So glad you got treated well and found medical professionals who live up to that title! Grrr for the folks at the first hospital for not treating you as you should have been in the first place, but good for you for insisting on trying a new infusion center and finding one where they pay attention and are pro-active like that!!
Lisa
I'm so glad that it went better this time. It is amazing the difference nurses can make. When I go in for my solumedrol infusions they typically try one stick and then call over to the lab and one of the techs come over! I'm going on 9+ months since my last Rituxan infusion, love that goal of a year! Now if I could just spread out the steroid infusions??!
Hey Gretchen,
I like the idea of the lab techs. It still amazes me a little in that my neuro-infusion nurse has started an IV on my the first time everytime (except for once when it took two tries). When I was getting pulse steroids in the fall, it was a really nice boost. But the length of time Rituxan has lasted is really something cool. So totally worth the trouble.
Hi Lisa, Sorry you had such a hard time with those nurses, I can't figure out how they got though school with out knowing what to do. I never heard of this medication, would you reccomed it to others, it seems like my treatment isn't going any where I never feel any difference with my treatment, I even told my doctor to lets start all over so I can found something that will work, I would love to have some relief even for 5 months that would be wonderful. Can you time me any kind of side effects from the medication Take care of your self Susan
Hi Susan,
Sorry that your current treatment isn't working for you. What do you take?
I'm reluctant to recommend a treatment for someone specific, but I am happy to share that these (rituxan and methotrexate) have worked well for me so far.
Rituxan can have some serious side effects. Some folks (actually every patient I've talked to who has used Rituxan) have experience infusion-related reactions at least once. You can read about my first two infusions here and here.
There is increased risk of infection and low blood counts. Very rare, but there is a risk of serious brain infection also. These aren't all of the possible negative side-effects, but just some.
For the infusion-related reactions, there are things which are done to try to make them go away.
If you have more specific questions about Rituxan, I can try to answer them.
Hi Lisa
After having read you previous post on influsion, when my rheumie said it's time for me to start Remicade I said no thanks, I'd like to stay with Enbrel until I'm completely off of the prednisone. I had a very awful reaction to methotrexate, so the main ra drugs must do a good job for me, and my rheumie is just moving me up the ladder with each visit. She was very surprised when I said I'd rather wait - surprised too that I spoke up for myself.
that I have you to thank for. Infusion rather scares me to death!
Laurie
Oregon Coast
Laurie,
This is such an awesome compliment. I'm so very glad that you spoke up for yourself!!! It's important that we participate in our own care and health-related decisions. I hope that the Enbrel will work for you as the prednisone is tapered. If you do need Remicade someday, I hope that it will work too.
Again, good for you for speaking up for yourself!! Way to go.
I am so sorry about your first hospital insident. What a awful ordeal for you. You are absolutely right about the nurses in the first hospital putting their egos and attitudes way before you, the patient. The pain and stress on you was completely incalled for.
The second hospital learned from misstakes, planned ahead and had your best interest at heart. Thank goodness!
Little or rolly-polly veins can be tricky. But they are the most uncomfortable and tricky for the owner of them! Nurses, PA's and Dr.'s forget that.
I hope you never have a terrible experience like that again. Tickle those Ivory's Girl!!! :)
Rena,
The performances this past Saturday went really well. These hands and fingers held up. :) Second round is in four weeks.
The 2nd infusion experience at the 2nd hospital really has given me hope that it doesn't always have to be such a big deal. It just takes experience, knowledge, and a little planning.
Dear Lisa,
First of all, it's so generous and brave of you to share this whole experience with us so completely. I was cringing one minute and raging mad the next. I've had similar frustrating visits for years, though the only drugs I've tried so far are Humira (horrible allergic reaction), and Embrel. On the Embrel, after the first dose, I had the miracle we all hear about and dream of. It was almost like I didn't have RA. I actually went to a dinner party, full of energy (weird!)and announced to all my dear friends that they didn't have to worry about me any more, that I had found my cure.
This lasted for about a month. Then I broke out in truly hideous blisters all over the soles of my feet and the palms of my hands. First blisters, then spreading, then the skin would harden and peel off. Very painful. It started with the Enbrel, never had anything like it before, and it would get worse with each injection, but all doctors just say things like "That's unusual," and swear that it has nothing to do with the Enbrel.
At the same time, the Enbrel just stopped working. More pain, more fatigue, and these horrible skin eruptions and peeling.
I had hip replacement surgery in September, and so (wish the docs' agreement) went off the Enbrel for 2 months before, so that my immune system would not be depressed. Then, after surgery, which was a huge success, I have been unable to make myself go back on it. I am just extremely distrustful of all of these biologics. I know that they are very toxic, and that doctors truly do not know yet what they do to us long term. If a toxic drug is NOT giving me any relief at all, I don't want to take it, and I don't want to try a new one.
Truly, and my RA is long term and severe, the only things that make my life at all workable right now is a strict diet (this really does help), and pain meds. I finally have a kind doctor, though very busy and not easy to contact, who will give me the needed pain meds without treating me like a criminal (that's new), and without requiring that I take a biologic to "actually treat" the disease.
I consider everything that I do treatment. I do yoga, I try to avoid stress, I avoid sugar and refined carbs, take tons of supplements, and have the pain meds so that I can walk, get around, and have enough energy to get through the day, mostly. They don't make me sleepy, they don't make me euphoric, they just ease the pain and give me some focus and energy. Why, I've always wondered, isn't that treatment?
I've had many horrible experiences with doctors, and where I live now (where I moved for this reason) thank heavens I finally have a free health care plan and was able to get my surgery, and anything else I need. My doctor is kind and listens, but is often just too busy to really be very active in my case. That's up to me.
I don't know. Isn't anyone else scared, seriously, of all the anti-TNF drugs and anything else coming along? I don't trust the pharmacutical companies as far as I could throw them (not far!).
I know my condition is getting worse, and probably always will. I concentrate on keeping my mind stable and sane, and inventing the best kind of life that I can have, with meaning and pleasure, and it does take effort. I do have bad days, for sure.
What do you think? Do you worry about the drugs that are causing you to have to go through these long infusions? Is it worth it? Have you researched just how toxic they are? I'm really interested, as I do feel quite alone in this.
all best,
Susan
Susan,
That is so exciting to hear that the hip surgery went well. Kinda makes the huge move worth it.
Sounds like your approach to treating your RA is working for you right now. Some people are just too sensitive to some of the medications. That doesn't mean that a different med might not be the right one for them.
You ask about my thoughts on my treatment. The infusions may sound like a big deal, but honestly, the trouble is totally worth it. My medications are working for me and are keeping my body healthier now and hopefully for the future. When the medications work, I don't really think of them as being toxic. But that's just the way I see it (not scientifically based, just personal).
What specific dietary changes have you made? Did you notice an immediate benefit or did it take awhile to start working? I agree with you on using exercise, stress-reduction, etc are good treatment choices as well. Each of these approaches are important!!
you're such a drama queen... 
(sorry, had to)
seriously, OMG! I got palpitations just reading that - good thing you only have to do this every eight months or so, huh? Which is one of the things I took away from reading this piece. The miracle of a medication you only have to take every eight months. As well as what difference it makes when you have professionals who are committed to giving their patients/clients the best care possible and therefore plan ahead and leave their egos out of it. So glad you switched infusion centers!
And then there is the fact that pediatric nurses are rock stars. Thanks for recognizing them.
Lene,
Pediatric nurses are definitely rock stars! My aunt is a nurse and she spent time in the neonatal ICU for a few years. Those little babies certainly do have the tiniest of veins of all of us.
The attitude of the medical professionals at the 2nd location was strikingly different than the first, even when things were not going so well at moments.
I recognize that many people would have given up on this treatment if they had experienced the infusion-related reactions I have. But like you realize, the benefit of the treatment has been so completely obvious. Every 8 months is not so bad. Last fall I went in for monthly solumedrol (steroid) infusions for my MS. Even that was tolerable since the benefit was obvious.
What we go through to try to feel better and protect our futures. Gotta be strong to live with a progressive, debilitating, chronic illness....that's for certain.
Dear Lisa & Lene,
And I am a drama queen too! I know it, trying to work on that. I too think pediatric nurses are the best thing ever in the world. I always ask for them when I need injections or needles of any kind, because they are so used to teeny veins like mine, and also, they make it (most often) part of their mission to be kind.
So I give them a shout out too!
Anyway, I'm in the process of gradually lowering my pain meds, which is great, because I won't feel so utterly controlled by them, but it does involve some months of not feeling completely great (to put it mildly). So wish me luck! I'm determined!
Also, many many thanks to you both for being such excellent contributors on this sight, you just don't know how many people (like me) you help on a daily basis!
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Hi, Lisa.
I almost cried reading the account of your first experience. How awful. I just don't understand why people who don't care about patients are nurses, do you? So happy you found a better situation. Sharing this with the community may help someone else to make the decision to find better treatment.
I am really amazed by your ability to handle all of this, Lisa. I know it isn't easy.
Blessings,
V
Thanks V,
I was very much impressed with the nurses at the second hospital. I'm so glad that I switched! Hopefully, if knowing that at least one other person spoke up and made a change in their medical care, I hope that those reading will find the confidence to do the same.
Long story short: Called rheumy on Friday morning. Had to leave a message w/the nurse. Told her I was in a lot of pain and needed prednisone.
Friday night at 5 p.m. received voicemail on my cell from nurse saying rheumy wanted me to go to my PCP for a re-evalutation before he would prescribe prednisone.
Spent the entire weekend at a level 9 pain level. Called orhtopedic doc's office yesterday morning. Got medrol pack and celebrex 200 mg immediately and an appt Friday morning.
Called rheumy's office this morning and cancelled my next scheduled appt. My ortho treats me better than any doctor I have ever gone to. I am turning my care over to him. I have had two bad rheumy's. I don't have RA. I have EOA which is essentially really bad OA w/bone erosions similar to RA bone erosions. Why are there so many bad rheumatologists out there, Lisa? I am done, done, done with that man! I suffered all weekend for NO good reason.
Thanks again for this article. BTW, great new pic. I like your hair.
V