Buttercup, I have not needed Rituxan yet. I think talking to people at The Myositis Association www.myositis.org would bring a broader group that may have a lot of experience with the med.

Your doctor is familiar with your health. If the medication is promising for eliminating the high doses of prednisone, then it might be beneficial. I would certainly ask if there are any meds that are much cheaper that could bring the same results. Example, Would adding a second sparring drug do the same thing as a Rituxan infusion? How much is this infusion going to cost me? Know up front the total cost for you - No surprise charges later!

I hope you find the answers that will be helpful. I will put in some prayers for you. Good Luck with your decisions.

Meow,

Thank you so much for your advice and your prayers, trpt1.

I've got some time, so I'm gonna do lots of research on Rituxan.

Purr,
=^.,.^=

Buttercup,
Ultimately it comes down to your decision of course, but do LOTS of research. Rituxan is serious stuff. Sometimes serious stuff is necessary, but sometimes a second opinion would say otherwise.

My rheumatologist told me I needed Rituxan, and I never went back to her. After researching I decided that medication was way too risky.

How do you feel? 306 is much lower than my CPK level, but I've known people that feel worse than me with lower CPKs.

Hi Buttrrcup. Sorry yo read your post. Rituxan is the third line of defense when Prednisone and Dmards have not brought your disease into line. You have had this disease since 2011 and are still on a large dose of Prednisone with rising CK levels. This is a hard place for you to be but this drug is to help people just like you. I wish you well whatever choice you make. All the very best. Autumm

Buttercup, Yesterday I had my 4th Rituxan infusion. Several years ago I had the same. According to the research I've done, the results show in about 6 weeks, and last up to 9 months. That's good enough for me. In 2006, when I had Non Hodgkins Lymphoma, It was a part of my chemo treatment as well. It has always been helpful to me and I've had no side effects. The only unpleasant thing I'm now dealing with, is the insomnia related to the Solumedrol that is also given by infusion just prior to the Rituxan infusion. But this lasts only one or two nights. The protocol includes getting Benedryl and Tylenol about 30 minutes before the infusions. Since having gone through this a number of times, and knowing that these are precautionary measures, and I already know I'm not allergic to the Rituxan,I've concluded that I don't need the Tylenol and Benedryl. The latter gives me restless leg syndrome, which is unpleasant. The whole procedure takes about 6 hours and is really quite comfortable. It's important to be well hydrated before the infusion, as well as during and after it. All medications are risky, and this is no exception. But it is a God-send for many people. Certainly the damage Prednisone does to our bones and other body functions, has to be considered very carefully as well. I haven't taken it for a number of years, and my CPK is just over 100. I did Methotrexate injections for a while, but their side effects made me choose to discontinue them last summer. So now I get monthly IVIG infusions and have just concluded this 4-week Rituxan series. My extreme fatigue has disappeared, for which I'm so grateful! Since I have Undifferentiated Connective Tissue Disease, I have numerous issues to contend with, but the Rituxin has made it easier to cope.

Meow,

Thank you all for you kind advice. I'm still trying to wrap my head around this treatment, so I'll be re-reading the posts many many times before I have to go get #1.

I have a bit of time, as my insurance hasn't okayed them yet.

Hugs to everyone...Purr

=^.,.^=

Buttercup, I too had Rituxin as part of my treatment for Non Hodgkins Lymphoma. I had remission from my lupus for 2years. Now with other issues arising my treatment plan is the possible infusion. They have told me I could have relief for 6 months ton2 years before having to repeat. I agree with pluggingon, the side effects of all med are not good but the disease needs to be treated the best way possible for you. The disease left untreated is far worse. Thankful to my knowledge I had no side effects in he past.

I am receiving info today from my Rheumy on help with costs for the infusion. Although it is covered by our insurance and has been approved I still have my co-pays and deductible. Our plan is 60-40. I will be happy to share that information with you if you would like. Let me know.

My thoughts are with you as you make these difficult decisions.

Tricia2661

Meow,

Thanks, everybody, for your kind words. Today, I made the appointment for one treatment. It will happen on 2/12. My rheumy wants me to take 3 more (1 every Wed), but I just can't commit to 4 in a row until I see what this 1st one does to me. I'm still very scared of this drug. Going into it slowly brings a bit of calm.

Thanks for all prayers, too...Purr
=^.,.^=

Prayers for you. I hope it helps!

Glad you decided to give the infusion a chance. If you have any problem, your doctor would not insist on you continuing, I'm sure. But it's not likely you will. And I certainly hope you will get help with your copay! Let us know how it goes. You're in my prayers.

Meow,

Thanks, friends, for your prayers. I'm not as scared as I was, but I'll be glad when it's in the past. Everyone's encouraging words/advice has helped me feel a lot better about getting the drug.

Purr,
=^.,.^=

Said a prayer for you this morning as you will be receiving infusion today.

Tricia

Meow, hi Friends...

Surprise, surprise, I didn't experience any major side effects! I thought sure my stomach would rebel, but no...I felt fine, slept through most of it, and it too 6 hours.

I'm amazed, grateful, and relieved.

Thanks, everybody, for your wonderful care. I love this site. I get so much info and empathy in my fight with Poly.

Have a great day.
=^.,.^=

So happy for you, Meow1 Thanks for letting us know you did fine. I get lots of sleep too, when I have my infusions. It doesn't affect the stomach, I guess, since it goes into the blood stream. Hope it will also give you good results for your health.

Well done Buttercup. Am so pleased it went well. Autumm