Reaction to remicade and thanks Straydog

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golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 1/25/2010 4:04 PM (GMT -7)   
Hi everyone,
 
Had my 3rd infusion yesterday and took your advice Susie and got a premed dose of anti histimmine plus a medrol infusion prior to the actual infusion but still after the infusion had the trouble with my breathing. They put me on an ECG machine to check my heart but apart from a racing pulse and a bit of a temperature I was fine. They ended up giving me another infusion of medrol plus oxygen and after that had gone in about half an hour later I was ok. Wiped out but ok.
 
Thank you so much Susie if I hadn't been forewarned by you I think I'd have been really sick. Feel a bit fluey today but I'm told thats normal. Headache, aching limbs and bit of a temp still but I can breathe.
 
I see my rheumy next week so I will definately mention it all to her. Maybe my weak lungs and remicade just don't go together, or maybe I need a stronger premed dose?
 
Feel really tired so I'll post again later, golitho

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 1/26/2010 12:17 AM (GMT -7)   
Hey Golitho,

Well shoot, I wish the infusions were going a little better. Here is my pre-meds mix prior to infusions back then, 50mg of IV Benadryl and 50 or 60 mg of Soluable Medrol. Now this worked great for pre-meds except I don't tolerate steroids so we had to stop the Soluable Medrol. I will tell you the 50mg of Benadryl took care of it all and I slept thru the entire infusion and got a wonderful nap. Another trick is to reduce the IV rate to a slower rate. I always felt fluish for 3-4 days after every infusion and spent those days in bed. Once it passed I was fine. Then, I got a little smart and stareted taking extra strength Tylenol around the clock for 4-5 days starting the morning of the infusion and let me tell you, it really helped those fluish symptoms alot. I started being able to stay out of bed so much.

I am in the process of trying to find the names of two new R/A drugs just approved by the FDA here in the states in the last couple of weeks. If I am remembering correctly they are like Remicade being a biologic. I don't know if they are available yet where you live or not or how long it takes for the new drugs to become available where you live. I wrote the names down and I be dang if I can find the note I wrote them on. lol. The story of my life.

You might go to the FDA website and go to the area where they post about new drug approvals and probably can find the medications I am talking about. I thought of you when I read about them. Its always good to have more options in medications.

Has your dr said how long it normally takes for a patient to know if the Remicade is going to help or not. I know once I was past the initial loading doses I was able then to tell a difference. Let me pass another thing on to you. When they first came out with Remicade they claimed in stayed in our systems for quite some time. Well, now they have found out that is not true. It does not stay in the system as long as they thought. That is why it is important for the patient to really pay attention to how long they actually feel improvement and note when it stops being effective. Remicade needs to be tailored to the patients needs. l never made it to the 8 week mark like they first claimed it should be. We tried me at 6 week intervals and I was always sick waiting that long. Then we went to 4 week intervals and that worked the best for me. Sometimes we had to do a boost infusion every two weeks to kick things up. It was a real pain in the rear the days I went to the hospital for my infusions. I would get at the hospital around 6:30 am and would leave around 3:00 in the afternoon. It made for a very long day and I had to have someone drive me. My best friend bless his heart took me because the Benadryl knocked me out, and he did this every 4 weeks for 3 1/2 yrs. It was a 60 miles round trip for these infusions. Only a real friend would have done this for a person. He is like a brother to me and I have known him for a good 25 yrs.

Keep me updated on how you are doing and pay real close attention to your body for any signs of problems. I have COPD and am on oxygen 24/7. The Remicade never affected my breathing except when I had the reactoin. Now, the Soluable Medrol yes, I had a problem because of not being able to tolerate steroids.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 1/26/2010 11:39 AM (GMT -7)   
I just had to post a comment here. This is what our forum is all about. Our forum means all of us together who make up this great family. Sharing out experiences and compassion for each other makes our lives not only easier to manage but richer for knowing someone out there cares. You warm my heart!

Warm hugs,
Chutz
"Knowledge is knowing that a tomato is a fruit, but Wisdom is knowing not to put it in a fruit salad."

(\_/)
(o.o)
(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 1/26/2010 1:20 PM (GMT -7)   
Thanks Susie and Chutz,
 
I agree with you Chutz, I love this place, I felt so nervous when I first started posting over a year ago now, like I was intruding on hallowed ground or something. Now I visit most days and feel right at home, I love the advice , the support and the general laughs as well as reading other peoples probems. It all helps keep everything in perspective.
 
Susie you are truely wonderful, I will ask about the benedryl. They gave me a tablet of some anti histimmine and I've forgotten the name but it wasn't benadryl. I hate the steroids but I can take them. I just don't sleep on them, racing heart and hot flashes go with them too. My lungs seem to be very phelgmy, it must be a reaction to that mouse protein.
 
I see my local doc today to talk about my pain relief, I'm worried about going back to work now. I thought the swelling would have gone by now, I look at my feet and think how can I stand on these for 8 hours teaching?
I really need the money, not working is not an option. So I'm hoping she has some pain killing options for me.
 
The RA site was talking about Simponi, is this one of the new biologicals? I was going to ask my rheumy about it. Ides was saying humira didn't work for her nor remicade and simponi has done the trick. I really appreciate your help. I'll look up the meds. I'm already on I think extra strength tylenol, panadeine forte its called over here. I live on it unfortunately, doesn't take the pain away but knocks it down. When I'm at rest I'm good now, its as soon as I use anything I hurt!
 
How is your cellulitis going? Are you responding to the anti biotics? Best wishes, golitho

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/26/2010 4:57 PM (GMT -7)   
Golitho,
I don't know much about the infusions or all you're going through (I'm glad Susie does!) but I did want to add at least a few hugs coming your way. I hope you can find relief so you can continue working, as I know how much that means to many of us.

And I'm also glad you started posting and didn't stay a lurker! Interesting your description of this seeming like "hallowed ground". In a way, it kind of is if you think of the family aspect, but it's hallowed ground anyone is welcome to step onto, as you've found out.

I'm cheering you on and hope things start moving in a positive direction for you!

Hugs,

PaLady

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 1/26/2010 7:28 PM (GMT -7)   
Thanks PAlady, my doc has put me on a fetenyl patch to try. She is also sending me to see a pain management clinic because she feels I"ve been struggling now for too long.
 
She also is a bit frustrated with my rheumy which makes me feel a little less lonely trying to cope with my lack of response to these new meds. She feels its too long to wait for a reaction without any improvement. Anyway I will see what my rheumy says when I see her next Tuesday!
 
I hope the fentenyl works she has me on the second strength patch to start with as well as my codeine for 3 days then to drop to just panadol (tylenol) after that with the second patch.
 
I hope I get some sort of relief soon. I have to see her again Monday to see if I have had any improvement. Its funny I've been procrastinating about dealing with this pain, I'm sort of over doctors at the moment and now I feel like I'm in the middle of another whirlwind. Hard to find the energy to help yourself at times.
 
I appreciate the care, golitho

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/26/2010 7:39 PM (GMT -7)   
Golitho,
I sure can relate to being "over doctors". Sometimes I just want to quit seeing them all and pitch all the pill bottles, but I know I'd be worse off.

Tho' sometimes I wonder...

Take care,

PaLady

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 1/27/2010 5:00 AM (GMT -7)   
Hi Golitho,
 
Yes, that was one of the two I heard about, lol. Here is the name of the other one, Actemra (tocilizuma). I found my email from the FDA on this one.
 
Have you ever gone into the Remicade site and read up on the potential side effects? If not go to Centocor's site and read up, but don't freak out at what you read. Alot of people get delayed reactions to Remicade, they don't always happen immediately. When my gi first talked about Remicade he put it all right out there for me and he could tell I was getting scared. But then, he told me, keep in mind if one person has any kind of a problem it has to be listed as a potential side effect. My biggest fear was a couple of people died from Remicade because they had congestive heart failure and failed to advise their doctors of this problem and that is why they died. Not all people with CHF can take Remicade. Well, I have problems with CHF so, yes I got scared. Back then my dr was always two rooms down from me doing procedures while I was doing the infusion and he would run back and forth checking on me. He stayed at the hospital the entire day as long as Remicade was being given to his patients.I am fortunate the Humira does help my joint pain. My knees have been bothering me for about 3 months now and I have been trying my best to just ignore it. I am not having anything else done to my knees, been there and done that too many times already.
 
The cellulitis seems to be getting better and better. I just wish the rest of me would do that. I am having another psoriasis outbreak, its all in my hairline, forehead, both hands, one arm and both feet. Having some gi issues from the strong antibiotic. Try to get rid of one thing and bring on a slew of others, all in ther name of trying to get well. Jeesh, I am like that rat in the maze. My gi told me a few weeks ago he just did not know what to think of me. He you know you were a sick woman 7 yrs ago when you walked in that door. But since then you body is like it is trying to self destruct. He says I am his first and only patient that he has ever treated with four autoimmune diseases. He said he would give anything to know what happened, what caused all of this.  I said well doc thats why I call it the domino effect.
 
I am glad your PCP is keeping on top of things with you. Sounds like you have a very good one. Now that you are starting the patches, its time for you to consult with a PM dr for sure. Its 6:00am my time, I do need to go lay down a bit.
 
Yes, I am so glad you decided to post.  I know years ago when I first came to HW I was on the crohns forum and it was an experience for me. I had never been online in a forum ever, those people talked of embarrasing things that go with the disease that I could not speak to anyone about, lol. They were great and thats where I got my education on crohns disease. It took me a good year to say I had chronic diarhea. I got embarrassed just typing my own post up.lol.  Without HW and trying to deal with crohns I am not sure where I would be today because my drs all said, hey go online into reputable web sites and educate yourself. You will learn more that way than what we can possibly ever tell you and that was so true.
 
Take care. 
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 1/27/2010 4:37 PM (GMT -7)   
I'm so glad your cellulitis is responding finally, Susie, what a relief to have one thing off the list.
 
I'm sure all these auto immune things are something to do with all the chemicals we apply to ourselves (sunblocks, moisturisers etc) plus our food, plus our environment. I watched a really informative program about moisturisers all being petrochemical based or involving plastics and how we merrily apply them to our skin and don't think about what we are absorbing from them. Kinda scared me but I still apply them! Living in the land of sunshine and being on methotrxate I have to use sunblocks. I try to cover up but then I'm low in vitamin D so I'm sort of stuck knowing which way to go.
 
I've tried to wash all our fruit and vegies really well though. But I mean you see the local council spraying the footpaths (sidewalks) for weeds, its everywhere around us. Then I read about hormones added to our food and thought about all my upset hormone levels and wonder whether that has played a role in my bodies deterioration too. I've had endometriosis since I was 14, cysts since 27, can't be good either.
 
To be honest, I could get paranoid but instead develop the ostrich phenomena of hoping it will all go away somehow. How do we do this? I hope my kids are ok. They all have allergies unfortunately. Then I start wondering whether all our problems are started by allergies...I'm ranting. Little I can do about it now anyway.
 
I've written the names down in my book to bring to my rheumy next Tuesday, so I'll look up that website and get informed real quick. She was very slack and told me nothing about remicade. It was a rushed decision on her part to get me on it before Christmas, trying to fit in the infusions with the holiday closure of the wards etc. I think she sort of assumed I would inform myself so I am very grateful you were there. I completely fogot the remicade was a different base to humira.
 
I also had no forum history before being here. I hardly use email even! Maybe when I finally get my own computer I may get myself more technicologically updated! My kids all use face book but it still scares me, seems so public somehow. I'm not quite ready for that level of exposure.
 
Sounds like you need some sunshine for that psoriasis outbreak, shame I can't package some up for you, getting a bit over the heat now.Sorry your tummy isn't handling the meds, I can relate to the domino effect that suits me entirely. I go down fast and struggle to get up again as one thing leads to another, chest is definately my first weak point as in lungs, bronchitis and asthma follow me around like lost lambs.
 
Kids back at school today finally after our summer break, I have another week before I'm back, I teach tertiary, so I plan to rest up big time, best wishes, golitho

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 1/29/2010 11:41 AM (GMT -7)   
Golitho I could not agree with you more. I too feel like the environment and additives play a huge role in many illnesses and diseases. Long before a lot of this crap was introduced to us people did not have a lot of this stuff. but getting anyone to admit to such is non-existent.

My gi still wonders what all happened during my two surgeries in Mexico. After those surgeries is when my health went downhill rapidly. Granted I had a lot of infection in my system at the time of the surgery, it was an emergency surgery. I was in too bad a shape to get on a plane and the Mexican officials would have never allowed me on a plane in the condition I was in. I had to have a letter from the surgeon saying I was fit for travel before being alllowed to leave the country. The only medical records available is a page and a half report hand typed from the surgeon. Its in Spanish and has so many errors till its not even funny, lol. He is right, we will never know.

I hope the Remicade works for you. But just remember there are other drugs available. I am a outdoors person, hate being cooped up in a house. I don't think I would be able to endure winters like what the folks up north and back east deal with. I have been away from that kind of weather for a long time. The sunshine keeps my batterioes charged, lol. Lets hope for some low pain days starting now.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 1/29/2010 3:43 PM (GMT -7)   
Do you think something went wrong with the surgeries? Or do you think it was the shock of them, the anaesthetic or a combination that threw you off course?
 
I feel very nervous about further surgery now, I must admit. But I will see what my rheumy says.
 
Fentenyl has sort of numbed my face, dampened my nerves obviously, shame it hasn't done anything for the feet or knees or wrists, I realise as I type.... but I slept 5 hours last night. Best I have had in sooo long!
 
Feel energised today!
 
Always a silverlining out there somewhere! Golithoyeah

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 1/29/2010 11:52 PM (GMT -7)   
Golitho, its all strange for sure. Six weeks beforem my emergency surgeries I had my gall bladder removed, as it was not functionally right. I have had had several surgeries on my stomach area before and never bruised. Within 48 hours of my laproscopic gall bladder surgery my entire stomach was covered in horrible bruising and as days went on it got worse. When I went in for my 10 day post op check up, my poor surgeon nearly had a heart attack when he pulled the sheet back and saw my stomach. I heard him suck his breath in and he asked me have you done something, I said no. He asked if I had ever bruised like that before from surgery and I replied no. He said I promise you, this is not due to anything that happened during your surgery. Your surgery went fine as it should have. He said I have never had a paient bruise before. He was really visibly upset. He just kept saying I cannot understand why you have bruised like this. I had no extra ordinary pain or tenderness either. It was all pretty much status quo.
 
My gi talked to me several times about having exploratory surgery but I said no. I  had 3 major surgeries in 6 weeks, my body needed a long rest and so did I. We know I had crohns for nearly 20 yrs undiagnosed which is not uncommon at all either. But all of this other stuff, who knows. He seems to think it goes back to the surgeries in Mexico. He think something was just not right. But, if you had seen the conditions of what they called a hospital you would have flipped out. My daughter walked right in my surgery, got off the little elevator on the third floor and there it was. It made MASH on tv look modern, no kidding. The hospital was an old 3 story hotel that had been converted to what they called a hospital. You rode up to surgery sitting in a wheelchair, elevator held two people only, you were carried down flights of stairs by peolpe after surgery because the one elevator was too small to hold a bed or gurney. My family was terrified. I was too sick to know what was going and out of my mind, just as well I am sure.
 
I hope everyone has a low pain weekend.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 1/30/2010 3:54 PM (GMT -7)   
Wow Susie, all that bruising sounds like something was bleeding and you had no pain from it? How wierd is that.
 
Thaks for sharing your story with me, I know for some of you that have been here for so long, it must be a chore to revisit your histories at times. I appreciate it. Helps me understand where you are coming from.
 
Hope you have a good weekend, golitho
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