Hi, Camella! Just wanted to thank you for making me feel encouraged. I haven't played piano in church for over 2 years and I would love to be able to do it again, but right now, my PsA flare ups would make it impossible. You just gave me some hope.
I have never had infusions. I give myself a shot of humera once a week and my doctor has just prescribed an injectable methotrexate as opposed to the pills which give me nasty side effects. I'm a nervous wreck about the shots of methotrexate. I don't know why. Possibly because in my head I'm thinking there is more of a chance that I'll lose my hair. I'm so sick of all this. I pray that the infusions are successful for you.
Nancy,
Make sure that you take folic acid with the methotrexate. You can get a script from your doc, or ask how much you should take if you prefer to buy it over the counter. It is supposed to help prevent the hair loss that goes along with MTX, and many folks on the board swear by it. Also, the injections are supposed to be a little easier on the side effects. People have stated all of the trouble that they had with the tablets, but the injections were a lot better.
Don’t feel bad about the MTX, I am the crazy person who wants her doctor to hand it over! Gimme! The MTX will really help the Humira be more effective and will help to prevent you from making antibodies that make the Humira worthless. Since remicade is similar to Humira, it should give my remicade a boost too!
You are way too stressed right now. Try to do something this evening that relaxes you and makes you feel better. All of the worry isnt helping you :-). After being diagnosed, this time has been the toughest. Waiting to get to find the drug that is my “miracle drug” is so frustrating! I think it’s an especially hard period for everyone. Eventually, I had to let go of what I cant control on my own. It was hard to let go of that worry, and it took a while, but I am slowly getting better at it.
Wishing you less pain and more mobility,
GrumpyCat
Nancy said:
Hi, Camella! Just wanted to thank you for making me feel encouraged. I haven't played piano in church for over 2 years and I would love to be able to do it again, but right now, my PsA flare ups would make it impossible. You just gave me some hope.
I have never had infusions. I give myself a shot of humera once a week and my doctor has just prescribed an injectable methotrexate as opposed to the pills which give me nasty side effects. I'm a nervous wreck about the shots of methotrexate. I don't know why. Possibly because in my head I'm thinking there is more of a chance that I'll lose my hair. I'm so sick of all this. I pray that the infusions are successful for you.
Your response to my message could not have been better timed. My husband had just given me my first shot of methotrexate, I finished up w/ my weekly shot of humera, looked at my left hand which is swollen and painful beyond belief and I burst into tears. I'm a mess! This past month I gave up the majority of my sales territory because I just can't do my job the way I did. This, of course, means a loss of income but I just can't do it. I am constantly in pain even though I'm taking 3 percocet a day along w/ motrin or other anti=inflamatories, and I'm terrified that I'm addicted or going to be addicted to the stuff. I recently burst into tears when my doctor walked into the room where I was waiting and asked me how I was. I had been on cymbalta for my fibromyalgia, but I saw no difference so I asked to be weaned off that, and then she put me on zoloft. I never thought I would be someone who needed an anti-depressant, but I feel like I'm the poster child for it now. So not me! I hate living like this and am just hoping that I can glean enough information from the people on this blog to make a difference. Just knowing I'm not alone makes a difference. Thank you soooooo much for replying last night. You would not believe how your post lifted my spirits. Now, can you please fix me? LOL
I want to thank each and every one of you for all your replies and discussions - it was very helpful to me, and I think to a lot of you, too! I have an update - due to a skin infection that has been slow to heal, and a flareup of my shingles, my first REmicade IV was postponed till March 8. Methotrexate and prednisone make skin wounds very slow to heal. The piano playing, while hard on my joints, has been REALLY good for my brain - playing choir music, parts etc., and learning hymns from an unfamiliar hymnbook has made my brain have to think hard for a change. I still feel very slow and stupid, but I can see that each week I am getting a little better. I look forward to less joint pain so maybe I will be able to play more like my old self eventually. The other interesting thing I discovered is that my skin care cleanser (which is for women 50+) actually helped my shingles and my arm wound start healing faster. I wish I had tried it sooner, but when I first got the shingles back I didn't use anything on it. Very interesting. Anyway, thank you all again for taking the time to get involved in this discussion, and if you have more tips to help people in our group, keep them coming!
Sorry to hear it's been postponed, Camela - I hope you heal quickly!!!
I may have to postpone my infusion, which is supposed to happen tomorrow. One of my five kids was sick to his stomach this morning, and we're not sure if it's something he ate or a stomach bug. So far, no more puking, but if he or any of the kids pukes between now and 10AM tomorrow, my infusion gets postponed. Ugh.
I can't take MTX, so Remi is my only PsA med at this point. I take Tramadol for pain, but it doesn't do more than take the edge off. I'm on NOTHING for inflammation. I need this infusion!!!
It is so interesting to see the different treatment plans from the doctors! When I got PsA, I was already on Sulindac, an antiinflammatory for RA, that I had been on for over 20 years. I had a 5 year gap in doctor's care, and when they retested my levels, my RA factor was over 240, which made them call me and get me in immediately. AFter asking some questions, the doctor decided I might have PsA, and put me on methotrexate, prednisone, plaquenil, and Humira. She has continued all of those except the humira, trying enbrel and Simponi before deciding on the infusions. When I was just considered to have RA 20 years ago, they did plaquenil for awhile, but my levels all went down and they stopped it. SHe is much more aggressive than some of the doctors I see on this site. I hope you are able to get your infusion tomorrow.
nym said:
Sorry to hear it's been postponed, Camela - I hope you heal quickly!!!
I may have to postpone my infusion, which is supposed to happen tomorrow. One of my five kids was sick to his stomach this morning, and we're not sure if it's something he ate or a stomach bug. So far, no more puking, but if he or any of the kids pukes between now and 10AM tomorrow, my infusion gets postponed. Ugh.
I can't take MTX, so Remi is my only PsA med at this point. I take Tramadol for pain, but it doesn't do more than take the edge off. I'm on NOTHING for inflammation. I need this infusion!!!
Uneventful is good! :) I always make sure I bring stuff to entertain myself, although I don't always need it.
Today I got there, got settled into my recliner, got hooked up, and then got a 20 minute shoulder/neck/upper back massage (free), followed by a warm blanket and cup of coffee. I read a bit, then listened to a podcast while eating my gluten-free lunch. Then my nurse sat down for a few minutes to chat while we had tea, and then I had a wonderful conversation with the couple across the way from me. Then I went home to five stir-crazy kids who have been cooped up in the house all day due to cold temps and rain. LOL
I did very well on Remicade. My Rheumatologist would always post-pone my infusions with any active infection though. I ultimately stopped due to the time it takes each month. I think you will like how it works, just takes a long time to get there. Good luck!
That's great news! Boy after reading this I feel lucky (for once lol). I am in my own room with a TV, which gives me something to do at least! Although the last 2 times they gave me my benydryl in a shot and off to sleepy land I go. I think its the best sleep I get even in a recliner!
Frances said:
My first Remicade infusion today was uneventful - will bring my laptop next time to watch movies and use their free WiFi.
Hiya, I just had my 1st infusion a week ago today... no worries! Nuthin' to it. The worst part was the boredom... I wish you well on the 22nd. Bring sumthin to read! Good Days...
Wow what a wonderful staff! Don't get me wrong, my staff is very wonderful also, I get the blanket and whatever I want to drink and lunch if I'm still there, just no massages, lol. But 5 kids OH MY you deserve that with every infusion!
nym said:
Uneventful is good! :) I always make sure I bring stuff to entertain myself, although I don't always need it.
Today I got there, got settled into my recliner, got hooked up, and then got a 20 minute shoulder/neck/upper back massage (free), followed by a warm blanket and cup of coffee. I read a bit, then listened to a podcast while eating my gluten-free lunch. Then my nurse sat down for a few minutes to chat while we had tea, and then I had a wonderful conversation with the couple across the way from me. Then I went home to five stir-crazy kids who have been cooped up in the house all day due to cold temps and rain. LOL
Oh my ! That is the royal treatment. They should offer us mani and pedis while we're there - why not ? The have the perfect chairs for it. I'd pay for it.
I have been on remicade injections for 5 months and although i was not impressed during the first 2 months, I have a better outlook and feel less pain today. There is no discomfort other than the i.v. of course. Yes, take a blanket and computer or magazines. In St Louis and Slu hospital, I am surrounded by other RA patients as well as cancer patients. SOme want to speak, some do not. Good luck. I hope u feel like i do now because I wish upon no one, what i felt 6 months ago, and I have alot of anger toward some people and it surprises me, that I do not wish this upon them.
HI Christopher, I've had 2 Remicade infusions and was told it would take 2-3 months to see a result. Are you saying it took 5 months to see the benefit?
christopher said:
I have been on remicade injections for 5 months and although i was not impressed during the first 2 months, I have a better outlook and feel less pain today. There is no discomfort other than the i.v. of course. Yes, take a blanket and computer or magazines. In St Louis and Slu hospital, I am surrounded by other RA patients as well as cancer patients. SOme want to speak, some do not. Good luck. I hope u feel like i do now because I wish upon no one, what i felt 6 months ago, and I have alot of anger toward some people and it surprises me, that I do not wish this upon them.
My dr told me she would not change dosage or frequency for 6 months, to allow it time to work and level off. At month 4, I was able to start working around the house and working on my car but i paid for it the next day. i dont mind the pain if im still functioning and productive.