My Reumy decided that since I had a rash to MTX not to use it with Remicade. She's going to give me Prednisone and Benedryl with my Remicade.
Has anyone had this experience?
The Prednisone and Benadryl are pretty standard for Remicade administration. It helps to prevent any allergic reactions to the medication. If the steroid is given through the IV with the Remicade infusion, it can make you pretty wired for the rest of the day. Its actually a different steroid called Solumedrol when given IV. Even with the Benadryl, I felt pretty whacked out for the rest of the day and had trouble sleeping. Just a heads up for you.
I take methotrexate with the Remicade, but when I first started my infusions, I was on Remicade only. There are others here that are Remicade only and it is not that unusual. I'm not sure what the stats are for how many patients are with and without MTX. I chose to add it because they work well together. Initially, I refused the MTX because I was afraid of the side effect profile. I am doing pretty well on both now with minimal side effects.
I had my first infusion of Remicade with a steroid by IV and Benedryl by capsule. The doctor and nurses really didn't tell me much unless I asked. They tried to give me Tylennol, but I told them that I don't take it because I take Tegretol-XR. Tylennol can counteract with the Tegretol. So, there I was spitting it out.
Three and half hours from start to finish. I was groggy, had a migraine and had hot and cold flashes. The next morning I woke up tired and took a nap early in the day.
Today, I'm still swollen all over and literally uncomfortable in my skin. I just hope this all gets better. I never have reacted well to saline IV's in the past. This was no different.
Have a discussion with both your doc an pharmacist re the tylenol. It makes a huge difference. The reason you take tegretol is where the reaction concern comes from. Siezure huge concern, neuralgia not so much.
Also discuss the IV siuation, that kind of reaction can be indicitive of other conditions also auto immune.
I've been having seizures and migraines for almost 10 years. Both the neurologist and pharmacist agree no to the Tylenol.
The swelling on and off has been going on since a flare up in Dec 2013. Worse of course with saline IV.
Thank you for coming back with that. I wasn't doubting you BTW but as Tegretol-XR is being used more frequently with FM there are a lot of folks suffering more than necessary by avoiding Tylenol when siezures aren't the prinmary problem.
What have they told you about the saline intolerance? I'm actually pretty curious. There has GOT to be an alternative.
Never a rash with Remicade and I have been on it 4 years. I don't couple it with MTX as I had way too many side effects with it orally and by injection. Funny thing about Remicade. Sometimes it works almost instantly and sometimes it doesn't work at all. I guess it is the same with any biologic out there.
What have they told me about saline intolerance? Nothing! I'd never heard the term before, but I researched it online of course. I did not find an alternative to it though. I feel like I have more questions than answers now.
Geez. I’ve never heard of saline intolerance either, but I’m sure I have some sort of reaction to it. I third space fluids like nobody’s business and it makes my hands swell which makes them ache. Luckily, the amount they give for the Remicade infusions doesn’t cause that much trouble.
The biggest effect is on the celiac plexus. Although the position of the celiac ganglia varies, it has been reported to be anywhere from the T12-L1 disk space to the middle of the L2 vertebral body. Therefore, the celiac plexus supplies sympathetic, parasympathetic, and visceral sensory afferent fibers to the upper abdominal viscera, including the pancreas, liver, biliary tract, gallbladder, spleen, adrenal glands, kidneys, mesentery, stomach, and the small and large bowels proximal to the transverse colon. As you can imagine this cause some really nasty and unexplained pain.
I took Remicade for years...switched to Enbrel for convenience and now I'm going back to Remicade in June. I never took Methotrexate with Remicade, only by itself or with Enbrel. My doc always tried to give me benadryl and prednisone with the Remicade but I refused it since the benadryl made me too sleepy to drive home after the infusion. IV benadryl is like a knock out drug to me. They use it to prevent a reaction to the remicade since it has a high rate of reactions.
I've had 2 Remicade infusions. This last one they gave me 1/2 as much saline. I didn't get a migraine! They also continued to give me prednisone infusion and Benedryl orally. Thank you .
Nursedina said:
I took Remicade for years...switched to Enbrel for convenience and now I'm going back to Remicade in June. I never took Methotrexate with Remicade, only by itself or with Enbrel. My doc always tried to give me benadryl and prednisone with the Remicade but I refused it since the benadryl made me too sleepy to drive home after the infusion. IV benadryl is like a knock out drug to me. They use it to prevent a reaction to the remicade since it has a high rate of reactions.
Hi,
From my past experience, never had remicade, had everything else, but did had very much prednisone and after a couple of months gained 30 pounds, became pre-diabetic-from the prednisone, although different drugs don't always affect everyone in the same manner. My entire family is in medicine, I choose engineering...But the warn me when they can and I learned to read and understand many things in a PDR. Have my own and fully investigate the concomitant use with other drugs and side-effects before O allow any doctor to give me a prescription, it has made some of them angry also, but it is my body and health, so I make a layman's attempt at taking a proactive approach when it comes to my medical management. Now after 10 years od Enbrel, Methotrexate, Humira and various ointments along with PVB light treatments, I am only a little better and filed for SSD 3 weeks ago. Use of immunosuppressive drugs in combination, have not all been clinically studied , like the stelara in combination with my light treatments, it's in the drug manufacturers sheet they have included with you meds and takes forever to read and understand, but has helped me avoid some serious side effect because the doctors did not wish to discuss that aspect of treatment. Nor is my dermatologist in agreement with my rheumatologist as to what serious interactions take place. So, I take the time and read fully the side effects , interactions and concomitant usage sections of the drug vendors handout so I have an idea of what I am facing. At 61, I would like to retire and live comfortably a few more years and not have to worry that my meds will cause more disease than I already have and hasten my demise..
Immunity? said:
I've had 2 Remicade infusions. This last one they gave me 1/2 as much saline. I didn't get a migraine! They also continued to give me prednisone infusion and Benedryl orally. Thank you .
Nursedina said:I took Remicade for years...switched to Enbrel for convenience and now I'm going back to Remicade in June. I never took Methotrexate with Remicade, only by itself or with Enbrel. My doc always tried to give me benadryl and prednisone with the Remicade but I refused it since the benadryl made me too sleepy to drive home after the infusion. IV benadryl is like a knock out drug to me. They use it to prevent a reaction to the remicade since it has a high rate of reactions.
I need to share the experience i had with taking MTX. I took MTX for 5 or 6 months. I began getting the dry cough after about 4 months. The next thing you know i was in the hospital for double interstitial pneumonia and suffocation. I was released from the hospital after a very difficult week on 4 liters of oxygen and steroids. There is no cure for what remains but the steroids are helping. I still don’t the prognosis, its wait and see what is permanent. Please insist on a lung X-ray when you start taking MTX! If any cough develops, insist on another X-ray. Be persistent.
I took MTX before Remicade for about a week and then it got a rash so I stopped. I had Remicade for about 3 or 4 treatments and then had trouble with asthma. I went the ER and had a chest X-ray that showed no bronchitis or pneumonia. My allergist changed my asthma meds and after a month I'm better. No cough, no wheezing. I feel fine again. Thank God. My next Remicade infusion will be Oct. 3rd. The Rheumie will pre-treat me with prednisone and an antihistamine.
Linda said:
I need to share the experience i had with taking MTX. I took MTX for 5 or 6 months. I began getting the dry cough after about 4 months. The next thing you know i was in the hospital for double interstitial pneumonia and suffocation. I was released from the hospital after a very difficult week on 4 liters of oxygen and steroids. There is no cure for what remains but the steroids are helping. I still don't the prognosis, its wait and see what is permanent. Please insist on a lung X-ray when you start taking MTX! If any cough develops, insist on another X-ray. Be persistent.
Wow, I looked back to my start date for Remicade and I've been on it over a year! I am so much better it's amazing! I started back at the YMCA and found I could ride recumbent bikes with just peddles and one where you use your arms as well. I row occasionally. I also use weight machines. I only do low weights and 20 reps. But over 3 months I've been able to increase the weight slowly, walk more and have energy and less pain! Every time I lift weights I do the cardio I mentioned and I stretch. Doing this 3 to 4 days a week has also reduced my stress level.
Right now I've had asthma and Brohncitis for nine days. First I saw my primary MD, but she didn't get the proper dx. As the asthma got out of control I went to see my allergist/immunologist. He diagnosed Brohncitis as bacterial not viral and gave me 14 days of Augmentin and stronger meds for my asthma.
I miss breathing normal, not coughing, sleeping sitting upright and going to the YMCA. Not to mention my Remicade treatment. I'm already two weeks behind. But no aches, pains or swelling!
Hope your bronchitis and asthma are better soon Immunity? so your Remicade schedule doesn't slip too far ... great to hear that apart from the chest problems you're doing so well :-)
I do Remicade with MTX, I was getting delayed headache and vomiting from the Remicade. Now I get solumedrol, tylenol, phenergan, zofran, mesna, toradol (sp?) and benadryl before the Remicade and I feel great. Remicade is working and the side effects are mediated by the pre-meds. I actually felt really great when I left the office last time, (it takes a lot to make me drowsy.)
Hey everybody! New member @SubliminalFlicker is about to go on Remicade. How is everyone doing now? It’s been a while since we’ve heard from you.
Do you have any words of wisdom or advice for SubliminalF? It would be great to hear from you again.
Seenie
PS if you haven’t logged into our new site yet, sign in with your email address, and then say you forgot your password. (Don’t try your old pw, the new system doesn’t know it.) Then check your email and follow the instructions.
I want to hear positive feedback on Remicade…the concept of infusions just doesn’t sit well with me. I’m seriously thinking about retiring when I turn 66 in two years, and, you know me, I’m already worried about having to stop Enbrel and switch to Remicade when I go on Medicare. I’ve read some of the comments on this thread, and what’s this about having to take Prednisone and other meds to avoid allergic
reactions or other SEs to Remicade?
I do hope there’s some positive feedback about Remicade!
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