Rituximab Round Two

[Sangye]

Sangye, My choice is the sugar free Jello Chocolate Pudding cups. Taste is not bad, only 60 calories and it actually makes me think I have eaten something I shouldn't.

Egads, I won't touch artificial sweeteners. At least the body knows what sugar is!

When I told them that my pred was pushed back up I heard one of the guys mutter "oh dear God no".

This totally cracked me up. Let's just say I'm glad I live alone and that dogs are the most forgiving creatures....

[jola57]

Sangye, I don't know how you do it. I just can't get further than 6/7, otherwise the pains sets in and I afraid of slipping back again. Good luck my friend to be totaly free.

[Sangye]

I think I'll be able to do it. The past few days (and still today) I've felt pretty lousy but I don't think it's due to Wegs. My spine is all torqued again and I see my chiropractor today. Once that's back to normal I'll have a better idea of what's going on. My Wegs predictors are not fired up.

It's weird-- I'm at this really low dose of pred but can hardly function due to damage (Wegs and complications), while other people are stuck at higher doses but can exercise and work. And there are the fortunate ones who are off all meds and can do anything they want! Amazing how different our lives are, even with the same (stinkin') disease.

[Lightwarrior]

I've moved from 30 of pred to 25mg, its been 8 days now and my joints took the drop worse this time. I did have less joint pain today (I have noticed that I usually have 3 to 4 days of joint pain with every pred reduction) I'm supposed to drop to 20 next week and then 1mg every 3 to 4 weeks after that. I have noticed more energy and not such a "heavy" feeling inside with each drop. I see an ENT for the first time next week since I still have some sinus involvment and voice gets hoarse with occasional stridor with exertion. I'm back at work only 1/2 days and they got me a motorized cart so I don't have to exert myself getting from one pod to the next. Taking a shower and walking any distance still creates trouble breathing, even though lungs are clear.

[Nancy]

Hi Sangye -
You know it is so good to have you here and available as the WEGS guru/nag.... I have reviewed the whole thread and am so VERY sorry that you ar having so many issues... You know I have been on the cytoxan so long - changed the last 2 motnhs to IV pulse dose - NOT impressed. Saw WEGS MD yesterday - no labs available - lab screwed up again.... I think I am positive - even weakly (intermittent bloody nare - always the right, lots of drainage, a few peticheal type rashes, fatigue and some scattered neuropathies and BAD sleep. Minimal coughing and no blood.
He discussed options - 1) continue IV cytoxan for thrid monthly dose and then every other month for the next 5 doses.... needless to say NOT impressed... 2. Stay on current meds ( 10mg Pred and Calcium, Vit D, Bactrim, etc and just raise the Pred if "Flares" occur, or 3) Start the same med you have been on - a dose two weeks apart... if the insurance will cover... I voted # 3 and will find out at some time in the future... Your experiences suck - there is just no other way around it...
I just had my 46th birthday - listened to my oldest daughter talk about she was too young to have anything go wrong with her bosy - not acceptable - gently reminded her that I was only 6 years older when I got the Dx for WEGS... I also agree with you - it makes me want to chew glass when people say - Oh it's good that things are going well - you look tired - but it is just the ways things are today... I started a new job - trial to see if I can work - fatigue going home has been kind of interesting...but so far do able... The previous docs I worked with were so glad when I quit - they just did not understand that I could look okay and do 10-12 hrs of work, but it was not in my best interest... I feel like I got tossed out with the garbage...and I have always been a pretty good practitioner.. I do not know about you - but the idea of entering into a relationship with all this "stuff with the WEGS" just doesn't seem managable.. I was married after my DX and have been divorced about 3 years - my husband told me he was no longer attracted to me because how the disease has changed my body... Acknowledging that there was nothing that I could do about it... I left due to his heavy drinking - I do not drink.. I am sorry to lay this out like a death eaters banquet - but so many things seem to be conparable and different as well...
I wish you the best with your energies and suggest that you might consider painting or getting pictures of some of those beautiful Arizona hills/light to remind you of the energy in that place... I have enjoyed the dog stories - will have to find a way to post by menagerie... I feel like I have a "pound" for animals here at home. For a quick funny - the electric man has to read the meter in the backyard monthly - he gets one of the family to avoid any issues with thedogs ( mostly the 250+ lb mastiff)... anyway - he had a new guy and asked if it was okay to go around, I held the dogs inside. He then asked the guy with him - "what do you see?" The new guy looked at the back of the house and said " a cat door and a dog door". The experienced reader goes " no, a dog door and a bigger dog door". He then asked if the new guy could meet the dogs out front. When I ket Aslan out ( very much like my avatar) - the guy ran to his truck and crawled in... said - "that is not a dog, it is a lion". he slowly came out and I intriduced him - but cautioned to continue to ask for assistance...
Well so sorry to take up your time... I appreciate the board - lots of thoughts and input... I will continue to send you good energies for recovery and strength... Nancy

[jola57]

Hi Nancy, thanks for sharing. It is so good to be able to say what ails us and not be judged. No matter how sympathetic our families are, unless you lived with this dreaded disese, you just can't know how we feel. My kids are gone on their own, my husband has his mountains and I have my work. Without knowing that I have to get up and go to work, deal with people, I would mold in the house. I feel unatractive (look good and hard in the mirror yesterday) and I can't change the way I look now, maybe in the future, so word can't hurt me any more. I take pictures of myself and keep looking at the way I am and it seems to work. I accept myself as I am now not what I used to be. )

[elephant]

Nancy, I understand what your going through. Some day you will find someone who loves you for you! You will go back to work someday, it takes time. Thanks for sharing, you will get better! I know I have aged because of this disease...I use to always look young for my age. I have aged more in the last two years!

[jola57]

How true elephant. I was 49 but was constantly told I look like 35. Ha nobody will say that now, some days I look as old as my Mom (77), I went with my Mom to see the a Consul General and he asked "who is your friend?", when my Mom said it is my daughter I could see his double take. It would be funny if it wasn't so sad.

[Sangye]

Nancy, I'm so sorry for what you're going through. I can't imagine how much harder it is to have employers treat you poorly and also have to be concerned about relationships. (I'm a Buddhist nun, so the latter is thankfully not an issue. I'd be a mess if it were, though-- I can tell you that.) Rejection and abandonment are two of the worst types of pain to experience. It's a primal need to be accepted. I'm wondering if you see a therapist. Personally I couldn't get through this without it, especially those first 3 years. Most of my therapy has centered around grief and loss-- prior issues that have become highlighted by this disease.

I turned 46 in December and was also someone who always looked much younger. I feel like I look much older mostly because of the huge weight gain, but others tell me I still look young for my age. I think it's because I laugh a lot. About 8 months after I was dx'ed, I was walking across the room in our temple--extremely weak, dragging an oxygen tank, wearing full-length anti-embolism stockings. I could feel everyone's eyes on me since it was one of my first days back there since dx. I could feel their sorrow and disbelief (I had been very strong, fit and vivacious). I had to cut the tension so I announced, "Just a little preview of what I'll be looking like when I'm 90. In case you were wondering." We all laughed. The pain is there and it's really big pain, but I try to balance it with laughter when I can. And I avoid mirrors like the plague.

[jola57]

I did the mirror avoidance for a long time but now I take pictures (just started about 2 months ago) and look at them often. Same with mirrors - it desensetizes me to the way I look. At least its worth a try, if they say that violent video games desensitize kids to violence maybe my mug shots will do them same. I think it is working, I have been to couple of gatherings now with as many as 300 people and I felt fine, even with people that have not seen me in a while. Surprisingly, when I look at myself in the mirror I am far pretier than when i take a picture. That is one question for psychology. Sheesh if only I could stop eating, i am back to 94 - ugh