All About Rituximab

[Col 23]

Thinkng of you LisaMarie, hope it just goes away for you.
cheers Col 23

[LisaMarie]

ok i need some advise...no fever....sputum is light yellow now ...still have horrid cough.....due for rituxan tomorrow at 10 am .....do I proceed so I do not have to delay treatment ???? i know ot will make me feel like a mack truck is still running me over but the thought of getting a lower dose of pred seems like a pretty good trade off...doc says as long as I am not sick...ie fever I can take it..but i need to rest and take it easy....any thoughts from my wise fellow WG ..please

[elephant]

LisaMarie talk it over with your doctor. It is up to you, also getting the doctors opinion helps. I was in the same type of situation re: Lung surgery....was ready to go to surgery and I stopped it. My surgeon had to be called in and discuss it with me....because I wasn't feeling good and told him my father in law( he was staying with us) has pneumonia....so we delayed it for three days. I started antibiotics and I felt better. :)

[Sangye]

LisaMarie, my gut tells me you should consider delaying it a few days and maybe start abx. Wiping out your B cells with rtx right when you're trying to fight a bacterial infection is not good. You're already immune-compromised. Pred can mask fevers. I'm surprised your doc is telling you it's okay to proceed unless you have a fever.

Dr Seo told me Weggies often get in more trouble due to infections than from the Wegs itself.

Most important is: What does your gut tell you?

[LisaMarie]

My gut at this time says to preceed.........i am not coughing up as much and have started on flovent for 2 weeks to keep my trach open...i am feeling better since the increase in sinus riinses and increase in fluid...i take a nap every day......my pcp thinks it may be just allergies flaring with the WG...so i will wait and see how i feel in the moring...thanks for the advise.....he di take the solumedrol out of the pred med as i am on 60 mg of pred ...will keep yall all posted:confused:

[Sangye]

I hope you feel much better by the end of the day! :)

[LisaMarie]

Today is my second dose of of rituxan...wish me luck...no fever so it is a go ...i go see the doc on the 19th,..i premed at 0900 then infusion at 1000...then off to home to bed....See i am listening to my body ...my doctor will be soo proud and Sangye..tooo......not looking forward to feeling worse after wards but the ends result should be worth it...right......will keep you all posted...and yes i still have the cough...not as much sputum......thanks for all the support...hope you all are doing well:cool:

[Sangye]

Good luck Lisa Marie!!! I hope you don't feel as bad afterwards as you expect (but I know that's a tall order). Hang in there-- :)

[LisaMarie]

Good luck Lisa Marie!!! I hope you don't feel as bad afterwards as you expect (but I know that's a tall order). Hang in there-- :)
Just finished my second dose of rituxan....feel ughh but it caould be worse ...have some chubby cheeks per my co worker and half open eyes...gonna wait an 1/2 hour before i attempt to drive my self home....wish me luck...promise to call for a ride if i can not do it....just want my comfy bed at home...got a little more nausea with this round though:tongue:

[elephant]

Glad you got thru it Lisamarie! Rest well tonight!

[LisaMarie]

Ok I have another question.....the right side upper part of my lovely nose is red and swollen and sore ...by my bridge and my eye underneath looks bruised ....so is this the beginning of saddle nose.....I see the WG specialist on thursday but not the trach one til Sept 9th...so any input would be great...thanks:crying:

[Sangye]

Maybe your tear duct is inflamed? Do you have eye involvement?

[JanW]

I never had any bruising of swelling in connection with the saddle nose and no pain whatsoever. It's most likely something else.

[LisaMarie]

it is the the same eye that i lost my eyelashes in but no tear duct just dry eye worse at times then others ...weird me i know

[elephant]

LisaMarie, I never had that. Get it check out today.

[LisaMarie]

I see the WG specialist tomorrow ...can't get in any earlier...had my labs drawn...does anyone know what a PPK is when order on a chemistry set?......I promise to take it easy and watch it.....it is only slightly swollen ...just enough to be noticable...it just hurts and wearing glassess suck but my eye is too dry for my contacts....so I will deal with it.....only gonna work w few hours then go home to rest.....WG is so dang confusing at times......and as we all know it effects us differently.....the lovely nurse at the doc office said .."it is probably just a falre up in another site of you WG...remember we do not have you in remission and things will happen till we get you there"...ughh i just wanna smacker her ...even if she does make a little sense....talk to you all later:razz:
PS I live the new smiley's

[LisaMarie]

ok guys my bun and creatine r wnl but by GFR is 52....hopefully this is a drug s/e ....i will know more tomorrow when i see the doc....anything below 60 is concerning...below 30 gets u to a kidney specialist and 15 get u a transplant....wish me luck....i m off to bed

[elephant]

Hang in there LisaMarie. Keep us updated.

[Sangye]

Lisa Marie, I hope your Wegs specialist can clear this up for you. Good luck with your appt today! Big hugs to you while you survive it all.... :hug1:

[Lightwarrior]

....wish me luck....i m off to bed

LUCK, LUCK, LUCK, hope you slept well Lisa Marie :hug1:

[LisaMarie]

Thanks ya ll...trying to finish some stuff up at work then off to the doc...I also printed off a list of questions...hehehe so my pred brain won't interfer with me getting answers....i will kepp ya all post ..love the hugs:thumbsup:

[LisaMarie]

ok i am finally home here's the plan..100mg Imuran to start this week while i am on the Rituxan ....decrease prednisone to 40mg, lasix 20mg with kcl to help get rid of the h2o i am retaining plan to maybe be off prednisone in 6 months if all goes well still not sure why my inside mouth is swollen and has sores except for lovely WG.....he wants me to see the eye doctor for my right eye and the otolarngist to call him after he scopes me on 9/9 so i have some good hopeful new Yeah

[elephant]

Lisa Marie, glad you have a plan in place. Hoping the sores in your mouth go away. I have read somewhere that you can have sores in the mouth from WG.

[LisaMarie]

it is so wierd.:..my inside cheeks are swollen and i get ulcers or my skin turns white and peels....no mouth wash has helped or rinse....maybe when i am in remission it will go way....i can hope....i more excited about decreasing my pred ....i have gained 12#...ughhh....he said to play with when i take my imuran...make sure it is with food and may have to split the dose to decrease or hopefully avoid the nausea....now i wait for the trach specialist to tell me when he will open me again...i know i have closed more but can not do anything til the rituxan is done....on my way to worj a few hours then get my rituxan have a great day

[Sangye]

That sounds like a good plan, Lisa Marie. I hope as the rtx starts to work the mouth sores clear up. Which rtx infusion is this-- #2 or #3? I've lost track.... You'll start feeling better 6 weeks after the first infusion, maybe sooner. Dr Seo had told me the 6 week number and it was true. All of a sudden that week it was like a fog started lifting.

[LisaMarie]

This will be infusion number 3 ...then one more to go....he said based on the reve study it may be my one time to get rituxan if the imuran does what it is suppose to do.....aas far as my heart goes..the only way to truly confirm that it is there is with a biopsy...not gonna do that...sorry way to evasive...but even if we confirm it ..there is nothing else to do tah what we are doing...so the plan is to watch it closely ...i have an article about one person that they biopsied after she had a large heart mass remove and it was WG....so my plan is to listen to my body ...not over do it and play the dog stays asleep in my heart....see everything point to WG but he will not do anything different then he is doing now....so it is a part of life I will adjust to and I am fine with that...for now at least...i keep telling myself it could be so much worse.....

I hope you are feeling better today Sangye:thumbsup::hug3:

[Sangye]

Oh yeah, I can't imagine doing a heart biopsy! If it doesn't change the treatment, there's no reason to do any procedure. I think the Wegs dog will leave your heart alone once it tastes the full dose of rtx.

[elephant]

LisaMarie, I agree with Sangye. I really think it is the WG that has your heart so angry...that RTX will kick its little ....

[Nancy]

Hi All - looking through the past few weeks it appears that Lisa marie is continuing to have issues. That is too bad. I have had my two doses of Rutximab - day after infusion - great!! then tired on day two. 1st dose no issues - slight reaction with administration then went away with short decrease in administration rate. 2nd dose - feeling a bit more tired - but moving and accomplishing more than I have been able to do for some time. I would be REALLY hesitant to let someone even think about a heart biopsy unless there is something that they will be following up with that will cause a significant change in my health - They need to explain what they are going to accomplish Lisa Marie....
I have finally started on a prednisone taper - REALLY slow... at least Dr Abdou laughed when I jokingly said I would slip him money under the table to let me off pred early... He told my mother to help me be patient with him and the med...So by mid-Oct, I should be on 10mg every other day... That makes it a full year on pred this month... I look like an alaskan native (moon face and all) I will not mention the moon shape lower on my body... I am certain you have all seen the results of meds and low energy/tolerance for exercise. Oh yeah, the lack of discipline as well... I am able to work right now - 3 days a week - get tired sometimes - but hate the alternative of staying home and having bills mount...
How are you Sangye? Hopefully the dizziness and fatigue have decreased and the world is the same orientation-wise as others... You are so helpful with so many people here. Lisa Marie - I also would not worry about your GFR at this time - most of the meds that you are taking all can affect your levels - the doc should have told you that the numbers are not a concern < 60 unless they are supported in that same level at least 3 months. Anything shorter than that is just a "noticable" blurb for labs. Keep drinking water and walking...
Has anyone had edema with the RTX treatments - I am having this new persistent pre-tibial pitting edema that short course lasix doesn't seem to touch.. watching diet - not a salt user anyway...but interesting to have the occurrence....Hope that everyone else is in good spirits... Now that I have my signon back in my memory and on the remember me part - I should be back and participating now... Good evening everyone! Better day tomorrow!

[Sangye]

Nancy, it's great to see you're responding well to rtx. That seems to be the case for the majority of us that go on it. I have chronic pitting edema so I can't say that rtx made it worse. Do they give you solumedrol during your infusions? If so, it's probably the additional pred causing fluid retention.

[elephant]

Nancy so glad you doing well! Nancy take care of yourself and keep on trucking...your doing great!

[LisaMarie]

nancy glad u r doing so well...i will be fine.....the doc and i are on agreement about my heart ....we will watch it closely and pray it stays the same...just part of life. can not wait to feel better ...think i was WG raging more than i was willing to admit so that is why i feel so rough ...but i will b be bettwe soon....haves good dat ya ll

[Nancy]

Thanks Sangye - kinda of figured that was the probability - not bothersome as a symptom - just love to carry around more fluid on top of the oral pred additions...

[Palmyra]

it is so wierd.:..my inside cheeks are swollen and i get ulcers or my skin turns white and peels....no mouth wash has helped or rinse...."


Lisa, I have been away for a while, so not up to date. Are the sores in your mouth interfering with your ability to eat? Good nutrition is so important while you are on the mend, so if you are suffering and not eating, not so good.

There are topical sterroids that can help with mouth ulcerations, absorb systemically in very small amounts so will not add to your 'pred' burden, and have rapid onset of action. "Lidex" is one to start with. Requires an Rx here in the States.

Hope you are feeling better soon!

[LisaMarie]

Lisa, I have been away for a while, so not up to date. Are the sores in your mouth interfering with your ability to eat? Good nutrition is so important while you are on the mend, so if you are suffering and not eating, not so good.

There are topical sterroids that can help with mouth ulcerations, absorb systemically in very small amounts so will not add to your 'pred' burden, and have rapid onset of action. "Lidex" is one to start with. Requires an Rx here in the States.






Hope you are feeling better soon!
I will try that ....nothing else has worked....i eat alot of yogart that i freeze.....and do ok eating most of the time and take prenatal vitamin and calcuim with d ......I tried.miracle mouth wash ...it just numbs it but nothing makes it go away....maybe it will disappear when the WG goes into remission......i can hope......have a good night yall

[Palmyra]

Yeah, the miracle mouthwash usually has lidocaine in the prep. As you said, numbs things short term, but doesn't solve the problem. Are you on cytoxin? What other drugs are you taking? I am trying to figure out if the mouth sores are from drug side effects, or from another problem. Do you have inflammatory bowel problems as well?

Making a basic (pH) solution of water and baking soda (~three-four generous tablespoons to one liter) and using that as a rinse will keep the mouth from being too acidic. Use it frequently throughout the day, especially after meals. Avoid acidic or highly spicy foods. Keep eating protein....eggs, fish. That helps us heal.

Lidex ointment is great stuff...get a script if you can. Good luck!

[Aunnie]

Hi All,

I went off the Orencia infusions(study) about 2 weeks ago. I was on them for 7 months.

So now I start Rituximab Sept. 10th for 2 infusions.
I will be going off cellcept and lowering the prednisone,Yahoo,hope I can get lower than 7 mg.

I will be given Decadron and Benadryl also. Not sure of order of drugs yet.I go for more discussion Sept 3rd.

We've also had much discussion on the cost of Rituximab.Long story,short,we will be paying $2000 per infusion.Thats with health insurance. I think I will be having 2 more infusions in 6 months.

I did terrible on Cyclophosamide infusions,so I'm some what worried about Rituximab infusions,only time will tell.....

I've read this whole thread almost twice so thanks to all of you for your info,side effects,discussion etc,etc.


Wish me luck,I am somewhat scared because I really want his one to work.I've had WG since July 2007 and would love to get into remission at some point.

Good and recovering health to all

Aunnie

[elephant]

Aunnie, How are you feeling ? DId the infusions work a little bit?

[LisaMarie]

Yeah, the miracle mouthwash usually has lidocaine in the prep. As you said, numbs things short term, but doesn't solve the problem. Are you on cytoxin? What other drugs are you taking? I am trying to figure out if the mouth sores are from drug side effects, or from another problem. Do you have inflammatory bowel problems as well?

Making a basic (pH) solution of water and baking soda (~three-four generous tablespoons to one liter) and using that as a rinse will keep the mouth from being too acidic. Use it frequently throughout the day, especially after meals. Avoid acidic or highly spicy foods. Keep eating protein....eggs, fish. That helps us heal.

Lidex ointment is great stuff...get a script if you can. Good luck!
I am on rituxan...get my last of 4 doses this friday...pred 40 mg ....imuran 100mg ...just started on friday...prenatal vit, calcuim with vit d and just got a script for lasix and potassuim to help get rid of some of the fliud retention.....started on methotrexatebut did not tolerate well...had one dose of iv cytoxan and did not handle it well either so glad to be on the rituxan...hoping it works...The WG doc thinks it is a form of the aWG and when i am in remission it will resolve...so I guess I wait and see ...I eat alot of greek yogart it is packed with protien and keeps the thrush away

[Sangye]

Aunnie, I hope rtx works well for you. So far it has a great track record. It sure worked well for me and I have refractory (ie non-responsive) Wegs. It sounds like you do, too. The RAVE study showed that rtx is particularly effective for refractory Wegs.

Do you mean you have to pay $2K out of pocket for each infusion? That makes sense if you have an 80/20 insurance plan.

[Aunnie]

Yes, Sangye $2k out of pocket each infusion!
It just amazes me that they think money just grows on trees.
I hope it does work,but I am still nervous about it because what cames after Rituximab....

Elephant, The infusion I guess did work, but not enough to keep doing the infusions.We all want me in remission,I've had WG 3 1/2 years and it would be nice to feel better again. So I guess thats also why I'm nervous about Rituximab because I REALLY WANT IT TO WORK!!!!!!!!!!! And go back to work.

Hugs to all,Thanks for listening

Aunnie

[Sangye]

It'll work, Aunnie. The Wegs dog that's standing beside you is already looking kind of worried.... :smile1:

[Aunnie]

Funny Girl Sangye!!!!!

You made me laugh, which I needed ! Thanks.

I'll keep you all posted and thanks for the encouragement!

Aunnie

[elephant]

Yep Aunnie, I even saw the look on it's face.:blink:

[Aunnie]

Yahoo the Wegs dogs are singing"who let the dogs out" can you hear them?? Everybody sing!!!!!!!
LOL

Aunnie

[Lightwarrior]

Yahoo the Wegs dogs are singing"who let the dogs out" can you hear them?? Everybody sing!!!!!!!
LOL

Aunnie

LOL Aunnie, Get those dogs back up on the porch and make them take a loooooooooooooong nap.

[LisaMarie]

Yes, Sangye $2k out of pocket each infusion!
It just amazes me that they think money just grows on trees.
I hope it does work,but I am still nervous about it because what cames after Rituximab....

Elephant, The infusion I guess did work, but not enough to keep doing the infusions.We all want me in remission,I've had WG 3 1/2 years and it would be nice to feel better again. So I guess thats also why I'm nervous about Rituximab because I REALLY WANT IT TO WORK!!!!!!!!!!! And go back to work.

Hugs to all,Thanks for listening

Aunnie

Aunnie
I am doing rituxan 700 mg weekly iv for 4 weeks....this week is my last dose....it wipes me out and rest is the best medicine for me...i started imuran 100 mg after my 3rd dose of rituxan...my WG specialist hopes this combination based on the rave study will allow me to hopefully not have to take rituxan for a while again if no ever again...plan is ti live on imuran if my body allows it and be off pred in 6 months.....so i am hopefully the dog takes a long nap.....The way it was explained to me was that anything that causes stress or fatigue will cause that mean beast to wake up so staying on top on how i feel to keep him down.....sometimes i wish i had a hugh tranquiler gun to shoot him with....i am hoping to feel like a new person by october if not sooner......see the trach specialist in september to plan the next surgery to open me back up as i have decided to close up again.....atleast it is at a slowwer pace....i feel you about the cost...i was told 8000.00 per dose but negos with my hospital to have the infusions there and may only have to pay 283 per dose....still trying to work the numbers....i promise if i find the money tree the insurance and drug companies think we have i will send all of ya one.....we can rename it the WG research Tree of Knowledge..lol...gonna try to go to work...think i over did it yesterday.....have a great day yall

[LisaMarie]

ok 2 days til my 4th rituxan infusion.....not sure if the imuran is making me more tired or if it is the multi doses of rituxan....almost over slept from my nap to take my son to football practice...he took a nap with me...pretty cool when an 8 yrsold going on 9 will still snuggle on occasion with his mom.....i bruised pretty bad from the last infusion so hopefully this one will go better...plan on having a ride home again....and sleeping thru th infusion with lots of warm blackets to keep the aches away .....handling 40 mg of pred ok feel achy cause of the rituxan and was not pain free or achy free on 60 mg so i guess in 2 weeks i will know the answer to my pred taper......hope yall have a great night:biggrin1:

[elephant]

LisaMarie it's hard to tell if it's the Imuran or RTX or WG. When I was on Imuran for two weeks I was very tired...but I developed a severe reaction to it. Like one of my docs said, you just don't know what is causing what when your on so many different drugs.
He also said if your going to get off any of your WG medicines do it one at a time that way you can monitor slowly and don't have a WG flare. I agree with that statement.

[LisaMarie]

LisaMarie it's hard to tell if it's the Imuran or RTX or WG. When I was on Imuran for two weeks I was very tired...but I developed a severe reaction to it. Like one of my docs said, you just don't know what is causing what when your on so many different drugs.
He also said if your going to get off any of your WG medicines do it one at a time that way you can monitor slowly and don't have a WG flare. I agree with that statement.
what reaction did you get from the imuran?..he is not checking labs for over 5 week?
Just curious?

[elephant]

When I was on imuran, I felt really tired. I felt like I was getting worse. On day 14 of being on Imuran I developed a high fever, joint pain, back pain, severe chest pain and stupid me waited another day to see if it would get better. Well it didn't I was so bad I could not walk or get out of bed...by hubby had to help me walk and once I got to the ER I passed out. So I got in pretty quick. The pharmacist said I had a drug reaction to the Imuran. The Rheumy and a bunch of other docs waited a month to start me on Cellcept but put me on 60 mg prednisone.

[Nancy]

Lisa Marie -
i am so sorry that you are having such a rough go of things... I remember working with oncology patients a type of oral paste that you apply directly onto the sores in the mouth that act like a dental paste and seal off the area so no pain due to no exposure... See if the doc or yourself as a nurse can talk with an oncology nurse or MD and find what they do for oral sores... I hope that the next RTX infusion will bring you out of this "place".... I do agree with you - thank god for kids and dogs - bith can be warm and fuzzy at just the right moments! I will be looking to see how you are doing...
Nancy

[Nancy]

Can I make a request..... Can we Change the WEG DOG to a WEG Bear or Cat or Wolverine..... My dogs are always so glad when I get home, a constant source of comfort and occasional annoyance... but NEVER have they been vicious, painful or intent on stealing my good health... I will find a picture of a really nasty looking animal for the poster child award - just not a dog...

[Sangye]

I chose a dog because I didn't want to hate the Wegs or view it as something trying to kill me. I also chose it because I was picturing the Tom and Jerry cartoons with the big dog Spike and how Tom is always trying to sneak past him. You can use another animal for your Wegs, but I don't want to think of something vicious living in me!


http://www.youtube.com/watch?v=d1O-_Bsd54A&NR=1

[Nancy]

402Sangye - that makes perfect sense... I agree. Here are some animals with the "force" working in our best interests!! I joyfully retract my request. 403

[Sangye]

ROTFL-- those pictures are hilarious! Hmmm... I wonder if I can get Patch and Lotus to wield light sabers.... I don't think my cockatiel would go for it-- I'd need a teeny tiny little light saber for him. :laugh:

[germaine]

I was at the Long Beach Symposium. Great experience. They gave us a four page handout about rituximab which basicly seems to consider it a superior treatment to the Cyclo and less harmful to your body. It was put out by the US National Instututes of Health. They gave a few email sites but I think the correct one is www.ncrr.nih.gov (http://www.ncrr.nih.gov) to get the info. At the Symposium it was expressed that Rituximab had a slightly higher but not satistically significant success rate that cyclo. Apparently there were less relapses with it, and those relapses could again be treated with the rituximab and responded quicker. They seemed to feel it was really the new standard of treatment. They said they felt most people could be treated with about 3-4 to six months of intensive treatment to deal with the intensive phase one of the disease and then with reduced doses for another year to 18 months, with consideration of withdrawal after that for some people. There is a reference in the New England Journal of Medicine. DOI:10.1056/NEJMoa0909905(2010) Embargoed for Release July 14, 2010

[elephant]

Thanks Germaine for the information.

[LisaMarie]

ok guys last dose of Rituxan in icame home yesterday slept 17 hours straight except for potty:razz:l8rgal breaks....got up this morning to watch my youngest make a 2 point conversions in football and play his heart out ...hegot the wind knocked out of him but gave me the thumbs up that he was good...great morning but i still feel like a Mack truck hit me and i wanna take a nap so of to bed i go...hope to feel better later loved watching his game though my bed is calling

[elephant]

Glad you ok. Thanks for the update!

[Sangye]

Glad you finished the rtx. Now you just have to wait for it to kick in. You'll be feeling much better soon.

[LisaMarie]

i stilk feel that a mack truck hit me anf my lower back and hips and kegs are killing md hope i feel bettdr tomorrow so i can go go work....been in bed most of weekend...ughhh this zuck but it sill be worth it jn the end right?l

[elephant]

Sorry you feel so yucko!:sad:

[Sangye]

Lisa Marie, yes it will be worth it in the end. I totally understand. Rtx infusions kick my butt. Each week is worse and the second round was much worse than the first. I didn't think I was gonna survive the last infusion, I was so incredibly weak. Just hang on-- in 2 weeks you'll turn a corner, maybe sooner. Hugs to you meanwhile! :hug2:

[LisaMarie]

Lisa Marie, yes it will be worth it in the end. I totally understand. Rtx infusions kick my butt. Each week is worse and the second round was much worse than the first. I didn't think I was gonna survive the last infusion, I was so incredibly weak. Just hang on-- in 2 weeks you'll turn a corner, maybe sooner. Hugs to you meanwhile! :hug2:
thanks i will try be pstient

[talentx7]

Hi everyone, I was just told Carter will not do his 5th round of Ctx this Friday, they are giving him Rtx instead. I am really nervous about this, but they think he has had enough ctx and in the end the rtx has less damageing results. He started back to school this week, and he is so worried he won't feel well enough to return on Tues. Honestly, so am I. I am very nervous about him reacting to the medicine. Dr. said sometimes it can be severe? Has anyone had a reaction to this med? Dr. also said in 2 weeks he would get another IV of Rtx, then switch to imuran. Is this normal practice?

[Sangye]

The chances of an allergic reaction to rtx are very low. They give prednisone and benadryl before the infusion to minimize the risk even more. They start the infusion very slowly and increase it over the first few hours. This enables them to catch a reaction quickly. Some people have a mild reaction and are able to continue the infusion slowly and/or with more pred or benadryl.

There's no telling how Carter will react. Some people don't notice anything and go right back to their daily life. Others of us feel completely wiped out for days or weeks. It's best to just go into it assuming everything will be fine and that he'll tolerate it without any problems. Focus on the low toxicity of rtx and the great results they're having with it.

[LisaMarie]

I agree with Sangye...think positive and hope for the best....he is only geting 2 doses and they are 2 weeks apart....I recieved 4 doses weekly and start imuran on the third infusion...i am very sensitive to meds and felt like a mack truck hit me ...but i was still able to go to work....this last week has been the worse but I am learning to rest.....if you read other post other WG"S only get a scratchy throat.....so we will hope your son get a scratchy throat at most...cytoxin is a wicked drug with horrid long term side effects.....rituxan is better in the long run....so keep the faith and i will keep your family in my thoughts and prayers......

[Sangye]

Talentx7, I just noticed that you asked if it was normal to get 2 doses 2 weeks apart and then start imuran. There are 2 protocols used with rtx-- 1) weekly infusions for 4 weeks, or 2) 1 every other week for a total of 2. Since he's already been on ctx, it would probably be too much to give him the 4 infusions. That's used for highly active Wegs.

Regarding starting imuran automatically.... Using a milder drug right after rtx treatments seems to be all over the place right now. I was sure Dr Seo would put me back on Cellcept after my second round of rtx infusions, but he said it isn't necessary, and that I should just expect to repeat the rtx in a year. So far so good. This is something I would grill the docs about. What are they basing their imuran plan on? How do they know it's necessary? (I'm not saying it isn't, I just want them to give you the reasons for their decision)

I think of how my JHU docs discuss such things with me. They always quote the research and use evidence-based medicine. They discuss what research has shown to be effective, ineffective or inconclusive. It gives me confidence that they're not just pulling their treatment plans out of the ethers. You deserve that, too.

[Aunnie]

Hi All
I start my Rituximab infusions Sept. 10th. Im receiving 2 infusions ,2 weeks apart. With the infusions I will get Decadron,Benadryl and Tylenol.Im told I should have no major problems,maybe tired the following day.

LisaMarie and Sangye:

I know you guys had a really rough time with Rituximab. Did you have a rough time with Cytoxan??

My Doc said the reason for 2 infusions is because I don't have any Chest,kidneys or Stenosis issues, so only 2 is enough.He said they learned that from the RAVE study.
He said it should 2-3 months to notice improvementis that how it was for you guys?? I really want to go back to work...

I have tickets to see The Boston Pops with Keith Lockhart and also Kenny Loggins for ths SAT. evening but because of Hurricane EARL it is postponed to Sept 10th... go figure so now I can't go but at least I get my money back....
Well have a ice Labor Day week-end and good health to all!!

Aunnie

[Sangye]

Aunnie, I had a terrible time with ctx both times I was on it. It's overly toxic to me and destroys my bone marrow faster than I can make it. Rtx was pretty rough. I don't know how much of that was due to the hit of pred, though (100mg IV solumedrol = 155 mg oral pred). Since I've been back on high-dose pred I've noticed similar weakness.

At any rate, I began to feel better 6 weeks after the first infusion.

If you're only doing 2 infusions you are very unlikely to have problems. I didn't bounce back each week in time for the next infusion but probably would have in 2 weeks.

[TBulger]

I finished the four dose plan a month ago. The first infusion went so well that I was working the next day. The next three caused fatigue, but nothing too bad and I was at work the following day each time.

I started feeling stronger two weeks after the last infusion and am now taking the stairs at the office again. We have started the long process of reducing Prednisone. The doctor originally thought that we would do another round of Rituxan, but after consulting with other doctors we are starting a low dose of Imuran.

I feel stronger than I have in a very long time. I have not had a pain pill in several weeks. The general fatigue is gone. I feel like I may have turned a corner and sent the little dog to the corner for a time out.

[Sangye]

Wow, that is so great to hear! I hope you keep improving.

[elephant]

Tbulger, that is great news and thanks for the update. Keep us posted on how you are doing with the Imuran. How much prednisone are you on now?

[TBulger]

Had been on 60mg of Prednisone per day. Currently at 30 and tapering slowly. I would like to go much faster, but I know I can't. Prednisone is the best and worst drug. I know it keeps things from degrading, but I feel like one of those giant balloons in the Macy's Christmas parade.

[Sangye]

I feel like one of those giant balloons in the Macy's Christmas parade.
I'm the peanut M&M! :rolleyes1:

[jennifer]

I finally got approved for Rx therapy, after almost 1 full year of appeals with the insurance company. I'm excited to start this tx, and have this in remission. Any advice or recommendations about the Rx drug.

Jennifer

[elephant]

I am so sorry Jennifer that it took so long. Glad you are starting it. Never been on it, but you will have company soon.:biggrin1:

[drz]

Had been on 60mg of Prednisone per day. Currently at 30 and tapering slowly. I would like to go much faster, but I know I can't. Prednisone is the best and worst drug. I know it keeps things from degrading, but I feel like one of those giant balloons in the Macy's Christmas parade.

I am now at 30 mg too. How slowly are you tapering prednisone? I was on 70 three months ago.

[Sangye]

Hi Jennifer, so glad you finally got approved! What took so long? That's disgraceful....

I suggest reading the first posts on this thread for info about rtx. Like most of our threads, we probably diverged onto other topics after a bit, but the first bunch of posts are usually on topic! :biggrin1:

[julia]

I was reading the mayoclinic web site on wegeners. They refer to rtx as an experimental drug for wegeners. I am sure that does not help in getting approval from insurance companies.

[Sangye]

It's definitely a bad thing to have an error like that on their website, but insurance companies will go with the doctor's letter.

The JHU website is way out of date (and doesn't even mention rtx!). I asked Dr Seo if they could please update it. He said it's a matter of getting the funding for it. Sad, huh? Lots of people aren't getting accurate info just because vasculitis isn't a common disease. :sad:

[LisaMarie]

ok guys i go to the WG specialkist tomorrow to review labs and progress and plan....bad news i had my labs drawn and my CRP is 5.9 and my liver enzymes have quadurpled when they were all normal....my knees are swollen and hurt so bad i can barely walk they have hurt since friday ...today my ankles hurt worse than normal i am 2weeks outfrom my rtx but have been on imutants for the past 4 weeks.....is this normal.....i ache all over....notsure how i amgonna make it to work....any suggestion on what to ask the doc...iknow imuran can mess with your liver.....but i did not think it would happened. this fast:

[Sangye]

Yikes. It sure sounds like imuran could be the culprit. I can't imagine your doc would keep you on it.

I've lost track-- you finished 4 rtx infusions?

[LisaMarie]

yep all 4 and my labs werw fine after 2 doses....then we started the imuran with the rtx...so i have been off rtx for 2weeks and on 100mg of imuran for 4 weeks now....atleast i am not jaundice yet....i was hopingto feel better this week not worse...and my crp went from 0.05 to 5.9and high end of norm is 0.9 so the beazt is definately wake and mad....wonder if this has happened to anyone else?

[Sangye]

Maybe it's not Wegs? I wonder if the imuran could be causing your CRP to go high, if it's inflaming the liver.

[elephant]

LisaMarie, see if they can get you off the imuran. It could be the imuran, I had a severe reaction to imuran...I could barly walk secondary to back and chest pain and other stuff.

[LisaMarie]

LisaMarie, see if they can get you off the imuran. It could be the imuran, I had a severe reaction to imuran...I could barly walk secondary to back and chest pain and other stuff.

i hope not....everything hurts...my lungs ribs back legs...but i can not tolerate metho or cytoxin.....i know the liver enzyme elevation os a rare side effect of imuran but i am so fustrated that my CRP is so high....i have nor heard from the doctor to and i see him tomorrow.....will have a long listof questions this time...i was so wanting to feel better....my bet is he will increase my pred back to 60mg....i thought i had read u had problems with imuran....i beginning to hate the roller coaster....i can barely walk today.....ughh where's a milk dud when u need one..lol

[Sangye]

I bet it's the imuran. You were doing good after the rtx, and this is about the time that it would start kicking in. I don't see why he'd increase your pred that high, if he does at all. Gotta stop the imuran first to see if it's the culprit. That seems most logical to me.

[LisaMarie]

but what replaces imuran????

[JanW]

probably cellcept, if you can't use mtx.

[elephant]

Yea, JanW is right, they will put you on cellcept. LisaMarie, you sound like you need to be seen soon by your Rhuemy. If you start to have fevers or chest pain go to the ER immediatly.

[pberggren1]

Or maybe nothing at all.

Lisa Marie, maybe you did not need the Imuran.

[jennifer]

Hey Sangye,
My Doctor has been fighting with my insurance company for almost a full year. It really sucks, they seem to be so inconsistent with what they approve, I appreciate her determination in getting what I need. I'm done with the Cx drug and look forward to Rx which should be less toxic on my system.
thanks for all your support.

[drz]

Hey Sangye,
My Doctor has been fighting with my insurance company for almost a full year. It really sucks, they seem to be so inconsistent with what they approve, I appreciate her determination in getting what I need. I'm done with the Cx drug and look forward to Rx which should be less toxic on my system.
thanks for all your support.

I guess I have been extremely lucky so far with treatment for Wegener's disease after shaky start with trouble getting correct diagnosis. No trouble with appointments, insurance coverage, payment etc. Now getting CGM for diabetes is another story so I will probably just give up on using them due to cost and lack of insurance coverage since BG has been running pretty good lately anyway.

[Sangye]

LisaMarie, I stopped Cellcept before going back on ctx and then starting rtx. After the first course of rtx I wasn't on any immunosuppressant. When I finished my second course of rtx, I assumed Dr Seo would put me back on Cellcept. Nope! He said there's no reason to keep me on anything until I repeat rtx in a year (if needed). I shouldn't even need to be on pred.

Rtx destroys the B cells and so does Cellcept. As far as I know they couldn't put you on Cellcept until/unless your B cells started coming back along with symptoms.

[LisaMarie]

my symptoms are still here and others r worse...and it always seems to be worse on my right side ...my neck and right side of my face are swollen and sore i k.ow i am whinning .....i just want to feel better not worsei have never hurt this bad....so i will mwdiatte and pray for peace and answers tomorrow....my husband want me to take leave from work but we can not afford it right now...i hate this

[elephant]

LIsamarie that is why we are here. You can vent all you want here. When I had pain in my face everything was on the left side ( left cheek, ear,eye arm,leg and even the teeth ). Are you on Bactrim DS?

[Sangye]

LisaMarie, please call your rheumy first thing in the morning. (I lost track of when you were going back) If you're having a reaction to imuran, it's not safe to wait.

[DEE]

LisaMaria i am going through the same thing as you at the moment but with Cellcept even to the fact that i said i felt worse
rang wg consult on Monday who took me off straight away feeling much better today hopefully will find out what next this afternoon
take care of you hang in there
i understand the work situation as i was in the same situation but pushed myself to hard even a few catch up days off is better than nothing :hug2:

[Jack]

my husband want me to take leave from work but we can not afford it right now...
Do you lose money when you take sick leave? There is always a fully paid period available here and I don't know how I would have managed without it. I have spent several years away from work on paid sick leave during my life with Wegener's.

[LisaMarie]

see the WG specialist this afternoon ....feel the same if not worse today

[DEE]

good luck hope they can sort you out quickly take care of you DEE x

[Sangye]

I have spent several years away from work on paid sick leave during my life with Wegener's.
I'm sure every American member reading this statement is speechless. We don't have anything like this. Sick leave is maybe a couple weeks, maybe a little longer if you have a high-level job. After that you lose your job. And your health insurance. We don't allow sickness in America. :sad:

[Sangye]

see the WG specialist this afternoon ....feel the same if not worse today
I'm relieved you see your doc today, Lisa Marie. Hope it goes well.

[Jack]

You can't lose your job for being sick in the UK, but you can run out of sick pay. This happened to me at the end - I was off work for 2 years and then the money ran out and I was retired on a pension. If I had insisted, my job would have been kept open, but I would receive no pay. Since I could see that things were not likely to improve, the pension was the best option.

[pberggren1]

I'm sure every American member reading this statement is speechless. We don't have anything like this. Sick leave is maybe a couple weeks, maybe a little longer if you have a high-level job. After that you lose your job. And your health insurance. We don't allow sickness in America. :sad:

It's the same here in Canada Sangye. If you get sick for any period of time most employers will toss you out.

[LisaMarie]

at doc now labs are slightly worse had them redrawn this morning feel like crap....i have limited sick time and try to do a side job to make ends meet....i have no benefits from my side job....so it is not fessiable right now....and i can get short term disablity since i have already been diagnosis. ugh

[elephant]

Lisamarie what are you going to do and what labs are worse?

[LisaMarie]

ok finally done at the doc...new plan..i have a small pnuemonia...on levaquin...if not better by friday have to go back and may can earn myself a hospital admit....liver enzymes worse off imuran..it is not playing nice with my liver...CRP is higher doc is perplexed potassium in low so on potassium 20new every other day ...increased pews back up to 60mg ughhh....recheck in 2 weeks for labs then decide if i have to go back on Iv cytoxin or can try cellecept ...ordered to rest...can barely walk and stairs are almost impossible cause my knees and ankles hurt so bad...so i am off to bed

[Sangye]

Hmmm... Lisa Marie, how convincing was that pneumonia? Does it look like atypical pneumonia? Wegs often looks like pneumonia on x-ray and CT. Are you having fevers? Any other indications of pneumonia?

I'm sure glad he took you off the imuran. I hope that's all it is. Big hugs to you, dear. :hug2:

[LisaMarie]

had a fever saturday and then again at the Doc office...Doc read x ray himself and said it was an infiltration not WG .....so all i can do is trust and wait i hate taking 60 mg of pred i am so fustrated

[Sangye]

Lisa Marie, please ask your doc to have a radiologist review the films. I don't remember if you had lung involvement before, but if so the films should be compared.

I Googled to see if imuran can cause pneumonitis like mtx. Sure enough: Azathioprine-associated interstitial pneumonitis. [Am J Clin Pathol. 1984] - PubMed result (http://www.ncbi.nlm.nih.gov/pubmed/6380265)

Does your doc know this? I'd hate to see you on antibiotics and high-dose pred for this.

[LisaMarie]

no lung involved that i know off no fever last night ...staying home from work today to rest then go back to work tomorrow

[LisaMarie]

i stopped the imuran ...i think the fact my CRP went up to 5.9 when it was normal before is perplexing him and the fact my joints are so sore o can barely walk or make it up the stairs...i just hit me hard n fast so he is playing it on safe side

[elephant]

Lisamarie, did they culture it to find out it was pneumonia? Rest well tonight LisaMarie. I am confused about them considering cytoxan vs cellcept....it is usually cytoxan vs Rtx.

[Sangye]

And I'm confused about how they can put you on Cellcept when rtx just destroyed all your B cells....

[LisaMarie]

That makes all of us...join my confusion....basically after my labs are draw. in 2weeks he will decide if it is ok to start cellecept if the Rituxan worked if not then he will consider trying cytoxin iv again since i am not looking like i amnot heading into remission with Rituxan so i guess i have to be patient and wait and see....due to my trach i am not able to cough up a deep sputum cough from my lungs so no culture was done only chest xray still havingcold feelings with sweats so i am restimg all weekend ...so i am bummed . i cannot go to my sister in laws baby shower but i will somehow get the cake made...so wish me luck

[elephant]

Lisamarie I hope your not making the cake, you need some rest. Hope tomorrow is a better day for you, sorry you can't make it to the birthday party.

[LisaMarie]

i have help and will make the cake in stages cake tonight ...decorating tomorrow











yes i am making the cake but in stages and with help baking tonight and decora
ting in the morning it's a rubber ducky cake.....i promise to take it easy and it is the cake for our invtrobaby and i am the family baker i hate missing it too...it is just something i have to do

[Sangye]

Are you feeling any better today being off imuran?

[ConnieT]

1.) Why did you have to take this medication? I had red blood cell casts in my urine tests after 2 years of treating with cytoxan, cellcept and prednisone. i got into one of the Mayo clinic trials
2.) Did you fail at another drug first? yes cytoxan and cellcept - my bone marrow had been comprimised from prior treatment with cytoxan for non-hodgskins lymphoma
3.) What medications were you on when you started Rituximab? prednisone and bactrim and cellcept
4.) What medications were you able to stop once you started Rituximab? all - i also had tostart on Mepron as i developed an allergy to sulfa drugs.
5.) How long before you were in remission after taking the Rituximab? 1st tiem 7 months, after second treatment it was 18 months
6.) How did it make you feel? i had no side affects - maybe a little sinus congestion while being transfused.
7.) What condition were you in prior to starting Rituximab? i was having an awful flare, sinus, joint pain eye irratations
8.) How many "rounds" of Rituximab did you have to do? I have had 7 rounds since 2002 - rounds being 4 treatments once a week for 4 weeks.
9.) How long does the infusion take? as Luce said the first is long --- for me the others were 4 to 5 hours

I have a history of non-hodgkins lymphoma so methotrexate was never an option. For me Rituxan has beem a miracle drug. Good luck!

ConnieT

[elephant]

ConnieT glad you are doing great and informative. I was told that if I got worse I would be on RTX..I am on cellcept, bactrim, prednisone and cyclosporine. So far so good.

[LisaMarie]

Are you feeling any better today being off imuran?

yes a little better my bones done ache as bad nd my joints are not as stiff

[Sangye]

That's great-- every little bit helps. I bet it's not Wegs causing the trouble, but imuran reaction.

[LisaMarie]

i hope so...does not explain the extremely high CRP level...imuran does not cause that ....got the cake done and someone is delivering it for me so off to bed to rest...i am trying on concentrated on getting the pnuemonia resolved these cold and hot sweats suck

[elephant]

These cold and hot sweats don't sound good LisaMarie. I can understand the hot sweats but cold...

[LisaMarie]

i don't understand either but remember my body is wired so wierd only i can have wierd reaction to drugs and everything else....hopefully i will feel better pnuemonia wise by monday gonna try to take a nap

[Sangye]

i hope so...does not explain the extremely high CRP level...imuran does not cause that ....got the cake done and someone is delivering it for me so off to bed to rest...i am trying on concentrated on getting the pnuemonia resolved these cold and hot sweats suck
My Lab Diagnosis manual lists bacterial infections as one cause of elevated CRP.

[Sangye]

i don't understand either but remember my body is wired so wierd only i can have wierd reaction to drugs and everything else....hopefully i will feel better pnuemonia wise by monday gonna try to take a nap

LOL-- You've got to get in a pretty long line if you wanna claim your body is weird. :flapper:

Imuran reaction is not that uncommon. It usually happens early on, within the first month or so. Hang in there, Lisa Marie. Don't go too far down the road thinking this is Wegs, okay? You've got to give your body rest, let it get rid of the imuran and fight off any infection. You'll be alright. Hugs to you. :hug1:

[LisaMarie]

ok quick update...working short hours ...feel like crap still spike a fever last night of 100.3,....so going back to Doc onThursday a 1200 to recheck the pnuemonia.....my face is more swollen on the right but my knees are better and the rest of my joints just ache ...so I say no more imuran for me...Hate the 60 mg of pred ...go back to WG on Oct 1 for labs and discuss a plan ...noticed some thing new no tissue swelling in my feet but they get cold .......Connie T when my brain is less fried I 'll try to answer your questions...I have only had one round of RTx 1 dose a week for 4 weeks and each week i felt worse /....like a mack truck ran me over...so i did not have a good experience...i also got started on Imuran while i was taking the RTX infusion so who knows which was the greater of the two evils....Check in with you all later

[Sangye]

Lisa Marie, I hope you start to feel better. Hugs to you-- :hug2:

[Brooke]

Lisa Marie - sorry to hear you are not feeling well. I hope you get better soon.
Has anyone else felt miserable after Rituxan infusions? I (luckily) had no side effects what so ever. I am wondering if it is how you are feeling going into the infusions or maybe other medication that you are on affects it? When I had my infusions, I remember the nurse saying there are usually no side effects with Rituxan.

[elephant]

LisaMarie sorry you not feeling well, hope all can get sorted soon.:hug1:

[Jack]

Hope you get things sorted soon LisaMarie, I'm sure you must feel that life owes you a break by now. I know it must seem like just one problem after another, but there is light at the end of the tunnel and you will come through this eventually. :hug2:

[Sangye]

Brooke, I have a very hard time with the rtx infusions. The first leaves me as weak as can be, and each week there is a cumulative effect. By the 4th one, I'm barely functioning. It takes 2 weeks to get back on my feet.

I'm not sure if it's due to the rtx or the 100mg IV solumedrol given during the infusion. I suspect it's the pred, since I turn sheet-white within a few minutes of getting it, before they even hook me up to the rtx infusion. Dr Seo said he could lower the solumedrol to 80mg, but feels lower than that is too risky for an allergic reaction. I don't think the additional 20mg are making that much of a difference, and I'm willing to do anything to avoid an allergic reaction since rtx is my only hope and because it's worked so well.

Dr Seo said he has several patients who react this way to rtx infusions. There's no telling ahead of time who it will affect this way. Others seem to sail through as if they got a saline infusion!

[drz]

Lisa Marie - sorry to hear you are not feeling well. I hope you get better soon.
Has anyone else felt miserable after Rituxan infusions? I (luckily) had no side effects what so ever. I am wondering if it is how you are feeling going into the infusions or maybe other medication that you are on affects it? When I had my infusions, I remember the nurse saying there are usually no side effects with Rituxan.

I don't know if it was related to my Rituxan IV but the next day my bladder shut down and I had to have a catheter inserted to empty my bladder. I have had bladder infections pretty much non stop since then and been on antibiotics five different times. My rheumatologist decided it would be best to just leave me on one till I get off Cytoxan. One urologist thought it was just a coincidence but I had no trouble emptying my bladder before the Rituxan. I know Cytoxan irritates the bladder and increases need to urinate often.

[LisaMarie]

Ok off to Doc at 1200....she is the same day al around doc they have in my WG office...she will check my lovely lungs then if needed get the WG doc.....I do not like the pnuemonia is gone...so I will update ya when I can....I am at work for a bit....I have lucked out to have the best boss in the world that is flexable with me and this lovey disease...see I am trying to stay positive I am actually referring to the big bad dog as lovely

[Brooke]

Drz- Sorry to hear about your bladder, that does not sound like fun at all! Did the Rituxan work for you otherwise? Did you start Cytoxan after the Rituxan?
LisaMarie - I am glad your boss is flexible! My dad is my boss so I am very lucky too!! Hope today goes smooth!

[elephant]

Let us know Lisamarie how everything goes!

[LisaMarie]

here's the latest spent 2.5 hours at the doc got to see the WG specialistto then off for a CT of my chest .....not good so see the pulmonary specialist Monday at 9am ordered to rest til them looks like ugly dog has found a new place to play....not very happy right now.....hope to have a new plan soon

[pberggren1]

I'm sorry to hear your chest CT was not good Lisa Marie. Hopefully on Monday you will be put on the road to recovery.

[elephant]

Sorry LisaMarie, I know this is not fun. The WG specialist will get you back on track!

[Sangye]

Lisa Marie, I'm sorry. What does the CT show? It can be very hard to tell infection from Wegs.

How are your other symptoms? Joint pain better, etc...?

[LisaMarie]

CT shows a right hiler lymph node, mosaic appearing ground glass pulmonary opacities have developed through out the lungs mild atelectasis and/or infiltrate involving the posterior aspect of lungs bilaterial right greater than the left subcentimeter nodule is suggested residing along the anterior adpect of the right minor fissure.....long detailed report above is the highlights ...will remain on levaquin til i see the pulmonary doc...it is pointing towards WG trying to or has already started to spread there ...i can not take a deepbreath and am so fatigued that i can not walk across the room without getting so sob...so i plan on resting as directed and seeing the pulmonary doc on monday

[LisaMarie]

and yes my joints hurts more knees n ankles

[elephant]

LisaMarie take good care of your self. I will be thinking and praying about you. I have a feeling WG is involved in this scandal!! If you start to get worse please go to the ER. Sleep tight.:hug2:

[LisaMarie]

thanks i wil Monday can not come soon enough ...i see iv cytoxan in my near future ..ughh:predrage:

[Sangye]

That CT report doesn't sound good. I'm so sorry this is happening.... I wonder how they'd do ctx on the heels of rtx, since your B cells are wiped out already. Maybe they'll need to do a bronchoscopy to tell if it's infection or Wegs.

If anything worsens at all, please get yourself to the ER immediately, okay? I'm worried about you. :sad:

[LisaMarie]

not sure what they will do....just figuire the rituxan did not work and they have to start me on something.....before it gets worse....i have no idea what

[DEE]

LISAMARIA PLEASE TAKE CARE OF YOU . THINKING OF YOU , DEE x:hug2:

[JanW]

Lisamarie - thinking of you.

[Doug]

Yes, your current condition is worrisome, LisaMarie, and my prayers are with you. Stay strong, and know that there are lots of us behind you.

[LisaMarie]

ok spiked another temp today does anyone know what they may do of it is truly in my lungs .i feel liked crap....i can not even fake well...so that is saying something...i get so sob so easy....so i am sleeping on the sofa...praying Monday comes soon and i don't end up in the hospital.....so of any of u can give me any clue what to except it would be great....trying to stay hydrated thanks for the prayer and support

[elephant]

Infection and Wegeners can do that....from my personal experience...when my WG was active I would spike a temp of 101. and it would only stay with me for 4-5 hours and disappear.
LisaMaire if you feel more short of breath you are going to have to go to the ER. My mother in law had pneumonia when she was visiting us and did not tell us that she was becoming more short of breath....it got so bad I had to call 911. Her respiration's were 30 and shallow breathing....she was a mess. I know it is a pain to go to the ER, I have been there so many times....I thought I should rent a room there.

[Sangye]

Elephant is right. Monday is a long way off and you need to get checked out. My two main concerns are pulmonary hemorrhage and pneumonia. Your CT showed ground glass opacities, which can be blood. You wouldn't necessarily be coughing much or coughing up blood. (My lungs were filled with blood and I barely had a little dry cough)

I've been to the ER more times than I can count and dread it. But I think someone should take a look at you today.

[Jack]

I think there is some good advice here - I hate going to the ER, but I've never found it to be a waste of time. It may serve to put your mind at rest if nothing else.
Hope it works out OK for you.
Jack.

[LisaMarie]

there is no speciali st close and i would have to figuire which hospital of my 3 specialist to go to .....so once my husband gets home he will take me

[LisaMarie]

or i should say maybe he will me....he really hates hospitals ...and he may stay home with the kids and i'll have a friend take me....i will keep u all posted...i spiked again to 102.4 but it went down which leads to WG more than pnuemonia

[Sangye]

Glad you're going.... Hugs to you!

[LisaMarie]

did not go last night...was asleep when he got home and the kids talked and my our possible ride to take them to the corn maze and they did not get home ti 11pm ...so i am holding to seeing the in the morning.....i feel slightly better...staying hydrated and resting.....if i spike a high temp again i'll call the doc....i really don't want some one who has no clue about WG i will keep u all updated

[Sangye]

I hope you do okay today, Lisa Marie. Keep checking in so we know you're alright. :hug1:

[LisaMarie]

ok i will all i need is to see the right Doc ..we all know what happens when the wrong one gets ahold of us

[elephant]

Thanks for the update LisaMarie, we are here for you. I am looking forward to your docs visit tomorrow. :biggrin1:

[LisaMarie]

have u ever heard of aveolar protienosis ? it is a possible dx my CT not wanting to surf the net right now thanks

[Sangye]

That was one of the possibilities on my first CT's, due to the presence of ground-glass opacities. Turned out to be hemorrhaging lungs due to Wegs. I'm sure you already know this, but radiologists read the films as if they don't know anything about your medical history. They only make references to your specific condition if they're comparing a film. That's why they have to list all possibilities, even though it's highly unlikely that you have AP.

[LisaMarie]

admitted to hospitaltoday o2 sat .83% on room air will know more in the morning will keep u posted

[elephant]

LisaMarie, I had a feeling you were going to be admitted. I am sorry you are going through this. We all are thinking of you and we are here always for you.:hug1:Thanks for keeping us posted.:hug2:

[Doug]

Me, too. 83% is poor oxygen saturation, and you no doubt are on oxygen as I write. I hope the doctors have it in control by now. Hugs.

[Jack]

I know it is not a great situation to be in, but you are definitely in the right place with sats that low.
Hope they are able to get you sorted soon.
Jack.

[Sangye]

Yikes... I also felt like you needed to be admitted. I hope they figure out what's going on and what to do. Big hugs to you! :hug1:

[LisaMarie]

getting s bronch at 1030 tomorrow will keep u allposted on 6liters now sating 93%

[Sangye]

Boy am I glad you're in there, Lisa Marie. Good luck tomorrow with the bronch. I'm relieved that they're doing one instead of just guessing.

[jola57]

LisaMarie, I hope the bronch goes well tomorrow and sure glad you are in the hospital. My thoughts will be with you tomorrow

[elephant]

Thanks for letting know and I too will be thinking about you tomorrow.

[Brooke]

Hi LisaMarie -
I too am so sorry you are going through this, I am glad you are at the hospital where at least they can take care of you. I am not so sure if the Rituxan worked in my airways either. Hopefully we don't have to do the Cytoxan but whatever we need to do we should! Hang in there and take it easy.

[LisaMarie]

bronch done no sedation..my sat r too low....even on o2 ...should have some answer soon....thanks for all ur support

[Sangye]

I hope it gives them some answers. Hang in there-- rest. :hug1:

[elephant]

LisaMarie, glad it was done, hope you find out soon. Thinking about you.:hug3:

[LisaMarie]

well i graduted to the icu yesterday put on bipap rough day but better today off bipap and on a non rebreather and nasal cannula.. on several antibioic...so one should clear my cloudy lungs finally coughing up stuff yellow and thick sticky stuff.on tpn too so will
be here over the weekend

[elephant]

So sorry to hear that LisaMarie, but glad you are getting taken care of. Thanks for letting us know. Thinking and praying for you.:hug2:

[Jack]

Sounds like your decision to go to the ER was just in time!

Hope that the stuff moving from your lungs is the first sign that they are getting on top of things and you soon get sorted out.
Hang in there Lisa Marie, we're all thinking of you. :hug2:

[DEE]

glad things are working out Lisamarie thinking of you wishing you well :hug2:DEEx

[talentx7]

They had to stop Carters IV, his throat started to close up. They opted not to continue so are watching him for an hour, then sending him home. I know reactions are common to this, but this seems extreme. Has anyone else had this? Once they send him home, could he continue to react?

[Sangye]

Lisa Marie, I'm glad you're in there. I hope you keep making progress. TPN also... shoot. Hugs to you, girl.

[pberggren1]

Lisa Marie, I'm glad you're in there. I hope you keep making progress. TPN also... shoot. Hugs to you, girl.

What is TPN?

[Sangye]

They had to stop Carters IV, his throat started to close up. They opted not to continue so are watching him for an hour, then sending him home. I know reactions are common to this, but this seems extreme. Has anyone else had this? Once they send him home, could he continue to react?
Oh no.... That's the usual allergic reaction. What other drugs did they give him with the infusion before the reaction? Pred? Benadryl? How much pred?

They should give you good instructions before letting him leave. Once an allergic reaction is stopped, it doesn't continue. But if anything is off, call an ambulance. Don't risk driving him back--takes too long.

[talentx7]

They pretreated him with benadryll. They didn't give him pred, because he had 30mg before he went in. Once he reacted, they stopped meds, gave him more benadryll and solumedral.
They want to watch him for an hour, then are sending him home. Is that long enough??? I don't ant to call 911 today. ( or anyday) Dr also sending him home with Cellcept to start tomorrow. I don't know anything about this drug yet. I am assuming it will be instead of the RTX.
How long does it take to get RTX out of his system???

[LisaMarie]

What is TPN?

total perpherial nut rition thru an iv they think i lost 18# this week

[Sangye]

They pretreated him with benadryll. They didn't give him pred, because he had 30mg before he went in. Once he reacted, they stopped meds, gave him more benadryll and solumedral.
They want to watch him for an hour, then are sending him home. Is that long enough??? I don't ant to call 911 today. ( or anyday) Dr also sending him home with Cellcept to start tomorrow. I don't know anything about this drug yet. I am assuming it will be instead of the RTX.
How long does it take to get RTX out of his system???
Dr Seo told me he wouldn't give me rtx with less than 80mg IV Solumedrol on board. (Solumedrol is stronger than pred, so that 80mg is much more than 80mg oral pred). The nurses in the infusion clinic were not at all surprised that I get 100mg IV solumedrol. I sure hope Carter's docs don't call this a rtx failure. It seems to me they didn't pre-treat with an adequate pred dose to prevent allergic reaction. I don't know that for sure-- just telling you my own experience. Carter is young, and as Dr Seo told me the other day, there's no other drug like rtx coming down the pike any day soon. I'd hate for them to take rtx off the list of possibilities this early on.

I also don't understand why they thought they needed rtx (a big gun) but are now settling for Cellcept (a small gun).

I wouldn't worry about rtx remaining in his system. That isn't how allergic reactions work. I'm sure he's okay by now.

[Jack]

I also don't understand why they thought they needed rtx (a big gun) but are now settling for Cellcept (a small gun).


I thought that was odd too.

[elephant]

It takes a month or two for cellcept to kick in.

[Nancy]

I am so sorry to hear about all of your issues Lisa Marie... I read back a number of days to see how issues have been developing... I hope that you will be better and out of the hospital by Monday. ICU and bronchs are just not the way that life should occur... Are they checking with Abdou about all the medications and care the office is providing? Also - I saw where you saw the general MD at the office - I hear that is not the best from some of the staff... Probable poor use of time... I lost a lot of weight when I was initially Dx about 25 lbs in 30 days - and darned if I did not notice... I am fairly close - if you need something - let me know... another Wegs face can be medicine - good or bad - we have to see...
The issues with the job and money.. I understand that... but you can't make any money dead... The short-term disability will cover you for - what, about 6 months...enough time to clear up this health issue... The cytoxan is not too bad... I took some of the infusions - did not like - they made me nauseated all month... after 2 times I stopped and went back to oral... I know about higher potentials for health issues - but there are basic issues to follow - like drink like your middle name is "Moby" or "Flipper" and the effectiveness is the same and a bit more with the oral... I am available if I can help at all. Sorry to have missed all the chances to provide support.... Nancy

[elephant]

How are you doing Nancy?

[LisaMarie]

still in ICU on bipap waiting on results on tpn and lipids as well anti everything they did stop the vancomycin bit replaced with something else holding my own able to sit in a chair for about 15min and cleaned myself up but got aweful wore out ughh

[Nancy]

Hi elephant -
How are things with you? I just have not been checking in as frequently as apparently I should!
Overall doing pretty well... I feel bad that I am doing so well and Lisa Marie is not... The RTX worked well for me... I am still getting fatigued at times - but feel that I have achieved about 80% of what I had before I took the systemic tumble last October.... No other issues with side effects, etc.... Having this for 15 yrs and having it all change in such a short time has been a learning experience in tolerance... I finally got my hat handed to me from my body - just when I was pretty dead set that I controlled the function and moods... I have a bit of a viral "cold" from one of my patients... too small rooms and poor air exchanges... oh well, this too shall pass! :rolleyes1:
Sangye - you are much too tolerant - I would have taken one look at that chick and reminded her where she worked and with what level of immune suppressed people that she was serving.... then ended with " where is your mask or is there someone else who will draw my blood? If not - I will not have it done today and explain to my doctor why I could not have it done....you!"
Good wishes to all - anything that I can do for you Lisa Marie - let me know... I am in KC usually Monday/Tuesdays for my clinics and would be available after 5 pm...
Nancy

[Sangye]

Nancy, I'm so glad to hear how well you're doing! I hope you get back the remaining 20% very soon.

I normally would have raised a stink with the phlebotomist, but she's the only one there and I'm not going back to JHU for another week. We needed some of the test results that day. I hope Dr Seo handled it. The woman is very difficult and really should not be working there at all. I can usually get the grumpiest people to warm up after awhile, but not her. Two years and she's still nasty.

[LisaMarie]

I am so sorry to hear about all of your issues Lisa Marie... I read back a number of days to see how issues have been developing... I hope that you will be better and out of the hospital by Monday. ICU and bronchs are just not the way that life should occur... Are they checking with Abdou about all the medications and care the office is providing? Also - I saw where you saw the general MD at the office - I hear that is not the best from some of the staff... Probable poor use of time... I lost a lot of weight when I was initially Dx about 25 lbs in 30 days - and darned if I did not notice... I am fairly close - if you need something - let me know... another Wegs face can be medicine - good or bad - we have to see...
The issues with the job and money.. I understand that... but you can't make any money dead... The short-term disability will cover you for - what, about 6 months...enough time to clear up this health issue... The cytoxan is not too bad... I took some of the infusions - did not like - they made me nauseated all month... after 2 times I stopped and went back to oral... I know about higher potentials for health issues - but there are basic issues to follow - like drink like your middle name is "Moby" or "Flipper" and the effectiveness is the same and a bit more with the oral... I am available if I can help at all. Sorry to have missed all the chances to provide support.... Nancy

i know what u r saying...my body handed by but to me for not listening...i saw the urgent care doc and the WG specialst.:..she is an er doc very through and got the specialist right away....once i get
out of icu i may know more

[elephant]

LIsamarie glad you are being taken care of, hopefully you will recover soon.
Nancy that is so wonderful that you are doing so well.

[LisaMarie]

ok quick update now only on Voiconazole and zosyn now plus tpn and lipid but ate better today so maybe get rid it still waiting on the ID doc to see me today...so no answers yet and on bipap on night only and still in icu ....so i wait

[elephant]

Hate that your still in ICU, but you are getting the best care right now. Are they weighing you daily? Did you have a dietitian come in?

[talentx7]

[

I also don't understand why they thought they needed rtx (a big gun) but are now settling for Cellcept (a small gun).

Sangye, All Carters docs are reviewing all his labs and are deciding what to do next. They were giving him Cellcept anyway, even with RTX for maitenance. They said they will get back to me this week and let me know if they will try the Rtx again. I am hoping he dosen't need the BIG gun!!

[Sangye]

I hope they don't need a big gun now, either. I just don't want them taking it off his list of possibilities for the future unless they know for certain he can't tolerate it. Keep asking them hard questions-- you're doing great. :smile1:

[LisaMarie]

quick update in the step down unit doing k ...no answers gonna keep me on the ntifingals came back negative
but we r staying on the drug cause i seem to get better will be here several more days....need bypap at night for a while finally eating still desat with activity and have increased heart rate....hope all is well ...with you all i hope to be able to walk more than 3ft without losing air soon wishme luck:ohmy:

[Sangye]

Glad you're making some progress, Lisa Marie. I bet a lot of your increased heart rate is due to deconditioning. Losing all that weight means you lost muscle. You'll get it back as soon as you get moving, though. Rest up and get well. :smile1:

[elephant]

LIsaMarie just get well, thanks for the update. :hug2:

[DEE]

glad to hear things are getting better Lisamarie take care wishing you all yhe best DEEx

[Nancy]

Glad to here better - still wish you had an easier time breathing... Like Sangye stated - it will be better once back up and about... Glad to hear things are better or at least trending that way....
Nancy

[LisaMarie]

quick update...on mucomyst with neb treatmentd and cpt walked 200 ft on 8 liters of o2 desat to92% and my heart rate increased to 124-135...got to take s shower with the help of 3 lovely ladies i tried to do most of the washing....cxr looks better today ..have a funky tongue with lesion...and of course no one knows what they r...do baby steps will here til at least the weekend

[Sangye]

Lisa Marie, did they rule out pulmonary embolism? The only way is with a CT using PE protocol (ie, pulmonary angiogram).

I hope you start turning a corner soon. :hug2:

[elephant]

Lisamarie the lesions on your tongue ...I am wondering if it is the WG.

[DEE]

Lisamarie get them to check tongue i had lesioons on my tongue when i had my first major flare up
take care of you DEEx

[LisaMarie]

trust me they checking my tongue they took tissue ssmples for cytololgy since the cultures r negative so far....and no PE just some unknown infection but each day i gain

[jola57]

LisaMarie I hope you are going to get better everyday:hug1:

[Nancy]

Has anyone heard from Lisa Marie and how she is doing?? I hope the meds that she was on worked and she is MUCH better....

[LisaMarie]

Ok guys I finally made it home ..on 1 liter o2 for now .....lungs not totaly clear...but much better...have to take bactrims DS daily for a month til I see the ID doc again....will finish my antifungals in 3 day but have to stay on my antivirials for another 8 days......will see the WG specialist Oct 28th...Pulmomary calls me the medical mystery......and want me off pred as soon as possible .....They talked to the WG specialist and he may start cellept....if that happens I will remain on bactrim ds a few days a week...i am hoping to get off o2 in a month or two.....having a near death experience has made me realize that i have a high tolerance for thing and i need to be more intune with my body and listen cause the God Lord may take me next time...they have no idea what the infection is but the antifungal seems to be working...I never been this sick and never want to again.....good news is that there appears to be no evidence of WG in my lungs....yeah:biggrin1:i want to thank you all for your good thoughts and prayers....I may have to do rituxen again...i hope to return to work next week... promise short hours:flapper:

[Sangye]

Glad you're starting to come around, Lisa Marie. It must be very scary to be fighting off so many infections at once. How are they going to start cellcept when you still have infections?

[Jack]

Great to hear that you are making good progress Lisa Marie, but I think that returning to work next week is far too early. You need to give your poor body a bit of a break!

[elephant]

LisaMarie, glad you are feeling better. Agree with Jack, you need to rest. Can't over do it , really. Take good care of yourself, and thanks for letting us know how you are doing.:hug3:

[Sangye]

I agree with Jack and Elephant about resting... I just thought you'd throw your socks at the screen if I mentioned it. :tongue1:

[LisaMarie]

:biggrin1:i am only doing 3-4 hours 2 -3 days a week.....i go see the WG specialist and he will tell me when to start the cellept.....on Oct 28th so I hope I am better by then....i return to pulmonary in a month and they will re eval my need for o2.....I PROMISE TO TAKE IT EASY.....When my family got called that I may not make it ...it shook them up enough that i can not over do it.....i just have to be more in tune to my high tolerance....at times i feel my strong will impedes me instead of helps me...but i am working on balancing it.....my tongue lesions ended up being viral some say shingles ...some say cmv....ID just said viral and the med is making it better.....so i promise to take it one day at a time.....the day i went to the doc my o2 sat was 83% on room air and they are not sure how i made it there but i did ....now my family thinks i need a driver to all my appointments in the city....so I am hoping to improve enough so i can still go alone...i kinda like my independence....funny thing is that my mom went from denial to reality to back to denial

[elephant]

:hug2:LisaMarie, well give it a try ( working 3-4 hours) but if it starts to wear you out ....you need to stop. I will borrow Phil's cape if he let's me and fly there and take care of you!

[Doug]

Lisa Marie ~ It is hard to accept rides from others when you feel you should be able to do the driving for yourself. I had to do this for several months after diagnosis, then again for about a year after I suffered from herpes zoster (shingles on the face, neck) and had uncontrolled pain so severe and random I just didn't feel safe driving. (I'd having blinding attacks at unpredictable times, but especially when I was under stress....)

I note 83% is very poor O2 saturation, and, at the level, you'd be a hazard on the road to yourself (slower response times to road conditions) and others.

My pulmonologist made me use supplementary oxygen until I could maintain a level above 90%. I forget exactly how high, but high enough he was comfortable my lungs were healed sufficiently to support me without supplementary oxygen. Let's hope and pray when you see your pulmonologist next month, he feels your lungs are healed sufficiently for you to take the next step of possibly driving.

Just don't get in a rush. I know I did, and I landed on my caboose when I stepped out of my car. I wasn't quite ready, but I still took chances. I landed on my caboose several times before I truly was ready to drive, which is to say a few weeks after I actually started driving! Please learn from my poor example!

[LisaMarie]

i am on 1 liter all the time to keep my sat greater than 90% with activity at rest i am 95% on 1liter....i promise to take it easy

[elephant]

Good, how are you feeling LisaMarie?

[LisaMarie]

tired but i can breath better...up to 1500 on
my IS so slowly but surely making progress i was barely doing 500...i still have diseased lungs that will a while to clear...but i feel better every day

[elephant]

So glad you are getting better everyday. That is wonderful you are able to get up to 1500!

[Sangye]

Happy to hear your lungs are doing so well, Lisa Marie! :w00t:

[LisaMarie]

thanks i have a goal of 2000 by Monday. i got to go out again today...the sunshine feels good....i am mainly along for the ride....these baby steps at turtle pace r so hard for me ...but i will listen cause i do not want to end up back in the hospital again..i keep mediating...will try yoga in a few weeks...just don't want to push it...i have a great friend staying with me for the next week and a half to help with housework and the kids....since my husband is trying to work as much as he can...i am trying not to worry about the finances and leave it with God...he kept me here for a reason....so i should trust he will take care of everything else...love u all and thanks for all your support

[LisaMarie]

ok finished my first week of work only did 16 hours....so see i was a good girl....i am total exhausted afterwoods....i see a pulmonary doc November4 and then again in December....I see ID November 10.....so for the next 3weeks. i have doc appointments....so maybe i will have some answers ....well i am off to take a nap:biggrin1:

[elephant]

Glad you make it LIsaMarie. Are you still on oxygen? Do you feel like your getting better each day?

[LisaMarie]

still on o2 and per the doc probably will be for a few montbs..ughh my goal is 2months ....each day is different if i push it i feel worse at the end of ghe day...o i have such a fine line to walk..but at least i am able to work some....so turtle pace is where i stay

[Nancy]

I am glad that you are out of the hospital.... Nice place to visit (sigh) lousy place to be as a patient... Take time, I kept pushing and am just coming back... Your strong spirit is what motivates and works against you... Your mother's reaction sounds like mine.. She tells my dad that she is afraid that I will die first and won't tell me.. She then asks about work and doesn't seem to be aware of the WEGS... I do not know if that is denial or "mother coping"... Having a purpose is always a strong motivator for a nurse... bu always be willing to turn that analytical thought process to yourself... as a patient... If you were the nurse talking to a person going through what you are going through - what advice would you offer? Keepin' the faith!

[jola57]

Oh why the sigh, I like staying in the hospital after surgery or if I am sick. You have: 24hr immediate help, 3 meals and snacks, daily maid, friendly roomies, what more can you ask for? :flapper:

[pberggren1]

Oh why the sigh, I like staying in the hospital after surgery or if I am sick. You have: 24hr immediate help, 3 meals and snacks, daily maid, friendly roomies, what more can you ask for? :flapper:

I would ask for foot and head massages.:wink1:

[jola57]

Oh they used to do that too. Boy, this realy ages me.

[LisaMarie]

I guess i am to independent....and did not really like it ....i did have a private room and the best nurses ever....i even hated to ask for them to empty my commode...but i guess if i ever go in again a back rub sounds great

[Jack]

I've had private rooms in the past, but much prefer the main ward - usually 6 - 10 beds. There is always something going on and someone to talk to.

[LisaMarie]

:flapper:Yes I can decrease my o2 usage.......I have seen the WG specialist and the pulmonary doc...now one more to go the ID doc next week......WG agreed to decrease my pred to 20 mg by 11/12....goal is 5 mg..i will not start Cellcept til 6 weeks after I saw him if my lungs are better..saw him 10/28....see him again in December after another follow up with Pulmonary.....He said due to my recent severe illness he can not confirm whether my WG is in remission .....so he wants to wait and see ...so i remain on pred...still have the gum line irritation along with the fish hook scar on my tongue from the virus that occured in the hospital...i still can not consistantly get up to 2000 on my IS...but got to 400 on the peak flow,...they still have no clue what fungus grew in my lungs...but my xray yesterday was great...i have to wear o2 to sleep and for any activity that causes exertion...but sitting at my desk at work I do not have to...as long a I promise to freq check my o2 sats and log then for the next visit.....yes some freedom from the cord....I still tire easily and require naps...my joints hurt.....so i am not convinced i am in remission...jaw still hurts and is swollen...was told by my WG doc no more imuran or rituximab for me...if i flare he is going back to cytoxin......ughh.....i am so sensitive to any drugs..it is the way i am wired...i just hope they find a combination that works for me soon.....I still have some junk in my lungs but it is nothing compared to what it was...yeah:biggrin1:.....they say no WG in my lungs or Kidney's so i am thankful for being here and praying for remission or atleast to feel better...apparently i asked the doc to go home everyday even while i was in the ICU.....He said he has never met anyone like me....and it can work to my advantage at times but right now I need to take it slow and let people help me...I told him i was and I am...trust me I am......my snake skin peeling is almost done ....talk about freaky side effects of being sick .....one heck of a way to get a spa peel ...hehehe..atleast thats what my co workers say...hope all is well with you all......well I better go ......taken enough of yall time...thanks again for all your prayers and well wishes......love ya all:w00t:

[elephant]

I was just asking about you on another thread. Nice to hear your lungs are improving! I agree if your still having joint pain, you probably aren't in remission yet. Thinking about you!

[LisaMarie]

Thanks Elephant.....I am slowly getting back on line...my first priority was getting home ...then back to work ...then caught up at work...so slowly but surely i reach my goals....may try church in the morning...see how i feel......hope all is well with you.....have a good night

[LisaMarie]

Ok guys I saw the ID doc...now I am also on acyclovir as a preventive for viral illness...I still have to wear a mask N95 type everywhere I go...still have no no clue what funky fungus is in my lungs but I keep getting better every day.....So now i take bactrim DS daily 1 tabe and acyclovir 400mg daily along with my other stuss...i get to decrease to 20 mg of pred on saturday.whoo hoo...in December I will start cellcept...so please pray it works...I am running out of options...I am still tired and fatigue and have joint pain and a head/jaw ache...but they want me on the minimal amount of pred for my lungs to heal right....I feel another loop in the roller coaster ride ...did i ever mention I hate roller coaster.....:predrage:....i always try to remember it could be worse...I do not think I am in remission yet and the thought of taking cytoxin just makes me cranky...but rituxan is not an option since i had such a severe reaction to it.....so yall wish me luck inthe next month...i see pulm again 12/2...the WEG doc 12/10 and get my trach scoped 12/22...so I will be a busy girl.....atleast I am lucky enought to have a job that works with me and a truly wonderful boss...Hope yall have a great weekend n that all is well with you!!!!!:biggrin1:

[Sangye]

Are you still on ctx? I was put on cellcept without the Wegs being under control and it didn't get me into remission. The Wegs continued to smolder. Unless your Wegs activity is very low already, they need to induce remission (or at least disease control) before using cellcept. It's not strong enough to do it.

[elephant]

I hope the Cellcept works for you. Glad you have a nice boss and good job. Keep plugging away, you will get there!

[LisaMarie]

Are you still on ctx? I was put on cellcept without the Wegs being under control and it didn't get me into remission. The Wegs continued to smolder. Unless your Wegs activity is very low already, they need to induce remission (or at least disease control) before using cellcept. It's not strong enough to do it.
we are not sure if the rituxan worked....so until i have some clearer lungs and some more recovery time ...and he mentioned trying cytoxin again ...i only had one dose prior to the rituxen.....and 2 weeks into the rituxen i started imuran....i felt like a max truck hit me each time i took the rituxen and worse after i started the imuran:crying:...then got that lovely pnuemonia with resp failure........so i am in a holding pattern...i do know that the more i decrease my pred the more i hurt and i have started to have ringing in my ears that comes and goes....so i see cytoxin in the near future....just wanna get to feeling better if possible and pray i do not react badly to the cellcept and cytoxin........

[Sangye]

I hope you can get on something that works well. Rtx makes me feel like a truck hit me, too, but it did get the Wegs under control. The truck part "only" lasted about 6 weeks each time I took it.

[elephant]

LIsaMarie, hoping you start to feel better soon. Cellcept might just work for you.

[LisaMarie]

read face book
Josh made it thru surgery and is peeing...his mom is so excited....she does have another prayer request...her nanny was in the ER this morning too....no details on that ...but lets keep sending good thoughts and prayers towards him and his family:biggrin1:

[Sangye]

Thanks so much, Lisa Marie. I've had Josh on my mind all day.

[jola57]

Thant is super news.