use some times. Most of her swelling was gone by today because we caught the flare early. He then went on and said given my rare health issues and my mothers he was going to treat her like any person that first comes in and ordered a ton of lab work and xrays of her knees and hands to check for cysts also. We should have results in 10 days. We were there a total of 6 hours. But well worth it.

As a bonus I ran into Helen the 1 other weggie he is treating right now. She seemed so much better than when I first met her in infusion. Came to findout she had been in the hospital as well as I. we had both said we had been wondering how each other had Been since we had seen eachother last. So I gave them my address and phone number. also got theres this time also. They are now 80. A big age difference but still so much in common. So hopefully we can catchup soon. Dr. Soloway is sending her to the same cardio and pulm docs I use and told her they very good and nice to deal with. Relieving to her and her husband.


It was a long day but everything is in the works and we should have an answer sooner then later.

[Al]

Great post, Tree, and a mostly positive report! Let us know when you have your answers!

Al

[onatreetop]

I will. And thanks! Cant wait to findout either. Another day another chance to do whatever is possble.

[Sangye]

Tree, two things come to mind with your daughter's overly flexible joints. 1) Connective Tissue disorder and 2) Adrenal fatigue.

Adrenal fatigue is not gonna be dx'ed by a medical doctor. That's a holistic doc's arena. When the adrenals are unhappy all the ligaments and tendons in the body become too stretchy. One sign of adrenal fatigue is joints that make a lot of noise. You can't sneak up on anyone with popping joints in your feet. If adrenal fatigue continues, it can easily turn into/ trigger AI disease.

[annekat]

Tree, two things come to mind with your daughter's overly flexible joints. 1) Connective Tissue disorder and 2) Adrenal fatigue.

Adrenal fatigue is not gonna be dx'ed by a medical doctor. That's a holistic doc's arena. When the adrenals are unhappy all the ligaments and tendons in the body become too stretchy. One sign of adrenal fatigue is joints that make a lot of noise. You can't sneak up on anyone with popping joints in your feet. If adrenal fatigue continues, it can easily turn into/ trigger AI disease. Hmm, that's interesting, as I've always been somewhat double jointed, though it hasn't caused any significant problems that I know of. I have "potter's thumb", which helps me in my line of work, making pots. During treatment with CTX and high dose pred for Wegs, I noticed my knees popping more often than usual and don't know what that meant... I think it happened early on before the adrenals would have been shut down by the pred, so...? I suppose I could have had adrenal fatigue pre-wegs and not known it. Better look up connective tissue disorder, too. Geez, there are so many angles to all of this.

[Sangye]

Pretty much everyone has adrenal fatigue to some degree, unless they're addressing it specifically with lifestyle changes, diet and nutritional supplements.

Ctx alone will weaken the adrenals, even though there is not a direct effect on the adrenals from a pharmaceutical point of view. Most drugs will. Drugs are foreign to the body and are therefore a stressor to it. Ctx is really hard on the body. High dose pred--even one dose-- gives the adrenals a beating. Those one-week treatment packs do, too. Don't expect an MD to get that-- they're looking at gross adrenal function, not the million degrees of function below that.

[Al]

Pretty much everyone has adrenal fatigue to some degree, unless they're addressing it specifically with lifestyle changes, diet and nutritional supplements.

Ctx alone will weaken the adrenals, even though there is not a direct effect on the adrenals from a pharmaceutical point of view. Most drugs will. Drugs are foreign to the body and are therefore a stressor to it. Ctx is really hard on the body. High dose pred--even one dose-- gives the adrenals a beating. Those one-week treatment packs do, too. Don't expect an MD to get that-- they're looking at gross adrenal function, not the million degrees of function below that.They call CTX and the like "chemotherapy". This is a euphamism. The more accurate term is "Toxin therapy". But I suppose it doesn't have the same ring....

Al

[Sangye]

We holistic docs call chemo all sorts of other names. LOL

[pberggren1]

I think when I get down to 10 to 5 mg of pred I'm going to go see my naturopath to see if she can help with the tapering process and adrenal function.

[drz]

They call CTX and the like "chemotherapy". This is a euphamism. The more accurate term is "Toxin therapy". But I suppose it doesn't have the same ring....

Al

But that is the whole point, isn't it, to almost kill everything including the host to get rid of one or two specific undesirable items, like the cancer cells or whatever is the diagnosed problem. All meds have side effects said my doctor, that is why we use them. Some effects we want and they are called successful treatment and some effects we don't want so they are called undesired side effects. Good thing they are able to develop drugs a little more specific and promise of more such drugs in the future.

[onatreetop]

Hello All! Been a busy summer. With all of the kids and still trying to work, who can forget all the doc appts and testing. Had to have an earlier in fusion which seemed to help but just got labs back and the pr3 is 6.1 no where near the 1.0. So I am a little upset until I can not get through to a doc in the am. Any advice? I am freaking myself out pretty badly. Finally meet a very nice lady at my RA Doc's office face to face. We live about an hour or so apart. she is doing better than she was 4months ago. So many issues.

[onatreetop]

I know I should be use to all of this but..........do we really get use to it? Always thinking this is the end when things feel better. Than to get the labs back to find that you arent feeling quite right because the monster is back? i turn 45 this year and being stuck in this 90 year old body isnt working out well for me or my family. Yes everyday is different I know that every well. I am awaiting the docs return phone call.........the longest part the waiting. So ..... do I pack for the hospital and carry on with the day? As if nothing is happening with the mini 5 minute brake down of tears until they call? Usaully this doesnt freak me out but for some reason I am really scared this time. Is the pr3 enough to go by?

[Lightwarrior]

I know I should be use to all of this but..........do we really get use to it? Always thinking this is the end when things feel better. Than to get the labs back to find that you arent feeling quite right because the monster is back? i turn 45 this year and being stuck in this 90 year old body isnt working out well for me or my family. Yes everyday is different I know that every well. I am awaiting the docs return phone call.........the longest part the waiting. So ..... do I pack for the hospital and carry on with the day? As if nothing is happening with the mini 5 minute brake down of tears until they call? Usaully this doesnt freak me out but for some reason I am really scared this time. Is the pr3 enough to go by?

Whoaa, hold on my friend. Remember that our C-ANCA which is the prb3 is not a valid way to monitor disease activity. I know you are afraid that because of your labs that your great summer will be only a memory. More reliable indicators are the non cardiac crp and an esrd. But the most reliable is how do you feel? I forget if your damage was lungs or kidneys?

Do you pack for the hospital or carry on with your day?? I vote for carry on with your day. NO the pr3 is not enough to go by.

I'm more concerned about why you are really scared this time? Remember your avatar, and your quote "see from another view...on a tree top" I'm sending you light and energy to your tree top.
:hug3::hug1::hug3::hug2:

[drz]

Unless you have symptoms or other reasons to be so fearful the above advice seems solid to me.Some times they change the readings of labs or use different measures so you can't really compare one to another. I have had this happen a couple times where I thought I had a really big negative increase but it was just a different way of reporting the results. Another time doctor gave me another explanation of why I might have had a increase in a reading that I thought was a bad sign and he was probably right since nothing really bad happened and my lab results got better in a few weeks.

You right it is stressful to have bodies that function worse than many people much older but try to be glad that it is still functioning. Hope you get some reassurance soon.

[Sangye]

Like Lightwarrior said, you cannot put all your stock into the pr3. How do you feel? Didn't you just get an infusion? What's your treatment right now?

[onatreetop]

Infusion was 6weeks ago. Feel like poop for to many different reasons, Rib and back pain not enough rest. this blasting humidity. Ended up in the er 2 more times. keep losing the felling in left leg and foot. I
know I have back problems but the last visit an xray not the mri or catscan told them I have a compressure fracture at T10. lol.......really? I have slightly buldging disk everywhere else but T 10? Now we are working on the cement surg. They want it done asap. I believe I did it weeks ago when I was in a lot more pain but the other testing didnt pick it up.Have my upper Gi scheduled for this week as well as another eco. New cardio doc believes I have had a heartache from the ekg he did. I am falling apart and melting down with it

[onatreetop]

Also some good news the o2 is helping my gas exchange rate. I was at 51 now at 71. almost there. found out that because of where I live the highest is 80 here. over populated and sarrounded by 3 big cities. But the o2 is healing.

[onatreetop]

OMG......I almost forgot.........I finally after 3 long years befriended another weggie! face to face. met at the infusion room 2 monthes ago. There is a forty year difference but we still talk to each other at least once a week. turns out there are 5 at my RA. Still waiting to run into them too. We keep eachother informed and try to comfort each other as much as possible. she is much worse off than I but we see a lot of the same docs now and compare notes.

[pberggren1]

I am glad to hear the O2 is working for you. It is always nice to meet a fellow Weggie and compare notes and visit. How old is this other Weggie?

[onatreetop]

Helen is 75 years old. originally from here met her husband from germany then moved there and raised the family. now the kids are grown and decided it was time to come back. she is a sweatheart. Her husband is sweet also. The first time I met her she sent her husband home to get us soup to have while we sat in infusion for 6 plus hours.She was dx,d in 2005 and hospitalized 3 monthes. had kidney problems mostly. The O2 is healing hope with the changing weather I can let up on it.

[KathyB]

On a tree top --- do you think she would be interested in telling us her story? She sounds like someone we would enjoy knowing! Glad you are "connected" to someone nearby!

KB

[drz]

Infusion was 6weeks ago. Feel like poop for to many different reasons, Rib and back pain not enough rest. this blasting humidity. Ended up in the er 2 more times. keep losing the felling in left leg and foot. I
know I have back problems but the last visit an xray not the mri or catscan told them I have a compressure fracture at T10. lol.......really? I have slightly buldging disk everywhere else but T 10? Now we are working on the cement surg. They want it done asap. I believe I did it weeks ago when I was in a lot more pain but the other testing didnt pick it up.Have my upper Gi scheduled for this week as well as another eco. New cardio doc believes I have had a heartache from the ekg he did. I am falling apart and melting down with it

Will fixing fracture also restore feeling in left leg and foot?

[onatreetop]

Thats the plan. They will do one of two things..............make the canal space larger with the ballon so nerves have more space and fill in around it or hopefully just fill in the spaces in the fracture. Findout more after another mri.

I have told Helen all about this sight but being older and not into computers she really has no communication other than the phone. I am hoping that we might get to visit outside the docs office someday soon. maybe I can bring the computer with me and hope for some wifi? I know she has said she feels kind of cut off from the world because of it. I will definatly try. I am still trying to findout who the other 3 people are. hipa and all that. The only thing said to me is one is very young, teenager. Hope to findout without pasting my phone number all over the office.

[onatreetop]

okay let me see if I can get all this in the right order......I crushed t12 vert. was scheduled for the cement injection then had another mri and canceled the surgery. Had injections instead 6 of them 3 discs. Leg still numb hip still numb and burns sometimes. ecocardiogram waiting for results. upper GI 3rd time dialated again. Seems to last about monthes. mri of hip on monday the talk is new hip have to wait and see. wacked my elbow hard need xray hurts like heck. can move it some but apply pressure or push and cant use it. cant find a comfortable position at all. Labs came back scary. neutrophils over 10000. Thats not good in any way shape or form. So now I get to figure out if there is an infection or what? It was a busy week. pain is bad. Sleep is less. I am a mess and falling apart. got to start using forteo for bone growth hopefully. Went to the pharm. to pick up a 30 day supply and didnt get it. It was 1800.00. So I called the company to get it from them for free. Well saw the endo doc and guess what they had samples for freeeeeeeeeeeeeeee!!!!! three monthes worth and a bunch of the other meds on my list also ! Happy Birthday and merry christmas early thank goodness. The rate I am braking I didnt have much time to wait. This week should be less eventful I hope.

[annekat]

On a tree top --- do you think she would be interested in telling us her story? She sounds like someone we would enjoy knowing! Glad you are "connected" to someone nearby!

KB I am interested in anyone of that age who has Wegs. I myself plan on at least another 20 years, which would make me 80. I've been wondering just lately how many really elderly people there are with Wegs and how many are doing well or in remission. I hope I'm not being too optimistic. I hope Helen and you both will show some improvement soon, tree! And I'm glad you met each other.

[onatreetop]

Thanks and nice to met you also. Me at 44 with three teenagers and a nine year old things get a bit crazy. I am hoping to make it to see my grandchildren thats my hope. Not that I want anytime soon either. Maybe 10or 15 years and hope to see them grow. Cant wait to see my kids as parents. I need to call Helen and see how she is. She asks and talks about me at the docs office and enjoys that she can talk to me about what is bothering her and answer questions about our docs also.

[drz]

okay let me see if I can get all this in the right order......I crushed t12 vert. was scheduled for the cement injection then had another mri and canceled the surgery. Had injections instead 6 of them 3 discs. Leg still numb hip still numb and burns sometimes. ecocardiogram waiting for results. upper GI 3rd time dialated again. Seems to last about monthes. mri of hip on monday the talk is new hip have to wait and see. wacked my elbow hard need xray hurts like heck. can move it some but apply pressure or push and cant use it. cant find a comfortable position at all. Labs came back scary. neutrophils over 10000. Thats not good in any way shape or form. So now I get to figure out if there is an infection or what? It was a busy week. pain is bad. Sleep is less. I am a mess and falling apart. got to start using forteo for bone growth hopefully. Went to the pharm. to pick up a 30 day supply and didnt get it. It was 1800.00. So I called the company to get it from them for free. Well saw the endo doc and guess what they had samples for freeeeeeeeeeeeeeee!!!!! three monthes worth and a bunch of the other meds on my list also ! Happy Birthday and merry christmas early thank goodness. The rate I am braking I didnt have much time to wait. This week should be less eventful I hope.

Sorry to hear about stress and troubles but it seems most likely things will get better for you soon. Hope the new meds do what they hope for you. Best wishes for better health and less stress in your life.

[drz]

I am interested in anyone of that age who has Wegs. I myself plan on at least another 20 years, which would make me 80. I've been wondering just lately how many really elderly people there are with Wegs and how many are doing well or in remission. I hope I'm not being too optimistic. I hope Helen and you both will show some improvement soon, tree! And I'm glad you met each other.

I wonder about this too. I feel all my time left is a bonus with no idea of how long the bonus will last. Things like Al's sudden departure remind us how transient and uncertain life can be. If we make it to 80, what will life be like. In my fantasies, they will have a cure for GPA by then so we won't have all these medical crises to deal with on an ongoing basis. But how many today are trying to manage Wegs in their 80's and how is is going for them? Good question? Like many retired people I have the fear of running out of money before I run out of time although my history of GPA and damage caused by it and diabetes greatly reduce the odds of this happening. I now function about the same as my fellow residents in our assisted living complex even though most are much older than I. I just have more medical appointments and issues than most of the others.

[annekat]

Thanks and nice to met you also. Me at 44 with three teenagers and a nine year old things get a bit crazy. I am hoping to make it to see my grandchildren thats my hope. Not that I want anytime soon either. Maybe 10or 15 years and hope to see them grow. Cant wait to see my kids as parents. I need to call Helen and see how she is. She asks and talks about me at the docs office and enjoys that she can talk to me about what is bothering her and answer questions about our docs also. I'm 60 with no kids or grandkids, just a couple of cats. So I have it easy in that respect.... coming from a big family I can imagine all the commotion going on while you are going thru your health problems. If you meet Helen outside the Drs. office, you should probably go to HER house!

[annekat]

I wonder about this too. I feel all my time left is a bonus with no idea of how long the bonus will last. Things like Al's sudden departure remind us how transient and uncertain life can be. If we make it to 80, what will life be like. In my fantasies, they will have a cure for GPA by then so we won't have all these medical crises to deal with on an ongoing basis. But how many today are trying to manage Wegs in their 80's and how is is going for them? Good question? Like many retired people I have the fear of running out of money before I run out of time although my history of GPA and damage caused by it and diabetes greatly reduce the odds of this happening. I now function about the same as my fellow residents in our assisted living complex even though most are much older than I. I just have more medical appointments and issues than most of the others. I'm sorry you are in worse shape than I at this point, drz, but your good attitude will do a lot for you. I have the same fantasies as you do, that either there will be a cure or they will find better ways to treat GPA and other AI diseases, and cancer, too, for that matter!

[Sangye]

I'm so sad to hear about all you're going through, onatreetop! Did your docs explain why the spine surgery was canceled? Meanwhile, I'd get at least one more opinion on it from a different clinic.

[elephant]

Treetop so sorry for all the pain and suffering you are going through. Glad you let us know what is going on. Thinking about you.

[drz]

Treetop so sorry for all the pain and suffering you are going through. Glad you let us know what is going on. Thinking about you.

What is the latest for you? Any promising news yet? Hope some relief is coming for you.

[onatreetop]

Hi everyone! I am not doing as well as act too. the monster is back and decided to come back in a different place, It has always been my hands and mildly all joints with pulm function decline. This time it has surprised me in my right foot. I dont remember bracking any toes but it started with one swollen toe than the ball of my foot now the whole foot. Got it to dr. Soloway first thing monday. suffered through the weekend. also know if it were just broken the er would just wrap it to the toes next to them. so i tried that and it was no help. started feeling that lovely flu like aching as the foot got worse. it has been 11 weeks since my rituxan infusion and it isnt lasting the 4 months it is meant too . Doc wants to do 4 infusions a week apart. rx company is good to go . the insurance company is what we are waiting for. We where all hoping to start this week because of the conituing wg. He upped the medrol to 36mgs til next week.

he explained that if I were to go back on cytoxin I would have to wait 6 months til the rituxin is out of my system. he said if he did put me on it now it would kill me. Calcium levels in blood are high as well as the other report. Get two new docs to check thyriod and blood disese docs next tuesday.

The pain clinic is really getting me mad. I have been calling everyday for a week to get in to up the pain meds with the increase in pain but no response. soloway said he will back me up so they will. have to get them first.

I have also decided to apply for every assistance i can get for the government. i am not able to work as much as i need too.
going for second round of back injection tonight. He told me he would give me hip injection at the sametime. yeah!!!!!!hope it works for the pain in the dead bone femur area and bring back the feeling in the leg and foot leftside.

Talked with Helen last night. she has had a bed couple of weeks. She went in for the lower Gi and had palups removed. Then after surgery went home and started hemrging baddly. back to the hospital and 6 blood transfusions and 2 surgerys she is home but still getting out of the hospial lag. The weakness etc. Asked her if she would like to go to lunch when she is up to it. we were on the phone for an hour and a half. She thanked me repeatedly and i her.

Also found out about a newbie in soloways care. The infusion manager gave her my number like i asked her too but no call yet. she seems to be having bad headaches after infusion. so i asked the manager is she drinking enough water while infusion is being done. she hasnt. so the manager said she will delute the rituxin with more saline next visit.

cant believe the docs and nurses are asking me for advise??? I often am asked if i am a nurse but have no college ed. just real life experience for about 15 years with my mom and now myself.

Helen said to thank all of you whom i refer too a lot. she wishes she could do this but they dont have a computer or any idea how to use one.

the new weggie is young but dont know how young.

[drz]

Sorry things are so rough now for you. Hope they get better soon. Thanks for update. it is good you have some people to think about and try distract you a little from your own difficulties. Best wishes for smoother water soon.

[mishb]

Tree, you have had a very bad ride lately.........I second what drz said and also hope you get better soon.
Surely things have to start looking up for you.

Take it easy and take care

[KathyB]

Here's another of us thinking about you and hoping for the best! How flattering to have the staff asking YOU about treatments! And a bit scary, too, since they should be the trained experts! Keep on teachin'...

KB

[annekat]

Here's another of us thinking about you and hoping for the best! How flattering to have the staff asking YOU about treatments! And a bit scary, too, since they should be the trained experts! Keep on teachin'...

KB All good wishes from me, too, and I hope things get resolved and level out for both you and Helen. Sounds like you have both been through more than your share.

[Sangye]

Hang in there, Treetop!

[onatreetop]

well it looks like things sre going to get worse before better...........cant have rituxin treatment for 4 more weeks at the earliest. For some reason this time it isnt just hands or flu like aching. Its in my right foot now swollen wont bend ball of the foot and toes. Have been watching for color changes no blue yet white and red.
got labs in the mail. Globin ratio is 2.3 wbc 13.1 and neutr. is 12302. Everything i look up for neut. levels says cancer? Yes I am in a state of panic again. anyone have any info. about neut ?

[KathyB]

Hi Tree -- Here's what my copy/past from wiki answers site. Hope it helps -- when are you going back to the doctor/hospital?? KB
ANSWER TAKEN FROM: MedFriendly.com: Easy to Understand Medical Dictionary & Encyclopedia (http://www.medfriendly.com)
WHAT CAN CAUSE THE LEVEL OF NEUTROPHILS TO BE TOO HIGH?
There are many possible causes for an abnormally high neutrophil count. A neutrophil level that is more than 8000 is considered to be abnormally high. One basic cause of a high neutrophil count is when a high level of stress is placed on the body. The stress can due to many factors such as nervousness, exercise, or seizures (involuntary muscle movements due to overexcitement of nerve cells in the brain). Another cause is a sudden infection from bacteria. Damage or inflammation of tissues can also lead to a high neutrophil count. Examples would be burn injuries and a heart attack.
Sudden kidney failure can cause a high neutrophil count. The kidneys (http://www.wegeners-granulomatosis.com/forum/#) are two organs located on each side of the spine, behind the stomach. The kidneys filter (remove) wastes from the blood. A condition known as ketoacidosis can also cause a high neutrophil count. Ketoacidosis is a condition in which acids and poisonous chemical substances known as ketones are produced by the body. Ketones are produced when the body has a difficult time breaking down fats.
Another cause of a high neutrophil count is eclampsia. Eclampsia is a rare, but serious complication of pregnancy characterized by an attack of convulsions (abnormal, severe, involuntary muscle movements) that are not caused by other conditions of the brain, such as bleeding in the brain, in a woman with moderate or severe (but not mild) preeclampsia. Preeclampsia is a severe condition that occurs in the 2nd half of pregnancy, which is characterized by a sudden onset of high blood pressure (http://www.wegeners-granulomatosis.com/forum/#) with edema (a type of swelling), and/or abnormal amounts of protein in the urine (pee).
A high neutrophil count can be caused by cancer spreading in the body. Cancer is a group of diseases in which symptoms are due to an abnormal and excessive growth of cells in one of the body organs or tissues. A cell is the smallest, most basic unit of life, that is capable of existing by itself.
Hemolytic anemia can cause a high neutrophil count. Hemolytic anemia is a condition in which the red blood cells are destroyed earlier than they should be. Red blood cells help carry oxygen to the blood. Another cause of a high neutrophil count is polycythemia vera. Polycythemia vera is a condition of unknown cause in which there is a long-term increase in red blood cells and other types of cells. Myeloid metaplasia can cause a high neutrophil count. Myeloid metaplasia is a condition in which bone marrow (a tissue that fills the openings of bones) grows in abnormal places in the body.Certain medications can also lead to a high neutrophil count. One such medication is corticosteroids. Corticosteroids are a group of drugs that act similarly to a natural chemical in the body known as corticosteroid hormone. Corticosteroid hormones control the body's use of nutrients and the amount of water and salts in the urine (pee). Another such medication that can raise the neutrophil count is lithium carbonate. Lithium carbonate is a type of salt that is used as a drug to reduces mania (an abnormal, overly excited state).

[onatreetop]

thank tons. I see the blood doc on tuesday to check for blood cell cancers. the steriod makes sence also. the mgs have been up and down every week. going to be a long weekend. o2 is helping tried to use it less ssince the temps are better and the humity. back on. the last two months the neut. has more than doubled.

[pberggren1]

I'm so sorry Tree. I wish I could take all your pain away. I so know what you mean about the panic. I sure hope you can get the rtx sooner and it helps you 100%.

[onatreetop]

Thank you........We all just take one day at a time. With the hope the the next is equal or better.Hard to look at myself. Not just moon face anymore.....more like moon body. My neck has seemed to disappear some how. Just hoping to keep my original parts as much as possible. had back and hip injections weds. that was fun and seems to have helped relieve the back but not the hip. There seems to be a question if is part of the back problem or the actual hip joint that needs replacing. Did findout that part of the bone at the top of the femur is dead. But the docs said it shouldnt cause pain. and of course now that the back pain is better I can feel other areas more like the foot and wornout knee.
Someone once told me that your body can only register one pain at a time.......myth busted on that one. Has anyone else had problems with there teeth? I seem to be braking mine. 6 so far 2 removed and 2 to go. hoping that 2 can be filled. Thinking about taking them all at this point and going for a fresh new set.
just get tired of all the doc appts. and cost of gas. its hard to spend more than you make, I was figuring out my week and i have 5 appts for monday and tuesday alone. had 5 last week and 4 the week before.
I just want to stop and breathe. I am hoping to get out and away for the long week end but am not sure I will be strong enough to keep up with the others going. They are all awear of my condition at the sametime i dont what to be treated differently. i have this horrible feeling that this could be my last chance to go on a trip with close old friends. we havent spent time together like we use too. Or camp or anything. Plus I have to fill the car with all of the o2 equipment on top of everything else. I tried to order thirty small tanks but the company wants me rent a portable condenser at 20 a day. cant do it. i am going to go as long as none of the docs decide to keep me in the hospital or something. Time to get out of this state and or state of mind. :glare:

[onatreetop]

Thank you........We all just take one day at a time. With the hope the the next is equal or better.Hard to look at myself. Not just moon face anymore.....more like moon body. My neck has seemed to disappear some how. Just hoping to keep my original parts as much as possible. had back and hip injections weds. that was fun and seems to have helped relieve the back but not the hip. There seems to be a question if is part of the back problem or the actual hip joint that needs replacing. Did findout that part of the bone at the top of the femur is dead. But the docs said it shouldnt cause pain. and of course now that the back pain is better I can feel other areas more like the foot and wornout knee.
Someone once told me that your body can only register one pain at a time.......myth busted on that one. Has anyone else had problems with there teeth? I seem to be braking mine. 6 so far 2 removed and 2 to go. hoping that 2 can be filled. Thinking about taking them all at this point and going for a fresh new set.
just get tired of all the doc appts. and cost of gas. its hard to spend more than you make, I was figuring out my week and i have 5 appts for monday and tuesday alone. had 5 last week and 4 the week before.
I just want to stop and breathe. I am hoping to get out and away for the long week end but am not sure I will be strong enough to keep up with the others going. They are all awear of my condition at the sametime i dont what to be treated differently. i have this horrible feeling that this could be my last chance to go on a trip with close old friends. we havent spent time together like we use too. Or camp or anything. Plus I have to fill the car with all of the o2 equipment on top of everything else. I tried to order thirty small tanks but the company wants me rent a portable condenser at 20 a day. cant do it. i am going to go as long as none of the docs decide to keep me in the hospital or something. Time to get out of this state and or state of mind. :glare:

[annekat]

Treetop, I'm so sorry you are going through such a rough time, much harder than what I'm going through and probably quite a few others on here, too. Talking about getting out and camping or something with friends sounds like a positive idea, though I know it wouldn't be easy to plan. I did notice your beautiful avatar picture and wondered where that is!

I've had some teeth removed in the back of my mouth within the last year, but I don't think it was from Wegener's; I had neglected my teeth by not visiting the dentist often enough and two wisdom teeth had rotted and the rot had spread to the neighboring molars. So four were extracted, including what was left of the wisdom teeth; one was impacted and the other had grown in. Both my dentist and oral surgeon are aware of what WG is and the issues involved and neither one thought it was the cause of the problem. But I don't doubt that WG can cause tooth problems, and I remember having pain and tenderness throughout my teeth and gums earlier in my WG journey.

[onatreetop]

Lake tahoe the California side. I have admired yours also, where is it? my teeth have been a problem since they started coming in as a small child. My mother had scarlet fever when she was prego with me. Was born with abnormal teeth and a third set. Sure could have used them now. I believe the steriods have something to do with it. If they can drain density why not teeth? my bottom wisdom where impacted but the top where not. Last extraction was about nine monthes ago. molar split all the way down it had to come out. this time it is a tooth that was made mostly of filling. The dentist would put a clap around the base that was still there and build it up with enough filling to make the tooth. Have had it built you 5 times in 20 years not a bad run i guess. then 3 more with what i hope will be fillings.

I magically got the rtx earlier last time. But the doc said if we do it again to soon the b cells may not be able to handle it until they are given the recoverytime needed. also no cytoxin for 6 monthes if they want to start that again.so..............in between a rock and a hard place.

[onatreetop]

oh .......also forgot. my kids have been sick .so when they go in and get a script for antibiotics They usually automaticlygive me the same. So had the zpack and that stopped things from getting worse. now back to bactrim for 10 days.

[drz]

Sorry to hear about your health issues. I understand your panic when a new symptom appears. I have had several teeth just disintegrate while eating normal food and these have all needed to be capped. I thought it was due to my diabetes but realize the pred and other meds can also cause this problem. The osteoporosis from the preds can also contribute to this problem. I have gone through several of the panic states with new symptoms. Most recent one was blood and clots in my urine. Another one before that was developing gynecomastia and thinking I had either breast cancer or lymphoma as I was considered high risk for both because my my history of treatment for Wegs. Like Jack often said, Just because we have one problem, it doesn't mean we can't get another. Recurrent infections and fear of another or another flare are often present to it seems given our medical issues. Knowing this, and knowing our medical treatment team understand our health risks, and take these problems seriously, helps us get the necessary treatment to help us get through these problems. Hoping you get through your issues soon. Best wishes for better health and happier days.

[onatreetop]

Thank you once more it is easy to forget sometimes that wg doesnt come back the way it did before. guess 3 and a half years isnt much exprience to look back on yet either. between allergies this new sars like illness and well niles floating around i might have to live in a bubble. just kidding. I hope to get answers this week and some relief mentally.

[annekat]

Ah, yes, Lake Tahoe... I've been there many times. The water looks so inviting to jump into, but usually quite cold! I've swam in smaller mountain lakes in the High Sierra, too.... very wonderful experience that will probably not happen again. My avatar is one of the southernmost inlets of Puget Sound in Washington State. In fact, it is across the street from my house, taken from my sister's deck. We can swim there, too, and the water is warmer than Lake Tahoe, in the summer, anyway! But I don't, for various reasons, including the stinging jellyfish, the rough and mucky beach, and the salt water. Not that I wouldn't if I felt like it, but I don't.

I was very surprised when one of my molars just broke off one day, when I had no idea there was nothing wrong with it. It didn't even hurt, and the dentists and staff were amazed at my high threshold for pain. I still think it was rot from neglect of teeth, but do believe that steroids, etc. can cause problems, and I take Fosamax, which also carries some risks of jaw necrosis. My dentists know all about that. So if I keep getting xrays and checkups anything like that should be caught in progress.

I hope your mental and emotional state improves soon, Treetop, as well as your physical one!:hug2:

[drz]

Ah, yes, Lake Tahoe... I've been there many times. The water looks so inviting to jump into, but usually quite cold! I've swam in smaller mountain lakes in the High Sierra, too.... very wonderful experience that will probably not happen again. My avatar is one of the southernmost inlets of Puget Sound in Washington State. In fact, it is across the street from my house, taken from my sister's deck. We can swim there, too, and the water is warmer than Lake Tahoe, in the summer, anyway! But I don't, for various reasons, including the stinging jellyfish, the rough and mucky beach, and the salt water. Not that I wouldn't if I felt like it, but I don't.

I was very surprised when one of my molars just broke off one day, when I had no idea there was nothing wrong with it. It didn't even hurt, and the dentists and staff were amazed at my high threshold for pain. I still think it was rot from neglect of teeth, but do believe that steroids, etc. can cause problems, and I take Fosamax, which also carries some risks of jaw necrosis. My dentists know all about that. So if I keep getting xrays and checkups anything like that should be caught in progress.

I hope your mental and emotional state improves soon, Treetop, as well as your physical one!:hug2:

I see the dentist every three months as recommended for diabetes and now GPA. I have had x-rays and got clean bill of dental health only to be back in a few days later with a shattered tooth. Dentists can't detect those problems till they happen. The dentist tells me the risk from Fosomax taken orally on a weekly basis is real low so I keep taking it and wonder if it is doing any good. Will get another bone density test next year.

[gwenllian111]

You're VERY strong.

Wishing you well X

[onatreetop]

I am or try to be as strong as i can for my children. They dont see me feeling sick often and if they do it seems the world falls apart. No support from spouse he is just another kid but with a job.

Lake Tahoe has very cold water. It is all snow melt water. as a kid i remember not being able to go in passed my knees. I could risk to say there is no other place quite like it. amazingly breath taking.

got word from RA to cut steriods dose and see if the swellling goes down. if not he said double it. I go in again monday. The labs are still on my mind.

my mother is moving to Washington this next month. near billingham i think. I dont know how she is going to make it through the winter with all of her medical issues. The pain at low temps ouch. I dont like being a weather forecaster either.
I need rest and some help. Going to see what kind of help i can get from the state. Cant work as much as I need to and keep what we have. frustrating more than anything really. again .......one day at a time. Thats it. hoping for more comfort and understanding after the first doc appt.

[KathyB]

LOL to the dental issues! I've spent a FORTUNE at the dentist since dx! I've lost count on the number of crowns and cavities! Two extractions, too. It's hard to believe all of this happened in just a year, but I've been told prednisone is crazy on the teeth, too!

KB

[annekat]

I know I need to go to the dentist more often now that I have WG but I can't afford it right now! So will have to wait a couple months when I know there is some extra money coming in. I know my teeth that were extracted were rotten inside, they didn't just shatter. But these stories from you all do make me wary. One of the extractions was a molar with a gold crown, so maybe I can make some money off that! But it won't be anywhere near the cost of the original crown.... that was in 2005, and I was told I should have that rotting wisdom tooth next to the gold crown tooth taken out, and like a dummy, I didn't do it when I had the money for it. That would probably have saved the gold crown tooth. As far as Wegs goes, I think it may have exacerbated the receding of my gums, as I noticed it had gotten more extreme around the time of dx.

[onatreetop]

i have another doc appt with ra today. that makes 7 visits in three weeks? they see me and then setup another fallow up. The doctor is going to think i am a stocker or something.
I figure with all the insurance has paid and my self that all my doctors and there great great grandchildren are set for life plus some.
I am going to try and findout about a dental school to do the work if i can find one that isnt hours away. i know some parents that had there kids braces done that way and saved over 3000. definatly worth looking into. Otherwise the teeth are going to get worse instead of better.

[annekat]

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]

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]

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]

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]

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]

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]

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]

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.

[Sangye]

I hope your surgery goes well, Tree. You might take longer to heal so don't get impatient if that happens. Take good care. :smile1:

[JeanMarie]

Hope everything goes well & you have an easy, quick recovery!!!!

[Debbie C]

Good luck on your surgery and hope both of you can lower the ctx regiment soon.

[jola57]

Hope your surgery went well, let us know when you can. Sending lots of easy hugs

[onatreetop]

well its done. got my new hip monday and at rehab now. going home in xmas eve they are saying. all well and they ended up replacing 1/3 of the bone. They went with porcelin. And said it last longer. Mobility is good gettiing out of rehab early. walking with walker and a bit sore of coarse. ice it alot and staying medicated seem to be the key. taking it one day at a time.

i am glad its done. It took awhile to get all the clearence letters and all the doc visits in but managed. I am amazed that the RA signed off okay even during the current flare but he did and I convincent him I could handle it. The surgen was the only one consered about the cytoxin. He said usually they take people off for 6 to 8 weeks but since the RA was okay with it they went a head. The recovery can take longer but we knew that. So far so good.......incision looks good the bruising is still there but fading. Pulm fuction is good. the heart rate is up but not preasure. so......valium is regularly on board. Cant wait to sleep in my bed at home. was taught how to go up and down the stairs get in and out of the car etc. I have learned a lot here. I have to say when it is knee time this is deffinatly where I am going to go for rehab.. otherwise feel okay. tired sometimes but able to rest for a change. Thinking about a catnap now.

Happy holidays!!! Hoping you are all well and or comfortable at least. wishing everyone a healthy New Year!!!!!

[pberggren1]

This all sounds good there Tree. I hope you have a good recovery and some new found mobility in the new year.

[drz]

Glad to hear your good report. Nice Christmas present to be done with it and able to go home again.

[Jaha]

Very happy to here your doing well and home. Have a wonderful Holiday season

[Sangye]

I'm glad it went well, Tree! Happy recovery. :smile1:

[onatreetop]

hello out there! i have been on a whirlwind of doc appts. hospital stay for a couple days for iv antibiotics and high doses of predisone. back on cytoxin since december? november? cant remember. feeling the winter for the first time in my bones. I hate it hot but the cold hurts now. Been more tired and weaker. Feeling the weggie. RA and OA is bad hands and feet are contorting. she a neoroligist next week for neropithy in feet etc.
Hips is good stiff once in awhile but better. got the flu that was fun.kids too. getting dental work cought up for all of us and eye doc appts new glasses. just keeping up with kids appts and mine is a fulltime job.
our health insurance changed as of the first. no more hmo and also got a secondary throught the state to help for the copays and meds.

Diabetic now. type 2 of course. Taking a new med called bydereon once a week and it isnt so bad.

still working on disabilty........going to take forever. Just keep swimming and greatful for everyday i can do at least half of what i plan. hope all is well with all of you. Helen is doing much better also.

[annekat]

Thanks for the update, treetop. I'm glad both you and Helen are in at least better shape than earlier on this thread. I know it must still be a huge struggle day-to-day, dealing with all the issues and keeping 4 kids going as well. I'm sure your husband is a big help. I am alone and deal with everything myself, but have MUCH less severe problems than you do, for which I am grateful, and I admire you greatly for how well you keep a positive attitude and manage to keep doing at least half the things you want to. I don't know why getting disability would be a problem for you, and I hope that comes through soon.

[Jaha]

Onatreetop,

Hope you are feeling better. On your disability issue, do you have a contact person at the SS dept? In Nov 2012, SS announced that they are going to simplify the process for certain dx's and approve them more quickly. Weg's is one of the dx's on the list. I applied in Nov 2012, quit working in Aug 2012 and was approved within 10 days of my contact getting the app. It was a long app to fill out and I was astonished when I got my letter of approval. I won't get my first janitors (as my father called his retirement check) check until April, but it really took the stress off. Good luck to you!
Jana

[mishb]

Wow Tree, you certainly sound a bit better but goodness you have been through the wringer :sad:

I think Jana's 10 days may be some kind of record but if you went to your appointment, you should get approved there and then.

Good luck for the disability issue and take care of yourself, otherwise I will need to send some bubblewrap over to you.......for your own protection

[onatreetop]

I am also hoping the disab. happens soon. Everyone I have spoke with says they were denied first. A woman I met today while waiting in a doc office that has loupis on top of a whole bunch of other stuff wrong started her claim 3 years ago. was denied twice so far.

Went to new neorlogist today. got to love those emg's. Nothing like a good jolt now and then. I have to go back again for the upper body. insurance wont let them do upper and lower on the same day.......pisha ! I am no wimp but time is limited. found another 3 to 4 hour doctor' just my luck. He is known as one of the better in his field so I should be greatful .

Anyway things are moving along and I just try to keep up. Just keep moving or the stiffness will get me. still hanging at 100mgs of cytoxin yippy ! Handling it well. Doesnt seem to bother me much really. Will try to get back sooner next time. thank you all so much for the support. it helps so much. I try to stay possitive and laugh as much as possible. bets the heck out of crying!!!! So what if everyone thinks I am crazy. It's a fact by now!

[Sangye]

Wow Jana, that's a huge improvement for SS Disability approval. Awesome that Wegs is on the fast-track list. It's. About. Time.

Hang in there, Tree! I'm glad you can swim.

[onatreetop]

Got the first letter and was denied. appeal is next. feeling so so. taking one day at a time like everyone else. Weather is a big factor this year. feeling it.

[onatreetop]

Hello fellow weggies!!! I had dropped of into the land of cytoxin again for about 4 monthes or more. Dont remember really sad. Anyway decided to stop it and did. Doc put me on methotrexate until rituxan infusions start again next week.

I was a bad girl but my body said stop it and I listened. He wasnt shocked or upset really. Not much panic in his voice but he clearly acted quickly. Hard to tell these days between the RA or the OA or the Wegs. Everything is screaming out at the moment.

Hip is good since last dislocation. Have been very careful. Have noticed more severe swelling everywhere. raised the lasiks and it helped. The only time it is bad now is when I am on my feet to long. Then I still swell everywhere.

So here we go again.............around and around we go! Where or when it stops nobody knows? Good luck all!!!!