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Jeff vinc
04-30-2011, 02:54 PM
I have a concern right now and i am sure that somebody can give me an answer.
I am taking mtx 20 mg a week and i am tapering down prednisone currently at 25mg and 27.5mg alternated days. But when i am taking my prednisone later than the usual time ( if i forget my preds at home which happened a few times) i have bad headaches and i feel a lot of pressure in the sinus area and eyes. I've been on mtx for 5 months now and i wonder if it really work for me. Seems like i have flares when i take my preds later then my usual time and when the preds kick in, i feel better. is the MTX is working or if not i wonder why i feel that way before i take the preds....

pberggren1
04-30-2011, 02:58 PM
Hard to say for sure Jeff. But it is best to take pred at those doses as early in the morning as possible with breakfast and an acid blocker to protect your stomach. Do you see a Wegs Specialist? Have you seen an ENT recently?

Jeff vinc
04-30-2011, 03:16 PM
I do see a rheumy and he is really good and he have about 10 patients with wegs but i will only see him in 3 months. I can call him if i need to. I haven't seen any ENT specialist yet.
After 5 months on mtx i believe that it would keep me out of troubles if it was working but most of the time before i am taking my preds i feel pressurized and i have headaches and it is worst when i take the preds later( i am usually taking it always at the same time ). I always feel better when the preds kick in. I will definately have to call my doc because when i was diagnosed, they noticed a little mass behind my left eye which was some granulomas and everytime i have an headaches, i feel like its coming from this area ( that would explain my headaches and pressure on sinus and eyes).
But again, 6 months on preds and 5 months on mtx... this shouldn't happen if the mtx was working, right?
no side effect for mtx and the only side effect for preds on my part is moon face and a little bit of weight gain.
I will call my doc on monday about this just to make sure.

pberggren1
04-30-2011, 04:00 PM
Ya, I would get your doc on this ASAP. I agree that if the mtx is working you should not be feeling like this. And with them finding the granulomas behind your eye it is even more paramount that you get things in action quickly. Does your doc consult with a Wegs specialist? I highly recommend that he does or you go see one. It makes a world of differenct having more confidence in your doc. My previous doc had 20 Wegs patients but was not a Wegs specialist. My new doc has diagnosed hundreds of cases through his career so I trust him very much on his deicisions. Rtx is a new promissing drug for many and may be the answer for you but only a Wegs specialist can make the call on the drug choic which is not many to begin with.

Jeff vinc
05-01-2011, 12:11 AM
Thanks for the info Phil. I would have to do 4000 Kms to go see one because the only vasculitis center are in the Toronto and Hamilton area so basically, it is impossible for me to go see a doc overthere but i will call them to get a specialist and i will tell my rheumy to call the specialst. I don't like doing that but it is my health.
I have a good insurance plan but i wonder if Rtx is covered here in canada. I think its something like 10k per shot or for all shots?...

wait a minute..you are in saskatchewan and you have a specialist? there must one in Edmonton maybe, i guest ill do some research.

pberggren1
05-01-2011, 03:34 AM
Yes Jeff, I have a Wegs Specialist right here in Swift Current and Marta has one in Edmonton that trained with Dr. Specks at the Mayo Clinic.

I am currently trying to get 4 infusions of rtx approved through Sask Health at a cost of 14 grand total. Marta had hers covered earlier this year.

Belinda
05-02-2011, 12:59 PM
Jeff,

I am also on 20mg meth (just started a few months ago) and on 10 mg pred, and it has made no difference at all the the sinus pain, eye pain and pain in my airways. I actualy think my joint pain has increased since I started on the meth. I still need to take 8 panadeine and 1 tramadol everyday to function. I work fulltime and have 3 kids to look after so I need to be funtioning. I am seeing my specialist next week to discuss what is going on, and I have an appointment with a proper wegs specialist at the end of June.

It is interesting to compare notes with someone who is one the same about of methotrexate as me!

pberggren1
05-02-2011, 03:13 PM
Jeff and Belinda, I believe you need Wegs specialists involved in your case right away. Belinda, you are under huge amounts of stress working full time and having 3 kids so end of June is way too long to see a Wegs specialist.

Sangye
05-03-2011, 12:22 AM
Hi Belinda, glad to hear you're going to see a Wegs specialist. I agree with Phil that the end of June is probably too far away. If it were only sinus issues it might be okay. I'm concerned with your airway pain and severe overall pain. That sounds like highly active Wegs, which can become life-threatening. Has your doctor talked about increasing the pred at least? 10mg is not nearly enough to hold back Wegs.

Chris G
05-03-2011, 02:42 AM
Jeff - I have a similar experience with mtx. I started on 20mg in November, and 40mg of pred. As I tapered the pred thru December and January, my symptoms started to slowly return. When I got to 20mg pred, with continued mild symptoms, they increased my mtx to 25mg, and then up to 30mg last month, and we changed again to injectible mtx at 30mg. I was having some bad "mental" side effects at that high a dose - real difficulty concentrating, and feeling like I was drunk for a couple of days after each dose. I'm rambling - but basically, the mtx was not controling my symptoms - it seems it was the pred that was controling it. The doctors agreed, and we tried adding imuran to my drug regimen - which gave me horrible stomach side effects...... so now I'm off that.

Now, after 6 months of fooling around, I'm back up to 22.5mg pred, while still taking 25-30mg mtx injections. We are working toward changing me to rtx very soon.

The granulomas behind your eye are very troubling! I think it's time you stop fooling around with mtx too.

Belinda
05-03-2011, 11:13 AM
Hi Belinda, glad to hear you're going to see a Wegs specialist. I agree with Phil that the end of June is probably too far away. If it were only sinus issues it might be okay. I'm concerned with your airway pain and severe overall pain. That sounds like highly active Wegs, which can become life-threatening. Has your doctor talked about increasing the pred at least? 10mg is not nearly enough to hold back Wegs.
Thanks for the advice. I am seeing my respiratory spcialistst today when I go to hospital for my monthly plasma infusion. (though he is not a wegs specialist).

Sangye
05-03-2011, 12:21 PM
Do you mean plasmapheresis? Or are you getting a plasma transfusion?

Belinda
05-03-2011, 05:03 PM
I have been getting plasma infusions once a month for the past 14 months under the care of my respiritory specialist. This started before being diagnosed with wegs. I find that it certainly helps with my immune system. As soon as I started it kept most of my sinusitis and bronchitis from turning into a major infection throughout my body with high temps and getting very sick. However, I suspect it treats the symptoms and not the cause. Also while I am on it I can never get a positive anca test or biopsy result.

Sangye
05-03-2011, 11:52 PM
I haven't heard of other Weggies getting plasma transfusions (there certainly could be some out there, just haven't seen it myself). I wonder if the immune-boosting transfusions are worsening your Wegs.

Kami
05-06-2011, 01:01 PM
Once I was diagnosed and got the Wegs in remission with ctx, IV preds, plasmaphesis, etc I was put on 15mg weekly of mtx and slowly weaned off the preds altogether. It was a bit less then a year and I started to flare. They upped my mtx to 20 mg started me on 20 mg pred daily and started me on the Rituxan infusions. My doctor now says that mtx does not have a great history of keeping Wegs in remission. I am hopeful that the rituxan will do a better job but I don't know what the trials have shown. I wish there was more information on the long term effects of it too. My ANCA test is a good indicator if I am flaring. Hope you get some good results soon!

JanW
05-06-2011, 10:54 PM
There is still a lot of confusion about just what drugs keep the disease in remission and whether or not some of those people would still be in remission despite the drugs, which is why some docs will try to get their patients med free and others do not. Rtx certainly shows promise but the question is what if anything it will do to us long term.

Brooke
05-06-2011, 11:25 PM
I have always wondered, they say they dont know what Rituxan will or might happen long term... but do they have any tiny idea? Or what are they thinking could happen? I guess I'm not sure if I want to know the answer.

Sangye
05-07-2011, 01:39 AM
One day Dr Seo said, "We don't know about the long-term side effects of rtx. For all we know in 10 years a third arm might grow out of your forehead." ROTFL I guess you might have to know him to find the humor in it. :lol:

Brooke
05-07-2011, 02:16 AM
That might not be so bad!

Sangye
05-07-2011, 02:21 AM
Yeah, you guys with nose involvement can pick your nose while you post replies. That's very handy. :laugh::blink:

Brooke
05-07-2011, 02:26 AM
LOL!! So true!

pberggren1
05-07-2011, 04:01 AM
I already pick my nose while posting replies. A third arm may not be a bad idea. Dr. Seo sounds like this ID doc I had back in July, very funny, but serious and down to business as well.

Lightwarrior
05-07-2011, 05:42 AM
I already pick my nose while posting replies. A third arm may not be a bad idea. Dr. Seo sounds like this ID doc I had back in July, very funny, but serious and down to business as well.
Don't you find the keyboard gets a little gooey??? :lol:

pberggren1
05-07-2011, 05:44 AM
Don't you find the keyboard gets a little gooey??? :lol:

I use a pressure washer twice a day on it.

elephant
05-10-2011, 10:52 AM
How about a good Neil Med sinus rinse twice a day. :)

jmmilliorn
05-11-2011, 09:46 PM
Phil,
You give good advice. You are a man who knows. Thanks for your posts. I am a new forum member and only recently diagnosed. Reading all the comments from the "old times" really helps newbies like me.

Thanks.

freakyschizogirl
05-12-2011, 05:47 AM
Reading about everyone picking their nose helps me :w00t:

My dad jokes that i wouldnt have the disease if i had left my nose alone as a child....too late now!

jmmilliorn
05-12-2011, 09:56 AM
I'm not touching that with a 10ft. pole. Ooops! That sounds even worse.

delorisdoe
05-12-2011, 10:37 AM
Could plasma infusions be the same as ivig infusions? If so I had that towards the end of my cyoxan treatment many years ago and I sometimes wonder if it played a part in my drug free remission.

jmmilliorn
05-12-2011, 10:42 AM
I don't know. Being a patient is still pretty new to me. I didn't go to doctors very often until Aug. 2010. Your post script saying reminds me of my wife's. She says, "when you've got a lot to do, its good to get your nap out of the way first."

delorisdoe
05-12-2011, 10:43 AM
Oh...my applogies for hijacking the nose picking thread.

Sangye
05-12-2011, 10:51 AM
Could plasma infusions be the same as ivig infusions? If so I had that towards the end of my cyoxan treatment many years ago and I sometimes wonder if it played a part in my drug free remission.
I asked Dr Seo about IVIG for Wegs. He said it doesn't do anything for the Wegs but is used in Weggies if their immunoglobulins drop too low (not common). They do use it for other AI diseases, so it seems odd that it doesn't help Wegs.

delorisdoe
05-12-2011, 11:26 AM
I asked Dr Seo about IVIG for Wegs. He said it doesn't do anything for the Wegs but is used in Weggies if their immunoglobulins drop too low (not common). They do use it for other AI diseases, so it seems odd that it doesn't help Wegs.

That is why I was given the infusons, because of my too low immunoglobulins-i would assume due too the two plus years of cytoxan. I know it does not make sense but after six infusions over two weeks I steadily improved to a chemical free remmision that lasted several years. Coincience I guess.

pberggren1
05-12-2011, 03:27 PM
That is why I was given the infusons, because of my too low immunoglobulins-i would assume due too the two plus years of cytoxan. I know it does not make sense but after six infusions over two weeks I steadily improved to a chemical free remmision that lasted several years. Coincience I guess.

Very interesting. I will have to ask my doc about this one tomorrow.

delorisdoe
05-12-2011, 07:59 PM
It was after these infusions that i fell in love with my short fuzzy head bad teeth little doctor.

Sangye
05-13-2011, 12:05 AM
Someone posted an interview with Dr Seo from this month and he was discussing the problem with immunoglobulins dropping with repeated courses of rtx. He said there was no mechanism for that to happen with rtx but also said he had a a hard time believing there was no correlation.

I have a hypothesis but I don't think I can explain it well. Yet. :rolleyes1:

delorisdoe
05-13-2011, 12:46 AM
well all i can say about that is...if you do need ivig treatments for this you will feel awesome for a few weeks. the blood of many does a body good.

Sangye
05-13-2011, 01:15 AM
The Wikipedia article on IVIG says it takes donations from 1,000 people to make it!

delorisdoe
05-13-2011, 01:53 AM
yup...it is only a part of the blood and it takes alot of donations to make a batch. i know 8 years ago it was 10 thousand dollars a batch and im sure it costs more now.

Sangye
05-13-2011, 03:14 AM
I think that's still the price. Whenever I'm getting rtx infusions I ask the other people what they're getting and how much it costs. Most of the drugs are as expensive as rtx-- about $10,000 per infusion.

delorisdoe
05-13-2011, 03:26 AM
well, back then it would have been maybe 7000 american if it werer the same price as canadian. lol

jmmilliorn
05-13-2011, 03:27 AM
Whoa! My insurance company approved my first infusion but so far not the second. I don't know how critical the 2-week window between infusions is, but obviously it isn't happening today like it was supposed to. They are still arguing over whether it is FDA approved for WG (which it is), whether I can do it outpatient or not, who will order it--my local doctor or the Cleveland Clinic, and whether or not they will even pay for it after they approve me having it. I could fly back to Cleveland and check in to the hospital, but it seems ridiculously unnecessary when it would save CIGNA thousands for me just do it outpatient here at any number of fine cancer infusion centers.

Sangye
05-13-2011, 03:38 AM
Mike, here's the link to the FDA's website showing they approved rtx for Wegs last month. FDA approves Rituxan to treat two rare disorders (http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm251946.htm) You can give them this link and that part is done at least.

If I were in your shoes today, I'd get the highest-up supervisor at Cigna and get their name and phone number first. Then ask them if they are personally willing to be held responsible for the consequences if you don't receive the next infusion on time. Remind them that Wegs is a life-threatening disease if not treated properly.

Is it possible for your PCP or other local specialist to admit you to a local hospital and have it done?

jmmilliorn
05-13-2011, 03:46 AM
Yeah. I tried that. They say they have heard all about it, but must wait for someone at corporate to tell them it is approved for WG before they can do anything. Frustrating. Especially since I already had the first infusion. It is like the IRS. Everyone you talk to thinks they are THE authority and then they forward your call to the next step in the process where that person contradicts the last person and thinks THEY are the authority. The approval is so segmented into so many departments it is impossible to get an answer. Doctors don't have time to wade through this approval process, and they won't give me the approval. They told me to have my doctor call. When he did, they gave him the run-around, too. Still waiting.....

Sangye
05-13-2011, 03:52 AM
Grrrr.... I went through that when I was trying to get cellcept authorized a few years ago. I hope you get an answer today.

jmmilliorn
05-13-2011, 03:59 AM
My request for the drug was as an outpatient. If I want to do it as in patient, I have to start over with a new request. Make sense to you? Me neither. I'd like to avoid the expense of flying back to Cleveland, but at some point the "grief factor" sets in. My little country hospital doesn't have the drug, has to order it from Roche, doesn't know how long that will take, and says they don't have anyone qualified to administer it anyway. My local internist is a fine doctor and has worked well with the Cleveland doc, but doesn't have admitting privileges for the bigger hospitals in Fort Worth/Dallas 60-75 miles away. I can't get CIGNA to recommend an infusion center they WILL approve along with the permission and assurance they'll pay for it afterward. Those decisions are all made by different people in different departments. They all act like they are using different rule books.

Sangye
05-13-2011, 04:03 AM
Oh gosh, Mike I didn't realize those other issues. That is huge. Is your CC doc willing to admit you again? If so, I suggest you get on a flight this week.

jmmilliorn
05-13-2011, 05:45 AM
Yes. I can go back there as a last resort, but I'm trying to conserve my cash. There are plenty of infusion centers in the DFW metroplex and I shouldn't have to fly to Ohio at my expense. I'm holding out for now. My doctors are calling the insurance company since they won't give me a straight answer, but doctors shouldn't have to do the calling. They should be doctoring. CIGNA told me the closest cancer infusion center was out of program and I'd have to pay deductibles plus 30%, but when I called the infusion center they said they had hundreds of CIGNA patients--some receiving RTX. Are they lying or just incompetent at CIGNA?

Sangye
05-13-2011, 08:14 AM
Are they lying or just incompetent at CIGNA?
Can I choose "All of the above?" !

Chris G
05-13-2011, 08:28 AM
OMG Mike, I'm so frustrated for you! They sound a bunch of complete morons! Do they understand that without the second round of rtx, you may have to scrap the treatment, and start all over? Then they'll have to pay for a whole new set of treatments (and it would serve them right! - but not be good for you). And where's the guy who approved the rtx for WG in the first place? Apparently HE knew it was approved by the FDA, right?!?!

pberggren1
05-13-2011, 01:15 PM
I think I posted that article about Dr. Seo and rtx. Not sure which thread though.

jmmilliorn
05-18-2011, 10:20 AM
I finally got CIGNA to approve my 2nd infusion of Rituximab at the nearby cancer infusion center as outpatient. Now I just have to get the oncologist there to schedule the dang thing. I'm already 3 weeks after my first infusion, and don't know when I'll finally get it. They want to do blood tests tomorrow and talk about them on Thursday. Won't say when I'm getting the infusion. No one will tell me if the interval between first and 2nd infusion is critical or not. Maybe it is a moot point, now.

I'm really discouraged today. I've felt better every day since my RTX infusion and getting off the MTX which was causing me a lot of problems. Then today I woke up weak in the legs (thighs mostly), with my first headache in months, and sore shoulder sockets (a first). I've just sat in a chair all day watching TV and sleeping off and on. Don't have enough energy to do anything. The cough is worse again, I'm hoarse again after several days of improvement, and I'm gasping for air. Just can't get a deep breath. I just can't believe I did such a 180 turnaround for the worse. Didn't really know what to expect with RTX, but everyone else seemed to be feeling better after their infusion, and I was too, at least until today. Maybe tomorrow....

delorisdoe
05-18-2011, 10:25 AM
I am very happy for you getting the approval and I hope you feel better tomorrow.

jmmilliorn
05-18-2011, 10:28 AM
Thanks, Leigh. I enjoy reading your little poems and sayings.

delorisdoe
05-18-2011, 10:38 AM
Thanks, that last one is tiny :wink1::wink1:

Sangye
05-18-2011, 11:12 AM
Mike, I posted a reply on another thread. Your increase in symptoms is quite serious.

jmmilliorn
05-18-2011, 11:19 AM
I'm going to the doc in the morning. I'm going to see how I feel in the morning and act accordingly. Thank you.

Sangye
05-18-2011, 11:29 AM
Okay, I don't like it but I'll agree to that. :biggrin1:

pberggren1
05-18-2011, 02:50 PM
Mike, this is Batman speaking: GET TO THE FREAKING ER!

And it is good to hear that the rxt is approved locally. :ohmy::predrage::predrage:

delorisdoe
05-18-2011, 07:58 PM
If mike is anything like me he will not go no matter how much he is pushed too. lol. I have never been to an er for myself. :sneaky::sneaky:

jmmilliorn
05-18-2011, 10:50 PM
I'm better today, thankfully. I know my body pretty well, and the SOB is better. I think I'm just up tight about everything. Going to give blood this AM. Hope they schedule my infusion soon.

jmmilliorn
05-18-2011, 10:54 PM
The ER is the worst and last place you want to go. It takes too long to get them up to speed with your condition, and out here in the boondocks, the ER people have never even heard of WG. They are more used to dealing with snake bite, gun and knife wounds and tractor accidents. And our ER waiting rooms are full of illegal aliens who are getting free care at the citizen taxpayers expense. Great people, but the situation is untenable. It isn't their fault that our government is ignoring the situation, but we suffer the results of the unfortunate situation. It is literally quicker for me to fly to Cleveland (2hrs.) and get good treatment at the CC than to go to the local ER where there is no competent WG care.

Chris G
05-19-2011, 01:35 AM
Mike - I'm so glad to hear that CIGNA finally approved your 2nd treatment. I only hope you are scheduled quickly.

What type of bloodwork are they doing on you today? The only thing they did on me pre rtx was a hep-b test - and you probably had that already, prior to your 1st infusion - do they know that? There's no need to repeat that test. AND it's a 3-4 day test - if that's what they're doing, they're wasting time.

I'd like to ask you about your experience with mtx toxicity (i think that's what you had). Could you tell me how it started out (symptoms), and how it progressed? It seems that with each dose, I feel worse. I've been having increasing disorientation (that drunken feeling), headaches, and most recently I've begun to feel nauseous after my injection. But my biggest concern this week is that I'm having a lot of chest discomfort, and some SOB. The discomfort is right on (or under) my sternum bone - it's achy all day, and it's downright uncomfortable to take a deep breath or cough. Strangely, it subsided suddenly around 4pm yesterday, but it's back again today.

Additionally, this sternum ache has been a constant symptom since last summer - it's nothing new to me, but it definitely got worse this week after my mtx injection.

If you have any experience with this, I would appreciate hearing about it. Also, if you could, please tell me what to watch for with regard to toxicity.

Sangye
05-19-2011, 01:40 AM
ChrisG, I'm concerned that you're developing an allergic reaction to the mtx called pneumonitis. It acts like pneumonia (and looks like it on x-ray). The chest discomfort and SOB are key signs. I suggest you call your doc to get a chest x-ray immediately. I had this happen and it can progress extremely quickly once it starts.

Chris G
05-19-2011, 01:59 AM
Sangye, I knew you'd jump on me about this. :rolleyes1: I admit, I'm a little concerned about that too, as I read that you had developed it.

The only thing that leaves me wondering is that I have had this chest achiness for over 8 monts - BEFORE my dx in November, and BEFORE I began taking any wg drugs. I guess I have to admit though that it does feel a little different at this time. I'm SO tired, and I feel sure that the mtx is making me feel worse and worse with each dose. If I go to my gp, what should I tell her to do, and/or look for - because of course, she's not a wg specialist.

Sangye
05-19-2011, 02:05 AM
It's possible that you have two different things going on. I don't think the current increase in symptoms and development of new ones should be ignored. Especially with feeling very tired, too. Not good. I wonder if the original chest discomfort is Wegs that is not being entirely contained.

Tell your doc that you think you might be developing an allergic reaction to mtx--pneumonitis. She'll know about it for sure. I'd ask for a chest x-ray at a minimum. If she wants a chest CT that's great, too. If the chest x-ray shows "atypical" pneumonia it's likely to be the mtx.

Chris G
05-19-2011, 02:09 AM
Aside from stopping the mtx, what's the proper treatment for pneumonitis?

Sangye
05-19-2011, 02:25 AM
I don't know if they have to do anything else. I don't think so.

Mine was misdiagnosed as pneumonia, and I was hospitalized on IV antibiotics twice in 2 months. I was very sick. My symptoms were exactly like pneumonia. The hospital docs actually didn't figure out that it was the mtx. (My lousy rheumy at the time didn't care about my treatment and wasn't involved with the hospital doctors' discussion.) They stopped the mtx so I could fight off the "pneumonia." After it was all over, I decided I was in remission and didn't go back on the mtx or anything else. It was only when I went to Mayo Arizona a couple months later that I was convinced I had to go back on meds. I'm pretty sure none of you would recognize me from those days. I sure don't! :rolleyes1:

jmmilliorn
05-19-2011, 08:16 AM
I'd be happy to share my info with you. I didn't take MTX injections, I had six little pills every Monday night. I started taking them in mid Jan of this year, and by April 23rd when I checked into the CC, I was feeling worse than when I was diagnosed in Jan. I had suffered a foot long blood clot in the right leg behind the knee, I developed a 1/2" nodule of some sort in the right lung that wasn't there in Sept. of 2010, and I had a very bad rash of several thousand red bumps completely encircling my torso from waist to armpit. I was very SOB, jello-legged most days (though this could be from Prednisone, too. Who knows?) and I just generally felt crappy with a capital S. I did find that every afternoon or evening I would start to feel better. I thought it was because the prednisone was wearing off since I take it very early each day. I didn't have any energy to walk to the back of the grocery store, carry in the groceries or climb stairs. I did not have any chest pains or headaches, but I did have the disorientation, light-headdedness, my usual chronic cough. No tightness or pain in the sternum. Apparently, we all have different symptoms to everything. I've never seen a more disparate disease. They increased my MTX from 6 to 8 pills with the discovery of the lung nodule and that is when I got really sick and weak and when the rash suddenly appeared. When I sent my CC doc an iPhone pic of my rash, she called me back and said "get thee to the hospital." I have not had good experience locally with WG, because they just don't see enough, and I'm only 2hrs from Cleveland, so we decided to check in at the CC instead. Glad I did. I had TEAMS of docs working on me for a week and I checked out at the end of the week after taking my first Rituxan infusion. I've felt better every day since except yesterday. Today I am better again but still SOB and a little weak in the legs. I've posted some pics of the CC in my albums here on the forum.

The blood work they did today at the local cancer infusion center was just blood count, a test for hepatitis, and a third vial for something else. I forgot. I went to the oncologist for 6 weeks because they thought I might have leukemia (prior to my diagnosis) Just one of many wild goose chases for 7 months before my diagnosis at the CC. (which only took an hour once I went there) I see the doc tomorrow about the tests and hopefully he will schedule the 2nd Rituxan soon. It has been 3 weeks since my first infusion already.

Chris G
05-20-2011, 01:59 AM
Thanks for sharing all of that Mike. I don't seem to have any of the allergic type symptoms that you had, but with each dose, I'm having increasing disorientation, and worsening crappy feeling (with a capital S), that lasts about a day and a half to 2 days after my dose.

I'm worried that the hepatitis test may further hold up the scheduling of your next infusion. When I had my hep-b test they said it takes 3-4 days to run it - and they wouldn't schedule the infusion until they knew it was negative. Cleveland Clinic would already have run that test on you, so there's no need to wait for the results of a second test (no need to re-test at all really). I'm sure CC would fax it to you or your doc.

Now go kill those B-cells!! Keep us posted!

Sangye
05-20-2011, 02:18 AM
I agree-- why would they do another Hep B test between infusions?? I don't know if Dr Seo even did one for me. He never mentioned it. I don't have any of the risk factors though, so maybe that's why.

Chris G
05-20-2011, 02:19 AM
It's possible that you have two different things going on. I don't think the current increase in symptoms and development of new ones should be ignored. Especially with feeling very tired, too. Not good. I wonder if the original chest discomfort is Wegs that is not being entirely contained.

Tell your doc that you think you might be developing an allergic reaction to mtx--pneumonitis. She'll know about it for sure. I'd ask for a chest x-ray at a minimum. If she wants a chest CT that's great, too. If the chest x-ray shows "atypical" pneumonia it's likely to be the mtx.

Ok, so I went to urgent care last night.......it was more like a mini ER. They did an ekg, some bloodwork, and a chest ct. Of course everything came back NORMAL. Good news, right? Yes, but it still leaves me with the unexplained nagging sternum pain (& shortness of breath), which has been my mystery wg symptom since before diagnosis last summer. I seem to be the only one who has it!

When I look back at my notes of the last couple weeks, I have "achy chest" listed more frequently. And then on Tuesday and Wednesday, it was the worse it's been since before I started wg drugs last fall. The fact that it's returning, further confirms for me, that the mtx is failing - which is not really that important at this point, now that I've started rtx. Except that they want me to keep taking the mtx, and it's making me increasinly sicker each week!!

One other piece of good news (at least I think it's good news)......my wbc was 8.4 last night. For the last 6 months, while on mtx (25-30mg), my wbc has refused to dip below 11. Is it safe to say I think the lower wbc is due to the rtx infusion I had last Friday??

Sangye
05-20-2011, 02:26 AM
I'm relieved that you went to the ER, Chris. Glad the CT was normal. When was your last echocardiogram? Wegs can cause heart problems that might not show up on EKG.

If heart involvement has been ruled out, and you're feeling sicker from the mtx each week, it makes me think the mtx is irritating your lungs enough to cause symptoms but not show on CT. How long does your doc want to you stay on mtx since you've already started rtx?

Chris G
05-20-2011, 02:51 AM
They haven't given me a difinitive answer about how long I will continue the mtx - at first she said "a couple of weeks", but when I asked for clarification, she said that the plan is to get the pred down FIRST. Change only one drug at a time. Since I'm still at 20mg pred, I know that could take a while. My guess is that it could be a couple of months before getting off the mtx. But, I'm tellin ya.......it's making me so sick! I can't function the day after my shot. At some point it's going to inhibit my ability to tell whether my symptoms are improving with the new therapy.

I see them on June 7. Until then, I'm not sure what I'm gonna do.

jmmilliorn
05-20-2011, 05:23 AM
I'm getting my 2nd RTX infusion this coming Tue May 24th. Locally. Victory over the insurance company at last.

Sangye
05-20-2011, 05:47 AM
I'm glad you're finally getting it Mike. I can't call it a victory since it'll be 4 weeks between your infusions--way outside the protocol. :mad1: I just hope it works well for you and gets you into a solid remission.

jmmilliorn
05-20-2011, 05:51 AM
Dr. Villa-Forte said it was not optimum, but should still work.

Chris G
05-20-2011, 05:51 AM
I second what Sangye said........ Yay! and Boo to them!!!

Sangye
05-20-2011, 05:53 AM
LOL Chris.. exactly! :laugh: