Rituxan in my future!

[jmmilliorn]

Quick update on my progress since rtx infusions. I'm about 6 weeks post rtx (if you count from the first infusion), and I'm feeling really good! Pred is down to 15mg, from 20. I will reduce to 12.5 later this week. Still have low energy, but not nearly as bad as it was before treatment - not sure if the low energy levels are related to wg or to the pred taper. My wg ear is protesting a tiny bit too - ear drum is thumping a little, but again....it's not nearly as bad as it was pre-treatment. Best of all, my head is clear, and I don't feel like I'm drunk all the time!!

Good for you! Our RTX experiences are about the same. I'm gradually getting more strength and being less short of breath. Very slow but steady progress. Now on 10mg pred. Should be starting Aza orally in Aug. Getting my blood clot checked next week.

[delorisdoe]

That's excellent, Chris! It's a little more than 8 weeks since my first rtx treatment, and I am definitely feeling better. Almost no pain, more energy, head clearer. I still get some numbness/stiffness in my feet, but the stiffness goes away after I've been up for a few minutes. Overall, I feel great compared to what I did right before I started the rtx.

I'll be talking to my doc next week (did bloodwork this week) and see if she wants me to start tapering either the mtx or the pred. Since I'm at only 5mg pred, I suspect we will do the mtx taper first. Either way, I'll be happy to be lowering my dosage of SOMETHING. LOL

progress...i am happy for you.

[onatreetop]

I felt pretty good after my 1st infusion. The 2nd one knocked me down pretty badly. Slept 2 days after then got off my butt and started moving. doc said that with RA i can get the infusion every 6 monthes but with WG insurance will allow every 4monthes. We are shooting for 6 monthes but can bumb it up if nessc.
Improvements in breathing althought pulm funtion test say its the same. modrel is down to 16mgs now. feeling more pain in the joints and swelling in hands is not great but ........i have managed to loss some weight and dont tire as easy as before. So ............I have to say it is worth it. head is clear but not right yet. still have way to many elderly moments, no effience. have found myself craving caffine during the day.
Oh yeah..... The cost for the perscription is 40.00 and the office visit is 30.00. So it is 70.00 for me to get an infusion. Again thank you Aetna and medco. A bit of thinning hair but not sure if its the methotrexate or rituxin or the combo. asked about stopping the methotrexate and doc said not yet. modrel we can lower slowly but they want to wait on the methotrexate. Been trying to findout what else i can cut back on. samples from the docs have been keeping me going. again another thankful happening.

[elephant]

Sounds like your getting better Onatreetop, it is nice to hear that. Your lung function will improve, give it more time. It took a year for my lungs to improve.

[Tippon]

Thanks guys, this is a really interesting thread

I'm in hospital at the moment for plasma exchange, and the doctors are seeing me tomorrow to explain everything, then giving me the first infusion on Friday. Hopefully, I'm only going to get the good side effects

[Chris G]

I'm crossing fingers for you tippon!
How's it going now onatreetop? What's modrel? Is that your steroid?

I'm still struggling with a little setback. I'm now more than 8 weeks post rtx, and still having a bit of mild trach stenosis (cough, and voice affected). This began when I was tapering pred......was about to go from 15mg down to 12.5, and then developed a terrible cough & began losing my voice (no, it's not the lungs). I halted the taper, and stayed at 15mg for an extra few days, and the cough just got worse. So, I had to INCREASE the pred back to 17.5mg. After about 1 week at 17.5 the cough has improved drastically - which is great, but also BAD! (I'm also still on 20mg mtx weekly). I'm starting to lose hope.

I will be calling my doc to report that the cough has improved. I will also ask about blood work. Does anyone have any thoughts or suggestions about the brick wall I seem to have crashed into???

[Sangye]

I forget if you have tracheal stenosis, Chris. It sounds like an ENT needs to take a look in there and see how things look. I hope it'll be an easy fix and you can start tapering again soon. Don't lose hope-- there's a solution, for sure.

[JanW]

Did they tell you that meds would help your stenosis, Chris? In my case they wouldn't, what worked was surgery -- but mine involved only the first two rings of the trachea and the entire subglottis.

[Chris G]

I see my ENT on the 29th. The slight increase in pred has greatly improved my symptoms - so of course, to take a look in there now would probably be a waste of time (and $). If it returns when I resume the pred taper, I'll have them squeeze me in for a scope. Haven't talked to my rheumy yet, so I don't know how long I'll be holding at 17.5 mg pred.

To make matters worse, I've felt like real crap for the last 2 days. Sinus pressure & pressure in my head, light headedness, dizziness, trouble concentrating, etc. I've been holding off on reporting this to my rheumy because Monday night was my regular night to poison myself (mtx). Never sure if these symptoms are mtx or wg.

[vdub]

my regular night to poison myself (mtx). Never sure if these symptoms are mtx or wg

"Your regular night to poison yourself" <snicker>

I have the same problem figuring out what is causing what issue. I prefer to blame it on the mtx and to live in my own little virtual reality where the wegs is quietly asleep. I hope it's not an illusion.