Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Infusion over again....

This time no problem. I woke up in the night with the headache but it is mostly gone this a.m. I am pretty tired but then I didn't sleep last night. I took my 3 mg. Pred before I left. The PA gave me a big shot of Kenalog in my hip joint to help me walk again and then they gave the Solu-Medrol before starting the Remicade. I should be feeling great today with all that stuff but no.....not happening yet. )

I am very thankful that I didn't get sick during the infusion and I hope it works. I know it is helping some. I think I just was expecting too much. I wanted "WELL"!!!
I don't believe that is going to happen in my life time but it will probably in some of you youngsters. )

I also spent 2 hours in the dentist office on Wednesday and also saw the PCP this week and had all kinds of tests done yesterday at the rheumies. I was there most of the day and got home at 4:00 and at 4:30 the phone rings and they want me to go back to the urologist. ( I told them let's wait until Tues and they get "all" the tests back and decide where to go. Also we are starting PT to try to get some things back in place to mybe help my hip.

OK, that's me for now. I am thankful that we are up and around today and the sun in shining. I hope you all have a sunshiney day (in your hearts if you don't need it outside).
Have a great weekend.

Blessings.
Possi

hey possi im glad you had a better time with the remicade this time..i missed my remicade appointment on thurs my ride couldnt make it....i realy hate having to rely on others to go places i got it resceduled for tuesday morning so my wife will probably be taking me just to make sure i get my treatment...im having a sun shiney day here to but im in to much pain to really enjoy it...therapy on the hip thats great im doing the same thing so far just 4 stretching exercises i have to do twice a day but the hip is mellowing out some as long as i dont put weight on it to much. im really glad your doing so well today......PTL....oak

Thanks Oak. I just saw where you were replying. I had you on my mind since we had been on the same schedule. Wish you had been able to get yours and am glad you rescheduled.
I have slept quite a bit today. The day after just makes me tired but I had a really long day yesterday and didn't sleep much the past two nights so I guess sleeping when you can is ok.

I am glad you are having a sunshiney day. It is hard to ignore the pain isn't it? I just had another pain pill and topped it off with two aspirin. Heard a lady in the infusion center yesterday say that the aspirin made all the difference in the world in the way her Lortabs work and I know my hubby says the same thing so I decided to try it. My pain is better. Might have been without the aspirin. )

Hope you have a wonderful holiday weekend. Are you going to do something exciting? Ours will be quiet. Only one of the kids will be here and that is only for OU football kickoff. My friend is not coming since I am kind of tired. Sunday will be church and I don't know about Monday. Actually, with our life the way it is now. Any day could be a holiday but something about it being a holiday on the calendar makes you feel like you should celebrate. )

Just wanted to say hello. Hope the family is well and that your pain will be better. I am anxious to start P.T. but they haven't called to schedule it yet.

Thanks for your praises for my good day. Possi

nothing planned so far for the weekend other than getting the kids ready for first day of school on tuesday....i really wish i could work we really could use the extra income....oh well cant dwell on the shouldve , wouldve, couldves, can we...oak

No, we can't. I would be at work in a heartbeat if possible but God has plans for us. Jer. 29:11 Have to read that one pretty daily. It is working out for good even though we may never know why. One blessing, look at getting to get the kids ready for school. Oh that would be so fun to see the excitement on their faces. Look for the smiles Tuesday a.m. and think what you would miss if you were at work.

Blessings to you and yours. (and I am not trying to make light of your not working and wanting to. I understand so much. That was the hardest thing that ever happened to me....so far (no that's not right, I have had harder but it was very hard to be at work on Friday and in the hospital on Monday never to return to work) I do understand, Oak. I am so sorry you are having to deal with this and it is so hard when you are young. Believe it or not, I was young once.

Joyce, I'm so glad to hear the infusion was easier this time out. I hope you feel the positive effects more fully this time.

Warm Hugs,

Thanks Kat. I hope so also. I think of you often. I told my kids about you and you being my inspiration and my goal being to go with you. They are encouraging me to plan and if I have to just making the trip would be a big step for me even if I couldn't do the walk. They thank you also.

Hugs and Blessings and much appreciation.
Possi

Hi Possi,
It sounds like you had a much better time getting Remicade this time. I'm happy for you. I just found out that I will be getting mine at 8 week intervals, continuing the 300mil dose, but I don't have the 2nd appointment yet. I'll still be getting the Boniva there too, but at every 3 months. I got plenty of my sunshine today when I went out to do errands, and I'll get plenty more of that when I travel to get my infusions.

Thanks for letting us know,
it's always good to hear when someone's feeling better.
Take care,
James.

Hi Joyce,
I'm glad it went better this time, and I hope you'll be feeling better soon.

My Dr. prescribed the compounded cream for me. The pharmacist suggested that we leave out the Dexamethasone because it's a steroid and they said it's not a good idea to use it too much. I said that was just fine since I don't like taking steroids anyway. When I picked the cream up, I also talked to the pharmacist about maybe leaving the Lidocanine out next time. She said that too much of that can cause problems with your heart. I'm thinking maybe just the NSAID and the muscle relaxer would be enough. I started using it last night, and my knees do feel better. Maybe it's in my mind, but I don't care. Whatever works!

I have a three day weekend this weekend because of Labor Day. Well, actually I have four days off because Tuesday morning at 6:30 I have to be at the hospital for an upper endoscopy. They want to look and see if I do in fact have an ulcer, and how bad it is. I'm pretty sure I do, and I'm not looking forward to doing this, but I'm sure it'll be OK. If it will help to fix the problem, then it'll be worth it. 6:30 is early to be at the hospital though huh??

Glad you got what you wanted/needed. They told me the pea size amount you use and only 3 times a day is not too much steroid right on that joint and the same thing with the Lidocaine. I am extremely sensitive to Lidocaine and can't have it in the dentist office but I use it just fine in the small amount on my painful joint. It is wonderful that they can mix it just in what you need. I am glad it is helping you.

I don't like the steroids either but boy have I gotten them lately. I use the cream, take 3 mg. daily, got a huge Kenalog injection in my hip Thurssday and my Solu-Medrol before they started the infusion. No wonder I couldn't sleep Thursday night. )

Good to hear from you. Hope you get relief and have a glorious weekend.

Hugs and Blessings.
Possi