Rituxan Update

[Chickpea]

Hi Lauren

It's good to hear that you had a better day yesterday.  And you had a fun evening too!  A girl definitely has to get out once in a while - even if there's a price to pay.

Hope you're feeling good today.

Thinking of you - Chickpea

[gurs]

Chickpea,

Im just on plaquenil..20mg prednisone..over the years tried most all of them. I did good on Imuran for a bit, until I ended up with candida in my esophagus and they stopped me. When I tried to take it again, I got violently ill? My body cant take much. Ever since my hysterectomy 2 years ago, (now menopause) things just got so much worse. I also have next to nill T-cells and have major systemic yeast all the time. I tried some IVIG infusions, but I had some terrible side effects. I used to be able to take some vicoprofen for pain, but now, my body wont tolerate any type of pain medication. I just shake and get dizzy? I remember in the hospital after my hysterectomy, they were giving me some pain med and it didnt help at all. I think they thought I was a druggie..oh well.
My rheumy thinks I may have some scleroderma coming out, something vascular is going on. I have purple-reddish elbows with sores on them, knees too.. and everytime I touch something, I bruise..doesnt feel like my blood is flowing right at all.. I guess the cytoxan works well for vasculitis. Im thinking about doing some type of biopsy to confirm. My doc is afraid to cut my skin, fearing it wont heal right, especially on the elbow?? Going to see her next week to see what's next.

lauren, funny you mentioned the lower back pain. Mine just started up again. Thank god for steriods. Going to try and take more to see if this helps. I guess our body
is reacting to the change from the rituxan. Hope its eases up.

[wordnerd]

Today is just not a good day.  I'm tapering back down to my normal dose of prednisone and its making me feel all depressed and weepy.  Plus I definitely over did it going to see a movie as soon as I felt better for one day over the weekend.  When will I learn?

Also I started my new diet today which I'm sure isn't helping my mood or energy level.

I'm not sure I'm ready to tapper back down off the prednisone anyway from the Rituxan reaction.  My back is starting to hurt again and I basically feel like I have the flu again.  Sigh.  I hate feeling like this.  I want to feel like my normal upbeat can deal with anything life throws my way self. 

[gurs]

Lauren,

Funny, we seem to be having the same side effects..my back is killing me again and my fatigue/flu-like feeling is the worse ever!!! The extra prednisone doesnt seem to be helping either. When I up my dose, i get jittery.
I see my rheumy on monday, curious to see what she has to say, other than it could be a side effect? Just hope it gets better in time.

good luck to you though..

[irish]

I say we all dress up and act like we are the cats pajamas. We will go out to eat and then to a movie and stay out til dawn and we WILL NOT become pooped, painful or pukey. Anyone else want to go. I'm having lobster and baked potatoes!!!
Enough of this being sick and being a recluse---it gets old, doesn't it. Plus---no one understands except another AI friend and heavens knows we have enough of these on this site!!!! Irish

[wordnerd]

Well apparently I'm still having a reaction to the Rituxan.  I was at my new internist again today for a follow up.  I  was running a low grade fever which is SUPER unusual for me.  Plus all my skin has been bright red.  And on the way home my face started getting really numb.  My eyes are so numb it feels so weird when I blink.  Waiting for my rheumy to call me back.  I'm thinking another bump of prednisone might be in order if I'm going to be in any shape to get another infusion this coming Wednesday.  Blah.

In other news I decided I really need to cut back on all of my projects and try to rest more.  I've basically been wearing myself out in some crazy effort to prove I can do at least as much as a healthy person.  I've working myself into a super big flare and I need to stop.  So I'm trying to figure out how to get out of some commitments.

Also my caregiver Sarina is leaving.  She got an amazing career opportunity 6 hours away.  I am really happy for her, but now not only am I loosing my best friend, but I have to try and find a replacement caregiver.



-Lauren

UPDATE:  Spoke to my doctor and he said it was a really good thing I called and put me on a whole bunch more prednisone to calm down this adverse reaction.  He thinks this will calm things down a lot... just in time for Wednesday's infusion...

[gurs]

Lauren,

Im still having horrible lower back pain..feels like my entire spine is inflammed. My fatigue is still pretty bad. So your doc thinks you should get
another infusion? I would be a bit concerned about that...seems like your body is reacting big time to the rituxan, but then again, it's a chemo medication
so I guess side effects can happen. I had rituxan before but dont remember having the back pain???uhmmm. Ive been taking more and more prednisone as well.

Let us know how your doing ok?

Gursie

[wordnerd]

Hiya Gurs,

Sorry your still hurting so much!  Yeah he didn't say anything about canceling my next infusion.  I really want to go ahead with it and get it over with.  But yeah my whole immune system seems to be freaking out over it.  I'm just exhausted today.  Didn't take my temp yet but I've got chills so...  hopefully the prednisone bump will do the trick too.

My awesome new internist did a bunch of labs also just in case there's an infection or something too.  God I hope not!

-Lauren

[gurs]

We'll, I dont blame you. I just wanted my 2nd infusion over with too. Hopefully, our bodies are just adjusting to the change. Just wish this fatigue and back pain would go away.
Will ask my rheumy on monday, but Im sure she will just tell me to take more prednisone.  Good luck to you..let us know how it goes.

Gursie

[wordnerd]

Just wanted to let you all know that the extra Prednisone did the trick and I am doing much much better.  Just in time for my next infusion on Wed.  I'm getting nervous as it approaches.  Afraid that I'll have breathing problems again.

In the meantime, I'm trying to not overdo it now that I'm just feeling better.  I came up with this the other day and I keep reading it over and over to remind myself: Opportunities will still be there when I'm better & my creativity and potential aren't going away if I take a break for a while. 

It's my new mantra. 

I'll let you know how Wednesday goes.  I'll probably bring my laptop again, so I can even post during the infusion lol

I also just got a new HD Flip Cam (a tiny HD camcorder) and was thinking of bringing it with me to the infusion to document the experience for my blog.  What do you think?

Love you all!  *hugs*

-Lauren

[Chickpea]

Hi Lauren

So good to hear that the prednisolone has made a difference. 

I love the new mantra - there are days when it's hard to remember that but it's so good to be reminded that there is a light at the end of the tunnel. 

Definitely film the 'infusion experience' and let us all share via your blog.

Thinking of you - Chickpea

Gursie - let us know how things go at the rheumy tomorrow.  I had a month of the most terrible lower back/hip pain which nothing could help - osteopathy, acupuncture, extra morphine etc etc - and then it gradually faded until it was 'bearable'.  Then something new arrived.  Ah, the gift that keeps on giving as Pooh always says!

Hope you begin to feel a little better soon.  Or a lot better!

Take care - Chickpea

[wordnerd]

I'm tapering the prednisone again and subsequently had a fever again this afternoon.  I suppose I should call my rheumy tomorrow to be sure I should be tapering if I keep spiking a fever and whether its okay to go ahead with the next infusion on Wed...

Does anyone know if it matters if you are still having a reaction to your last infusion when you get the next one?

I can't believe its nearly been two weeks and its only a little over 24 hours away again.  I'm really nervous all over again.  But I just want to get it over with.

Also... today I placed an ad to find someone to replace my caregiver Sarina.  I got a whole bunch of applicants to sift through already.  I can't believe how many in such a short time but I suppose there are a lot of people looking for jobs right now and working as a caregiver for someone young like me is a pretty unique opportunity and rather desirable.

I'll let you know how it all goes of course

-Lauren

[gurs]

I saw my rheumy yesterday..asked her about the back pain happening after the rituxan and she said that when you get a very high dose
of sole medrol (150mg) before the infusion, it really shocks your body a bit, and then you come down after its worn off. She also did a lumber xray
and found alot of arthritits in my spine...I have alot of bone/disc/spurs in my thoracic as well from an MRI I had done a few months ago. Not a happy spine!
I will be anxious to see what my labs look like next week.


She did say that there a drug called Savella that works great for all types of pain, including neuropathy and alot of her patients just love it.
She gave me a sample, not sure when/if I will try it.

Lauren, hope you will make it for your 2nd infusion. I felt very sick when I got my 2nd as well. I guess your doc would know best. Hope your feeling
better soon!

Gursie

[wordnerd]

So I'm in the middle of my second infusion right now...  On oxygen which is making me feel soooo dry but well... I'll deal obviously.  I'm also on my 3rd IV already.  The first one stopped working a few hours in.  The second didn't work at all.  3rd times the charm?

Got a really bad headache which got better when they turned up the oxygen.  Low oxygen during it seems to be the biggest problem for me so far.  And right now I just am sweating all over and feel all icky.  Blah.

Been going for 5 hours already but it looks like its going to be a few more at least.  I'll let know know how ?I'm feeling later.

<3 Lauren

[Katybarstool]

Hi Lauren

Keep your chin up girl. You've been through far worse than this in the past AND survived it, so although it's unpleasant, it will pass.

Have you got anything to read with you? Do you ever read Jodi Picault? I just love her books. I'm guessing that you have read some of them too? What's your favourite?

Hugs for you, specialy lady.

Kathyx