Hi there, I'm new here and hope someone can help me out.
I've been taking Remicade for RA and PA for 20 months now. We went with this over Humeria and Enbrel because of the psorisis and a problem diagnosed as microscopic colitis. Basically, the doctor said, colitis symptoms caused by the arthritis.
I have not been taking methotrexate or any other drug with the Remicade until recently when I started Lodine. It made me feel awful and I stopped after 3 weeks of 1/2 dose (due to liver issues I was diagnosed with in December.)
The last 2 times I had the infusion, I got very itchy within 30 minutes of starting the drug. This last time, it was worse and my eye swelled up and got covered in film and hurt like heck. I recalled last time this happened - only more minor. The eye issue happened soon after my infusion ended rather than near the beginning. The nurse insisted that I was on too low of a dose still for the reaction to be the Remicade.
3 days later, my joints hurt so bad that I wanted to jump off a bridge (or fall off since I couldn't possibly jump!) I was utterly useless and couldn't move. I'm better than I was, but I definitely hurt everywhere and it is tough to do much of anything - a far cry from my usual "I FEEL GREAT" after my infusion. I stopped the Lodine about 5 days after the last infusion as I felt terrible on it. I was supposed to start Plaquinil since I won't take methotrexate...but, I am afraid to start it. I already have hair loss, liver problems, and now immune issues as I can't stay healthy for more than a couple of days. I found a warning also that said, "do not take this medication if you have psorisis" - which I do, though it is (luckily) minor by comparison. At this point, I have a hard time believing Plaquinil will help me anyway.
Is this an allergic reaction? Has anyone stopped using Remicade if this is the road I need to take? From what I understand, stopping it will bring back the arthritis 10-fold. But, for how long does this usually last? Will it and can it go away back to one's normal pain level? Or will it ruin the joints so bad you'll be worse off either way? Is it definitely going to happen or possibly not? The fact I hurt so bad right now, only 9 days after my infusion, really scares me. I have 2 small children and feel like a rotten parent as it is since I'm unable to do so much with them. I've been dealing with nothing but health issues since my 2nd was born 4 years ago and Remicade has been such a wonder drug up until now. Does anyone have PA and use Remicade with Plaquinil? Do you have any suggestions or insight?
By the way, I opted NOT to call my doctor for 2 reasons, 1 - I see him next week and figured I would have to wait anyway. 2 - No matter how coincidental the situation, he insists people do NOT have allergic reactions to drugs except on very rare occasions.
CaMama, welcome. I am sorry that you are having problems with your meds. I take Enbrel and Plaquenil. I also have psoriasis. My Dr. told me that it is fine to take the plaquenil with psoriasis. But I am on a very small dose of the plaqeunil. I think 200mg/day. The regular dose is 800mg/day. He wanted to start me off with the smaller dose and work on up if it does not work. I have not had any side effects witht he plaquenil. As to the remicade reaction, it could be an allergic reaction. If it is getting worse with each infusion then you need to tell your Dr. There are pre-meds that they can give you to keep any reaction in check. Hopefully one of the other regulars will be on to post who have had a reaction to remicade. The reactions are far more common then your Dr. is letting on. Most reactions are fairly scary but there are drugs out there to reverse the reaction. Make sure you speak up and keep speaking up. If you Dr. refuses to listen to your concerns maybe you need to find a Dr. that you can feel comfortable with and who listens to your concerns and takes them seriously. Hope this helps you. Keep in touch. Hugs. Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
Remember you are special and God loves you very much!!!!
How long have you been taking Plaquinil? It looks like my doctor wrote my Rx for 1 200mg pill 2x a day. Maybe I will try it at 1/2 doses first like I did the Lodine.
The last 2 Remicade shipments have been coming with a cortisone/steriod infusion to give before the Remicade. I think to avoid allergic reactions - which, I believe I fit the timeline for when people start rejecting the drug. However, I have refused it. I took deltasone (another steroid - pill form - in the same family as prednesone) about 9 years ago. It made me (literally) insane. I shudder at the thought what an infused steriod would do to me.
I will talk to my doctor next week when I see him. It seems most of these doctors just want to give you more medication on top of what you're taking. After awhile, you are taking so many things to counteract the first drug - you never know where your symptoms are coming from.
Hopefully, there are some people out there who have stopped Remicade and can tell me about it as well as plaquinil and if they've experienced any problems.
Camama, I can understand your fears. Although you took a steroid before, each steroid is going to have a slightly different action. If they all worked exactly the same you would not need all the different kinds. Predisone works differently then cortisone (although similar family of steroid) I'm not sure why they are giving a steroid/cortisone combo with the infusion but for reactions you could take infused benedryl. Talk to you Dr. If the remicade is not working what about the enbrel? I know you mentioned other issues that prevented it but the enbrel and remicade are in the same class of drugs. Ask about it. As to the plaqenil, try the full dose he has given you. It will take about 2 months to really get into your system. It is still not at max dosing. I am on one pill a day but the enbrel is holding me pretty good so I really don't need much of an extra med. Often they find that with the remicade and the enbrel that that med alone does not give the max. desired result. Therefore they add a secondary med to help you. The Dr. really do not want us drugged up. If you are having bad reactions and have to take more meds to counteract the reactions of the main meds then maybe you need to try switching. I firmly believe that we don't need to suffer with side effects. If the side effects are so debilitating that we need something else to make it bearable then maybe we need to try something else. I am lucky that my Dr. also feels the same way. He feels that having the disease is bad enough. We need to have some sort of quality of life while on the meds we are. Sorry if I seem to be lecturing. Do not mean it that way. I wish you luck with the Dr when you go to visit. ((((((((HUGS))))))))))) for you!!!!!! Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
Remember you are special and God loves you very much!!!!
I don't mind the lecture...sometimes we get so engrossed in our own situations, it's hard to step back. Plus, when you have a husband who is pushing you to stop everything (he doesn't quite get it when it comes to all this) - it makes the worry even louder.
I will question the different drugs and see what the dr says about what happened. He has been pushing a 2ndary drug for some time for the reasons you mentioned below. That is why I caved in on accepting the plaquinil and lodine. The lodine was a bust for me. I refuse methotrexate as I took it for a year and landed in the hospital. I felt rotten on it as well and had breathing issues while on it.
I'm bummed there hasn't been anyone to give comment on the flare up I experienced 3 days after the infusion or the allergies that hit during the actual infusion. Since they don't do infusion centers here anymore and I have to have them done at home, I am unable to talk with other Remicade patients now locally.
camama, myear is here when ever you need it. Sorry I haven't replied earlier, it has been hectic around here and I haven't been on for almost 2 weeks. I hope all goes well with your Dr. Trust him. Talk to your hubby about how you feel, the arthritis, the pain associated with, etc. Help him to see why you need this stuff to survive life. He is probably just as worried as you are about the side effects and he doesn't know how to tell you. Keep the lines of communication open so that you can grow as a couple through this. I'll be praying for you. Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
Remember you are special and God loves you very much!!!!
Thanks, I appreciate it. I've agreed to try a steriod infusion prior the Remicade. The doctor changed the Rx from hydrocortisone to (I think) soluble mederol 40 mg. He swears the drug will be out of my system within in a day. My primary said the soluble mederol is a form of prednisone which scares me because that was what made me insane in pill form (well, deltasone, but same family.) So, now I'm even MORE worried, but feel I have comitted myself to trying it and want to avoid what happened last time.
I've lost my job due to the auto-immune issues I've been dealing with these last few months. Boss called me today and apologized, but he can't wait for my return. I understand his position and was expecting the call. I've been home being hit with one problem after another and almost no relief in between. I'm trying so hard to be positive, but as I'm sure anyone with chronic pain will agree, it can be hard some times. To be constantly beaten down every time you try to get up is tiresome and wears on you physically as well as mentally and if I stop and think about it (which I try to avoid doing), I feel like such a failure and just want to cry - it's worse as the pain increases, which I'm sure is common.
Thanks for listening. I AM doing better and it's been nice reading and sharing with others. I'm so glad I came across this website. It helps to finally hear there are other people with my same issues and challenges who can understand what I'm going through and that I can lend a sympathetic ear back.
Wow, not just the disease but now the job too. I'm so sorry to hear. I am sure there are no words that can really help you right now but just know that you are thought of everyday. My year started very similar in that it seemed that everything that could go wrong did. I felt like I was being beat on everyside and wondered if I would ever feel "normal" again. I have made it out of the despair but it has not been easy. Try not to think about it too much but think on your circumstances enough to come to accept it. I know it sounds wierd to say that but I have found that just ignoring the emotions do not make them go away. You need to give voice to your feelings and give yourself permission to feel them. That is the first step to finding acceptance with your circumstances. Realize that you have a right to feel the way you do, then let it go. When the feelings surface again, do the same thing. You are allowed to feel hurt, angry, scared, worried etc. It's what we do with these emotions that can make or break us. I'll keep praying for you. Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
Remember you are special and God loves you very much!!!!
My name is Susie, I post on the crohns & chronic pain boards. I am on Remicade, as I cannot tolerate steroids, I go into congestive heart failure. Yes, you are having a reaction to the Remicade and your dr should order pre-meds for you. I am going into my 3rd yr of Remicade. I had a reaction on my 3rd infusion, chest tightness, could not breathe and the pain in my left arm & chest was awful. I thought I was having the big one. So, I was given IV benadryl and soluable medrol. We were able to resume the infusion after awhile but never increased the rate of the drip and I did fine. Now, I get pre-meds on all Remicade infusions. I still get the IV benadryl and I take an Allegra the night before. Had to stop the Soluable Medrol, we even dropped the mg to 20mg and I still had problems. I go every 4 wks for my infusions, plus I am on Imuran, dr says its suppose to enhance the effects of the Remicade.
If your dr is till refusing to believe its a reaction, got to the Remicade site and print it off & take it to the dr. Hope you are doing well. Susie
Holy cow! Congestive heart failure!? Every 4 weeks!??? I would have gone running scared. Do any of the pre-meds stop that? That is insane.
I have my next infustion on May 1st. I go every 7 weeks. The doctor perscribed the soluble mederol 40 mg to take as a pre-med and I will have my first dose then if I don't chicken out. He DID say the pre-meds are to avoid such problems during an infusion without actually SAYING it was an allergic reaction. Kinda funny.
However, as I mentioned, I'm very worried as pill form of steriods made me looney (literally.) What type of problems did you have on it? For pre-meds, I currently have only been taking 25 (sometimes 50) mg of bendryl (pill, not IV) and one extra strength Tylenol prior infusion. I now am also taking Plaquinil 2x a day (200 mg) - though, I doubt that has any correlation to the infusion.
Have you noticed any hair loss? Like clockwork, 2 weeks post-infusion my scalp goes numb and itchy and then there is just a little more thining in the mirror that I can see - right up front. How nice, like I need ONE MORE THING to make me more self-conscious about myself. Errrgh!
As for the job and my emotions, I'm trying to stay positive. But, I'm sure you are right, Oreo about letting it get out...I don't let it enough - I end up crying during these Sylvain Learning Center commercials they show on the TV. :) However, though the work situation is a drag and the financial stress over time is yet unknown, the fact I no longer have to stress about work (as in "when will I be better enough to return" and "how long will they continue to hold my position for me") has lifted. Oddly, that has helped me deal with bad days easier.
I laughed when you mentioned crying at the sylvan learning commercials. I thought I was the only one who got teary eyed at those. I really do find these days that it takes less and less to get me to feel teary. I hope this to will pass. I'll chock it up to PMS. At least that is my story and I'm sticking to it. Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
Remember you are special and God loves you very much!!!!
Whew! Glad I'm not the only sap around! A few years back it was something like a Luvs diaper commercial and earlier than that was a coffee creamer commercial or was it Hallmark? I cannot remember!
Came down with terrible rash...think I will post a question about that. I wonder if it is the plaquinil. Doc said it may cause one and I've been on it for 2 weeks now.....
I am given my benadryl in my iv, same thing when I was getting soluable medrol. I just do not tolerate steroids and it has nothing to do with the Remicade. The only thing I was ever given pill form was Tylenol.
If I go to 5 wks I start getting sick, 6 wks I am hospital material. Every 4 wks is fine for me, I have a port in my chest, I had terrible veins before starting Remicade and they got finished off pretty quick, so now I have the port and its so much easier. I would spend over a half a day at the hospital, mostly it was them attempting to find a vein that did not blow. I have had as many as 6 veins blow a morning and thats not really how I wanted to start my day. Sometimes I have to get my infusions at a 2 week interval, just to give the Remicade a good kick start. Say I go for a treatment on my normal scheduled day, but afterwards several days go by and I don't feel any better, so we schedule another infusion 2 wks later and that so far has worked if an infusion does not work. This is probably due to me being on it so long.
The only time my hair started coming out was when I was put on Asacol, and when I first started the Imuran it fell out some, but stopped. Could it be some of your other medications causing this?
I had a terrible flare hit me New Yrs Eve a yr ago, I had the bad diarhrea & vomitting thing, blood in the stools, doubled over in pain. Well, I was admitted, they called in a gi to take care of me, after me making it very clear I do not tolerate steroids, he went ahead and gave them to me by iv, I was so sick I didn't know it. He had me on 60mg of Pred and by day three I swelled up all over and could not get my breath, he came in to see me while he was doing rounds, took one look at me and said when did this start. I said I told you I do not tolerate steroids and obviously you did not listen, I have a three day window before the CHF kicks in and today is day 3. So, then it was but I started you on a low dose, 60mg, 40mg, & 20mg over a three day period. I said well you are not listening even now, again I do not tolerate steroids this is why I am on Remicade & Imuran. My gi was out of town so this is why I saw this guy. I have found so many drs do not listen and always think they know best. I get scared every time I get put in the hospital.
Well, I need to go to bed its so late. Take care & will talk to everyone soon. Susie
Yikes, so what you are telling me, is that my doctor was just telling me what I want to hear about the steriods being out of your body within 24 hours AND it could take a couple of days for me to have a reaction IF the IV form is just as bad for me as the pill.
I'm so sorry to hear about your grief. When I was getting the infusions at the hospital, one of the nurses there did the ports and was telling me about it. Wth the frequency of your infusions, it definitely sounds like a good idea. Does that not have to be changed out? Do they medicate you to put it in? I have one and only one vein that they can access regularly - your standard spot for drawing blood...I'm trying to get my nurse to do everything she can to get another one found. My veins are small and hard to find. Lately, after IV, my arm hurts for a week or so now and I'm getting worried that it may collapse in time. As it is, it feels like scar tissue is building up and it hurt to get poked there in the elbow. Between the IV and getting blood work done on the same place for the last couple of years, that just can't be good.
I've been on antibiotics a lot - and that could contribute the the hair thinning. I've also put on an enormous amount of weight and am having trouble loosing it. My liver enzymes are high and that could contribute to the hair thinning AND the fact I'm having trouble with my weight and why they can't find the small but usable veins (though, even when I was thin, there were problems finding veins.) However, even with all that, the scalp itching and numbness happens like clockwork 2 weeks post infusion.
I was suffering from colitis for a few years prior starting the Remicade...I cannot fathom going through what you are dealing with and the CD. I hear your worry and frustration with doctor, I am so fed up with the medical industry!
Am I reading right, you have problems with steroids? Well, you know you can have Remicade w/ the steroid, I do. I do love my port for my infusions. No, I am not medicated when they put the needle in, its really painless, the sticks on veins hurts alot more, its done so fast its nothing to me. I really do not know how long the ports last. Shoot, I hadn't thought about that one. But, when I am hospitalized for some reasons the nurses will not use my port, instead I suffer with blown veins & blood clots in the arms. I think they are too darn lazy to use my port, its has to flushed with heparin to keep it open. I don't know, I always end up in fights w/nurses for not using the port. Hope everyone has a pain free day tomorrow. Love to all, Susie
Thanks for being here susie. It is great to have someone with alot of experience with remicade on the site. I love it when people are open to sharing their experiences with those of us with questions. It is great to learn from each other. Keep posting. You are in my thoughts and prayers. Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
Remember you are special and God loves you very much!!!!
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When I took pill form of steriods years ago, I went a little crazy. I felt like I was living inside a glass box filled with haze inside a glass bowl....and that doesn't even begin to describe how pshyco I was on top of it.
The last 2 infusions I had, I had some allergy problems. I already take pill form bendryl and tylenol prior infusion, the doctor talked me in to trying the steriod to avoid the reactions I'm starting to have. I am currently having liver problem and seem to be extra sensitive to everything....so, I agreed to try it for now. I just hope the steriod is out w/in 24 hours AND the fact it is one dose I won't react to it.
I cannot understand why the hospital nurses won't use your port. I wonder if you can insist on a nurse on duty who specializes in them when you are there (of course, I hope those instances are very far and few between for you) to help you out with that. I don't know enough about them to know any reasons why they won't use it.
Hi there...sorry I've been MIA lately. My son had scarlet fever a couple weeks back and between my own issues and taking care of him, it's been pretty busy around here. My son is (thankfully) okay and hopefully will stay that way. Considering he has been eating like a horse the last few days makes me think he is well recovered and making up for lost food while ill. He'll be 4 on Mother's Day.
I had my infusion yesterday and took the solu-medrol. It made me very jittery almost to the point of manic, but I survived. I took Zyrtex instead of Benedryl. The allergist gave me children's tablets (since I'm having such a hard time with mediations right now) to try to get rid of those nasty hives. It worked where Benedryl failed so I tried it yesterday. It makes me really tired, but it seems to help some of my problems. Between the 2 new pre-meds, they did not eradicate the infusion reactions completely, but helped greatly. My eye did get a little goopy, and still is, but it is not like the last 2 times where it swelled and was awfully painful. I did wake up at 2:30 am this morning itchy all over (usually it happens within the first hour of the infusion which this time I was not itchy at all during.) I was up for 2 hours scratching. I've been a bit irritable today, but that could be the lack of sleep when I really need extra after an infusion and the allergy medicine.
I did walk the kids to the park today. It hurt my feet, but I survived and sat on the bench for an hour while they played. Enough rest to let me walk back home with them.
I had problems logging in the last few days, I think it was a setting on my PC. I should probably move on from this discussion and get invovled elsewhere. I hope you two are well.
