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View Full Version : Rituxan in my future!



Chris G
04-22-2011, 09:10 AM
I talked to my doc a couple of hours ago, and I'll be making the leap to Rituxan! I've been on mtx for 5.5 months, 20mg pred, and we recently added Imuran, because we can't get the pred below 20mg without the wheels falling off! The Imuran was giving me horrible stomach upset.....crazy gassiness (NOT ATTRACTIVE!!):blushing:

I'm excited, and little nervous. I guess mostly I'm worried about side effects, but I haven't really heard of many from this group (aside from Sangye......and it sounds like hers is a very unusual case).

Aside from infusion reaction, and the possibility of infections, and do I have anything else to worry about?

pberggren1
04-22-2011, 11:41 AM
That is good new Chris. Do you have private insurance that will cover it?

drz
04-22-2011, 12:22 PM
I talked to my doc a couple of hours ago, and I'll be making the leap to Rituxan! I've been on mtx for 5.5 months, 20mg pred, and we recently added Imuran, because we can't get the pred below 20mg without the wheels falling off! The Imuran was giving me horrible stomach upset.....crazy gassiness (NOT ATTRACTIVE!!):blushing:

I'm excited, and little nervous. I guess mostly I'm worried about side effects, but I haven't really heard of many from this group (aside from Sangye......and it sounds like hers is a very unusual case).

Aside from infusion reaction, and the possibility of infections, and do I have anything else to worry about?

Most people do fine with RTX IVs. Any serious problem generally shows quickly and they monitor you very closely the first time for any unusual reaction so risks are minimal. The results are generally more variable from super fantastic and why didn't we do this sooner to when will the RTX ever kick in so I feel better. Lets hope you are in the first group.

Sangye
04-22-2011, 01:43 PM
ChrisG, glad to hear you're gonna try rtx. The main short-term concerns are what you said-- infusion reactions and infection. I don't know the statistics on how many people have temporary, debilitating side effects like me, but I do think it's very low. In this group I think there has only been one or two other members with that.

ArlaMo
04-22-2011, 10:53 PM
Just had my 2nd on Wednesday, and other than being pretty tired that day and feeling puffy (solumedrol, I'm sure) I haven't had any other reactions. Hope it goes as well for you!!!

Chris G
04-22-2011, 11:52 PM
That is good new Chris. Do you have private insurance that will cover it?

Yes, I do have insurance. I still feel a bit of concern about getting approval. Worse - I have a 20% co-pay which may put us in the poor house:ohmy:. I'm not sure where I stand on the annual out-of-pocket maximum, but I know it hasn't been satisfied yet this year.

ScreaminMeanie
04-23-2011, 02:07 AM
Wonderful news! I'm still waiting to hear what my insurance company's response is. Hope that getting FDA approval on the same day my rheumy put in the request will have some positive results.

Do you know when your first infusion will be yet?

Sangye
04-23-2011, 02:21 AM
ChrisG, do you know if you'll be doing 2 infusions or 4? I hope you don't have to pay 20% of the costs. That's a lot of money. :sad:

Kami
04-23-2011, 03:33 AM
Hi. I have been reading posts since being diagnosed in December of 2009 but have never replied but I would just like to say that I was just approved by my insurance company for Rituxan as well. I am also excited but nervous. I don't care much for the "medical" aspect of things as it is but it sounds like generally speaking it isn't too bad. I will have to pay $5000 for my treatment after the insurance company pays their part, which is a lot for me. I guess you can't put a price on living! Thanks for keeping me sane thru this whole ordeal! Kami

Chris G
04-23-2011, 06:36 AM
My doctor said it should be set up in a week or two. I'll be hearing from the nurses about scheduling, next week. I do not know whether it will be 2 or 4 infusions. Sangye - maybe you can give me more info on this.......do they use 2 vs. 4 for people with less organ involvement? Or is it simply a matter of doctor's preference. What are the pro's and con's of 2 vs. 4?

Sangye
04-23-2011, 06:42 AM
Dr Seo told me the decision to use 2 or 4 infusions has been based on which center is doing the infusion. It sounds a little crazy, but he said some centers (eg Mayo) have just always done 2 while others (eg JHU) have always done 4. So they each kept doing what they'd always done!

I did 2 rounds of 4 infusions in the past, but this February he decided I would do only 2. He said there is more research now that show that 2 infusions are as effective as 4. Also, since I have terrible side effects from it, he thought I might do better getting half the dose. I did do better (it was still pretty awful) but I have my doubts as to whether it worked as well. I don't think you should extrapolate from my experience, though.

Kami
04-23-2011, 06:54 AM
My first infusion will be on May 4th so I have no personal experience with it yet but my doctor told me that I would have the same amount of medication in either 2 infusions 2 wks apart or 4 infusions 1 wk apart and he said that the 4 times is easier on you for side effects, that was his reasoning. I can see where that would make a difference on the center as far as scheduling and availability too.

Sangye
04-23-2011, 06:58 AM
It's not correct that the total dose is the same. Each infusion is based on your weight. They can't give you twice as much rtx in one dose. Maybe what he meant was that the effectiveness of the drug is the same.

Most people don't have side effects beyond a little fatigue the day of the infusion. Very few people (I am one) have debilitating weakness that begins with the first infusion and increases with each consecutive infusion. It usually goes away 6 weeks after the first infusion. Four infusions were way more debilitating than 2 for me.

ScreaminMeanie
04-23-2011, 07:43 AM
I'm curious about that, also. My rheumy believes in the 4-treatment regimen over the 2. The only downside for me is the two extra days of leave time I'll have to burn, when my leave balance has already dwindled pretty low.

(In case that sounds like a non-issue to some, where I work, running out of leave can be grounds for termination. "Can be." Not "is." But why take chances? ;) )

drz
04-23-2011, 08:12 AM
Yes, I do have insurance. I still feel a bit of concern about getting approval. Worse - I have a 20% co-pay which may put us in the poor house:ohmy:. I'm not sure where I stand on the annual out-of-pocket maximum, but I know it hasn't been satisfied yet this year.

With a 20% co-pay and RTX treatment i am betting you will make it pretty soon. Hope it isn't too high.
Happy Easter weekend.

ScreaminMeanie
04-23-2011, 08:19 AM
I know what you mean, drz! I'm actually debating whether to do the treatments before July 1 (beginning of new fiscal year) so that I only have to shell out the remaining out of pocket for this year or wait until after July 1 so that I get one huge bill at the beginning of the year, have all year to pay it off, and most everything else is free for the rest of the year. Either way, I'll almost certainly end up meeting my out of pocket expenses for both years, so the money WILL be spent. It's just a matter of WHEN. LOL

drz
04-23-2011, 08:27 AM
I'm curious about that, also. My rheumy believes in the 4-treatment regimen over the 2. The only downside for me is the two extra days of leave time I'll have to burn, when my leave balance has already dwindled pretty low.

(In case that sounds like a non-issue to some, where I work, running out of leave can be grounds for termination. "Can be." Not "is." But why take chances? ;) )
I think the preference depends upon where they trained and what protocol happen to evolve at that place. Near as I can tell there is no research evidence to prove or disprove one protocol is more effective than the other, so it is the doctor and patient's call, or unfortunately in some cases a bureaucrat somewhere that doesn't know any thing at all about what you need or want.

pberggren1
04-23-2011, 09:13 AM
Man oh Man! 20% is a lot to pat for rtx.

ScreaminMeanie
04-23-2011, 10:17 AM
Man oh Man! 20% is a lot to pat for rtx.

No kidding! Chances are pretty good any policy's out of pocket expense is less than the 20%.

vdub
04-23-2011, 11:09 AM
I'm retired military (USAF) and most people think we have a free ride on medical. Not so! I pay 20% of all my expenses. So far, it hasn't been too bad because I pay 20% of what the insurance company knocks it down to. Hopefully, that will be the same with you, i.e., the insurance company knocks it down to x dollars that they have agreed upon and then you pay 20% of that. It's a lot more palatable. (BTW, we (retired mil) get zero dental, optical or hearing.)

Best of luck with rtx!

pberggren1
04-23-2011, 01:43 PM
I'm retired military (USAF) and most people think we have a free ride on medical. Not so! I pay 20% of all my expenses. So far, it hasn't been too bad because I pay 20% of what the insurance company knocks it down to. Hopefully, that will be the same with you, i.e., the insurance company knocks it down to x dollars that they have agreed upon and then you pay 20% of that. It's a lot more palatable. (BTW, we (retired mil) get zero dental, optical or hearing.)

Best of luck with rtx!

That certainly sucks vdub! You guys should have everything covered 100%.

Chris G
04-23-2011, 11:31 PM
Since we're on the topic of money.........for those of you who've had it, how much one round of rtx ? I've been assuming it will be about $10,000. Am I close?

Sangye
04-24-2011, 01:21 AM
Each infusion costs about $10,000. One round is either 2 infusions or 4.

ScreaminMeanie
04-24-2011, 01:34 AM
That's a lot better than I thought. When I first checked on it almost a year ago, the medication alone, per infusion, was about $10K. At least, that's how I interpreted what I read at the time - I could have been totally wrong and the $10K was for the whole series of infusions. That didn't include the cost of the procedure, which was estimated to be anywhere from $1200 each time to $5000 each time. So I've been estimating $42,000 - $60,000 for one treatment (2 or 4 infusions). $10-12K for one treatment sounds a whole lot better!

And 20% of that is totally doable. But it's less than my annual out-of-pocket max, so I might want to reconsider waiting until after my next policy fiscal year begins and get it in this year.......

Sangye
04-24-2011, 01:35 AM
We posted at the same time....

drz
04-24-2011, 01:35 AM
Since we're on the topic of money.........for those of you who've had it, how much one round of rtx ? I've been assuming it will be about $10,000. Am I close?

Depends upon your facility and your insurance contract but that sounds like an average estimate.

Kami
04-24-2011, 03:33 AM
Mine is going to be $7375 for each and I have to have 4. That's just the rituxan, nothing else that they give you or the room.

pberggren1
04-24-2011, 03:44 AM
The cost to my province just for the drug for 4 infusions at 700mg each is 14 grand which I am trying to have them fully fund for me.

ScreaminMeanie
04-24-2011, 06:05 AM
Each infusion costs about $10,000. One round is either 2 infusions or 4.

OK, I totally misread this the first time! This is about what I originally thought, in which case 20% is a LOT.

Sangye
04-24-2011, 06:56 AM
Yes, it's a huge amount of money. And you might need to do repeat rounds on a regular basis. I don't know the statistics (maybe there aren't any yet) for how many people go into lasting remission after just one round. I do know there's no way of knowing ahead of time as it seems to be trial and error.

ScreaminMeanie
04-24-2011, 07:16 AM
It's a little daunting, however you look at it. Since I seem to be meeting my out of pocket maximums every year, I don't think it matters whether I do it this fiscal year or next fiscal year. I have an event at my house the first weekend in June every year that takes up several weeks worth of "spoons," but it's the most fun thing I do, so I don't want to screw it up for myself - and I can't cancel because it's been in planning since June of last year, and several dozen people all over the country have already made plans to be here. I feel like I should do the RTX either as far in advance as possible, or wait until afterwards. Not knowing yet how the RTX will affect me, I kind of feel like I should wait until afterwards.

Sangye
04-24-2011, 09:17 AM
I understand your reasoning, but if you need rtx it means you have quite active Wegs. How can you wait several months to treat it? If you started next week it would give you 6 weeks before the event, so even if you had the debilitating side effects you'd likely be over it by then. What does your doctor say?

ScreaminMeanie
04-24-2011, 10:02 AM
I understand your reasoning, but if you need rtx it means you have quite active Wegs. How can you wait several months to treat it? If you started next week it would give you 6 weeks before the event, so even if you had the debilitating side effects you'd likely be over it by then. What does your doctor say?

That was the one thing I didn't say in my previous post - if my doc can get it approved through the insurance so I start within the next couple of weeks, I'll go ahead and do it right away. (She didn't seem to think that would be the case, but I'm hoping she's wrong. She's had more way experience dealing with insurance companies than I have, however - especially wrt rtx, so I'm not holding my breath that it will happen that quickly.) I've got nothing life-threatening going on right now, and I would certainly like to keep it that way. The arthritis is not backing off, and I've developed a couple of new lesions. The lesions seem to be responding to the switch from oral to injectable mtx, so far (they're better, but not completely healed), but the arthritis doesn't. Heaven knows I don't want it to get any worse!

Sangye
04-24-2011, 10:05 AM
Gotcha. It's always a guessing game with Wegs. :rolleyes1:

Kokiness
04-24-2011, 02:28 PM
Hey Chris; I have been on Ratuxin for a eight months now. I received two infussions two weeks apart, then repeated after six months. It went really good for me but I know everyone has a different side affects, for me I had restless legs, and trouble sleeping. But of my biggest problems is I have extreme pain in my hips and knees, and they don't have a clue as to why Im having this problem. As for remission everyone is different. My Doctor hopes to have my weggners under controll after a few years. Only time will tell. My deductable is $2000. thats not bad I'm greatful for my insurance Thank You Starbucks for the Great Insurance you provide. Good Luck it gets better. Jodi

pberggren1
04-24-2011, 03:55 PM
Welcome to the Forum Jodi. Idaho is a beautiful state.

Sangye
04-24-2011, 11:33 PM
Hi Jodi, welcome to the group. Extreme joint pain like you're having is often a sign of active Wegener's. I wonder if your docs know that.

vdub
04-25-2011, 12:15 AM
restless legs, and trouble sleeping. But of my biggest problems is I have extreme pain in my hips and knees
Hmmmm.... Disturbing.... I have had restless legs for years -- rather annoying. But the joint pain is my current big issue. Last night was terrible. Both joints and primary muscles just ache. Shoulder, biceps, elbow, hips, thighs, and knees. The pain is quite bad. Bad enough that I couldn't sleep last night. Theoretically, I'm supposed to be going into remission. I'm on 25mg mtx and don't see the doc until June. But he gets blood reports every 2 weeks - I don't see anything in the blood reports that look bad to me.

Does anyone know if the mtx would be causing the aches and pains or is it active wg (errrr, gpa)?

Chris G
04-25-2011, 12:17 AM
OMG, so my estimate of $10k, will become $20 to $40k depending upon whether I have 2 or 4 infusions? I thought $10k would cover one whole round.

Sangye
04-25-2011, 12:25 AM
Each infusion costs about $10,000 (including drugs and infusion center cost). One round is 2 or 4 infusions. So one round will cost $20,000 or $40,000.

Kami
04-25-2011, 01:43 AM
I am a single mom and my daughter graduates from high school May 29th and the calendar is so full of events thru August because she is involved in everything (which is good). I have a party planned at my house with 300 people coming to celebrate. There is no good time to be sick or get treatment, I was really hoping to stay in remission until at least Sept 3rd when she left for college but you just can't plan these things. It will all work out, not sure how, but it will. :unsure:

Chris G
04-25-2011, 02:27 AM
Restless legs - terrific......something else to look forward to. LOL. I've decided I'm not going to worry about it anymore. I've made the decision to go for rtx, and I feel good about it! Except of course the 20% co-pay! But my out-of-pocket max is $2,000, so I won't feel the full 20%. Getting approved will be the next little hurdle. I hope to hear from someone about it this week.

DEE
04-25-2011, 04:02 AM
It went really good for me but I know everyone has a different side affects, for me I had restless legs, and trouble sleeping. But of my biggest problems is I have extreme pain in my hips and knees, and they don't have a clue as to why Im having this problem.
I have had restless legs and trouble sleeping more so since tappering preds but have always had hip and knee pain to various degrees since before dxt.
We have not figured out why ?

Sangye
04-25-2011, 08:24 AM
I have restless legs and it sometimes interrupts my sleep. ChrisG, if that's the worst side effect you get from rtx I'd say count your blessings! I haven't heard of anyone else complaining about it, so it might not even be a common one.

ScreaminMeanie
04-25-2011, 08:49 AM
I already have restless legs.....hope this doesn't make it worse!

ArlaMo
04-25-2011, 09:09 AM
I've had restless legs on and off for years - not sure that I've noticed any worsening with the rtx.

ScreaminMeanie
04-25-2011, 09:28 AM
OK, now this is making me wonder if most people with WG (or GPA ;) ) suffer from RLS......

Sangye
04-25-2011, 09:42 AM
It's a common symptom of various nutrient deficiencies. Pharmaceutical companies created a "syndrome" specifically to sell a drug.

ScreaminMeanie
04-25-2011, 09:56 AM
I've seen the ads for the drugs but I've never taken them. Mostly it hits me when I sit for long periods - haven't gone to see a movie in a theater in about 10 years because of it. Just makes me wonder if WG is somehow linked to that nutrient deficiency, either as a cause or an effect, since so many of us seem to have both. :confused:

beeinformed
04-25-2011, 10:31 AM
It's a common symptom of various nutrient deficiencies. Pharmaceutical companies created a "syndrome" specifically to sell a drug.

Hi Sangye!

Could you please tell me what nutrient deficiencies cause restless leg syndrome? Thanks!

Sangye
04-25-2011, 10:37 AM
The most common deficiencies that cause restless legs:
- Vitamin B
- Magnesium
- Incorrect calcium/magnesium ratio
- Deficiency of any one of the nutrients needed for proper calcium absorption (eg essential fatty acids, vitamin D)

pberggren1
04-25-2011, 11:24 AM
It sounds like a bone building thing to me.

ScreaminMeanie
04-25-2011, 12:00 PM
That totally makes sense. Mine got better for a number of years when I started taking cal/mag and potassium supplements. Then when I went on potassium-saving HBP meds right before I was dx'ed with the WG flare (about this time last year), I had to stop taking the potassium supplements, and I started having it again.

Sangye
04-25-2011, 10:58 PM
It sounds like a bone building thing to me.
No, those same nutrients are important for proper muscle control.

pberggren1
04-26-2011, 12:05 AM
No, those same nutrients are important for proper muscle control.

So not only for bones but muscles as well?

Sangye
04-26-2011, 08:36 AM
Yes. :biggrin1::biggrin1:

Kami
05-20-2011, 10:03 AM
Ok I asked my Rheumy about the 2 vs 4 Rituxan infusions and he says he does 4 because thats what the clinical trials for WG were. He uses the 2 for RA. He also said that the 4 is usually what is used for cancer patients. Just thought I would pass along the info. Hope everyone is having a good day today! Take care! :)

ScreaminMeanie
05-20-2011, 10:38 AM
That was my understanding, too, Kami. I wonder why some docs are still doing the 2x treatments.

vdub
05-20-2011, 11:17 AM
Since rtx wasn't previously approved for wg by the fda (sure a lot of initials there), was it covered by insurance? My understanding is that the procedure is quite expensive. $10k a session? (I'm talking US here, of course. Sometimes I forget that is is a very int'l forum.)

ScreaminMeanie
05-20-2011, 11:26 AM
Sometimes it was, depending on the insurance company and your doctor's willingness to fight for you. The company I had when I was dx'ed this time absolutely wouldn't, but the one my work switched to last July would, if you had failed on enough of the other possible treatments.

I believe rtx is now the only FDA-approved drug for WG, just because WG is so rare that nobody ever did a clinical study for any of the other drugs. Sangye, somebody, correct me if that's wrong.

mama2005
05-20-2011, 11:39 AM
Since rtx wasn't previously approved for wg by the fda (sure a lot of initials there), was it covered by insurance? My understanding is that the procedure is quite expensive. $10k a session? (I'm talking US here, of course. Sometimes I forget that is is a very int'l forum.)

My insursnce would not cover the rtx because the fda had not approved it for wg. The doc ended up admitting me and the doing the infusion because the hospital would end up eatting the bill. I had two rounds two weeks a part.

Sangye
05-20-2011, 12:10 PM
Mama, you need to tell your insurance company that none of the drugs used to treat Wegs are FDA-approved for it, not even prednisone. Rtx was only FDA-approved for Wegs last month.

jmmilliorn
05-20-2011, 08:24 PM
It took me several weeks to convince my insurance company to authorize RTX infusion #2. I got the first one in the Cleveland Clinic during a recent hospitalization for a bad reaction to Methotrexate. Not sure why they would authorize the first one and then balk at the 2nd. I'm feeling better since the first, but still weak and SOB.

Kami
05-21-2011, 03:28 AM
My hematologist said there is no incentive for drug companies to ask the FDA for approval since the doctors prescribe it anyway. It just takes time and money and there is no value to them. He uses Rituxan for many different blood related auto-immune disorders and its not approved for any of them.

onatreetop
05-21-2011, 11:22 PM
Wow theres a lotof good info here. I am also going for myfirst rtx infusion this thursday. My RA doc put it through as RA/WG and got the approvel the next day. The only hurtle sofar was getting the pharmacy to ship it to the office before my scheduled appt time this thursday. it isgoing out on monday and should be there tuesday. I thank all or any higher powers for our insurance.The RTX is going to cost forty dollars and the infusion lab and doc appt is thirty because they are on the same day at the same place.

I have been going back and forth with the idea of taking rtx but feel much better about it after reading all the info. rtx is on blue light special in Aetna land!

vdub
05-22-2011, 12:08 AM
The RTX is going to cost forty dollars and the infusion lab and doc appt is thirty because they are on the same day at the same place.
Did you miss a "thousand" there by chance?

elephant
05-30-2011, 01:02 AM
Good luck On a Tree Top. Hope this puts you into remssion and start to feel better.

onatreetop
06-01-2011, 03:56 PM
iys been a week since the infusion, was tired after but couldnt sleep because of the extra steriods they pumped with brfore the rtx came in. ihave been taking 24 mg and they shot me with 125mgs yaooooooooooooooooooooooooo! Sit in a chair for5 hours that was a challange. Go back on the 9th for round 2.

Chris G
06-02-2011, 01:45 AM
My 2nd (of 2) was last Friday. Feeling a bit better each day - nothing ground shaking......just little things I notice......no nose bleeds, less crusting, more air flowing through the sinuses, no daily sinus headaches (that's actually a big one).........and I have SLIGHTLY more energy than I used to. Oh, the other BIGGIE, is that my head is more clear than it's been since last summer - I have a little trouble concentrating, but not nearly as bad as it had been during March through early May. Hopefully, we'll continue to improve until the wg has gone to sleep completely!

Now to get off this damn pred :angry:

ScreaminMeanie
06-02-2011, 02:08 AM
It's now been almost two weeks since my last infusion, and I seem to be on a steady upward trend also. My feet/ankles have gone back to hurting a little bit, from time to time, but my head is definitely clearer than it has been in a long time.

The most interesting thing to me is that, as of this week, I'm no longer having the "pred crash" every day. I'm thinking now that either: 1) the pulsing of 100mg of solumedrol once a week kicked my adrenal system back into gear; or 2) that "pred crash" was actually a "Wegs crash" and this means the RTX is working at suppressing the Wegs, which could have been causing that awful feeling every evening about 7 or 8 pm.

Sangye
06-02-2011, 02:54 AM
I'm glad you two are starting to feel better. I wonder about your ankle pain, Screamin. I usually have a few Wegs symptoms that worsen right before they ease up each time I get rtx. It's like it's the Wegs dog's Last Hoorah and he knows it. :laugh:

Chris G
06-02-2011, 02:54 AM
The most interesting thing to me is that, as of this week, I'm no longer having the "pred crash" every day. I'm thinking now that either: 1) the pulsing of 100mg of solumedrol once a week kicked my adrenal system back into gear; or 2) that "pred crash" was actually a "Wegs crash" and this means the RTX is working at suppressing the Wegs, which could have been causing that awful feeling every evening about 7 or 8 pm.

That's great. I'm going with "wegs crash", and hoping your energy increases daily! Mine too. I SOOOO want to do more stuff now that the weather is getting nice.

I've taken it upon myself to lower my pred to 17.5 mg. I had been that low briefly, back in March or April, before the mtx really began to fail. I currently feel better than I have in many months. I'm hoping the rtx and 17.5 mg pred will sustain me. I see my docs next Tuesday, if I'm ok on 17.5 until then, it will give them additional info to work with.

However........I had bloodwork done on Thursday May 26, and my wbc is back up to 17!! WTH??!?!! It had been down to 8.4 the week before. Doc's office called me yesterday, to ask about fevers, etc. - no fevers, or anything resembling a cold or infection going on. I have no explanation for this. And I'm disappointed, because I assumed that if the rtx was working, I'd see another dip in my wbc.

Sangye
06-02-2011, 02:56 AM
That's really odd, Chris. Did they give you a hit of solumedrol with your infusions? If so, maybe that bumped them up.

Chris G
06-02-2011, 03:22 AM
Yeah, but the blood draw was the day BEFORE the 2nd infusion (and 2 weeks after the first infusion)! That makes it even more odd, don't ya think? The absolute neutrophils are double the upper limit too (16K - normal is 1500-7800). My body insists on fight something! I wish it would stop.

Sangye
06-02-2011, 03:34 AM
I don't remember enough about the life cycle of different types of WBCs-- maybe the first solumedrol spiked them and they're still hanging around. I think it's the neutrophils that are most affected by pred.

The rtx will selectively wipe out B cells.

Chris G
06-26-2011, 11:09 PM
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!!

Sangye
06-26-2011, 11:14 PM
Yay for you, Chris!! Did you jump from 20mg to 15mg all at once? That might be too big a jump. I forget how long you've been on pred though. That makes a difference.

Chris G
06-26-2011, 11:31 PM
I've been on pred since October/November of 2010 - 40mg was the highest dose I was on - I'd been at or around 20mg for 5-6 months . No, not 5mg all at once.......this post rtx taper went from 20 to 17.5 to 15, over the course of a month or so. They said once I reach 10mg, they want to start tapering my mtx. I suppose after that we'll finish the pred taper. I have mixed feelings about this because I want to get off the pred ASAP!!! I feel like I'm fast approaching a year on pred, and that scares me. Do you have thoughts on this Sangye?

ScreaminMeanie
06-27-2011, 02:30 AM
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

Sangye
06-27-2011, 12:09 PM
I've been on pred since October/November of 2010 - 40mg was the highest dose I was on - I'd been at or around 20mg for 5-6 months . No, not 5mg all at once.......this post rtx taper went from 20 to 17.5 to 15, over the course of a month or so. They said once I reach 10mg, they want to start tapering my mtx. I suppose after that we'll finish the pred taper. I have mixed feelings about this because I want to get off the pred ASAP!!! I feel like I'm fast approaching a year on pred, and that scares me. Do you have thoughts on this Sangye?
I think the rate of your taper is reasonable, especially given that you're still having symptoms. I sure understand wanting to get off pred, but don't rush it. Particularly once you get below 20 mg like you are now.... the Wegs dog needs time to get into a solid sleep. :wink1:

jmmilliorn
06-27-2011, 12:23 PM
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
06-27-2011, 10:19 PM
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
07-10-2011, 05:24 PM
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
07-10-2011, 11:12 PM
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
07-13-2011, 06:52 PM
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 :flapper:

Chris G
07-13-2011, 09:00 PM
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
07-13-2011, 11:00 PM
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. :hug2:

JanW
07-14-2011, 12:50 AM
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
07-14-2011, 11:32 PM
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.:mad1:

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
07-15-2011, 01:43 AM
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.