onatreetop5 update

[onatreetop]

:biggrin1:Hi all! Been awhile I know. Life is so time consuming with the kids and docs and work. I have had surgery on my right hand finally. In philadelphia I had a large tumor and 3 smaller removed 6 weeks ago now. I am at PT 3 days a week trying to get my hand back to somewhere near what it was before. The good news is no cancer. It is believed that after the biopsy results that it is RA. They say rare white blood cell mass was removed from bone and tendons. They are not saying wegeners. Meanwhile Soloway has increased the methotrexate to 25mgs and 32mgs of moderl. He is also trying to get the insurance to ok remacaid? iv trans that I know helped my mother alot. I havea few older wonderful people that I work for who have RA and take the same meds I have been on for sometime. It has helped them but I keep progressing, The left hand isnt far behind the right. It feels like about 2 monthes behind the right. Hope I dont have to do it again but if it gets large like the right I will have to or I wont be able to use it and be in to much pain again. Lots of snap crackle and pop coming from all the joints latlely.
Found out ffrom the prim doc I was taking to much of the water pill and had very low blood preasure from it. The urol doc put me on the max of 50mgs to help washout the kidney stones but almost killed me in the process. Went to the prim doc after bad head rushes and coming very close to passing out and he caught it thank goodness. It was the headrush that lasted almost a full 60 seconds that scared me to the prim doc. Now I am back down to 10mgs and 20mgs everyother day. Thats all of the highlights I can think of at the moment.Hope everyone is well and feeling better. wish there was more time in the day so I could chat more often.I could use an extra day in the month too. Like november 31st, 32nd and 33rd.

[Sangye]

Hi Onatreetop, it's nice to hear from you. Glad your surgery is over with. Is the Wegs staying under control? Have they decided it's RA on top of Wegs, or that it's all RA? I got a bit confused.

[elephant]

Hi Onatreetop, glad you shared. Come back when you can. How are you feeling?

[onatreetop]

They told me its not the wg . All the labs are good. I am tired most days but for good reason. work ,PT and the kids. I try to sit every once in a while. And try to eat lunch now usually soup. I actually started losing weigh when I started eating more.Weekends are harder because saturday is methotrexate day. Stomach is not good for a couple days and very tired and weak also. I feel more on this than I did onthe cytx.
The last time I had my lungs checked there was 1 tiny nod. in each lung. So theres that and the cardio doc checked my colestr. and the total is good but the tri s are 360. A bit high. The othro surg said he had to remove quite a bt of bone to get it all but that the arthr. was bad in the finger too. The pain can be bad at times but i get through it somehow.

[elephant]

Onatreetop, your lung nodules shrunk? Hope those lung nodules strink! Sounds like your hanging onatreetop. Let us know how things go.

[onatreetop]

I am always on the tree top looking for answers and keeping watch. The noddles were gone actually. there were 7 in the right lung when I was dx'd in june of 2009. That and the blocked arch arts in both hands.which opened also. so the 2 come backs arent a good sign and the tumors in my hands had me scared badly. I am not convenced that it is' nt the WG. Not yet. will let you know whats up as it happens Hope everyone has a great turkey day.

[onatreetop]

me again. hanging in there. The left hand is catching up to the right. developed asma through all of this. my pulm functiion tests came back very changed and not for the better. Visit to the Er couple nights ago. swelling , very thirsty and not peeing. felt like i needed to but nothing would happen. puls ox was 95 - 84. But they cut me lose and told me to come back again if i feel like i am not breathing good. They did blood work a catscan of upper body and xray of lungs everything looked good. kidney stones still in place. so not them. Did find out I had a bladder infection which is a big joke if you ask me. Havent been playing around for a long time. The scale I had gotten on was off by twenty pounds. Scared the poop out of me. thats why I went. The last time they played with my meds and lowered the water pill I gained 12 pounds in 2days. They put me back on it and changed the other pressure meds instead. lots going on. never a dull moment. 7 appts this week not including work. I start my infusion therapy this thursday.Remicade time. We are hoping it will help with all the joint and swelling everywere. The oa is getting worse. Time to do something about it. Go for a TB test in the Am and followup from the ER. Then work. Gotten into more of a caregiving job than cleaning so much. Its been a long road but it is easier on the body at the end of the day. Hope all is well with you and yours. Think of all you weggies around the world everyday and wish you well.

[elephant]

Onatreetop thanks for sharing and letting us know how you are doing. I don't like the sound of your pulse ox 95-84 percent and the diagnosis of Asthma? I think this is WG, are you still on prednisone? The fluid flucuations concern me if you off lasix ( water pill)? DId you have a echocardiogram recently?

[onatreetop]

Me again.I am still on 32mg of modrol. 20 mgs methotrexate. 12.5 mgs waterpill hydrosomething. now the light headness is back do to low blood pressure. I am taking half of both pressure meds but still lightheaded. Remicade infusion went well. no bad side effects. I had the tropical look but besides the nice even redness nothing but tiredness. The RA and Pulm docs are hoping it will help with the swelling from the WG and RA. I was wrong about it being OA. The pulse-ox is fine when I am moving and upright. It is when I lay down that it drops. Been using the the humifier helps some. Cant seem to clear out the sinus junk long enough to use the CPAP. Got another inhaler to try. cymbcort long lasting and the ventinal for short. Visiting the pulm doc weekly now. tightness in the ribcage and out of breath after a flight ofstairs which isnt like me at all. So they say after the 3rd infusion I should no if there is relief or not. labs and so on as normal. get to do the 24 collection fun fun! otherwise I just try to keep moving. move it or lose it is so true. Lost ten pounds in 2 days after increasing the water pill again too. Finally under 200 and dropping! Thats about it.

[onatreetop]

Hey....sounds like everyone is busy with different issues. I am going through the sinus and rib pain again. kidneys under lower ribs pain. not fun and kind of scary. We have been watching the liver function closely also.Woke up this morning feeling like I had just been in a boxing match. face and both sides. breathing is short and difficult. just used inhaler to help open things up a bit. I need to go to work today but dont know if I can do it. Waiting for other meds to kick in. Went to the ER 2weeks ago with simular issues was monitored for 5 hours etc. then released. No swelling this time like last. Stiffness yes but no swelling. Labs came back not great last time. protien in pee was higher. platlet count was up there too. rdw was over 17. for me not normal. Very tired and weak. sleeeping a lot. Any ideas? except ER. I want to try and hold out til monday. was scheduled for next remicide iv on thursday. Dont know if its possible now.

[Psyborg]

Sorry to hear that you are struggling. I hope things turn around for you soon :(

[pberggren1]

What is rdw?

[elephant]

Onatreetop, sounds like your still fighting Wegeners and it is really beating you up! IS your Rheumy contacting a Wegeners specialist? You don't sound good, it is concerning.

[Psyborg]

What is rdw?

I believe this is a measurement of the red bloodcell width. Hopefully someone more knowledgable will correct me if I'm wrong :)

[coffeelover]

Onatreetop,

It sounds like you may have more than one thing going...but it definately sounds WEGS related. Please go see a specialist soon. That breathing difficulty has me a bit scared for you. I did the humidifier and the inhalers for a while thinking that could cure me and ended up breathing through a very small straw (diagnosed with stenosis). Please check it out. Yours seems to be progressing rapidly.
coffeelover

[onatreetop]

Saw the man today. After my remicade infusion. He said the labs are different numbers that are not very alarming. We will see you in three monthes . but next remicade infusion is 4weeks. he changed everything he had said to me for over a year and a half. I left really confused and upsaet. It was almost like he was giving up on me. I couldnt even try to talk to him or look him in the eye. I knew id lose it. soi took my paper and went up front to schedule next appt. and decided to write him a breif list of my adventures in the ER and lightheadedness etc . one of the girls took it back to him. he made notes next to each questions. 3 said already on meds for this the other 2 said pulm doc s area. then I walked out of the office forgetting the lab slip. went back in to get it and went to the lab to give more blood. then finally got out of there, got there at 915am left at445pm. really long day.

[Sangye]

Why are you still seeing a doctor who treats you like that?

[elephant]

Onatreetop, please see a Weg specialist and forget about him. Do you have a friend or family member that can drive to to JHU and see someone who is going to take this disease seriously!! You have been fighting this disease long enough, and this doc is not doing you any favors. I say all this because I care about you!

[onatreetop]

I appreciate all the concern and thoughtfulness.I am caught in between a rock and a hard place. No docs close for regular visits. JHU wanted me to stop taking everything and see what developes because there was no postive biopsy collected. Honestly I am scaierd to stop taking the meds for fear of massive relapse. All my docs (14) now agree it is wg but........ the biopsy is the missing puzzle piece for JHU. The arthritis is getting worse thats why I am trying the remicade. Only my 2nd dose. three monthes to findout if there is relief or not.
I am thinking about heading north instead of west this time. But from what you have said JHU is the place to be? It has been a year I think? So..............i havebeen entertaining the idea of cutting back on my own...I know.....not a good idea....but that way by the time I get the appt for JHU whatever is going to show it will be by then. I am going to try and get rid of the cymbalta slowly. I split the dose to pm and am first. Try that for a week then next drop 30mgs and stay 60mgs for a while then drop to 30mgs and see if I can get off that in a month or two.I believe it is messing me up more with the steriods and elavil and all the other meds. I am way more emotional and it is getting harder to control. stopped the percocet weeks ago and am taking the ultram now. Now I am not so stupid. Some of the sweating went away with the perc. too. I have alot to think about and do. I need a good RA that has time for me and isnt afraid of the wg the way everyone seems to be. Every specailist ends up talking to the RA everytime before making a move. I understand that they arent comfortable with my wg but good god! Just frustrated right now. There are a lot of changes in the mist right now between family and work. The medical crap is becoming overwelming on top of everything. I fininshed our taxes and kept my reciepts for most of the year. Just my copays and meds copays added up to 15000.00. And i didnt find all of them. Missed a few monthes and didnt include any of the kids doc appts or meds. just me. So...........I am working my tail off to be able to go to all these docs and pay for all the meds basically. I am greatful to have work beleive me.But poop it is a neverending circle.
The left hand is in constant pain now. Swollen and hurts to use. Ready to cut it off just like the right was. The right is better but still sore nothing like the left. So that means surgery again or there will be no relief. Goning to make that appt today in philly. Wish I could find a good RA there. The healthcare system is so industrailized now that the docs look at you like a number instead of a paitient anymore. At least thats what I have found anymore. I have a few widowed friends of docs and they agree completely. Thats why they stay with there oldtime docs as much as possible. But a lot of them are retiring also because of the way things are in the field. Anyway......going to start my day and go to work. Than try to met the therapist with the husband about our oldest who isnt going to school. Thats another long story.

[Sangye]

Okay, so about halfway through that I started to feel queasy. Please, do not mess with your drugs alone--none of them! Not only is it incredibly dangerous but it also clouds the picture.

A lot has happened since you went to JHU. I think it's worth a trip back there to see what they have to say. It may be that you are on so many drugs they can't get an accurate picture of what is going on. Between symptoms, the drugs masking symptoms and the drugs causing side effects, it can be impossible to tell. They already know your case history and it would be faster than starting with another center.

Mostly, I just want you to get to ANY center! I'm worried about you.

[onatreetop]

I will email JHU to see when I can get in again. The meds are messed up I know I am not a doc or nurse but 20 meds is more than anyone I have ever met or heard of taking. Even my mom when she was over perscribed by her prim doc who almost killed her. Add vits etc. and no wonder I am not hungery til after work I am full of meds. I call myself a chemical valcano waiting to blow. I am worried about myself too. Thats why I was so let down by the RA yesturday. It was almost like he had given up. No ideas to lower or change anything and the 3 month wait was a first. I haveseen him every month since he the dx of wg. Not to mention the monthly lab work to every two monthes? On all these meds? Ithink hes lost his marbles? or I have?

[Sangye]

Yeah, 20 meds is insane. I think he has mismanaged your care terribly. :sad:

[onatreetop]

it was a colabrated effort of all the specialist and the RA. For some reason I am taking 3 different bloodpreasure meds? RA gave me the Cymbalta, Methotexate that I drink now, The modrel steriod, The remicade is the new one. The urol. has me on 4 for the kidneystones and bladder pain. The pulm has me on inhaler.I need the list cant remember all the docs names and meds. To many thats all. Will get in touch with philly and JHU today. Sinuses are going crazy 2day. Ent time again. Will try to get back on tonight. Thanks for the support and validation. it is a mess.

[elephant]

Onatreetop, happy to hear you are going to JHU. All those meds that you are on can cause havoc to your liver. Take baby steps and the first baby step is to call/email JHU Monday. Keep us posted and we want to hear from you.

[onatreetop]

Will do. Got the Philly Appt made next is JHU. Not a good morning. Bad night. Going to get moving andhope to work some of the swelling out.

[onatreetop]

I just wanted to thank all of you once again for the support and kindness. i dont know what I would ever have done without this wonderful group of people. The understanding and info are pricleess. Thanks again!!!!!!

[DEE]

I just wanted to thank all of you once again for the support and kindness. i dont know what I would ever have done without this wonderful group of people. The understanding and info are pricleess. Thanks again!!!!!!

Take care onatreetop hope things start to work iut soon DEE x :hug1:

[Sangye]

I hope things start to turn around for you. I know they will once you get back to JHU. Take care of yourself. :hug2:

[onatreetop]

Hello all. have a moment and thought I would check in. Had my kidney stones blasted again this week. They were the last 2 but have grown a bit. 14mm and 10mm. Have passed over 30 fragments now. holy moly what a week. Feeling so so. Lots of meds for the pain of coarse. Started going to a ciropractor too. thought it would be worth a shot. Anything to ease the pains. It has helped with my back hips headaches etc. the hands keep giving me heck. Had to put off the remicaid this week. It would have been dose 3. The dose that is the one that is going to decide if it is helping or not. The hands are looking RA. Was hoping the remicaid would help more but need the 3rd dose still.
I have been trying to keep moving. It does make a difference. Longer I am still the stiffer I get.
Still waitmg on JHU. havent heard a sound from them. All docs hae sent everything but nodda.

[elephant]

Keep calling and don't give up Onatreetop. Glad you let us know what is going on. I think the Wegeners is acting up in you. Back in the day they thought I had Rheumatoid arthritis, but all along it was The Wegeners in disguise.

[onatreetop]

i believe you could be right again. the area of where te mass wwas removed is swollen as muchas it was before. the biopsy was neg. for wegeners. They called tem rare white cell masses.

[Sangye]

I suggest you check back with JHU, Tree. Make sure you speak with Kim to find out the status of your case. She's pretty good about staying on top of things but every so often she slips or gets bogged down.

[onatreetop]

Me again. HAd my third iv infusion thursday of remicade and was hoping for a progress. But not this time. Lungs are giving me a hard time. so......back to the cytx in a month. not breathing well isnt fun. So it came down to that....... lungs or joints? joints dont work if you cant breathe. Havent heard from JHU. Haveto work on that one. So I met doc # 15 wednesday. New urlogist. 3 lithos later I still have stones and pain. My Aunt is a nurse and advised me it was time to change. So I found a group closer. We have 3 more weeks to get the kidneys under control so I can start the cytx. Lungs have noddles back and lining is thickining. Neb treatments inhalers etc. pulm function test arent great. Thats why we are going to be more agressive again.

[elephant]

Wishing you the best onatreetop. Lets get this WG in remission. You had a enough of this. BYE, BYE WEGGIE!

[onatreetop]

Well it was a good thing I went to the new docs. They ran some test and did some xrays and found the 2 stones that were not spost to be there and a large mass in the left kidney. Had surgery 4 days ago. They removed the stones and found that there has more calc. lining 1/4 of the inside wall of that kidney. not a stone but a thin coating that covered a large area. They removed it with the laser. Left a stint in that is coming out this friday.The bleeding has finely let up but I need to be really careful.take breaks and lay on my side etc. thank you pain meds. There were 2 times I almost went 2 the ER with the sharp pain that didnt last long thank you up there! Hope to get results from the biopsy too.

[DEE]

Hi onatreetop, sorry you have been through so much .Wishing you a speedy recovery DEE :hug1::hug2::hug3:

[onatreetop]

Still have my original parts! So i am happy. went into the hospital not knowing what was going to happen til they got in there. Hoping for a quick recovery also. I dont do still very well. Unless medicaided. Thank you steriods. Right before the surgery they gave me an extra 24mgs of pred in the IV and antibiotics.Yippy!!! 48mgs that day. But the general knocked me out thank you higher power.
I am glad its over with, I hope.

[Sangye]

Yikes, I hope everything turns out okay. :sad:

[onatreetop]

Me too. Hoping that the nagging pain wont return after the healing. Was a good thing went to go to another urologist. The other one was doing his best I no and am greatful for his efforts. But he never saw the mass? Makes you wonder what could have happened if not found. Kidney would have lined itself making it unfuctioning? What if"s. oh boy. Onto the next hurtle!

[Chris G]

Oh my gosh, I've been reading on all of your troubles. All this time has passed, and you still haven't been able to get an appointment at JHU??? It looks like it's been months that you've been trying.

Have you considered the possibility of going to Cleveland Clinic? I know it would be farther for you go, but several people in the group have EASILY gotten appointments with Dr. Langford, within weeks of requesting an appointment. AND you can do it yourself on-line! They do not require a doctor's referral.

Your lung/breathing problems sound very scary to me. How's that been lately?

[onatreetop]

Lungs seem steady or I just cant tell with the kidney happenings right now. Allergies are worse. It is tree pollen time here. You can see clouds of it blowing around. I am waiting for the biospy from the surgery before I start pushing for jhu etc. If they are grans than I will call til I speak with a human there. Friday AM is the big day. Hope they have the results back. right kidney keeps reminding me its there but no one but me seems concerned. Will tell the urologist AGAIN in the am.

[pberggren1]

I can understand your frustration onatreetop. Hopefully the biopsy results are in soon. JHU sounds like a good option to me.

[Sangye]

ChrisG, it doesn't take that long to get an appt at JHU, especially since Onatreetop has been there before. It's a matter of actually picking up the phone. Ahem. :wink1::biggrin1:

[pberggren1]

Phone, there's a novel concept. LOL:w00t:

[elephant]

Get better On a Tree Top! Yes pick up the phone! JHU awaits you!

[onatreetop]

Hi all. Had my2nd scope into the left kidney. They lasered and basket the kidney. I have passed so many stones it was almost like peeing sand for 3 weeks. The stent was finally removed wednesday and it wasnt where they put it. it was on its way out all by its self. No fishing for this stent. They could only remove 75% of the calium that has grown on the inside of the kidney. If they need to remove the rest then it will be by surgery. They couldnt reach the rest with the scope. Had the endscopy done also. They did dilate the esophagus and I can swallow again. Waiting for the insurance to approve a new iv therapy for RA. Dont have the name But it is only once every six monthes. Means no more methotraxate after first infusion. The FDA just approved it for RA useage. It is a cancer med. Hope to findout soon. Will let everyone no what it is and when.

[pberggren1]

This sounds interesting onatreetop. Did they scope your kidneys by going in through the urethra and into bladder? The reason I am asking is that I am not too familiar with atatomy. That must have been painful to urinate like that. So did they say the calcium deposit that was left is anything serious to worry about? What caused the calcium deposit? I hope the insurance does approve the new drug for you.

[onatreetop]

Well it isnt new after all. Just new to the RA doc. Its the rtx. They said 2 times the first month then every 6 monthes? And yes they enter throw the urethra into the bladder then into the kidney. it was fine but they did do a general anast. for both surgeries. I do have to watchout for passing stones still. The pain is not as bad as it was before the first surgery. Havent got test results back from them yet.
Did get the enduscopy back it was neg. for wegeners which is good but doesnt explain the tube narrowing. its been a week and a half since it was dilated and it seems to be back to touching again.