My RD visit... | Arthritis Information

 

I had an appointment yesterday with RD.  She said the Humira was not working for me and feels I should move onto another drug.  She was pushing for Orencia or Rituxan but she was concerned about the lung issues with Orencia and I didn't want to make the move to Rituxan just yet.  We decided on Cimzia because it is least similar to Humira and because it works (or not) pretty quickly and by next visit, I will know if it works for me.  Also, she said I could take a shot every 2 weeks if I didn't feel I was able to make it month to month.  She also upped the sulfasalizine to 3 500mg 2x daily, telling me I can work up to that dose by starting with 2 500mg 2x daily. 

She was shocked by how bad my feet had gotten since she saw me in early Dec., really surprised by the number of new nodules on both feet.  I hope this works well for you. I understand the disapointment of a crash, after things had been going so well. Well I see it as a good sign. You had the cabability of doing well so it can happen again.

milly2010-03-09 12:25:38Awwww, Waddie, what a let down. I wonder, do we all go into flare mode after the Pred wears off? Oh Waddie! I wish your news was better. All I can offer is a big virtual hug (((( waddie)))). Also I'd be happy to bake you some virtual cookies.... they are calorie free.
Better days are coming. Hang in there girl{{Waddie}} best wishes with Cimzia.  I'm on it now with mixed results, I hope it is your magic bullet.

I wrote a  post about my Cimzia issues with Caremark - do be certain that whoever supplies your Cimzia gets you the prefilled rheumatoid arthritis syringes with the Oxo Goodgrips handle.  They sent me the Chrohn's disease self-mix vials, syringes and needles which was almost impossible with flaring hands.   They have no customer support like Humira either, which makes it doubly important to get the Oxo Goodgrips syringes.

Best wishes to you.


Thank you, ladies,  And along with Leila's cookies, I offer you virtual chocolate cake!Leila and Mel.....take pity on me....I'm diabetic and would KILL for ANY kind of cake or cookie! So how about mixing up a huge bunch of virtual goodies and I'll envision all of us lolling around consuming the calorie-free stuff. Ah yes, just the imagine of that makes me feel tons better.

I hope the cimzia is your med.  You deserve to feel better!!!   I hate the fact that we have to try all these different med combos just to try to get through the day.  You would think there would be an easier way by now.  Sometimes I feel like a giant ginea pig!

Hope those feet feel better.  I have been lucky in the fact that my feet are doing pretty well.  I can only imagine how hard it must be to have that problem.  not fun... 

 

 

 

oh girl....... so sorry to hear of the let down.....
I hope the new meds are just what you need to get back up to the comfy spot...  It's really rough when you've been there and then aren't.... just out of reach but within sight!  You'll have it!!  I know it.  I hope this is "it".

Hang in there Waddie....  Next RD report will be  positive...... I can feel it in my old RA bones!! Hi Waddie, alright Sam.. you got it!! A big batch of my virtual chocolate chocolate chunk cookies and Mel's heavenly chocolate cake. Also included would be whatever's cold and on tap... because that's what I really want today Oh, Leila, am visualizing and chewing on the yummies as I write this. Heavenly, just heavenly. Yum. Thank you and Mel. Sam12342010-03-10 15:03:45Hi Lev, thanks for the well wishes!  I think Rituxan is, most likely, in my future.  I haven't made the move to Rituxan because I didn't want IV infusions; I would rather inject myself at home.  I know this may seem silly, but an all day infusion would be very inconvenient for not only me, but also for whom ever would drive me to and from the infusion appointment.  I was just hoping something easier for me to take would work.

I am glad Rituxan works so well for you, do you mind if I ask you some questions about Rituxan?  I would be happy to hear from anyone else who also takes it also.  Had you tried other drugs prior to Rituxan?  How long, on average, does your infusion take?  Do you also take MTX or steroids?  Do you have to have antihistamines or steroids prior to an infusion?  Do you ever get headaches from the infusions?  Do you have a port?  If not, is the IV in the arm? Is there a loading dose?   For what reasons would you have to skip a dose?  I also wanted to add that I got an email today from RD, (she emails me to let me know of any positive or negative test results) and she said my kidney function was slightly below normal.  I asked for a copy of my numbers, so I should get that in a day or two.  She said she would monitor it and if it continued to drop, we would investigate more thoroughly next visit.  In the meantime, I am to avoid NSAIDS.  (I don't take any, other than one full strength aspirin daily) 

Ladies, pass me a cookie, please?   Waddie  [QUOTE=waddie]I had an appointment yesterday with RD.  She said the Humira was not working for me and feels I should move onto another drug.  She was pushing for Orencia or Rituxan but she was concerned about the lung issues with Orencia and I didn't want to make the move to Rituxan just yet.  We decided on Cimzia because it is least similar to Humira and because it works (or not) pretty quickly and by next visit, I will know if it works for me.  Also, she said I could take a shot every 2 weeks if I didn't feel I was able to make it month to month.  She also upped the sulfasalizine to 3 500mg 2x daily, telling me I can work up to that dose by starting with 2 500mg 2x daily. 

She was shocked by how bad my feet had gotten since she saw me in early Dec., really surprised by the number of new nodules on both feet. [/QUOTE] Sorry to read that you aren't doing well

 

I hope the Cimzia works quickly for you and you are back to your old self soon

 

 

Just thought I'd share this for you...

 

http://www.webmd.com/rheumatoid-arthritis/news/20090519/fda-oks-cimzia-for-rheumatoid-arthritis

 

 

Take care,

 

Waddie,

 

I started off with prednisone and mtx. Eventually going up to 25mgs each. I then graduated to Enbrel and mtx, 25mgs and actually got down to 8mgs of prednisone for a short time but quickly went back up to about 15 mgs of prednisone along with the enbrel and mtx. I was quite happy with that being so functional again but the doctors weren't impressed and were concerned with the high dose of prednisone and switched me to humira. Altho i did get some relief from the hmira, it would wear off and my last week was terribly painful. I was switched back to enbrel by a pharm d, imagine that. At the next rheumy visit, Dr. Richards said that he wanted to switch me to either remicade or orencia. He said for me to take a month and research them both and for me to make my decision whether to switch from enbrel and to which one. I decided to leave it up to the doctors and told them so at my next visit. Dr. Richards said that he would really like to switch me to rituxan and gave me the basics and then pulled up the info on the computer and let me read it. He asked what i thought and I said that I would try it. He said that he would schedule it for two weeks and if i changed my mind before that to let him know. I went ahead with the rituxan. I have had no real problems with it. I do however get a small sinusitis which goes away by itself. the infusion is quite relaxing. They just put a small needle in a vein just above my wrist, you know the one with the hookups on it, so that they can just attach the meds as needed, I don't know what they call them. When the infusion is over, they pull the needle out and put a smiley face bandaid on it. They give me a bena dryl for reactions which just about knocks me out and then they moniter my vitals every half hour. We are never out of sight of the nurses. The first infusion takes about 6 hours and the second infusion takes about 4 hours. Very relaxing, never had a headache. But, I quit the mtx and went from 25mgs of prednisone down to 6 mgs and am still weaning. The last mgs of prednisone are the hardest to get off of. But i take no other drugs. I hated giving myself the injections (enbrel and humira) and sometimes took up to an half hour to inject. I'm not sure what a loading dose is and I'm not sure about having to skip a dose. Oh, one time they did give me 40 mgs of a steroid prior to infusion but nothing since, just the benadryl. I have never seen anyone have a reaction to the infusion.

 

LEV

Oh, by the way,

 

I'm not bringing any food but will bring Max, my pegasus and let him give each of you the ride of your life if you wish.

 

And on that jingle, jangle morning, I'll come fly with you.

 

LEV

levlarry2010-03-11 07:29:38Thank you, Lev, for putting things in perspective for me.  It seems our medicine ladders have been very similar.  I am glad to know the Rituxan works well without the MTX since I can't take it anyway; its been very disappointing looking for an adequate substitute.  I don't know why its always so difficult to take that step to another medication when what I am already going through RA wise is already so painful!  Thanks so much for that mental boost, just knowing what the possibilities are... well, its the jingle, jangle morning I look forward to!

Lynn, thank you for the research!  It helps so much! I should be thinking of infusion day as a relaxing time for myself rather than an unpleasant chore.

Cookies, red hats and a Pegasus ride, what more could we want .......just clinical remission!! but I'll take the others just in case remission isn't in my cards right now. 

Waddie, it's never easy making the medication decisions.  In fact, these decisions are some of the hardest decisions we have to make.  Sometimes it takes awhile to make the right decision even though we're in pain and dosing ourselves with extra pain meds and Pred.  It doesn't make sense but that's the way it is. 

 

I've spent over a month trying to decide if I wanted to start Simponi or Orencia and have decided to start Simponi.  I didn't want to skip a med that might work for me.  Humira worked beautifully for 2.5 years until I had to stop, restart, stop, restart due to a gum abcess.  I've had success with the TNFs and decided to stay with them for the time being.  I'm 64 years old and am really reluctant to go on Orencia and Rituxin.  I'm in my comfort zone with the TNFs and there's not much research that's been done where it's broken down in age.  I'm not sure how our aging bodies will respond to these meds and I don't want to be in a small % of users that research may have overlooked.  You're younger and my concerns aren't the same as yours.  Decisions, decisions...we all sympathize with you.  You have good doctors and a good working relationship with them, so I'm sure you'll make the best decision for yourself. 

 

I think we're all  some of the bravest people because of the choices we have to make.  Here's to bravery.  Lindy

P.S. When I had Remicade infusions I met some really neat people and chatted most of the time.  I met doctors, the head nurse in surgery, a chef, several artists, and numerous others.  It was an interesting time and I still keep in contact with the surgical nurse.  It's also an opportunity to talk about RA and how it affects different people and how they've responded to RA and the meds.  Lindy [QUOTE=SnowOwl][QUOTE=levlarry]Oh, by the way, [/QUOTE]
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