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Thread: onatreetop5 update

  1. #1
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    Default onatreetop5 update

    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.

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    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.

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

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    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.

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

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    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.

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    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.

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    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?

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    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.

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    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.

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