Cruddy appointment | Arthritis Information

I went in today for my Orencia infusion. The nurses noticed that I was moving pretty slow. I actually felt pretty rotten. So, dr. managed to fit me in.

He is not happy with the Orencia. I have been on it for a little over a year(Oct. 07). Main are of concerns being the chest, jaw, and eyes. He really wants me to start Rituxan. I looked over the information during my Orencia infusion. He knows that I am not happy with this decision. He came in quite a few times to talk with me and to see what I thought. He did give me a script for pred to get over Christmas. Also for PT for the chest wall inflammation. I think I will go ahead and try Rituxan. I just hate moving that far up the ladder when I am only 32. He also mentioned disability quite a few times. Not wanting to go down that road yet-I just bought my house last year and my little one is 5. I told him that I just needed to marry rich and then I could stay home. He did say that he would be happy to write a script for that. Seriously though, it is getting harder and harder to teach. I don't know what to do.

So, I am scheduled to start Rituxan next month. He also mentioned sending me to Duke Medical Center. He admits that he is frustrated by the chest and rib involvement and would like another opinion. I said not now but if we don't see an improvement then I would look into going over the summer. He said it would take a few days-testing and followups and all.

So, not quite sure I how feel about all of this. I was hoping to just get a prednisone script and call it a day.

Thanks for letting me babble.....

Becky

Nice to hear that your doctor has a sense of humor! I am so sorry. I hope you find something that works, and for a long time, and we will all keep hope that soon there will be something more permanent! I can't imagine how hard that is with a 5 year old and teaching, that must be exhausting.

Hugs!

What is going on with your eyes?

Hi Becky, at the moment, you just need to concentrate on getting thru Christmas, so try not to think too far in advance, what will be will be, I was like you, had to work, needed the money to pay the mortgage, but it became impossible, and when thathappens, you have no choice, but all in all I am happy and so is hubby, he had to give up work too, due to my kids being so young, baby was 3 weeks and older child was 4. I think the Rituxan will be a good idea for you, I will pray for you, keep well, hugs Janie. Eyes have always been an issue. Scleritis, espceleritis(spelling?). Currently-it is chronic iritis. I am starting to have damage occur-not good.

I am just frustrated. I feel like shouting "it's not fair"!! But of course, we all feel this way. Just makes me mad. I love my house, I love my little boy-we have a good life. Crappy RA. OK, I'm done.

Becky - I feel with you, its so hard as this disease is so relentless. You might be done for now, but we all know it comes back again. The acceptance of what this disease does to us is the hardest part. Enjoy Christmas, enjoy your son and home, take a deep breath, and regroup in the New Year. We are all pulling for you. Take care ~~ Cathy PS We need good teachers like you, so I am positive you will finally get a med combo that works for you. I gave up, and then it appeared, for me. You have every right to yell it's not fair! I didn't know you were so young. How frustrating to be feeling the way you do despite the meds you take. Sometimes things look very dark and then completely turn around! I'll be praying that it happens for you. Hang in there. We're here for you. Good Luck !!(((((((((((((((((((((((((rocckyd))))))))))))))))))))))))))))Thanks guys.

The one positive to all this is that I won't have to miss a day of work each month. I have to work a month to get a sick day so I can never catch up. When my son got pneumonia I took days without pay. With the Rituxan being so far apart, I should be able to build up a few days of sick leave just in case.

Much hugs & Good Luck next month!

I hope it works for you.

Becky, Do you have any kind of program on your job where you could go down to part time and get disability? Do you have a long term disability policy at work? Check into this. It may allow you to still work a little and be able to go home and get the rest you need. Someone on here was saying (and I think she was a nurse) her employer had a program where she went to half time and got paid for full time. check into this. It may not have to be forever but until you can get your disease in better control. lorster2008-12-11 22:45:22I am not sure how to teach part time. I think they would probably have me bump down to a classroom aid position. Of course-that would be a major pay cut.

I just need to get through one more week and then it is wonderful Christmas Break!!!

Thanks for all your support guys. We all share the same frustrations.

I am so sorry about your visit! I also teach (middle school), and have a 3 year old, so I can relate to how you feel! Not working isn't an option for me, either. I hope things start looking up for you soon!I'm sorry things are so cruddy right now. Do your co-workers know how sick you are? If it is a tight knit group, I have heard of people donating a sick day to a co-worker to help them out, maybe a close friend there can spread the word? There's always medical leave, but probably without pay. I hope you are able to rest and re-charge over break. Try to get as much rest as you can. You will be in my prayers, hang in there sweetie!

Deb
We are not allowed to donate sick days. This is something that has come up in the past when teachers have long term illnesses.

I cannont wait until break. Unfortunately, their science fair projects are due the day before so it will be a working break-but at least I can sleep in. I start PT again on Wed. Hopefully that will provide some relief as well. I have become very good friends with my PT and she worked me in without needing that initial eval. She knows all my personal history anyway. My RD wants me to go 3 or 4 times a week during the 2 weeks off. I can't go that much during the school week.

I am laying pretty low this morning. Woke up in the middle of the night and took a pain pill for the jaw(popular topic these days:). I have a staff christmas party tonight which I need to go to. This is my first year at this school-I had been at the previous one for 9 years. It has been a great switch and it will be good to hang out with people outside of work.

They kinda know the situation. Like most people, they dont truly get RA yet. But, they are supportive. They know I am upset by the situation and want to help. My old coworkers are very supportive. They email me regularly and we are going to get together for lunch the first dayof the holiday.

I really am very lucky-I just need to keep remembering that.

rock: I hear your frustration. Hope things get resolved for you. I hope things improve for you with the change in medication. Fulltime work and a little one at home has to be difficult. While I admire you wanting to continue working, maybe a short-term leave at least until your meds start working will help. Rest up over Christmas break if you can - Best wishes for a wonderful new year.

Cathy

Good luck.rocckyd- I hope you start feeling better soon! Please rest up as much as you can over the break! Hi Becky,

I have been where you are and totally understand as do many here.

It is frustrating for the doctors as well. I think they will agree with you, it isn't fair at all. My philosophy is to find ways to cope while at the same time search madly for a therapy that will slow down the progression of RA. I try to keep a level headed mindset. weigh my options, etc.

I also did the Orencia for about a year and a half. It helped maybe 30% for 6 months then I basically got worse and worse until I recently started rituxan. I will let you know in January how it is going. some feel relief right away and some here posted it took a few sets of infusions but that they are doing better.

I was helped with the pleurisy pain possibly left by orencia initially, but now new swelling has brought the rib pain/pleurisy pain, (not sure which but hurts when I take a deep breath), back.

I was 31 when this all started. I am 45 now. It does seem you are moving up the latter with ra meds quickly but maybe the docs are treating it more aggressively and may save your joints in the long run. I don't know. just things I pick up in discussing with the doctors about my particular case.

I just hope you get relief soon and can continue with working if that is what makes you happy. sending gentle hugs and positive healing energy your way.

take it easy.

I assumed your name was Shelly, sorry.
I remember science fair projects well, lol. You probably are leaving them at school, so maybe before school gets out, you can ask a couple of your past students to come help with the grading - much older students you trust. They could at least help you by checking to see all steps were followed, etc. and you could do the final grading. It might save you some time. If they are honor students, they have to document any volunteer time, and if not, but are planning to go to college someday, it's never too soon to document their volunteet time starting now. Helps them with scholarships and you with time.

Just an idea...
deb

Hi Deb,

Becky started the thread, but that happens to me too. I keep double checking to make sure I get everybody's name right and I am responding to the right people.

but I did notice after I chose my name that there was another Shelly here. but I am shelly63 I usually choose a name that describe my personality like bizzybee11 or physical appearance like ebony29 . Grandpa called me Shell. so this time i wanted to be reminded of my grandpa. I must be feeling sentimental these days.:)

take care.

Hi Becky,

Just wanted to let you know I wish the best for you. Hopefully the Christmas break will give you some much needed rest time. Hiking_gal

edited for spelling