Remicade Club Support Group

Crohn's Disease Forum

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It did close in 2010 with Remicade treatment. I have not had issues until just a month ago when there was drainage and I could feel it. (it's located at the base of my vagina) I was put on two antibiotics which quieted things down.

I want Remicade as an option when I absolutely need it since I know it works for me. As of now, I have not developed antibodies. Because I feel good and my symptoms are only fatigue and minimal joint pain, I want to wait.

Thank you for your input.

i also had a re acuring fistula (sp) in between my vag amd butt. I have had 2 infusions so far and its healing already. My hair is falling out like crazy..but my stomach pain is slowly going away. My nails are growing like crazy (this has NEVER happened...i never had any nails). I still experience body aches..but hopeful with more treatments!

i say out weigh the good and bad..and see which one is stronger..the good or bad. For me..the good out weighed the bad..and i was left out of options.
 
Has anyone needed to get a port due to vein scarring from the frequent injections? I've been on Remicade every 6 weeks for over 4 years, and they are having a lot of trouble getting IV access every time now - in fact, my recent surgery was delayed by an entire hour because the nurse, the IV team, even the anestheisiologist couldn't get my IV started! My docs are recommending a port but wanted to see if anyone else has gone down this road??
 
Just got my Remicade approval. #iamthankful

A Writer's Life Interrupted
Crohn's survivor and advocate. Humira quit on me, tried the natural route that cost me 500.00. Will stay on SCD. Currently on prednisone, waiting an approval for Remicade. 6mp is a no go as it hurt my liver and I am allergic to aspirin which rules out mesalamine. Biologics and prednisone are all I have left.
 
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I am so happy and hopeful. I am so grateful.

A Writer's Life Interrupted
Crohn's survivor and advocate. Humira quit on me, tried the natural route that cost me 500.00. Will stay on SCD. Currently on prednisone, waiting an approval for Remicade. 6mp is a no go as it hurt my liver and I am allergic to aspirin which rules out mesalamine. Biologics and prednisone are all I have left.
 
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Hello everyone my name is Desiree and my son has ulcerative colitis. I am looking for support and advice for a new journey that we will be embarking on soon. My son was diagnose with ulcerative colitis when he was around 8 years old (he is now 12) and has been on sulfasalazine, azathioprine to treat his ulcerative colitis and cyproheptadine for an appetite enhancer. Since the sulfasalazine and the azathioprine have not worked, he will begin remicade treatments (waiting for approval) as soon as possible. In addition to his ulcerative colitis, he has sickle cell anemia. I was hoping to join this support group to not only receive information and advice but to also have a second family. Thank you for taking the time to read my post. May God bless and heal you all.
 
Hi BWNTB06
My son is 14 and has crohns, we are having breakfast right now before heading in for his first remicade infusion. I hope approval comes quickly and it works really well for him
 
My prayers are with you and the children.

A Writer's Life Interrupted
Crohn's survivor and advocate. Humira quit on me, tried the natural route that cost me 500.00. Will stay on SCD. Currently on prednisone, waiting an approval for Remicade. 6mp is a no go as it hurt my liver and I am allergic to aspirin which rules out mesalamine. Biologics and prednisone are all I have left.
 
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First infusion is Tuesday at 8:30 am. A little nervous, but not bad.

A Writer's Life Interrupted
Crohn's survivor and advocate. Humira quit on me, tried the natural route that cost me 500.00. Will stay on SCD. Currently on prednisone, waiting an approval for Remicade. 6mp is a no go as it hurt my liver and I am allergic to aspirin which rules out mesalamine. Biologics and prednisone are all I have left.
 
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How do you know if you need to drop from an eight week schedule to something shorter? Are most of you on eight weeks? Seems like six is pretty popular.

DS is on an eight week schedule (has only had loading doses) and now that we are four weeks past his last dose, I'm getting nervous and expecting symptoms to show up any time now. I know I'm probably being paranoid. I'm just so desperate for this to work for him.

If you start seeing symptoms, do you just call and try to get in sooner?
 
How do you know if you need to drop from an eight week schedule to something shorter? Are most of you on eight weeks? Seems like six is pretty popular.

DS is on an eight week schedule (has only had loading doses) and now that we are four weeks past his last dose, I'm getting nervous and expecting symptoms to show up any time now. I know I'm probably being paranoid. I'm just so desperate for this to work for him.

If you start seeing symptoms, do you just call and try to get in sooner?

I'm in a similar boat. I've been doing 8 weeks in between infusions, but one time, I had emotional stress at about 6 weeks and started to flare:eek:. (Of course the most logical answer to that is pray for resilience and strength to not get emotionally stressed out- see counselor, etc), but since it happened, I asked my GI and he agreed to schedule the remicade for 6 weeks.

I think you're right, if he starts showing symptoms at 5-6 weeks, ask about the 6 wk plan. However, if he can 'hold out', of course there are reasons for minimizing the number of infusions over a lifetime. I'm hoping to be OK on the 8 week plan into the future. Good luck and I hope your son keeps doing well.
 
I'm on an 8 week schedule. Symptoms reappear about 7 weeks but not terribly - just a couple of bouts of D and some fatigue. But nothing like before Remicade. The only thing the Remicade didn't help was the arthritis but I'm also 55 years old and some of it is probably age related. My rheumatologist put me on Sulfasalazine for that.

This time (just had my infusion last week) I was 10 days overdue and nothing significant happened.

I hope it works as well for DS.
 
How do you know if you need to drop from an eight week schedule to something shorter? Are most of you on eight weeks? Seems like six is pretty popular.

DS is on an eight week schedule (has only had loading doses) and now that we are four weeks past his last dose, I'm getting nervous and expecting symptoms to show up any time now. I know I'm probably being paranoid. I'm just so desperate for this to work for him.

If you start seeing symptoms, do you just call and try to get in sooner?

Personally, I am on a 4 week schedule. I was seeing little to no improvement in my symptoms, but the blood work was showing improvement. I am only now starting to feel like remicade is doing something.

As long as DS is feeling fine, I would assume it is working, usually about a week before my next dose I start feel really crappy again. If the symptoms show up much earlier than that I would consult your GI doc.
 
Does anyone here still feel pretty good after 8 weeks and has pushed their infusions back? Is there an option to go longer to get less infusions?
 
My first dose is tomorrow morning. I am running a fever of 99.5 and my rectal area is just a mass of fissures. I told my doc about the fever/pain and he isn't concerned. He wants me to start ASAP. Could this be a potential problem, and if so what might that problem be?
 
I did to. But the remi closed my nasty small to large bowel fistula I had named Victor because it hurt so much, and a small fissure i had. I tried my share of things to get rid of it and nothing worked and remi was the last chance. I'd say it started to close it within 3 months and it was closed it Nov. And then things went bad for me but I'm very happy with the remi. I wish you very good luck with it and I hope it will heal your fissures. :thumleft: :dusty:
 
I bet. I am too. Good luck with the infusion tomorrow. :) I have mine on the 28th. eight weeks is such a long time! :ybatty:
 
Please help! Opinions needed! I have been approved for remicade and should be starting my first infusion very soon. My question...how sick were you when you first started this drug? I have symptoms such as diarrhea (but not everyday)...basically I'm either constipated OR going several times a day. Fatigue is often and very hard to deal with. I don't have pain very often - unless I have an obstruction or inflammation that puts me in the hospital. The last time I was in the hospital was in September. Several meds haven't worked well for me. I wonder if I'm making the right decision to start remicade. My doctor says that I need to prevent the disease from destroying my body for worse. Through the years, I have just dealt with various symptoms and always refused to take meds but my new doctor who I met when I was last admitted in hospital tells me that I need to take care of the disease and not ignore it. So that is why I would like to know how serious your symptoms where when you made the decision to do the infusions? Maybe I'm in denial...or maybe not?? I just don't know if starting remicade is too extreme for me.
 
Your Dr is right, you need to get your disease under control. I've done the gambit of meds that haven't worked, remicade hasn't been the fast acting solution for me that it has been for some others, but it has definitely helped. You want to try to put off surgery for as long as possible. If your dr thinks that remicade will help, then you should try it.
 
Please help! Opinions needed! I have been approved for remicade and should be starting my first infusion very soon. My question...how sick were you when you first started this drug? I have symptoms such as diarrhea (but not everyday)...basically I'm either constipated OR going several times a day. Fatigue is often and very hard to deal with. I don't have pain very often - unless I have an obstruction or inflammation that puts me in the hospital. The last time I was in the hospital was in September. Several meds haven't worked well for me. I wonder if I'm making the right decision to start remicade. My doctor says that I need to prevent the disease from destroying my body for worse. Through the years, I have just dealt with various symptoms and always refused to take meds but my new doctor who I met when I was last admitted in hospital tells me that I need to take care of the disease and not ignore it. So that is why I would like to know how serious your symptoms where when you made the decision to do the infusions? Maybe I'm in denial...or maybe not?? I just don't know if starting remicade is too extreme for me.

When i started remicade (in Dec) my symptoms were D, Joint and overall body apin BAD, stomach pain (not the worse i ever had..but it was there), and vomiting and fitigue. I also had a fistule between my vag and butt.

i have had the infusion 2 times now (my next due in the 23rd). and it has helped with mu D, it has made my fistule go away. I still have the body aches. My stomach was feeling great but within the last week it atarted hurting again...and nausea is back.

Good luck. I personally think its a scary drug. i jave to take bendrly before i take it as i had an alergic reaction my first time and my hair falls out like crazy now. But i THINK (dont want to jinx it) its working
 
Glad it is going well. My son said the same thing last week. He kind of liked getting out of school and laying there for a few hours watching a movie.
 
Had first Remicade treatment yesterday. Seemed to go ok. Today I'm exhausted and feel shaky. Have had a headache since infusion started, which I did expect so taking Tylenol. Does this sound pretty normal?
 
Maxwelljax. Yes I get the same way for the first couple of days. I'll get annoying headaches and I'll be so shakey and sleepy and I'll usually sleep and hr or two after I get home from it till the next morning. And then I wait four to five days for it to kick in and I'm good until about the 6 week mark and then I'll feel crappy for two weeks until I get my next dose. Good luck to you, and I hope it works well!
 
I am soooo exhausted. Like my muscles and bones are melting. I got a little headache at the end but nothing like the Humira migraine.
 
These side effects WILL lessen! I've been on remicade since 2008 and definitely felt everything carrollco and maxwelljax experienced! But mine got better
with time! Make sure your premeds include Tylenol and plan to take it again later that day! Try to get on a schedule where you can get your treatment in the morning and have the rest of the day to recoup! I also make sure I don't have anything big/important coming up in the day or two after my treatment. Stick with it!
 
@Carrollco, I wish you luck :) it was also my last shot before surgery. It did its job and I got surgery to take out the damage I had from cd . im happy to say I look forward to getting my remi. I get mine in the morning and also make sure I don't have plans like Kristi. Although I wish it was every 6 weeks at 10mg instead of every 8 weeks. I always flare up in the middle of the 5th week, sometimes if I'm lucky itll last to the middle of the 6th week but that's it lol. Oh well :ybatty:
@Maxwelljax, have fun at work! I can't really function the next day lol to tired and sore. I wish you luck and no headaches! :thumright::thumleft:
 
@nini_mini, thanks. I'm up and going. Still have a bit of a headache and sore, but better. Will always make sure I'm off at least day after if not two. Best news is fistula seems better. Maybe too soon to be from remi. Have been on flagyl for last 3 weeks and that has helped before. But maybe this is going to work???
 
@nini_mini - have you talked to your GI about switching to 6 weeks? I started at 8 but after about 9 months we switched it to 7 and then about 6 months later we upped it to every 6 because I too was increasingly symptomatic in week 5/6. He was very open to change. I wish he'd write for every 5 but my insurance won't cover closer than every 6
 
Jack had a headache and extreme exhaustion as well after his first dose last week. The exhaustion didn't hit until later in the evening and I know he was tired in class the next day as well as he told me he kept falling asleep at his desk. Good thing I had already given his teachers a heads up. We'll see what happens next Thursday at next infusion
 
Kristi. Yes he said he can't until he gets permission from my insurance company. And they cover almost all of it so im pretty sure theyll let him do it. I should know on the 28th when I go in for my next infusion.
 
Maxwelljax. A day off is probably a good idea! Lol and im happy about the fistula! Theyre nasty little buggors. I didnt think anything was going to work for me untill I tried remi. I cant say its my miracle drug but it sure has helped alot. I hope it works wonderfully for you and closes the fistula. :)
 
I am up and around today. Still a little headachy but better than yesterday. Thank you to everyone. Your support means a lot.
 
To Kristihelene: I wondered how long they could access the same vein before it would scar up too much. They can only use one of my arms for IVs and have discussed a port with nurses giving infusion, but Dr. is very hesitant, worried about too easy infections. I notice no one answered the question on who has ports. I would be interested in a reply too. Looks like that time is coming up for me soon. Had three people attempt a recent IV before surgery. They did not want to use my hand (where infusion goes).
 
I'm starting Remicade on 1/23 I'm scared because this is the last thing before surgey. Imuran did not work! On that for 4 weeks and then start Humira and on that for 6 months!!! I'm so upset I just want to start to feel normal again!!!
 
Day 2 after first dose and I actually made it to work. Headache really minor and handled by Tylenol. Body aches manageable. Hoping for some definitive relief of Crohn's symptoms but I know it's too early. Thanks for support!
 
nini_mini - my son's fistula cleared up almost immediately after his first dose of Remi. Truly amazing! He, too was on abx, but his GI said it was most likely the Remi doing its thing.

lblair - Hope it works for you! We've set a record here of 11 weeks with no symptoms. Lovin' Remi :)
 
I am much better today AND I haven't ANY pain in my rectal area EVEN after pooping. Too soon to get excited as it could be a fluke, but no pain? I never am pain free. No burbling gas either.
 
@Mehita, that's great news! I'm glad its working so well for him! :)

@carrollco, its great isn't it?! I love it when it takes away all pain and it will for a bit as it gets in your system. The burbling gas relief is so nice! I'm pull in for it to work for you! :)
 
Hi everyone,

Switched from Humira to Remicade about six months ago and recent colonoscopy results show I'm finally improving.

I had an infusion yesterday and later noticed small and different shaped dark red spots scattered below my shoulder but above my elbow. Mostly were a couple inches below shoulder and seemed to end in a straight line.

This straight line of dots seemed close to where the nurse tied the rubber band but that was over my shirt.

IV was on top of my wrist and no dark red spots around.

Not itchy and Didn't feel very bumpy if at all.

Today it's lighter red colored.

Just curious if anyone experienced this or know what it could be?
 
Maybe tiny ruptured blood vessels from the band? Kind of like when kids suck on their arms and get the little red dots.
 
@Judith C - had my appt with GI yesterday. He is putting me in touch with a vascular surgeon asap as he is on board with port decision! He's not only worried about access for remicade but also the dangers of if I end up in ER and they can't get get access! Not sure where you get your infusions, but I go to an infusion center within a hospital that specializes in women's oncology so there is also a chemo center. Because of that, they're IR places hundreds of ports a day and does constant port management so that is where in choosing to have mine put in!!
 
@kristi you lucky dog you! When I was in the hospital in November I had a little baby iv (yellow) in my left wrist because they couldn't find any veins or any that were big enough for a blue iv. And they fought with my right ac one for the surgery iv which to this day I have no idea how that lady got it in there. Well needless to say my little one leaked the next morning and fought with iv after iv while in there 10 days. My veins are so bad and some of them are so scarred from trying over and over. Anywho I went through 5 or 6 ivs while in there and a buch of blood work day in and out (also blew 2 veins trying for ivs and one iv infiltrated and it made my arm swell twice its size! Yikes!!). Had on one day 3 different nurses try to get one started even the head nurse on the ward and they had to get a lady from cv icu to come and do it because all the other nurses had tried and failed to get one durning the week.:ybatty: It was nuts. They asked me about getting a port because my veins are so bad and I agreed to it so did my attending (love her) but my gi doesnt think I need one. Ugh well dec. 3rd came and it was time for remicade. My veins wernt healed up from the hospt. As it was only like 2.5wks later. And it took 3 tries and bothe nurses to get it. And they barley got the they used. And they asked about me getting one also. Pretty much I need one because my veins are all pretty much spent in my arms and certain ones I cant have them try because theyve been blown over and over, basically my tiny veins that roll suck ass and hate ivs, and I most likely need a port but untill my gi signs off on it I'll have to continue to struggle with ivs and or blood work. Its so retarded! But alas im very happy your going to get one!! Thats exciting news! :).

- sorry if I repeated myself a bunch of times. My pain pill is starting to work :).
 
@nini - what about having your PCP write for it? Mine agreed to if GI had said no. Beyond the annoyance of getting stuck, having different people try, etc, it's a safety issue to in an emergency!! I'd push for it if I were you!!!
 
Kristi. You aint kiddin! Although id have to get stuck to get it done lmao thats half the battle
Lmao. I'll deff. Ask My rheumy on the 28th when I go get my next remi dose. That along with getting something added for joint pain and the port. Gonna be a busy morning! Lol idk the last time I saw a reg. Dr. Lmao
 
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Saw the GI doc today. Too early to determine if remi effective after first treatment but ordering Solu-Medrol during the next infusion to see if that doesn't help prevent the side effects I.e. 2 days of shakes, body aches, etc. Also ordered Fiorcet for headaches. Headache lasted 4 days after first infusion. Hate to take a narcotic. Anyone have any luck with something else for H/A after infusion? Gearing up for the next one on Monday.
 
Hey everyone, I hope that you all are doing awesometasstic!! Just a little update, we were approved for the Remicade and my son had his first infusion on the 21st and will return for the second infusion on February the 4th. He said that he is feels great (no pain, less bathroom visits). The only thing that he did not like was the I.V., they had to stick him four times. I will continue to pray that he thrives and that Remicade puts his ulcerative colitis in remission. Have anyone ever experienced any side effects from Remicade?
 
Hate when a kid has these awful diseases and I can't imagine how you must feel going through this with your son. I had my first remi infusion on 1/13 and had quite a few side effects, although none that I couldn't handle. Had headache that lasted 4 days, shakes and body aches for a few days and was exhausted. But after a couple of days I was feeling much better and back to normal quickly. I don't know if that is normal for all. My GI doc is ordering Solu Medrol next time to try and control these side effects. From reading through the many posts I see that some of these effects are pretty standard, although varying in severity. I have a fistula that won't heal but other symptoms are in control with Entocort so I can't tell you how quickly I will respond but from what I have learned from others symptoms can improve almost immediately. Praying that is the case for your son.
 
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@BWNTB06- I hope it does awesome for your son! Its helped my crohns and I feel better now that I'm on it. Side effects vary from person to person. Mostly head and body aches and exhaustion. Usually calms Down after a couple days.
@maxwelljax- what's sold medrol? And I had a fistula and the remi started to close it within 3mths ish. My other symptoms are covered but pentasa and entocort. I hope your fistula clears up fast! They're nasty bugger's!
 
Solu-medrol is a steroid. I guess they will give it IV along with Benadryl prior to starting the infusion. This is supposed to help with controlling adverse effects. OMG yes they are boogers! I have had this fistula since getting an abscess in Aug 2012. Operated on in Feb 2013 and plugged. Didnt work. To make matters worse my insurance company denied the claim, after pre certification. Said it was experimental. Surgeon begs to differ. I am still fighting the insurance company. Appealing for the second time.
 
BWNTB06 - My son has had three infusions and no side effects (knock on wood!). I think the Benedryl makes him a little sleepy, but he fights it because he wants to play video games the whole time.

For the veins, our nurse told us to load up on fluids the day before and morning of to plump them up. At our clinic they also offer kids Emla cream (lidocaine) to numb up the skin and make the poke a little less painful. Do you think the problem was the nurse or the vein? You can always ask for an experienced nurse if you think that was the issue. Happens all the time.
 
@max- yeah I'd deff. Go for the second appeal thats crap if it was pre certified. Best of luck to you on it.
@mehita- yeah she told me to do the water too. That doesn't help at all just makes me look like I gained weight on the scale lol and yes! I get the spray every time because I hate needles! I should be amune to them by now but no such luck. Haha and no its not the nurse. The nurse that sticks me is the only one who can get a vein.I also get a hot or warm compress if they don't go and then most of the time that doesn't work either. Its a hassle. My veins are just really little and hate me, nurses, and ivs.
 
nini_mini, you probably already do this but my hubby has really tiny veins and he tells them to use a pediatric needle, it works much better.
 
i started infliximab 3 moths ago and i smoke weed sometimes and nothing happen and i wanted to try acids but i scared, so if anyone has ever tried please tell me if you were fine or not. And i don't know if anyone cames here or not but i had to try, and good luck to you all
 
Okay, that's the one I usually get. They tell me its the smallest one they have and they use it on kids. Haha still takes at least 2 sticks to get it.
 
This is my first time in the Remicade group...would it be strange to say I'm happy to be here?!?!? Maybe better to express I'm excited for possible remission!

I have my first ever dose tomorrow at 1pm here in Texas!

From what I have read I am planning on Tylenol for headaches (I can also take Fioricet for migraines with me if I should) and I am on 40mg of Prednisone (was on Solumedrol in the hospital from Jan 13-21 then switched to oral Pred upon discharge). It sounds like I should take Benadryl as well?

Well, just wanted to reach out and say hello! I hope this one works well and is tolerable!!!
 
hey everyone, I just wanted to thank you all for reading and responding to my post...it really does mean a lot to have people in your corner fighting with and for you (advice coming from people who are going through the same situation helps). My son is doing wonderfully since the remicade infusion. He is going to the restroom less and has so much more energy. so far so good :)

@Mehita, I think it was a combo of both. Not only does he have U.C. but he also has sickle cell anemia and gets dehydrated quickly. So we will make sure to load up on fluids the night before his next remi. appointment...which is 2-4-2014.
 
Welcome Suszanne,
No benedryl here but my son has only had 2 infusions and so far no reactions. It is amazing the difference.
 
So far Makena's Remicade infusions have been a huge blessing. She's gained 7 lbs in 4 weeks, her tummy pains have decreased (still gets them, but not nearly as much) and her fistula is shrinking. I'm very happy with it so far.

However, I don't know what is up with today, but I've gotten two messages from friends on facebook (whom I haven't spoken to in years) that both had random advice for me to "watch out for Remicade and be careful giving it to her." First of all, thanks for the advice but - its a little out of left field. And might I add, rude. How about asking how she's feeling and how the remicade treatments have been working so far?? Maybe I shouldn't react so defensively, but have they any idea what its like to have a child in so much pain that you are willing to pump them with medicine that you are hoping will work? Have they ever had to hand over their childs livelyhood to some Dr, hoping he knows wth he's doing?? Ugh! I'm so irritated right now!
 
Welcome Suszanne,
No benedryl here but my son has only had 2 infusions and so far no reactions. It is amazing the difference.

Isn't it? When we leave the hospital Makena is in such a good mood. Sleepy from the benadryl, but I can tell she feels so much better! I love the Remicade so far and can't wait to go back to Oahu for out next treatment on Feb 7th. We're on a 4-6 week schedule now.
 
Yes It's a whole benefits outweigh the risks, do they think we came to this decision easily. We've read all about the side effects, the horror stories, etc. But we've also read the success stories (something they have probably not done) nor do they see the difference in our children who are able to enjoy a normal childhood with this drug.
Jack was just saying in the car how much he likes remicade because he feels so good, he says he really feels like a normal kid. - just about brought tears to my eyes.
I'm so glad she is feeling well on it and just ignore those people who really have no idea what she is like without the remicade. You are doing fabulous and making the right decisions for your daughter
 
T-minus 12hrs till my next infusion! This one needs to knock this flare back some. Its not natural to sleep this much. Also I need to eat more than little bits here and there. I feel like a rabbit just nibblin away. I won't be surprised if I lost a couple pounds these past 2 weeks. Just hope I get my full 10mg!
 
So Solu-medrol seems to have helped with remi infusion #2. No headache. No shakes, at least not yet. My vision is weird and my coordination is a little off. But... Im much better with this than last time.
 
Yes most definitely! I had signed up for a class a while back on 3 Mondays, photography, and of course it started tonight. But I felt well enough to go and had a friend taking it with me so I went. About half way through my vision got weird and it was an interesting drive home. Luckily very close so I made it. Tomorrow my plan is to sleep all day if necessary. Starting to get headache tonight. Dr gave me Fiorcet, which I just took. Hopefully that will kick it. If not he did say not to suffer. Take the be dreaded Alieve, but only once. Would rather see me take narcs than destroy my intestines with NSAIDS, something I used to do quite frequently before I learned better. No matter what, still better than last time.
 
Good good. I go for mine at 9 tomorrow morning :) and I plan on sleeping all day afterwards into Wednesday. I'll try to eat something but I probably won't Lol. Oh well. Sleep is needed with remi.
 
I too took a lot of nsaids before I knew better. The only thing I miss is aleve for my knees. Tylenol just doesn't do the trick.
 
OMG... I agree about the pain. Tylenol does nothing. I take tramadol at night. Never realized it did anything til I forgot to refill it and went without a couple of days. Lortab does help but I can't take it several times and still function. Nothing works better than Alieve, figures doesn't it lol! But not only does it contribute to thinning my intestinal wall, and I'm quoting here, but it also prevents production of rbc's and platlets which makes it difficult to keep you hgb above 5. Never a good thing!

Good luck tomorrow! Let me know how you do.
 
I will be starting Remicade sometime in the next few weeks for my UC. Also found out my friend with Crohns will be starting probably the same week as me, so I have a remi-twin haha. Any tips for the first infusion? I am crossing my fingers this puts me back into remission, been in a flare since September.
 
I didn't know about hgb! Lol wicked. And yeah the thing that's bad is the only thing that works for knee pain lol. I take tramadol too! and did the same about the refill. And thanks! Will do. My veins better poof up or I'm gonna flip
 
LNS87 I've had my first 2 remi infusions and the best advice I have is make sure you have a day or two off afterwords to rest. Also be prepared for headache and body aches. Everyone seems to tolerate this stuff differently so communicate to doc if you have problems so they can order appropriate meds to help you tolerate it.
 
Getting remi as I type this. Took 2 very painful trys and one blown vein. And almost a second one but it worked the last second. I forgot it feels like ice going in. My hand is now frozen
 
mini....my whole body temperature drops by the time the infusion is over. I actually bring my own blankie, and am going to buy an electric throw blanket just for this purpose. LOL
 
I hear that! Lol my rheumy infusion office has stacks of blankets so I bring a jacket for my arms and take a blanket for my legs. And coffee! Lol
 
Wow...hadn't heard anything about drop in temp or feeling cold. None of that happens to me. But now I understand why the nurses keep offering me heated blankets throughout.
 
First infusion is done! Cold, very cold going in but other than that everything else was wonderfully uneventful!!!
 
Finally home from the medical fun today. Interesting note. I got put on methotrexate injections today. Got the first one in my arm after my infusion was done. Fun note. I have a cool little sharps container! Lmao :ylol: :ybatty:
 
Nini...wow a new drug. How fun lol! Never a dull moment with this thing. Maybe that will help you get through the 8 weeks without a flair up. Fingers crossed for you.
 
Plan on sleeping soon :) and yeah you ain't kidding! He said that even though I got surgery my stuff still isn't under control enough for his liking. Bascially its just running rampid and doing its thing without much help from meds :voodoo: So to help with my joint pain he gave me mtx. Injections With folic acid. And he said it should help the crohns a bit too. He told me that my insurance company won't let me do remi every 5 or 6 weeks I have to have it at 8 because its not being used for ra. How stupid lol oh well. So I hope it works. I'll have to stop it if it messes with my liver though. And then its onto 6mp or imuran.... Joy. Lol :ybatty: :yrolleyes:
 


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