I had Dr. appt last week and she was actually nice to me for once except for asking me if I had gained weight since I last saw her.
She said that I was doing good. Im now on 100 mg of Enbrel a week and down to just 1mg of prednisone a day but still am taking the vicoden daily for pain. It doesnt seem to bother her that Im still taking vicoden!!!! I've been taking it for about 2 years now. I told her that Im still in pain but not as much as before and I still have trouble walking up stairs. She said that the Enbrel is working good and is reason that I can ween to 1mg of the pred. She asked me if I wanted to go and volunteer for a study program and I would be paid .00. Well, heck yes I said. But then I didnt know what to expect. I've never done a study before. Then she asked me if I wanted to try Orencia.
Hm.......dont know about that one either. So, I thought I'd ask some of you if you have taken orencia and how does it work for you.
I kinda like the fact that you only take it 4 times a year!!! But Im not sure if I like the idea of going to the hospital and getting thru and IV.
Should I try this new medicine????
Why is she wanting to change you if she thinks Enbrel is working so well? That sounds strange to me.
I've recently been taken off Humira and my doctor asked me to consider Orencia or Rituxan. I think Orencia a every 4 week infusion. You better double check on that one. Rituxan is only every 6 months. Also and infusion.
Their both very new which worries me. I haven't decided what I'm going to do yet; but I think I've almost ruled Orencia out due to the frequent infusions. I have to travel about 45 mins away to my doctors office. That's a hassel. I don't have time for that every 4 weeks with work.
Let me know what you learn.
I really dont know why she suggested Orencia.
I just told her that I still dont feel great even on the 100 mgs of
Enbrel and that's when she suggested the new medicine.
She told me I would take it every 3 months!!!! Oh geez I need a new doctor
Momofthree,Yeah; I do think either you heard her wrong; or she's mistaken. I guess there's always a chance she'd only give it to you that often; but I doubt that.
Google it and look at their website. Print some information that says how often you take it. Take that to the doctor with you next time you go and show here where you've read differently than what she's told you.
Yep looks like I may have heard her wrong. I called the nurse and she said it was every month. She also told me that my doctor wasnt all that happy with my last visit that im still in pain and she wanted me to try the Orencia because she said it has great results on taking mostly if not all the pain away. Has anyone had this result?? I feel like Im always going to have pain. It might be because im down to 1mg of pred. But I dont want to increase it Im doing good to be this low.Momofthree,How long do your infusions take Lou? Could you go right back to work afterwards?
My main concern is the amount of time I'd have to be off work for that commitment. That's the main reason I'm leaning toward Rituxan.
Although once every 6 months sounds dreamy to me! After doing weekly injections for 2 years I'm so over that!!
OMG!!!! No Pain!!!! are you serious????? I just dont know what it feels like anymore. Lovie, what every six months?? Please let me know!!
Injections? infusions?
mom
I had my first infusion of Rituxan in August '06 and 15 days later the second infustion. 6 hrs on the 1st infusion, about 6 hrs on the 2nd infusion. The set up was really a pleasant experience, I have been able to reduce my prednisone to 5mg a day. The treatment effects are supposed to last 6-9 months reduction of symptoms. My rheumy said that he hopes it will forever. I have other chronic illnesses, but I can say that if all I had was the RA, I would have ran a few marathons by now.
Smhiles
I was in a clinical trial for orencia....and mtx. 20 mgm mtx and orencial once a month....
Because of the mtx making my liver counts go out of site...I had to be withdrawn after 5 months
I really didnt see a big difference...the rheummy told me the study showed that orencia took longer to work than they expecteded.
I did ok on it....no real side effects.
Good luck
Justtoday,
I have RA and was diagnosed in 03. I take 2 shots every Sunday morning. I was on MTX for awhile but my hair kept falling out. Then I went to ARAVA and noticed no results still take that off and on. I was on 10 mgs of pred. for a few years and finally got to ween down to 1mg. My Dr. says it's because of me taking 100 mgs of Enbrel. When I was on 50mgs wkly I was only able to ween to about 5mgs and that's it. Im still in pain daily. I take Daypro too for inflammation. Daypro doesnt help either. The only thing that breaks through this pain is vicoden. And my Dr, says just take it when you need it. Well, I need it round the clock!!! Im afraid to ask for anything stronger. I have an aunt who swears by oxcycontin. She has fibromyalgia. I dont know if im ready for that yet. My Dr. wants me to try Orencia she says it will stop my pain. She doesnt want me to increase the pred. and I dont either.
She wants me to think about it for awhile. Read up on it and ask around before I make a decision. See its 8:30am here and I just took 2 vicoden at 5am and the pain hasnt gone away yet. I hope im not getting worse. I would usually feel relief by now.
MO3~Rituxan is what I was referring to only being a twice a year infusion. (not counting the double infusion weeks apart; I'm calling that one treatment) Smhiles~Thanks for your in put on that. That's just one more confirmation on this medication that's helping me decide. I've only heard good things about it so far; but that's not been the case with Orencia. I'm hearing mixed results with that.
MO3~Has your doctor mentioned Rituxan? My doctor wanted me to research both Orencia and Rituxan. They are both different than Humira, Enbrel and Remicaide that's why he's suggested them.
I think you are wise to want to stay at a low dose of Predisone and the ultimate goal should be to get off of it all together. It can cause horrible long term effects that can't be reversed later.
Thanks for starting this thread. I'm getting a lot out of it.
Oh yes, I too am getting alot of info from this thread. Lovie, Can you give me some info on the Rutuxin?? No, my dr. didnt mention that one to me. Do you have to miss work when you do an infusion? I just need something to stop this pain. Do feel better? Im sorry for rambling.I haven't started it yet. My doctor took me off Humira 4 weeks ago and we're waiting to get that out of my system to see if that was what was casuing my problems. (Numbness/tingling)
I think I'm going to have to miss work for the Rituxan infusions. It takes a long time to get the infusion and considering it's 45 minutes to my doctors office where I'll have to get it I'll have to be off. That's the main reason I don't want to do Orencia. I can't really get off that often. It's a quicker infusion though. About 30 minutes to an hour I think I understand.
Google Rituxan and see what you come up with. My doctor gave me info and I spoke with a friend from here that's on it. T-Bird; but she's not on too much. I can google it and see what I find. Hold tight.
http://www.drugs.com/rituxan.html
Some good and bad info. I'm just googling and pasting. You'll have to do the same and see what you find.
http://www.medicalnewstoday.com/medicalnews.php?newsid=51006
Looks like it's used for cancer as well as MS & Lupus.
http://www.itppeople.com/rituxan.htm
http://arthritis.about.com/od/mabtherarituxan/a/factsofritux an.htm
I'm going to need to read all this too. I haven't read all of this stuff. Just doing a quick search before I leave for dinner. Let me know what you think. I'll check it out later tonight.
I had my Rituxan infusion the end of Nov and the second one two weeks later. For the first one they have to give the medication very slowly and monitor you to see if you have a reaction. I was there all day. For the second one they were able to give the medication much faster so I was there for about half a day. They did give me benadryl with it and that made me sleepy so hubby had to drive me home. Hoping you all feel better soon.How ya feelin now Joy?OMG Lovie thank you so much for the info!! I cant stop reading!!!
Joy I hope it works for you!!!
I didnt realize all this info was available It is kinda scary though. the side effects I mean. Im at the point where I would try anything just for relief!!
Yes; often the more you read there more scary it becomes! Do you know how to do a google search? Just go to google.com and type in what every in the search box. There are a lot more articles there I just pulled a few before I left for dinner.
There are a few with reported deaths asscoiated with Rituxan; but I think you can find that on about any medication you search. Aspirin has many deaths associated with it; so I guess you just have to form the best opinion you can. You can't let some of it scare you away from it. They have to list all the side effects; but the majority of them are unlikely to happen.
thanks!!!
Why were you put on Rituxin?? Were you in severe pain and nothing else worked? Have you had RA a long time?
I assume you're talking to me.
I haven't started Rituxan yet. I'd been on Humira for the past two years. Late this summer I reported to my doctor that I was having some tingling/numbness in my leg, feet....and then later arm and hands. He said he's had three patience that had simular problems and once he stopped the Humira the symptoms went away. One of the "rare" side effects of Humira is nero symptoms simular to MS. He's asked me to stop the Humira and see him again at the end of 6 weeks to see if stopping the Humira actually stops the problems. If so he wants me to consider Orencia or Rituxan because they are in a different class of drugs then Humira, Enbrel and Remicade.
I go back to my RD on Feb. 19 and I'm to decide at that time how to proceed. I'm still on MTX; and up until last week I thought I might be able to get by with a slight increase in my MTX; but I'm starting to think that's not really going to be possible. I'm having more and more symptoms and some that I haven't experience since the onset 13 years ago.
The only biologic I've tried has been Humira and I've had great results with it; but considering Enbrel and Remicade are very simular with simular side effects I won't be able to use either if it's determined that Humira is what's caused my complaints. Although my problems haven't gone away completely they have decreased greatly. I'm starting to agree with my Dr. that it is what's caused my problems.
I am going to question my doctor about some research I read in regards to the difference in how sero-neg and sero-pos patients respond to Rituxan. I've read some research that indicated that even though sero-neg patients did have a good response to Rituxan, it wasn't as good as those who are sero-pos. There is so much info on the web so I just don't know what is true....but I am going to ask my doctor her take on it. Best of luck to you all.To: LOVIE I have been taking Orencia since Sept 06. I was doing really great, no pain the first 3 months. But Dec 06 I started feeling stiffness in my fingers and toes. I'm not knocking it. It is still working or I would be exhausted.I'm not sure what I'm going to do as of yet. Some days are so much better than others. Today is one of those days where I think I'm going to try just upping my MTX back up to 25mg weekly and see how I manage. Talk to me tomorrow and I might be trying to figure out what to do next. Things change so quick with this stuff.
If I have it my way; I'll put off making this choice for as long as possible.
Course I that's what I did with Humira too. My doctor talked to me about it for 6 months (3 Dr.s visit I guess) and ended up giving me predisone and cortisone shots before I finally broke down and agreed. I don't want to get to that point; but I don't want to jump the gun either.
Even after all of these years I still want to believe I can make it on less medication thans been prescribed at times. It's almost like i have to prove it to myself over and over again.
Hi again everyone,
I dont think I will be trying Orencia. I think I'd better stay with what im on for awhile or maybe just pain meds. The reason im saying this is because, well I hope you all dont mind but, life for me has been down in the valley lately. My husband asked me for a divorce Jan 15th and that's okay cause it has been long time coming. We have both agreed that it would be best. He has never really been any kind of support system for me the whole time we were married. I realized that he and I have never had anything in common. He hates everything I like, he downs everything I do. So, why did I marry him in the first place? Hm...well it's always good in the beginning and when the dust finally settled his true colors came out. Im sure im not a dream to live with either. And, when I was diagnosed with RA he thought that was a joke. he didnt believe me, he thought i was just being a hypochondriac and using up the insurance going to the dr all the time. Well the point is, after Jan 15 I was all ready to start getting something going. I even posted on here saying something about how I was alone and needed some insurance info. I did that to get my self used to it I guess. I had so much on my mind like how am I going to pay for my meds, I cant afford my insurance from my job, and where am I going to live, and how am I going to tell my 12 yr old daughter who loves her daddy more than anything. My older kids are okay with it. They think we should seperate too cause we argue so much. They are from a previous marriage. I just dont want my youngest to be hurt but I know im going to have to face it. My husband says so what she'll get over it. He is such an ass! Well, while all of this was on my mind as i was driving home a few weeks ago I had a car accident we were both okay but i just wasnt paying attention and turned in front of a car who had the right of way. After that I bought new car and things went smoothly I thought, we, my husband and I were kind of doing better. He still nags and gripes but today took the cake. He emailed and told me how sorry and lazy I am because i DIDNT HANG UP THE PHONE!!! the phone was lost for about 2 weeks and it was found down in the couch pillow where I sit. He ended up buying a new one and blamed me for it. I know isnt that stupid? That's just one example of the immature crap I have been dealing for a few yrs.
Anyway, tonight on the way home I get side swiped by someone and they left the scene!!! I havent even made the first payment on my new car!!!! Along with about 5 inchs of snow on the ground.
Im glad you all gave me info on the Orencia but I dont think I will be able to afford it due to all of this mess going on. Im sorry to have rambled but it sure made me feel a little better guess I just needed to get it off my mind.
Thanks again
momof3
momof3,
I really do pray that everything will work out in your favor. We know stress can cause more pain and he may be a big part of that. Just take care of yourself and your children, hopefully, you have a good support group set up. I know about not having the husband (now ex) in support of you. Please, seriously evaluate your pain and get with your dr and take care of yourself, you will need to be here for your children. Don't worry about the next step for med changes right now. Deal with your pain, then marriage or divorce, and be sure you keep a support group to assist you for decisions that you will be making, relationships and pain are very emotional issues, I feel your pain in both aspects. (RA, MS, FM, CTS, Cubital tunnel, Peripheral Neuropathy, Migraines, etc). I thank God for sending me a good man that accepted me, my child, and my health issues with loving support. I hope this helps, stay encouraged.
Smhiles
BUT; the first go around you didn't have RA. Once you get all of this over with you'll see how much all this stress from a bad relationship affects your RA. It honestly makes you sicker.
Beg your husband not to drop you from his insurance until you've made other arrangements. You may be able to get by without these expensive medications now; but you want to be able to have access to them in the future. Without insurance you'll never be able to afford them. You'll have to figure out a way to get medical insurance if at all possible. Biologics can cost upward of 00 a month!! Who can afford to pay that? No one. With health insurance and prescription coverage you could get out for about in some cases.
We're here for you if you need us; don't forget that. Hang in there.....sounds like your husband is a real jack-ass! Work out a custody aggrement with him that will allow your daughter to see him as much as she sees you. It might not gain you as much child support; but if he's a good father in the long run you'll be happier for the time to yourself than you will be the extra money her being with you all the time would bring. It's best for her in the end too....especially if she's real attached to him. She'll be able to deal with the divorce easier if she still has plenty of time with him.
Oh god Lovie you just made me cry. It's okay though, I just realized that you dont even know me, any of you for that matter, and you all seem to care more for me than my own husband. Yes i am worried about my meds im so afraid that I wont be able to get them after he drops me from his ins. I think I need to get a laywer. I didnt need one the first time cause we didnt own anything and I just took the kids and left and a friend did my divorce for me. Im not sure what to expect. Dont know where to start. Thank you all for your support
Im so glad I can talk to you.
momof3
I don't want to add more stress to the situation.....and if your husband ever loved you he'll try to help you out with the insurance issues. I just know from all I've heard here and from my own experience; it's easier to get health insurance if you've already got it.
Surely to god your husband has to understand how serious this issue is. Although I know we have several friends here that are uninsured; this is a very serious thing and you need to make sure you don't let this issue slip.
I can not even begin to tell you how much this disease has cost over the years. There is absoluetely no way I could have managed without health insurance. All of the dr.s visits, labs, medications....and RA left untreated can become even more serious.
I'm sure your husband wouldn't want that to happen to the Mother of his children.
Agree to the Divorce; but keep it friendly. Once things turn UGLY men can become heartless. Keep in in your good graces until you are certain you've got things worked. out.
Let me know if I can help in anyway. There's not that much our virtual friends can do except give us encouragement; but lots of us have dealt with Lawyers and Divorce before. We might know something's you need to know. Just let us know.
Don't panic. That's very important: Don't panic. It's going to be ok. Just be smart.....and be nice; even when he's being a jerk. Men can be so vendictive.
Do you mean that i can keep his insurance even after we divorce?
I wonder if i can get it to work out that way?
Things dont have to turn ugly for him to be heartless but they wont
anyway. Yes im very nice right now. Maybe this is why Im always in so much pain. I never thought all of this could add to my problem.
I just thought the Enbrel wasnt working. I dont feel bad emotionally
I really cant tell what i feel i guess. But I wont panic I just want to get through this as easy as possible.
Momomofthree, I am so sorry about you troubles. My Mom and I have been in the health insurance business for years. We are all uninsurable with ra unless you can get on group insurance with an employer. My mom has sold insuranc for 16 yrs and works at a hospital part time for health benefits. She is divorced and has had a heck of a time with the insuance thing. She would even work at a job for 6 mos and then quit, take out cobra for 18 mos and then start the cycle over. Finally she found a job tht has benefits workin p.t. Most employers will not offer benefits to family members unless you are married. Can you call your husband's human resource office? I do not want to worry you but be smart about this and watch your own butt. Maybe if you got a good lawyer that would help. I am a mom af three also. My husband is in the military and was deployed when I was diagnosed. We sold our house when he got back and moved from Alaska to S. Dakota. The stress of everything has really made me much worse as far the arthritis. Stress is not a friend. I hope your husband will help you. Hope this helps and not stresses you out more. Cherie
The best suggestion I could make right now is to get a fulltime job with benifits. Can you work? I mean are you physically able to work?
In my state you have to be seperated for a year before oyu can file for an actual divorce. I'm sure he could still carry your insurance during that time. Once you are legally divorced I'm not sure. Probable not.
I was a stay at home Mom for years. Once we started having marital problems I knew weren't going to be resolved I started looking for a job. I have been very fortunate to find a fulltime position with great medical benifits and a liveable salary as well. It might be the best time in the world for you to start working on that.
Stall him if possible. Once he moves out the clock starts ticking.
You must stay insured. If you loose your insurance for even 1 day you will not be able to buy a policy on your own.
Get a lawyer now. It is complicated.
Oh no, no, I do have a fulltime job but I cant afford their insurance. That's the reason im on his. Im sorry i didnt make that clear earlier. If I cant afford my insurance im wondering will I be able to get some kind of help with my meds. what about those commercials about prescription assistance programs? Im wondering if they can help. I think he wants me to move out but i think id better stay put until i get advice from a lawyer.
I had my second Remicade infusion today and my first allergic reaction
A directory, www.needymeds.com
From the commercials, https://www.pparx.org
Pamphlet on Financial Options from Orencia.com (290kb PDF file) http://www.orencia.com/Splash/Includes/53BSA006_PFOG_WEB.pdf
I'm sorry to hear all this Mo3; but don't leave your home. Stand your ground. He wants the divorce let him leave. What does he want you to do? Take your daughter and go?
I don't know that much about divorce to be honest. I just wanted out of my first marriage and it was pretty mutual. We really didn't have much to fight over so there was no big hassel there. I paid a Lawyer 00 and said "I want a divorce, and I can't afford to pay you a cent more than this". He drew up the agreement and went to court on my behalf and pounded out the details with my husband (Who had no lawyer at all! He didn't pay a dime during the divorce).
Any chance you can find another job that would offer benifits? You might be able to qualify for government assistance; but it's hard to get even that I hear. You may indeed be able to get prescription assistance through the companies; but how are you going to pay for your doctor visits? Lab work? If you have good insurance oyu probable aren't aware of how much those visit actually cost. Had I not had insurance while I was a single mother I would not have even been able to make and appointment at the RD.
I don't want to upset or scare you......but I know these things are probable the not even on your mind right now with all you and your husband are facing. Maybe if you sit down and discuss it with your husband you can together figure out a way to make things work. Despite the fact that he wants a divorce; chances are great that he'd never want to see you suffer physically.
I never thought about the doctor's appts and lab work...Oh geez, I do have alot to think about. Hopefully it will all come together. Im just going to keep praying.
Thank you all again for your help
momof3