Big appointment today

[LisaMarie]

Ok guys keep me in your prayers...I go see the WG specialist today to review my echo ...get labs drawn and hopefully get a game plan....while I am there I will try to get an update on my Rituxan status...and try to not have to talk to the uncaring hateful nurse that I have to go thru to get to the Doc....it took her 4 days to return a call reference my nausea...ughhh....Will try to communicate in a proper way so they will listen....I am concerned about my echo changes and the fact that I am coughing up thick yellow crud, my nose is dry and crusty even with the rinses and my voice is starting to change....have dry eyes now...and my right jaw and ear are killing me...and last night my joints started aching ...ughhh...sorry to go on...Will keep yall posted

[andrew]

Yup! keep us posted. We're with you...even if you can't see us ;-)

[Hammy8241]

Go give them hell LisaMarie...you know you will enjoy it really.lol Good luck. Anyway a bigger challange awaits you upon your return....... getting that profile photo to upload.:)

[JanW]

Good luck, LisaMarie. Hope you get some answers.

[Lightwarrior]

Write down all your concerns on a pad of paper or notebook and check them off as you ask and get answers. I have found this helps. Make sure you give them every ache and pain. We are all with you, just imagine our group all standing behind you growling at the uncaring hateful nurse (lol) Let us know how things went. You are in my prayers.

[elephant]

We are here for you! Let us know how things are going!

[DEE]

good luck DEEx

[LisaMarie]

Write down all your concerns on a pad of paper or notebook and check them off as you ask and get answers. I have found this helps. Make sure you give them every ache and pain. We are all with you, just imagine our group all standing behind you growling at the uncaring hateful nurse (lol) Let us know how things went. You are in my prayers.I have a typed list
lol....and a typed list of meds...and an expand file with test result and all the insurance stuff....don't want to depend on my fuzzy
brain...lol....and being a nurse...i have a few choice words for that nurse and if i have my way...will not have to deal with her anymore...in the waiting room now thanks for all the support

[jola57]

Good luck LisaMarie, hope you get some good news.

[LisaMarie]

ok...it was a long informative as well as interesting visit...off methotrexate...will start iv cytoxin or rituxan the week of the 20th....increeased my pred to 60mg per day...from 20 mg per day....gave me a script for clonazpam for anxiety if i need it with the increase in pred:.will recheck echo is a year....not to concerned with the hypertrophy....more concerned with gettingWG treated...meth was not working and i got to many side effects from the small dose i was on....FYI you can not take bactrim with methotrexate...it causes toxicity and can kill u...i will now be calling my specialist when i have a cold.....thank God i did not start the bactrim.....nurse and i spoke we will see if it changes anything....and I can still do my florida escape...yeah....it may be my last escape for a while.....hope u all have a great weekend

[JanW]

I think the thing about mtx and bactrim is that you have to be very careful about spacing doses because it heightening the toxicity of the mtx..but so does alcohol for instance, and while some docs stick to a clear prohibition on alcohol others (like mine, do not). Same with NSAIDs. However, I do notice that mtx patients I see on the forums do not seem to be on bactrim as a preventative, the way that some on other immunosuppressives seem to be.

Like so many other things about wg, not all black and white!

I agree that you seemed to be having very severe side effects to a similar dosage of mtx to me, and one of the main reasons docs prescribe it is because it is generally so well tolerated, so something must be going on with your particular body's reaction to the drug. I hope ctx will get your wg under control, and quickly.

[DEE]

[QUOTE=LisaMarie;18985]ok...it was a long informative as well as interesting visit...off methotrexate...will start iv cytoxin or rituxan the week of the 20th....i
methotrexate did not work for me wg kept flaring moved onto tablet cxt daily taking time but things improving with hope of coming off it soon
take care and good luck DEEx

[elephant]

LIsamarie good luck to you, sleep well tonight.

[Sangye]

Just catching up on this thread. I'm glad to hear you have a new plan, Lisa Marie. I'm still hoping for you to get rtx, but ctx is not the end of the world if it works for you. (I think I hated it when people told me that, so it's okay if you want to throw a sock at your screen when you read it. :) )

My first local rheumy had the worst nurse. She wouldn't pass on messages and it nearly killed me a few times. I tried to appeal to her sense of compassion but that was highly unsuccessful. With the help of my therapist, I learned to direct the compassion towards myself and the nurse eased up a bit. It was never good or right, though. I was thrilled to fire both her and the rheumy when I started going to Mayo Arizona.

[LisaMarie]

Just catching up on this thread. I'm glad to hear you have a new plan, Lisa Marie. I'm still hoping for you to get rtx, but ctx is not the end of the world if it works for you. (I think I hated it when people told me that, so it's okay if you want to throw a sock at your screen when you read it. :) )

My first local rheumy had the worst nurse. She wouldn't pass on messages and it nearly killed me a few times. I tried to appeal to her sense of compassion but that was highly unsuccessful. With the help of my therapist, I learned to direct the compassion towards myself and the nurse eased up a bit. It was never good or right, though. I was thrilled to fire both her and the rheumy when I started going to Mayo Arizona.
Lol I have a sock monster at my house...so no sock throwing....I hate it that I will have to take ctx...but reality is i need remission yesterday...the left side of my face is swelling now sooo I will do what I am told for the most part....and chew on milk duds to allow my brain to catch up to my mouth...come on laugh...pic swollen jaws filled with chewy milk duds ...it's quite comical....I leave for florida in 2 days for a week to regenerate and change my hair doo....my hubby bought me a camo do rag....he hates short hair on girls...especially his wife...so i think this part is going to bu just as hard on him as it is on me...wish me luck on my new dooo...have a great week

[Mike]

Fingers crossed and prayers being said for you.

Traceys Dad

[Sangye]

You're doing great, Lisa Marie. You're going to feel better very soon, I just know it. :)