Complete Change of Meds and Breakdown Time

Hello Everyone.  I have been writing and commenting here for the past few years and I really appreciate everyone's advice and encouragement.  Yesterday I had a rheumy appt. and I think I really surprised her (and myself) with a bit of a breakdown in her office.  I just cannot seem to get much better and I am really having a hard time accepting this.  I seem to be doing well for a few days and then, bam, I fall right back.  The joint pain and inflammation, and even the kidney stone pain has just about worn me down for the last three and a half years.  I just can't seem to get better, even when I am on a break from school.  It just doesn't seem to matter.  I don't know how much longer the school really wants to accomodate a principal that is always sick.

Anyway, my rhuemy took me off methotrexate injections, folic acid, and, even, Relafen.  I am constantly nauseated from all of this anyway.  Instead she put me on Arava and upped my prednisone to 8-10 mg until the Arava kicks in.  Of course, I read that Arava causes nausea. so I don't know how that will help!  And, true to form for me because I seem to have most of the side effects of any meds, this morning I had to pull over to a gas station to throw up on my way to school.  Yuck.  I know everyone thinks I am a hypochondriac and even my Supt. is becoming a bit rude.  He is also really grumpy right now because he is retiring in June but I am starting to get paranoid.  My intuition is usually right about these things and I am seriously considering retiring very soon due to my continuing health problems. 

It is possible that my husband will be transferred to Tampa, Florida soon and I would be able to use that as an excuse to leave gracefully.  I could then possibly teach graduate courses part-time or something instead of trying to push myself.  It just is so hard to deal with this, however, because I know I have so much to offer.  In the last nine years my school has improved so much.  My teachers and I have worked so hard to make it possible for all kids to learn and we have the data to show for it.  I am sure this is why I have been treated so well but I know everyone thought I would be better by now.  Geez, I thought I would be better by now. 

Well, thanks for letting me vent a bit here tonight.  As for the Arava, has anyone had any success with this med?  I read conflicting reports on it but I haven't heard anyone here at HW say much about it.

Oh sweetie, I'm sorry you have to go thru this. So I am assuming that it was the arava was what made you puke this morning?
I know the whole thing stinks! You do everything your supposed to do. Life revolves arounds doctors , meds, lupus, tests. You try as hard as you can to be possitive and take the best care possible and what happens...........you get worse! Than you get these lousey people that should have enough smarts to understand what you are going thru they turn out to be total idiots!.
It sounds like if you are in a possition to retire it might be the best thing for your health because from what you are saying the stress alone is going to make things worse.
I don't mean to insult you or anything with your education but maybe you could do some tutoring so it could be on your terms. There are alot of us here that have had good jobs. in fact everyone here has had somthing in their life that was important to them that this disease has taken away. Even if it was being a janitor it was still a job and there was pride in a pay check and and making a living. Lupus and A/I just doesn't care who you are.
I have a real resentment to people who treat us poorly because they think we are "faking it" If it was cancer they would be right there for us doing what ever they could.
Your comment about an excuse to "leave gracefully" You don't need an excuse. Those people treating you wrong need to get a clue. I think they should have to do a term paper with all the graphs and everything done in crayon.
sorry I think I'm having a bad day. I just feel so bad for you I don't know what to say.
I hope the doctor can find somthing that will help that doesn't have such awful side effects.
love and prayers
carol

Hi ((((Audrey))))), I hope your new meds work well for you. That pred just might do it. I don't know anything about the Areva. Important factoid: Thoughts are things. I am a big believer in intuition . . . it really helps guide us through so many issues . . . but I'm also aware that "thoughts are things". If you "feel" like someone has had it with your health issues, you will "put out that vibe". People . .. even children. . . are very receptive to what you are "putting out". I try to "pretend" that my health matters to others. I know this isn't necessarily true . . .but I need the internal confidence to move thru situations like you mentioned in your post (with your boss). It really does seem to make a difference. When I was working, I stopped giving reasons for an absence (Dr. appt.) or sick time. I simply told co-workers I would be "out" for those hours or days. Few people asked and I only cared about the boss. He even appreciated less information. I hope you'll keep us posted about your progress with the new meds . . . sorry you got sick !! Ewww. Hot tea for you Audrey!! Blessings!

Hi Audrey,

   I'm on Arava as well. I have been taking it for a little over 2 years. I messed up and took myself off it a few months ago and started flaring bad. I'm back on it now and doing better. I do have some nausea but, not bad. Some days I have to take a phenegran of meclizine. Most days I do well. It will cause weight loss and some hair loss. I hope the side effects get better for you soon and you see some good improvements. Please keep us updated and take care. You are in my thoughts and prayers.

                                            ((Hugs)) Babs

Thank you so much, everyone, for your kind words and great advice! I am actually doing much better and, tash, I kind of "accidentally" found out that taking the Arava at night works much better for me and I do wake up without the nausea. And, hippi, you were right. The increase in prednisone has been fabulous. Of course, it always is! Too bad it is such a double-edged sword! I could probably function close to normal if I could take 10 mg of prednisone everyday! That is probably all I really need!

As usual, I am wary of my sudden improvement. This seems to happen at first and then I slip right back in to my usual problems. I am taking it very slow and I am trying to remain optimistically positive that this time I might be OK. Like you said, redrose, a remission could just occur without much notice.

I might have been way off the mark about my perception of my work situation, too. Let's just say I am really keeping my ears open. My boss is very difficult and always has been. I have dealt with his "chauvenism" (spelling?) for the last nine years. He frequently has me doing much of his work and he treats me really nice when he needs me to do something for him. I am getting really tired of this but, he is my boss. His behavior is very "alcoholic-like". I never know what to expect. My teachers have noticed this too (I did not know this until just recently when, on a few different occassions teachers, aides, or other administrators made off-handed comments about the work he piles on me.), and many of them have complained to the Board members about it. I wonder if this is why he "decided" to retire? Everything is so political and, ginny, you are right, I don't need or want the drama!

Again, thanks so much to everyone for your replies. Your kind words and concern have really been helpful and made me feel better. I am hoping the Arava works as well for me as it seems to be working for you tash and Babs. I wouldn't mind losing a little weight, either. Taking prednisone off and on over the last three years has caused me to gain about 30 extra pounds. It is really hard to get used to for me. I actually weigh more now than when I was nine months pregnant! However, losing weight because of "throwing up" a lot is not my idea of fun - ewww! Please tell me this not what causes the weight loss! Please, please!

I have you all in my thoughts and prayers!

Audrey,

   My wt loss wasn't caused from throwing up with the Arava. It cuts the appetite a bit and something in it just pulls some wt off. I don't mind the shedding of pounds either. I have to force myself to eat somedays but not from nausea.

   I really hope this works well for you and you will start to see some improvement very soon. Keep us updated and take care.

                                                           Babs