Good moanin everyone,
Have not been around here in awhile, sorry, have been spending alot of time with my favorite drs for one thing after another. I hate the merry go round of drs, drs, drs. Why can't it be simple to have to see one dr and one only.
Little update here. I am still getting small increases in my pain pump. I have gone in and got a bolus when the pain gets real bad. Pain mgt took me off oxycodone at my request, it was wiring me up and making sleep impossible. So, now its 2mg of Dilaudid every 4 hours as needed. Now, this will knock your socks off, it did mine. I woke up one morning in severe pain with low back and left hip pain. It was on a Friday and pain mgt office is closed on Fridays. I panicked, because the pain was so bad. I had Zanaflex which is a muscle relaxer and I took one not knowing if it would agree with my pain meds in my pump, but at that point not really caring, just needed relief. It worked like a champ and by evening I felt good again. I have been approved by the dr to continue the Zanaflex which I take daily. It has helped me so much and I am actually able to stand and cook a meal w/o feeling like my back is broke in half. I can do laundry w/o alot of problems. If I behave myself and avoid all lifting and bending I am now able to stay up on my feet longer. EL CAMINO are you on any kind of muscle relaxer. For that matter when any of us hurt, our bodies tense up causing muscle spasms and I sure would check into this with your drs. I have been on numerous ones and they either did not work or made me goofy and out of it. The Zanaflex does not do any of this and its been a life saver for me. For one thing, I do not know how to relax, never have and probably never will and that works against you.
Finally got off my butt and made appt with/cardio. Saw him last Thurs and he is working to find out why I either have bad swelling and edema in my legs or they get hot and red and tight. Either one, is really painful. My legs peel like a sunburn when the fever goes out of them. He upped my lasix to 40mg a day and upped my potassium. Monday I went for my echo and also had a doppler done on the legs. Next Mon & Tues I do two days of nuclear stress testing. Oh, what fun, I hate those. I have to go to the hospital and see if they can get an IV going, then go to the drs office.
A week and a half ago came down with bronchitis, went to the dr and got meds. Was put on Biaxin and the pharmacist told me to take both pills at the same time since they were time released. I questioned her on this because I have never been told that by a pharmacist before, which made her a little huffy. So dumb *** me came home and did just what she said. Then the next day repeated the same thing. By 7 that evening I was doubled over in pain with my lower stomach, squirts from hell, world war III had been declared in my stomach. I had so much gas I just knew any moment I was going to blow my house up. Erin can appreciate what I am saying cause she has crohns too. I then stopped the Biaxin. Had to wait till Monday to call the gi and nurse asked if I could hang on till Thurday cause I was due my Remicade. Had my Remicade and it did help get things slowed down. But, woke up in the middle of the night up & down flying to the b/r with the screamin meamies. Keep in mind folks, I take 8 lomotil a day w/o fail. But when the squirts hit, I need a bottle of wine, cork for me and the wine for someone else. Do I want to strangle this pharmacist, you bet cha. My gi patted me on the shoulder and gave me a hug when he saw me doing my Remicade, and I told him what happened. He says 1000mg of Biaxin is way too strong for my gut.
Erin, this is for you dear, I have been visiting another forum, there are several peeps with RA that just started Remicade and they are reporting improvement on the 1st infusion. Get your butt in gear and get your dr to start you on Remicade. It may very well work good for your CD too, wouldn't that be great. You need to stay on your Imuran when doing Remicade. My gi says it enhances the effects of the Remicade. I am on 100mg a day. I still do my infusions every 4 weeks.
Ok, I have ade this way too long, sorry. Hope all is doing the best they can and have less pain days. Hugs to all, Susie