Hello to all you fellow PsA/RA sufferers! Sharing my nervousness at starting infusions of Remicaid on 2/22. The Enbrel, Humira, then Simponi injections have not been effective, so now we are trying infusions. I am hopeful, but also nervous. Would love to hear from those of you who currently do that method. Also, I took a church pianist job last month, after 5 years of not playing. It is good for my brain to be learning accompanist music for the choir, but my wrists are very sore, of course. I am icing, and am determined not to quit-I have really missed my church service.
There is one other thing I didn't mention yesterday in my original post. I have a problem with skin infections--caused by my small dog or my cats. Sometimes they get infected. I am dealing with one right now, and am going to the doc this morning. I worry that they will push back my start date -- does anyone know how they view topical infections? Are they considered serious enough to hold off on the infusions?
And thank you for all the feedback so far -- it has been very helpful.
I have just started Remicade after using Enbrel X2, Humiria and Simponi each for about a year. I got partial relief from each but it only lasted a year or less. I have had the 3 loading doses of Remicade and about a week after the third loading dose I had 3 weeks of being symptom free. My next infusion is 3/7/13. I called my Rheumy to see if we could move it up or increase the dose to last longer. She agreed to increase the dose but does not want to increase the frequency. I have not had any side effects and am so excited I may have found something that works. I wish you the same luck with Remicade. Happy Trails!
I start on Remi again tomorrow. Was taken off of it for awhile. Have tried Methotrexate, Humira, Enbrel, and Simponi. They did not work. Take something to read, crossword puzzle or the like. It will take a while to go in. Good luck. Some people start feeling something while they are getting the infusion but they was never my luck. It is hard to hold onto your life when the PSA gets ahold of you!! Take care.
I am going to start enbrel injections. The nurse is coming tomorrow to demonstrate. And I am nervous. Very nervous but trying not to think about it. I'll be more nervous when Im on my own doing it. I hope you dont mind me asking you a question but what are infusions? Congrats on the new job & hope your pain eases.
I was on Enbrel, Humira and Simponi as well. I started Remicade back in August of 2012, and so far it has been the most helpful. After the loading doses I was on an 8 week schedule, but noticed around week 5 I started having pain symptoms, so my doctor has me on the same dose but going every 6 weeks. I still have issues with my hands and feet on an almost daily basis, but taking Aleve seems to help take the pain down a notch. In those instances where I am just having a really bad flare-up, my Rheum Dr. has put me on a short-term dose of Prednisone to calm that down. I also take Methotrexate x8 every week. My worst problem is fatigue....I would sleep all day if I could. As for the infusion nurses - I can say they are the nicest people. They make me feel comfortable and during my infusion I play on my iPad or catch up on sleep.
Oh! Enbrel injections are when you do it yourself - infusions are when you go to doctor's office etc. and it is given by IV. I hope you get relief from your enbrel injections - remember to mark down which leg/stomach area you used or you will find that you can't remember! Also, ice afterwards if you need to. Good luck!
beecreek said:
I am going to start enbrel injections. The nurse is coming tomorrow to demonstrate. And I am nervous. Very nervous but trying not to think about it. I'll be more nervous when Im on my own doing it. I hope you dont mind me asking you a question but what are infusions? Congrats on the new job & hope your pain eases.
oh ok I understand Ive had antibiotics received by IV. It was hard on me. I was on it for a long time the last time I got an infection and they kept losing spots in my arms where they could do it. It left my arm so painful. But I was getting many infusions on a daily basis so probably not the same thing. I appreciate u responding to my post Camela... thx for explaining it and for the tips for myself..like icing and marking the area. Do I always inject in the same spot? And should i ice as a precaution to prevent bruising.. Im so nervous but trying to learn as much as I can.. im sure the nurse will be helpful too when she comes in tomorrow but i have a bad habit of forgetting to ask all of my questions.
Camela Sutton said:
Oh! Enbrel injections are when you do it yourself - infusions are when you go to doctor's office etc. and it is given by IV. I hope you get relief from your enbrel injections - remember to mark down which leg/stomach area you used or you will find that you can't remember! Also, ice afterwards if you need to. Good luck!
beecreek said:
I am going to start enbrel injections. The nurse is coming tomorrow to demonstrate. And I am nervous. Very nervous but trying not to think about it. I'll be more nervous when Im on my own doing it. I hope you dont mind me asking you a question but what are infusions? Congrats on the new job & hope your pain eases.
I haven't started my infusions yet, so I have nothing to share on that front. However, I think it's GREAT that you're going back to your piano playing and icing your way through it! This helps me and I'm sure many others to remember to keep doing those things that we love and enjoy!! Anything that lifts the spirit!! Thanks so much for sharing. I hope your new Remicade works fabulously and that you enjoy your church services and playing piano!! Best wishes!! :-) Smile!
I was most recently on Enbrel however I just had to switch rheumies and my new one is too reluctant to take a chance and order a biologic for me. The Enbrel wasn't really helping so I was hoping he would go to a more potent infusion....and instead he terminated them altogether and put me on Prednisone as a standing dose to see if it will diminish the pain.I've been taking 5 mg and it hasn't done much....he said I could increase it to 10 if need be. The reason the rheumies are reluctant for me to be on an infusion is because of my infection history. I have had numerous life threatening bouts with infection and because the biologics destroy the immune system, all the docs feel that it would be flirting with death for me to be on a biologic. This is endlessly frustrating because I desperately need the medicine. Good for you for going back tothe piano. I am going to go back to knitting also. Tired of saying "I can't." time for some determination.
My Rheumy does not give any pre meds so I take Tylenol or Vicodin before I leave the house. I do feel some tiredness after the infusion but I think it may be from sitting for so long. They always use my hand which is uncomfortable but no pain. I think they are saving my bigger veins for later :-)
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…
Camela, I am such a Remicade Junky that I feel that it is the best medicine out there for PsA. I also had used Enbrel, Humira, Simponi injections along with massive amounts of Mtx and Prednisone. Once we started Remicade I have been on a very happy road to feeling much better. I still have a few joints that are tender, but not swollen or so sore that tears are coming down when bumped or touched the wrong way. I wish you the best of luck. It is a long day, take something that you enjoy doing for 3-4 hours of sitting. Make sure you have a throw blanket or sweater. I always get cold when I am sitting in the chair...(we live in FL so AC is always on) Good luck on your new job. With this infusion hopefully you will be able to play with no pain.
Grumpycat- No they don't. I do not take an antihistamines at home either. I just take Tylenol or Vicodin before depending on my pain level. I gto 100% reduction in symptoms about a week after my last loading dose but it only lasted about three weeks. Now I am back to baseline- bad, really bad. Did you experience any relief after loading doses? Can I expect this again on 3/7/13 when I get my first of the non-loading dose. I hope so!
I'm so sorry you are unable to take a med that might work because of your history. This PsA is so difficult. I'm glad you are going to get back to knitting. I am an avid knitter, and the added benefit is that it keeps my fingers moving. I keep a knitting project with me at all times and work on it whenever I have a few idle moments. The more I knit, the less stiffness and pain I seem to have in my hands/fingers. I hope it works for you as well! :)
Renee
Qadosh2him said:
I was most recently on Enbrel however I just had to switch rheumies and my new one is too reluctant to take a chance and order a biologic for me. The Enbrel wasn't really helping so I was hoping he would go to a more potent infusion....and instead he terminated them altogether and put me on Prednisone as a standing dose to see if it will diminish the pain.I've been taking 5 mg and it hasn't done much....he said I could increase it to 10 if need be. The reason the rheumies are reluctant for me to be on an infusion is because of my infection history. I have had numerous life threatening bouts with infection and because the biologics destroy the immune system, all the docs feel that it would be flirting with death for me to be on a biologic. This is endlessly frustrating because I desperately need the medicine. Good for you for going back tothe piano. I am going to go back to knitting also. Tired of saying "I can't." time for some determination.
I can relate. I am in a similar position except my dr wants me to take the risk. I just have mild to moderate PsA & I do not take any pain medication (i can manage the pain i do get, that's why) but he wants to control the disease, and wants me to take enbrel to prevent damage. I was on mtx previously...I had no SE while on mtx but it didnt do anything for the inflammation, or swelling...i just had less painful episodes while on mtx but it's the inflammation that does you in. I was surprised when my dr asked me to take enbrel...after i looked into it, that is because i too have a history of serious & scary infections (in my leg) and I hope that I do not get more! Altho if I do get another one , i wont even know if it was because of the enbrel or not, as Im used to getting one...every 2 - 3 yrs...but I hope any new ones are not more serious than they have been!!!!! I just cant imagine! they were never life threatening but they spread fast and i have to be hospitalized for weeks almost every time I get one. It's just scary what could happen. I wouldnt want to have to get my leg amputated. Hopefully all will go well on enbrel. No one will understand unless they have a history too and have had the same type of infections I have had. Anyways I decided to take enbrel and I have my first injection tomorrow. I want to control my PsA and i guess that's important to me too...and I may or I may not get another infection on enbrel - it's a risk...nothing is certain. I do plan to take precautions ..& be serious about it because of my past.
Qadosh2him said:
I was most recently on Enbrel however I just had to switch rheumies and my new one is too reluctant to take a chance and order a biologic for me. The Enbrel wasn't really helping so I was hoping he would go to a more potent infusion....and instead he terminated them altogether and put me on Prednisone as a standing dose to see if it will diminish the pain.I've been taking 5 mg and it hasn't done much....he said I could increase it to 10 if need be. The reason the rheumies are reluctant for me to be on an infusion is because of my infection history. I have had numerous life threatening bouts with infection and because the biologics destroy the immune system, all the docs feel that it would be flirting with death for me to be on a biologic. This is endlessly frustrating because I desperately need the medicine. Good for you for going back tothe piano. I am going to go back to knitting also. Tired of saying "I can't." time for some determination.
I have been on Remicade for six years. It was an answer to my prayers. I had tried all the others; Enbrel, Humira and they did nothing. I still have a few days a month that can be rough but I have a life again. Not the life I had before; I do not think we ever get that again, but a life that is full and busy with church callings and volunteering running a youth bowling program for my county.
You will have better days coming and I hope the road with infusions will work just as well for you as it has for me. Good Luck and keep me posted about your experiences or any questions you may have along the way.
I used to look at my infusions as mini breaks! I had mine at the doctors office and I would tease the infusion nurse about it being my spa treatment and I would tell her that next time I wanted a facial, manicure and pedicure. The truth is that it was really nice to have a 3 hour break where you could really relax especially when I was working. I would often doze off and I would bring reading material, my ipad and coupons to file and other jobs that I could actually do without interuption. View it as personal me time and do something you really enjoy doing so that it becomes a treat. Think of it as your own personal retreat. My only regret is that I would schedule the appointments in the am and then go directly to work afterward to teach. I would then schedule the next appointment in the afternoon and teach in the morning so that it was fair to my students. I was very exhausted when I got home and missed lunch and my planning periods on those days.
I have not had any of these meds as yet. How often do you have the infusions? When I had Lyme disease I had infusions every day for 30 days, but they put a pic line in under the skin to hook into each day instead of re-sticking me each time. Is that an option for the Remicaid infusions?
Hi,I have been on remicaide for almost a year now. My rheumy had to up my dose to 800mg every 6 weeks week. Since then I am a lot better. When I wake I am not in so much pain. I still can not exert myself,no heavy cleaning or walking marathons. Then by the 5th week I feel the need to another infusion. The day of the infusion is a bit of a drag. I feel wiped out. I usually come home put on my PJ's & sleep the day away. Other then that I have no adverse effects. I wish you all the best. Keep us updated on how it goes for you.