At my last rheumy appt, with the Imuran plus pred not doing enough, I was fully expecting him to start me on the Rituxan, but he wanted me to wait for a month and see. Why? Maybe because he thought I overdid it in the condo move and didn't give the med a fair chance. Ok. But when he walked out the door he said "see you in 6 weeks". Grrr, that's more than a month, even my RA brain can figure that one out.
I'm halfway to the next appt and I have been resting dutifully and not overdoing it. Now I'm in much worse shape than when I saw him. Pain in both hands, both feet, right shoulder (whole right arm really), both elbows, and both knees. Inflammation and stiffness in both hands, both ankles, and both feet. Not able to drive right now, so hubby is ferrying me back and forth to work. My Vicodin ES barely does anything.
So yesterday I faxed my rheumy's office (I find a written out fax gets the message across better than a phone call to the staff), explaining what I'm going through, that my appt isn't for several weeks, and asking what can he do in the meantime. I gave them my office number and told them what hours I'd be around.
No answer yesterday, and then around 11 am I found that I had missed a call on my cell (my office doesn't get good reception). Why on earth would they call my cell? Anyway, there was a voice mail from one of the staff saying the dr was away, but that they read him my message and he wants me to "take a med-roll pack, whatever that is". Ok, if she works for a rheumy and doesn't know what it is, does she have to tell me she doesn't know what it is? Anyway, I have a spare pack at home from last time and will begin it tomorrow, probably jump start with some extra pred tonight.
I'm tired of waiting. I don't want Rituxan at all, but I want it right now, if you know what I mean.
Thanks for letting me whine!
Did you start the medrol pack? I hope your rheumy's staff was able to give you an earlier appt. It reallys stinks when you have things you want to do and can't. Hang in there sweetieThanks, Deb. The Medrol pack is at home, and unfortunately I'm still at work. Hubby is on his way to get me right now, but it's awfully late in the day to start the pack, isn't it? So I figured I would take 1-2 of my 5 mg pred pills tonight to get me started.
There are definitely no earlier appts...they had problems even getting me the appt they did.
Oh, and I forgot to mention that even if he wants me to start the Rituxan when I see him the first week of October, I can't. The second week is our vacation to FL, and then soon after that starts all the stuff for my little sister's wedding...I'm worried about starting it right before a big occasion like that.
Well, if it is a new medrol pack, you can take ALL the pills for the first day at one time. It states that somewhere on the pack or in the leaflet. So, if you want to take it when you get home you can, just have to take them all at one time. Will not hurt. I do it and my RD told me I could.
I am sorry you are hurting soo bad. Did the Imuran work for you? I ask as I am suppose to start that with my Remicade when ever I get an appt to go back to my new RD. UGH!
Huggs!
I'm so sorry to hear of your pain and frustration. And for the life of me, I cannot figure out why physician offices have people call to give a patient results or a message if they don't understand the info they are supposed to relay.
Suzanne, does your office have a waiting list in case someone cancels?
Good lord woman. Will you ever get a break??!??! >.< I hope the med pack is a good boost for you. Maybe that's all you need? *crosses fingers* If not, well I hope he can do SOMETHING for you in the mean time. I know you don't want to go on Rituxan :( But look at Cordy!! She's doing alright so far......just think of her! LoL
*hugs* hang in there hun!!
I'm doing really good actually...no after effects at all so far...still got severe RA but I didn't really expect it to work yet since I have only had half the treatment and from what a couple of people told me the first round can take three months to kick. Second infusion next Wed 19th.The waiting game...don't docs know life just can't wait sometimes?!!
You poor thing - I hope your pain is releived soon. I don't get all the 'scary' meds ( my daughter may be headed their soon) - but can understand your concerns -and your desire to have them NOW!!
No one should have to suffer like you...
Stay strong and I hope it all works out for you real soon.
And keep whining when you need - this site is great for that!
I was in such a fog yesterday, that I couldn't even get what Joonie was saying about taking all the pills late in the day. Yep, it says it right on the pack that you can do that. I hate it when I'm so messed up that I can't figure out how to un-mess myself (even when someone is telling me)! When I was married the 1st time, I actually gave my ex a list of "how to fix Suzanne" things, so he could remind me to do the things that would make me feel better when I couldn't remember them myself. My current hubby prolly wouldn't remember to look at the list, so we'll just be in the dark together.
Anyway, since I didn't start the pack last night, instead I took 10 mg of pred from my old maintenance prescription last night, and started the medrol pack this morning. I'm not sure if I'm supposed to continue taking my current 2 mg maintenance dose along with it, but I figure why not?
Cordelia, thanks for all your support on this and I'm so glad things are going alright for you. I hope you start feeling the positive effects soon!
I guess I would just like to get on with it already, and now realizing that I probably won't be able to start until November at the earliest is getting me very frustrated. I don't think most drs realize how they are affecting us when they ask us to wait, whether it is an appt they need to reschedule, or they don't have openings, or they want us to give a med a longer try. A couple of weeks can be a very long time.
Innerglow I am sorry to hear that you are in so much pain RA sucks doesnt it
I really hope when you next post that you can at least report that you are feeling better and on the up
I wish you luck
I haven't been around much...the pred pack helped a little on days 3-4, but not really at all on the other days and yesterday I was back to where I started. I called my rheumy, and he told me to take 20 mg pred a day for the next 5 days, then 15 mg for the next 5 days, then 10 mg for the next 5 days...and by then I would see him at my next appointment. I'm not happy about getting more pred.
Plus the pain is still there, and even with all the pred I am soooo exhausted...shouldn't I have more energy at this point? After fighting all this pain and such the last two weeks, I just couldn't make it into work today. I slept until 11 am, and now 3 hours later I can barely keep my eyes open and everything hurts.
I found out earlier this week that I had re-activated mono. Which is why I felt so TIRED and why I felt worse. I makes ya achey and hurt more.
But now that my fatigue is clearing up, I do not hurt as much and the pred is back to working well again.
I hope you feel better soon. And please try not to worry about taking the pred, if you need it you need it. It is just a quick dose of it, and I hope it makes you do a little better.
Keep us posted.
Deb
I'm on Vicodin ES every 6 hours round the clock and have been for...well about 10 months now. I need something stronger/different but I think that will have to wait for my appointment.It definitely sounds like you need a stronger pain med. If your rheumy is not willing to prescribe something, why don't you ask your pcp to refer you to a pain specialist?
I know starting yet anyother new doctor is a pain in the butt, however, I really think this is something you should do. I was with the same pain specialist for 5 years, and she was truly dedicated to helping me control my pain. I have not been pain-free for many many years, but at least it is possible to live with it.
You may need a stronger, schedule II pain med. I have been through most of them, except oxycontin, because I am allergic to Percodan, the brand name. Currently I am taking 1-2 Methadone, 4 times a day, and 1-2 Morphine Sulfate IR for breakthrough pain, up to 4 per day.Doesn't kill the pain, but makes it livable.
It definitely will not make you have more enregy, but you need to get some relief and it sounds like the Vicodin hasn't been enough for a while, now.
Good Luck, Sweetie
Hugs, Nini
Hi Suzanne, Waiting is the worst part of having an immune disease. We have to wait for everything. You're in such bad pain and have been for awhile and the extra Pred. just might be enough to get you over the hump and you may not have to change pain meds. Can you take Vicodin ES every 4 hours or even every 5 hours?
Is it possible to call your RD, explain to him the present situation and demand to start Rituxin immediately and not wait another few weeks. Sometimes patient demands are heard and respected. Never hurts to try. Also ask him about taking the pain med every 4 hours, or giving you something to supplement what you're taking now. Your pain may be short term until the Pred. does it trick and the Rituxin kicks in.
I know it's frustrating and the pain makes it unbearable sometimes. Talk with him and hopefully he'll hear you. Lindy
Thanks, everyone. I just feel so miserable I'm just not sure I'm up to the effort right now.
My rheumy actually did send me to an esteemed pain management doctor at the local university hospital. I won't bore you with the 3.5 hour ordeal (during which they literally forgot I was there
I probably should push for the Rituxan sooner, but I'm finally getting a vacation (to Florida) in two weeks
I think I just gotta wait, and whine, and possibly get a stronger pain med from the rheumy next week, and try to hold on to my job and get through all these other things.