Rheumy visit: Here's what happened.

[HL in NY]

Well, Sjo-Guyes &Sjo-Girls,

Guess who's going to see her Rheumy for the second "Here's what your tests say-let's plan some treatment" visit tomorrow? 

Am I freaking out? Why, yes, Yes I am. 

Now, I know it could be worse. I've got a good clear Dx and my Rheumy is a smart-girl when it comes to Sjogren's. No "OH, you have joint pain? I've never heard of that with Sjogren's" crap. But still, Aahhhhhhhhh.

Since my first visit I did a Pred burst, and while I was really good when I was on it, I'm now off it and in PainLand again. (Note: Not as much fun as DisneyLand) And the Fatigue Fairy has been making extra visits to me, so I'm pretty wiped out most of the time.

I just want to be better and it freaks me out to have to rely on this one person to fix me. Is that crazy? Do you all get it? I hope I'm not just insane, and if I am, I blame the pain.

I will report back on what happens. When last we spoke, she was thinking either Plaquenil or Rituxan. I'm a Lymphoma survivor (because I know how to have a good time!) and that empties out some of her bag of tricks. I'm leaning towards Rituxan, because waiting 3-6 months for some relief just isn't moving me.

Thanks for listening,

Heather

[JannaLee]

Darling Heather!

The good news is your pain has not decreased your clever, witty, wry, amazing little self!

If you are half this sharp tomorrow...all will be well!

Your worries are valid, but remember if she doesn't get it right on the first try, you can always ask her to re-think!

Wishing you the very best!
Janna

[Chickpea]

Hi Heather

Of course you're worried!  So much depends on these widely spaced consultations with one person.  Luckily enough you've found a good one, or 'keeper' as they say here.  On the other hand it's nice not to add to the collection too quickly as many of us seem to collect 'ologists'.  (This comes from the heart:  I've just spent the best part of two days with new specialists and I'm exhausted.)

Have you written a list of questions and your symptom diary?  For me the most useful thing has been to select one question that I'd like the answer to, and decide that by the end of the consult I'll be satisfied if I have the answer to my burning query.  Somehow that takes some of the pressure off. 

I understand the meds are limited because of your treatment for Lymphoma, but not why it's an either/or for Rituxan and Plaquenil.  Did the rheumy explain this?  Many people take both and get different benefits from each one. Yes, Plaquenil can take 3-6 months to kick in but it's specific to some key SjS symptoms and works well for so many of us.

Let us know how it goes.

Thinking of you - Chickpea

ps Love the idea of being a 'Sjo-girl' - probably the nearest I'll get to the big lights!

[jonnell]

Good Luck Heather I hope you have a good Rhumy that is the key to sucess with this nasty disease.  Hugs and Kisses   Jonnell and Jenna

[HL in NY]

Thanks for the understanding. This is something that's so hard to explain to people. Either I'm not doing a good job of explaining it, or they just don't get it. And I really hate talking about myself when I'm less than happy, shall we say.

I understand the meds are limited because of your treatment for Lymphoma, but not why it's an either/or for Rituxan and Plaquenil.  Did the rheumy explain this?  Many people take both and get different benefits from each one. Yes, Plaquenil can take 3-6 months to kick in but it's specific to some key SjS symptoms and works well for so many of us.

Let us know how it goes.

Thinking of you - Chickpea

I know she's limited in the drugs she can use because many of the other treatments can actually cause Lymphoma, and we don't want that. I don't know why she was saying 'pick one'. I'll ask about that tomorrow. I haven't heard of anyone doing both Plaquenil & Rituxan, but I'm not against it if it will help. When I had Lymphona, I had surgery, chemo and radiation- just to be sure. 

Thanks for reminding me to print out my question list. It's a long one. (No surprise there)

HL

[KYMOM]

Heather, Good luck with your visit tomorrow and let us know how it goes. Roxanne

[lesmom]

Good luck today Heather- Can't wait to hear what the rheumy tells you! Sounds like you are a fighter and better ye you know that laughter IS the best medicine!
Hang in there and here's to us all feeling great,
Leslie

[HL in NY]

Well, I'm back. Man, am I tired.

The visit went well. Not "Whoo-hoo" well, but well.

She confirmed that both my anti-SSA & SSB counts were very high, and I definitely have Sjogren's. However, every time she say's that, you can see a thought bubble over her head saying "Lupus?". She doesn't think it's Lupus too, and in any case, she'd treat me just the same. My Kidney levels are good, and she's going to keep watching them every 3-4 weeks. She didn't test my Vit. D, but that will be in the next round of blood work.

On to the important part: Treatment! We're going for the two-fer! Plaquenil and Rituxan! (And the crowd goes wild) I'm getting the script for the Plaq filled now, and I see an Opti- eye doctor on Monday. I should have approval from my insurance and a date for my Rituxan infusion in a week. Yay. In the meantime, I'm going back on the Pred to take the pain/swelling down to something manageable. The plan is after the Rituxan, I won't need it and can step down then.

A word: I know Rituxan is a big gun. heck, it's a huge gun. But I've had it before (Lymphoma) and I believe it's the right drug for me. My life has been snatched away from me, and waiting 6 months or a year for the Plaq to maybe work is not something I'm willing to do when the Rituxan is here and available. I do know the risks- heck, I went into anaphylactic shock the first time I was on it. It's a huge MO-FO of a gun. But, it works and I'm willing to take the risks that come with it.

And the good news is that if there's any Lymphoma cells running unseen in my system, it will take those out too. 

Anyway, I'm not totally as chipper as I sound, but I'm happy there's a plan now. THanks for all the support and understanding.

Heather

[lesmom]

Good to have a game plan, Heather!
Sleep, hopefully will come better for you tonight.
I hope your reaction to the Rituxan isn't as severe this time around- anaphlatic shock is for the birds!
Good luck and keep us posted!
Leslie

[Chickpea]

Heather sweetie - it sounds like a really positive visit to your rheumy.  She's taking your illness seriously, working out a plan of action and taking your history into account.  Let's hope that this time they work out how to give you Rituxan without setting off such a reaction!

The Prednisolone should kick in pretty quickly and give you a break from the pain and swelling.  That should make you feel a whole lot better, and ready to face the rest of the treatment. 

It would be very surprising if you were as 'chipper' as you're sounding but we've all been there.  It's a rollercoaster of emotions when you get the diagnosis and then treatment really starts.  Relief, fear, exhaustion ... we've all been there.  And that's why we're here for you now.  Let us know how it goes, step by step and let us look after you.  In a few months time when the treatment is kicking in you'll be able to offer the same support to someone else.

Thinking of you - Chickpea

[irish]

Heather, You sound like you have things under control yourself plus you have one heck of a sense of humor---which is very necessary to endure.

I was going to post that the Rituxan sound good because of the attack it does on the B cells and it is also a treatment for the lymphoma but sounds like you have total control. Probably good to do both meds as you can have the Plaquenil in your system down the road after your body has recovered from the Rituxan.

My immunologist has been thinking the Rituxan for me as my antibodies are like beyond high for sjogrens, myasthenia gravis and hashimotos. But----I have severely low t-cells so he has to think about it for awhile. I just started my third brand of IVIG product with hopes that this will make my antibodies come down. I have a pretty limited life but still able to do some things but have to stay home much of the time and no social life. Let us know how the Rituxan works. Would also like to know how it affects your t-cells and b-cells. Like does it totally wipe out the b-cells. My immune system is still working cause I am still walking around but have had mycobacterium kansasii and more infections in the last 20 years than I care to remember. Good luck Irish

[HL in NY]

Thanks for the support Leslie, Chickpea & Irish. I sound good, but that's my coping mechanism- don't let them see you sweat.

I started on Plaquenil at dinner tonight. Instant heartburn! I have such a great life.  I know I really can't complain. I know many of you are in worst shape than I am. But I'm bumming. I'm sick of tired of doctor appointments, and tests, and feeling lousy.

I'm sick of being tired and tired of being sick!

I'm impatient to be feeling better. I'm not proud of that, but there it is. But I suspect some of you have some experience with that. 

[Chickpea]

We can all relate to that feeling, Heather.  Maybe we should all wear the T shirt that says:  I'm sick and tired of being sick and tired.

Thinking of you - Chickpea

[KYMOM]

Chickpea, Mass produce as a fund raiser.  Bet you'd sell out. Roxanne