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misskay
12-31-2010, 04:12 AM
Due to complications of the bladder after 5 months of Cytoxan, my doc had me discontinue using it 2 weeks ago. He is currently trying to get me approved for Rituxan infusuins. Apparently insurance companies don't like to pay for it for some reason. We've upped my Pred to 15 mg daily in the meantime to try and protect me...
My question is this? Has anyone here had the IV Rituxan? Was it used alone or in combination with another drug? I've read that it is usually used in combination with Methotrexate... altho my doc hasn't mentioned this yet. Possibly he is just waiting until he gets the Rituxan approval before we discuss it in depth. So far all of this has been done over the phone since my last appointment when he had me rushed to Urulogy due to the bladder bleeding.
Getting nervous due to stopping chemo before remission, learning and starting a new med, having to up the pred after finally getting it down to 7.5, and just generally not feeling well. I have an appointment with my PCP on Monday at the Rhumy suggestion because I may be developing a respiratory infection, and also to recheck the urine for blood and run a CBC (Rhumy office is closed starting tomorrow, and will not reopen until January 10. (it's much cheaper co-pay wise for me to do all this at PCP rather than go to Pulmy for parts, and Labs for the rest, and my Rhumy *Bless him* is trying to 1)save me 2 different higher co-pays and 2)save me several trips to different places in differrnt cities.
Thanks in advance for any thoughts or suggestions.
~Stacey~

Brooke
12-31-2010, 04:16 AM
I had the Rituxan Infusions in May of this year. It took a lot of calls back and forth with the ins. company to finally get it approved, they finally did. The methotrexate was not working for me, hence having to do Rituxan, I can't remember how long I was off of the methotrexate before the infusions. I was on 20 mg of prednisone and also on bactrim while receiving the Rituxan. The infusions went just fine for me.
Good luck to you!

misskay
12-31-2010, 04:36 AM
well, just got a call from the Rhumy office... the insurance company (Cigna) has denied me the Rituxan. Dr office is going to send me paperwork to sign that they will then send to the makers of the drug to try and get them to supply it for free. This could take several months... about to have a major come-apart here...

Brooke
12-31-2010, 04:44 AM
Don't fall apart!! Keep fighting!! Thats what I had to do! I also wrote a letter to the insurance company explaining that I am in my child bearing years and would like to have children in the future. Also noted the side effects of Cytoxin. I am surprised they would deny this since you are having problems with the Cytoxin.
Stay strong!!

me2
12-31-2010, 05:14 AM
Don't give up on your insurance company too quick. Fight the battle on all fronts. Try and get the company to provide the drug for free but also pursue appeals with your insurance company. I highly recommend you check out this web site by Laurie Todd- The Insurance Warrior About Laurie the I.W. (http://blog.theinsurancewarrior.com/blog1/?page_id=2)

She is an expert on the insurance appeals process. She has a great book on the subject. If you look around there are also radio interviews with her. She sends the book out pronto if you order it or maybe your local library has it.

There is a large body of evidence to support an appeal for Rituxan. Work on all of your possiblities at once until one of them comes through.

Sangye
12-31-2010, 05:43 AM
Misskay, it's not necessarily over with Cigna. Your doc shouldn't be throwing in the towel like that. First, find out on what basis they denied it and let us know. It's usually just a matter of appealing and the doc providing proper documentation. Given your problems with ctx they'll approve it.

Jaha
12-31-2010, 06:10 AM
Misskay,
The insurance companies usually try to deny the first go round with something different your doctor suggests. It is a big game they play and the odds of that person not appealing that decision is large. Call your insurance's medical reveiw department and be very hands on with them. Ask what documention you need to provide in order to reverse this decision. The doctors's office has an easier time with their appeal if you intervene
because the insurance companies do not want to deal much with the insured. Also, a tip for calling insurances and getting around their phone system is to just keeping asking for a representative, learned that from calling insurance companies for a living. Good luck and Best Wishes!
jaha

JanW
12-31-2010, 11:35 AM
Honestly, Misskay, your doctor's office is a key component in the battle on this, particularly since you have already failed ctx. You really have no where else to go in terms of a 'strong' WG drug. Please note that none of the researchers that spoke at the Symposium said they ever have a problem getting this for their patients -- and they deal with insurance companies all over the U.S. When I started treatment, my doc assured me he knew how to 'write the letter' to get rtx approved.

If nothing else, I'm sure your doctor's office could reach out to a doctor's office at one of the big centers to ask for assistance (hell, he could have them email the boilerplate letter -- I'm sure there is one). This is serious and you shouldn't have to do it on your own.

misskay
12-31-2010, 12:01 PM
Rhumy called me again... he;s fighting the insurance company. He's told them he will provide any paperwork, lab results, hospital records that they want... but that I NEED this drug. He's *almost* as upset as I am at the situation... he actually called me from his home telephone this evening to talk and make sure I knew he wasn't beat, and to make sure I was ok.

*EDIT* BTW - I did have a minor come-apart this afternoon. Had a good cry, threw a few pillows... then had a cup of tea. Feeling calmer now. It just makes me so damned mad... we were getting pretty darn close to 'remission' we thought... then the bladder issue cropped up, now this... just scared to death of getting extremely sick again and having to start over from scratch...

drz
12-31-2010, 12:38 PM
Rhumy called me again... he;s fighting the insurance company. He's told them he will provide any paperwork, lab results, hospital records that they want... but that I NEED this drug. He's *almost* as upset as I am at the situation... he actually called me from his home telephone this evening to talk and make sure I knew he wasn't beat, and to make sure I was ok.

*EDIT* BTW - I did have a minor come-apart this afternoon. Had a good cry, threw a few pillows... then had a cup of tea. Feeling calmer now. It just makes me so damned mad... we were getting pretty darn close to 'remission' we thought... then the bladder issue cropped up, now this... just scared to death of getting extremely sick again and having to start over from scratch...

It seems the insurance companies often have different standards for outpatient versus inpatient services. If he puts you in a hospital would they cover it then. I know I received Rituxan IV during my hospital stay and don't recall there was any hassle about insurance coverage at that time. Of course I think it was considered a life or death issue then due to hemorrhaging in my lungs.

With all the stress we have in just dealing with the Wegener's it just seems so unfair that in the USA we often have the extra stress of fighting insurance companies.

Sangye
12-31-2010, 12:42 PM
I'm relieved to hear your doc is helping. Someone must have talked some sense into him. Like Jan said, it's HIS job since he's the one who knows that you have no other options. At any rate, hang in there Stacy. None of the things you're afraid of have happened and it won't help you to focus on them. Glad you threw the pillows and not the tea! :hug2:

Sangye
12-31-2010, 12:43 PM
drz, I don't think there's justification for her to be hospitalized. And she'd have to be hospitalized for every infusion. Not a viable solution when one is already outpatient.

drz
12-31-2010, 12:57 PM
drz, I don't think there's justification for her to be hospitalized. And she'd have to be hospitalized for every infusion. Not a viable solution when one is already outpatient.
If she hasn't had it before the doctor could request hospital admission for safety reasons to monitor for any reactions. When I was in a nursing home they transfered me to the hospital overnight for IV antibiotics and blood transfusions so I could have closer monitoring in case of a negative reaction. Later on I was able to get someof these in the ER room but it was still part of hospital but then I didn't have to pay for over night stay.

me2
12-31-2010, 01:09 PM
That is a great point about the in patient coverage drz. The same is true for my insurance company. I recieved in patient treatment for IVIG that was covered and then later the insurance company refused to pay for additional out patient IVIG.
They did not balk at my Rituxan treatments. I too am surprised that Misskay is having trouble. I am so glad that your doctor is working hard on your behalf.
I wonder if your doctor could contact some of the Foundation consultants and find out if any of them has gotten Rituxan approval for WG from Cigna and ask what they submitted?

me2
12-31-2010, 01:30 PM
Another thought. I was remembering when I got Rituxan that my doctor used all the info from one of his colleagues that had gotten Rituxan approved from my insurance company.

Sangye
12-31-2010, 01:49 PM
Rtx infusions are done in infusion clinics where they are well-equipped to handle adverse reactions. There really is no justification to hospitalize someone just to have it done.

drz
12-31-2010, 02:35 PM
Rtx infusions are done in infusion clinics where they are well-equipped to handle adverse reactions. There really is no justification to hospitalize someone just to have it done.

What if there is no infusion clinic in the area or near by?

Sangye
01-01-2011, 02:26 AM
Every hospital has the ability to do infusions, even if someone has to go to an oncology unit. And if someone lives too far from one they'd have to get a hotel nearby. Insurance is very particular about paying for hospitalizations-- gotta prove medical necessity. A hospitalization is full-time nursing and physician care. Also, many hospitals have limited beds. It wouldn't be good to occupy the bed of someone who really needs it.

TBulger
01-05-2011, 04:55 AM
Misskay,

I fought the same fight with a different insurance company. It is EXTREMELY frustrating, but it can be won with time and determination. Your doctor may be willing to fight, but in all honesty he has limited resources. I found that the insurance company was quite fond of dragging things out on the phone. I had a lot more time and motivation to stay on the phone than the staff at the doctors office. When I got an answer I didn't like, I would ask for someone else. Every time I spoke to the insurance company I would fax the info to the doctor and call his staff to let them know what had transpired.

I am preparing for my second round next month. My Prednisone is now down to 7.5 mg per day from 40.

Sangye
01-05-2011, 06:24 AM
That's great info, TBulger. I did that when my insurance company wouldn't approve Cellcept. If I hadn't, it wouldn't have gotten approved. I was the one who realized there are no drugs that are FDA-approved for Wegs (they had denied coverage because cellcept wasn't FDA-approved for Wegs). I always asked for a supervisor, even when I was speaking to one. Everyone has a boss. :wink1:

snooz23
01-06-2011, 08:01 PM
I see Dr. Langford at Cleveland Clinic and I will be checking into the hospital for my second rtx infusion tomorrow. It is my understanding that this is the common practice there because of hassles w/ ins. companies. They have an infusion clinic in their offices however I cannot go there because of ins. Therefore I am required to become an "in patient" for 4-6 hours and then leave again. I went through it 2 weeks ago and it went rather smooth but I did not like "taking a bed" from someone who needed it or the fact that I was exposed to extra germs.

FYI--Since dx in sept 09 I have tried mtx. for 6+ months and ctx. (3 months)/imuran with no luck. All have been given under the incredible care of Dr. Langford and her team at CC. It's round three for me at high doses of of pred. and I am hoping the rtx. is the third charm.

elephant
01-07-2011, 12:02 AM
Hi snooz, I like her too. So glad you are getting good care, and hope this works for you. Keep us posted.

Sangye
01-07-2011, 01:23 AM
Hey snooz, it's nice to hear from you! Terrific to hear that you're going to CC. How weird about the hospital thing. At JHU they don't seem to have trouble treating patients in the infusion clinic.

snooz23
01-11-2011, 12:38 PM
Completed round two of RTX. now we wait and see how the lung scan turns out in @ month. Will continue w/ pred. taper and bacterim 3x a week. No maintenance drug which I am happy about. Imuran and me did not mix.

Checked in the hospital, took a bed, watched a movie, slept a bit and then was released to make the very icy, snowy drive home. No ill side-effects whatsoever from the infusion. Now I am "requiring" that my B cells reproduce without the Wegs. glitch in them. We'll see what happens. Cheers~

elephant
01-11-2011, 12:57 PM
Snooz, glad you had no ill effects from the RTX! I am sure the lung scan will bring you good results!

gurinbasra
01-11-2011, 01:35 PM
I'm about to get my second shot at the Rituxan - first one was March 2009 and like you I didn't repond to the chemo at all which I had for year. The Rituxan immediately gave me relief as I was able to finally lower the Pred to 10mg and I felt so much better after than I did after the chemo. I've been well ever since but blood work and a recent sinus biopsy shows it's still hanging around specifically just in the left sinus so that's when my dr decided on this second round. Even in Canada with the insurance companies, some cover, some don't - mine did at 80% my husband's didn't, so this year I signed up for 100%.

I took the Rituxan in combination with the Methotrexate which I am still on to date. At the time of infusion, I think they gave me some Benedryl or something as running a fever is common. The only risk of Rituxan is having a reaction at the time of infusion which is why it can only be administered where they will be able to "save your life" if you were to have a reaction at time of infusion. Originally the drug was thrown out of the hospitals in Calgary, but the medical staff deemed there was no clinic equipped to deal with a person having a life threatening issue - even a 911 call would not be quick enough for response - that the drug is now back in the hospitals.

I wrote the Alberta Health Minister requesting that since some Canadian provinces have the drug approved, that every Canadian should be given the right to have it for free. He wrote back - yes, I did actually get a response - that I need to get the pharmaceutical company to apply for it's approval - washed their hands of it pretty much. So, then I wrote to LeRoche and they said that at this time in Alberta they were not considering applying, I asked why, no response - washed their hands of it - but I won't let them off the hook so easily. So now, after my next infusion, I'm going to request it again - point being, stick up for yourself. Unfortunately, even being this sick we still have to some how find the time and energy to deal with all the unfair justices that become part of our health world and at the end of the day all WG patients will benefit.

Good luck, I certainly hope you get the drug and see some good results. At the end of the day, it's all about getting better and claiming some of your life back.

Keep us informed.

Gurinder

pberggren1
01-11-2011, 04:01 PM
Gurinder:

I am a little concerned about the sinus biopsy you mentioned. It did not seem neccessary to do the biopsy. You already knew that you have Wegs. And the trouble with nose and sinus surgery on Weggies is that it can easily trigger a flare. But then again any surgery I'm sure would be the same.

gurinbasra
01-12-2011, 12:39 AM
Hi,

I think the second biopsy was a great decision and this was not confirm if I had Wegener's (the first one confirmed it), it was to pin point whether it was still active. I've had the numbness around my left eye for a year now and the biopsy showed some healed vasculitus and confirmed active wegener's where I'm feeling the numbness. In my case, I've had such specific flare ups that have been hard to control and an MRI just seems to light up everything.

I've had no flare up, feeling just fine, in fact even with a positive ANCA - not much at 5.2 but positive anyway, I had no idea that the Wegener's was active. I doubt I'll need any more biopsies, but thanks for your concern!

Jack
01-12-2011, 04:07 AM
I have also had repeat biopsies of both sinus and kidney some time after confirmation of Wegener's. I'm not sure that I fully understand why (because I was not as proactive over 20 years ago!), but it seems that they can obtain useful information that is only available by this method. I know that they would not have done them if there was not a net gain to be made considering the risk (and indeed, the second sinus one went a bit wrong and put me in hospital for a few days, but it did not cause Wegener's problems).

JanW
01-12-2011, 05:36 AM
I wonder what difference it makes in treatment knowing that granulomas are in one place vs. the other since it is a systemic disease.

elephant
01-12-2011, 05:43 AM
The Rhuemys usally don't start you out with cytoxan. When I was diagnosed in 2008, the called it limited Wegs because it was in my sinuses only. At that time they just increased my prednisone to 60mg and I staying on my cyclosporine(immunosuppression kidney transplant). I knew I need more immunosuppression meds...it was too late and I developed a lung nodule 6 months later after being diagnosed. At that time I did not have a WG specialist.

misskay
01-22-2011, 11:33 AM
Just wanted to update, and share the good news. Genentech just called me, and they have approved me to recieve the Rituxan for 1 year at no cost! Take THAT insurance company LOL

pberggren1
01-22-2011, 12:19 PM
That's awesome. I hope it works for you misskay.

Sangye
01-22-2011, 03:31 PM
YAY!!! :thumbsup::w00t:

ScreaminMeanie
01-23-2011, 01:53 AM
Hip, hip, HOORAY!!!!!

misskay
01-27-2011, 03:30 AM
Docs office just called... first infusion of Rituxan is Feb 3rd. For anyone who's had it, what should I expect? Nausea? Continued hair loss? Any info would be great...
Seeing the Pulmy tomorrow... and not a minute too soon. Am feeling pretty awful. Coughing up nasty stuff again, and my lungs actually hurt and feel 'heavy' if that makes any sense. Also bloody noses, more sinus congestion, fatigue, pain, blue fingers and toes, night sweats, horrible back (mid and lower) pain and mouth blisters. (Same as original symptoms) so pretty sure I'm flaring after 6 weeks with no chemo. Almost sure I'm getting or already have pnuemonia again :/
Will update after I see Pulmy tomorrow.

Sangye
01-27-2011, 03:45 AM
Hey, you're starting rtx the day after me! Like any of our drugs the side effects are highly variable. Some people say they don't notice anything and just go back to work. For some of us the treatments are incredibly weakening. Basically I go in feeling lousy and leave in a wheelchair. I've done 2 rounds of 4 infusions each, and both times I was pretty flat for 6 weeks (counting from first infusion). By flat I mean not able to cook for myself or clean my house, can barely walk, etc... It's like getting a reverse blood transfusion. No other side effects--no nausea, definitely no hair loss (it's not chemo). This time I'm only doing 2 infusions so I'm hoping it won't be as hard.

Dr Seo said some people react this way to the infusions and there's no predicting how it will go.

I'm not sure if it's safe for you to wait another 8 days to start treatment. Your Wegs sounds highly active. I also question that it's pneumonia since all your other symptoms are Wegs. Rtx takes several weeks to start working. They might have to put you on high dose pred to get the lid on things until it kicks in. If I were you, I'd ask about starting rtx this Friday.

misskay
01-27-2011, 04:55 AM
Sangye, the cavity pnuemonia was what first had me hospitalized (major lung involvement)... the holes are still in the lungs but had been shrinking with the Pred and Cytoxan. I'll see what the Pulmy thinks tomorrow when he does x-rays and breathing tests. He may very well stick my butt back in the hospital and see about starting the Rituxan immediately. The first open space at the infusion center is mine... Feb 3rd. They told me it will take 6 hours. Is this normal?

Not happy to hear how bad your infusions were... hoping they don't affect me that way *crossing fingers* Rituxan isn't like chemo? So no continuing hair loss? Cool... it's been 6 weeks today since my last chemo and it's still falling out by the handfulls. Wondering how long that will last.

We've upped the Pred from 7.5 to 15 since we stopped the Cytoxan... hoping we don't have to go any higher. Too darn hard to taper back down.

Sangye
01-27-2011, 05:24 AM
I know you don't want to go in the hospital but if that's the only way to get rtx sooner it's probably best. However, if you have pneumonia it's not safe to start rtx because it wipes out your ability to fight infection. Docs--even JHU docs-- have been fooled into thinking I had pneumonia when my lungs were actually hemorrhaging.

Rtx works by selectively destroying B cells-- a type of white blood cell. It doesn't have a global toxic effect like ctx but it's as powerful an immunosuppressant.

drz
01-27-2011, 06:54 AM
Docs office just called... first infusion of Rituxan is Feb 3rd. For anyone who's had it, what should I expect? Nausea? Continued hair loss? Any info would be great...
Seeing the Pulmy tomorrow... and not a minute too soon. Am feeling pretty awful. Coughing up nasty stuff again, and my lungs actually hurt and feel 'heavy' if that makes any sense. Also bloody noses, more sinus congestion, fatigue, pain, blue fingers and toes, night sweats, horrible back (mid and lower) pain and mouth blisters. (Same as original symptoms) so pretty sure I'm flaring after 6 weeks with no chemo. Almost sure I'm getting or already have pnuemonia again :/
Will update after I see Pulmy tomorrow.

I don't remember any reaction to rituxan IV but I was pretty sick at time with other symptoms of Wegener's so doubt i would have noticed much. Hopefully you will notice some improvement and reduction in your problem symptoms and not much else. Good luck and let us know how it goes for you.

ScreaminMeanie
01-27-2011, 08:09 AM
Misskay, my doc has had 13 patients do rituximab treatment. She said all but one experienced no side effects, other than feeling a bit "off" the next day.

gurinbasra
01-28-2011, 01:54 AM
Hi misskay,

Hang in there until your infusion, I remember being extremeley sick before I had the Rituxan the first time and then it just seemed like every day I got better and better. I don't remember any side affects the first time because I was so sick from the Wegs, but now I'm going today for my second time and second and final infusion. After the first one two weeks ago, I just felt off, I had it on a Thursday and was in bed until the Monday when I felt normal getting up on my feet. Prior to that I stayed in bed because every time I got up, I felt like I'd just ran a marathon - the legs were dead weight but the main thing for me was that I wasn't throwing up and I wasn't in pain! I was back to work on Wednesday and now I'm off again today. So all in all, it's been a piece of cake for me compare to the chemo and remember because this is a biologic drug, you shouldn't lose any of your hair because the drug only targets the B cells and leaves the rest of your immune system and all fastest growing cells alone.

Best of luck, I hope you feel the relief from all the stuff you're going through right now, but be patient and take good care of yourself.

Gurinder

Brooke
01-28-2011, 02:40 AM
Good luck with the Rituxan. I did not have any side effects what so ever!:thumbsup:

misskay
01-28-2011, 07:47 AM
Saw the Pulmy today, and it's def Wegs flaring. He upped the Bactrim to every day again, and wanted to up the Pred too, but I'm at 15mg now and don't want to go any higher if I can help it. I promised to up it if anything worsened. I see Rhumey Tuesday... and then first Rtx Infusion on Thursday...
Also gave me 2 more Rx for the Thrush I can't seem to shake...

Sangye
01-28-2011, 08:02 AM
How much pred did he want you to take and for how long?

misskay
01-28-2011, 08:10 AM
He wanted to up it to 40mg. Then we'd have to gradually taper again. I promised to up it by 5mg at a time if things got worse. I HATE HATE HATE Pred and I won't up it if I can avoid it. Maybe I won't be able to stay at 15... but I'm gonna try. If Rhumy agrees with Pulmy (they were going to talk this afternoon), then I'll go with majority vote :(

drz
01-28-2011, 10:55 AM
He wanted to up it to 40mg. Then we'd have to gradually taper again. I promised to up it by 5mg at a time if things got worse. I HATE HATE HATE Pred and I won't up it if I can avoid it. Maybe I won't be able to stay at 15... but I'm gonna try. If Rhumy agrees with Pulmy (they were going to talk this afternoon), then I'll go with majority vote :(

I guess I would not worry about such an increase. Last time I was in hospital for a few days they gave me 60 MG of solu-medrol a day which equates to about 100 of prednisone. They discharged me on 60 mg of prednisone but had me decrease it rapidly and in a week I was back at my usual 10 mg a day with out any problems.

Palmyra
01-28-2011, 12:58 PM
... and then first Rtx Infusion on Thursday...
Also gave me 2 more Rx for the Thrush I can't seem to shake...

Hola Misskay,

Sorry for the flare, but hurray for the Rtx infusion...I certainly hope it helps tons!! It has been just the ticket for my daughter.

Regarding the "Thrush" you can't seem to shake...that is my area of expertise, so feel free to elaborate, either here or send me a private message. Many years in oral medicine/dentistry. I hate the idea of you being on two additional meds if we can come to the bottom of the causitive factors involved. Small matter in the long run, but lets see what's up.

Palmyra

misskay
01-29-2011, 12:47 AM
palmyra, the thrush has been on on-going problem. At first I figured it was the inhalers as these are the usual culprits for me... so stopped using all of them. Still keep the thrush. Have been using Nystatin 4x daily for months and I still have it. Pulmy gave me an rx for some pills yesterday but I can't remember the name of them as I haven't picked them up from the pharmacy yet... will let you know what it is as soon as I have the name.
The thrush is generally the back of the throat and back of tongue. It doesn't bother me physically at all, don't even know it's there unless I or the docs look.
I wonder if it's because my sinuses are so stuffed all the time that I breath through my mouth when sleeping, drying everything out and allowing the bacteria to flourish? None of the nasal sprays, etc have done anything for me, at sometimes seem to actually make the problem worse so I have discontinued everything except the Saline spray. Pulmy said if the pills don't work, he wants the ENT to take a look also...
any words of wisdom would be appreciated.

misskay
01-29-2011, 12:10 PM
ok... the other new med is Diflucan. Same stuff they gave me when I had the fungal skin infection but at a MUCH higher dose. With the skin I think it was 100mg once a week. This is 100mg twice a day.

misskay
02-05-2011, 06:32 AM
Had my first rtx infusion yesterday. Took 6 tries to get a good vein... I am covered in bruises. They got in the veins just fine, got good blood return, then the vein would blow. I think it upset the nurses more than it did me. They pride themselves on hard sticks, (which I am) and "1 patient, 1 stick"... guess I blew that for them yesterday... took over an hour to finally get a good line, even after tourniquits, dangling arm, heating pads, etc.

Since I can't take Benydryl due to a heart condition they used a small dose of Claritin instead before the Solumedrol and rtx. Had some minor reaction to the rtx. Blood pressure dropped pretty low and temp started to go up, and slight itchy throat, tongue and inside ears, and face... but we slowed the dose and everything stabilized.

Just a shout out to the infusion nurses at the office... Cathy and Lenore ROCK! They kept things calm but upbeat, gave lots of encouragement and hugs... fetched water, passed out cookies, pillows, blankets, recipes (lol). Even a stuffed dog for the occasional snuggle.... they made what could be a miserable way to spend the day a whole lot better...

Didn't sleep hardly at all last night (probably due to the 100 Solumedrol), feel really tired today, and have had a headache since infusion. Guess killing off all those nasty B Cells is more work than I thought. lol Doc said I should start feeling better in a couple of weeks. I can't wait.

Brooke
02-05-2011, 06:45 AM
Great news! Glad things went well for you!! Cheers to getting better!! :biggrin1:

Sangye
02-05-2011, 06:49 AM
I'm glad you got started on rtx. I have the same trouble with veins--just goes with the territory. (My record to get an IV started is 9.5 hrs of non-stop digging in the ER. I do mean non-stop, as they kept bringing in more nurses but not giving me a break. Well over 15 IVs started and blown, even in my neck. It was hell!)

I hope they'll find a better way to pre-treat you next time. You can't have that happen every time. When do you get your next infusion?

Brooke
02-05-2011, 07:19 AM
Sangye, that is CRAZY!!!!! 9 1/2 hours???!!! WOWZER, poor you!!!
My husband has taken my blood before at our clinic and sometimes he has to use the childs needle to draw blood.

misskay
02-05-2011, 07:25 AM
wow sangye... sounds awful. These gals kept apologizing... and at one point one of them was practically lying on the floor trying to start it, with a tourniquit, dangling arm and heating pad... all in all it was about an hour and a half before we got a line established.

I get my next infusion in 2 weeks (the 18th). I also hope they come up with another pre-treatment. The reaction wasn't severe, but I'd prefer not to have it every time lol

drz
02-05-2011, 07:37 AM
wow sangye... sounds awful. These gals kept apologizing... and at one point one of them was practically lying on the floor trying to start it, with a tourniquit, dangling arm and heating pad... all in all it was about an hour and a half before we got a line established.

I get my next infusion in 2 weeks (the 18th). I also hope they come up with another pre-treatment. The reaction wasn't severe, but I'd prefer not to have it every time lol

Glad you got through it. sounds like an ordeal for you. What do you call the specialists that just do IV treatment? I have easy viens, one IV specialist said he could me in the dark. One time when I got stabbed three times I told them to get one of those specialists. The nurse agreed and said she wasn't going to try anymore. the specialist got me hooked up right away with no pain or hassle. You guys have a lot more patience than I do for being stuck.

Sangye
02-05-2011, 07:46 AM
I always kind of giggle when people say they had to get stuck twice or even three times like it was the end of the world. Good thing I have no needle phobia--I'd be a goner!

I only have 2 veins left that will hold an IV. They're very scarred up from 4.5 yrs of sticks and all this pred (which makes veins fragile). I never had trouble before. If you have good veins protect them as if you only have 1 left. Don't do blood work unless you really need it.

misskay
02-05-2011, 10:00 AM
These are full-time infusion nurses. It's all the do. Everyone else who was in and out of there all day got their IV on the first try. They finally managed to get my line started in a deep bicep vein. She could feel it but not see it and figured nobody had destroyed that one yet. She said there's just tons of scar tissue in the veins in my hands, forearms and inner elbow where everybody always tries to stick me.
And sangye... I DO have a needle phobia. The pain doesn't bother me, but if I see it I'll be out cold. :/ I just close my eyes, look the other way and do deep breathing exercises til they say "Aha!"

Sangye
02-05-2011, 10:41 AM
Aww, I'm sorry you have a phobia. It sounds like you manage it okay, though. I know people who can't even get near needles. Must be awful.

The northern Arizona hospital I used to frequent used ultrasound to find my veins. That's how I learned where they are, which ones were good, and even learned that I'm missing some. My veins are very tiny apparently. They can only use baby needles for blood draws!

drz
02-05-2011, 10:58 AM
Sangye, that is CRAZY!!!!! 9 1/2 hours???!!! WOWZER, poor you!!!
My husband has taken my blood before at our clinic and sometimes he has to use the childs needle to draw blood.

I think I would have more than a needle phobia after such a experience. It amazes me you two can even tolerate going for such procedures. You guys are tough! Most people would be :kittyscared:

Sangye
02-05-2011, 11:34 AM
LOL! Well that 9.5 hr one was my breaking point, actually. I was in the ER with some GI complications that made it very hard to sit still while they dug. I didn't realize how much time was going by because I was so focused during each attempt. It was nuts-- hospital policy required me to have an IV in before I was admitted. They finally got one in, and it blew on the way up to the room. The admitting doc insisted I'd need another one in, but it was 2am and I actually growled at her.

misskay
02-19-2011, 09:09 AM
Had my 2nd rtx infusion today. The last one wiped me out for about 10 days. Really tired, really aching, headache. Hoping this one won't be so bad or last so long. Doc said the fact that I actually started feeling better a couple of days before this infusion was a great sign. He said it's usually after the 2nd infusion that folks start to feel better. Also had bloodwork this morning before the infusion, so hopefully the numbers will have improved since the last check.
I tanked up on water yesterday hoping it would be easier to get a good vein... no such luck! 6 blown veins immediately. 7th one was the charm lol.

elephant
02-19-2011, 01:36 PM
Misskay, sounds like your are doing good. Hang in there and watch the Wegs fall in a deep coma. :)