Golitho please read

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straydog
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Date Joined Feb 2003
Total Posts : 13451
   Posted 1/5/2010 5:04 PM (GMT -7)   
Hi Golitho, wow the other thread stretched way out there, this has happened before. So, this is why I am starting another thread for you.
 
The something sitting on your chest was a reaction to the Remicade. I did the very same thing on my 3rd infusion. I also had pain down my arm and thought I was having a heart attack. They stopped the infusion and the dr had them give me IV Soluable Medrol 50mg and IV Benadryl 50mg. They waited a bit and then resumed the infusion at a much slower rate. From that time on I was given pre-meds before each infusion. I slept thru my infusions for 31/2 yrs. The Benadryl knocked me out. Please, please get a hold of your dr or his nurse well before the next infusion advise them of the reaction and have him rx pre-meds before the infusion. I never had a problem as long as I was given pre-meds. Some drs also had their patient take an anti-histamine the night before and the morning of the infusion as a pre-med, but your dr sure needs to to this with you. Was the nurses monitoring you and did you tell them about it. Always tell your nurse if anything strange or weird happens. One morning a man was in the same room with me and and when the nurse turned up the drip, he developed severe back pain pain, they carted him out of there on a guerney and admitted him for 24 hrs till his pain level dropped. It was a reaction and they had to start giving him pre-mrds.Its a reaction to the mouse protein. Thats why I am saying if aything weird of different ever happens tell the nurse ASAP. The Remicade just does not stay in the system all that long. I hope your dr changes you to every 6 weeks, I went every 4 weeks.
 
You are right, Humira shots are so much more easier to do than the infusion. I am getting ready to resume my Humira since my Bone Scan of my foot was negative, I am so happy.
 
Has your dr indicated as to when you may expect some improvement from the Remicade? I sure hope it is soon, I know you are suffering. Take care & let us hear from you.


 

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
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Date Joined Sep 2008
Total Posts : 1670
   Posted 1/5/2010 6:27 PM (GMT -7)   
Hi Susie, I'll ring my doctor but with it being the Summer holiday break time for us , not many people are around yet. I wasn't going to have the infusion without telling them about my last reaction. Strangely I felt fine during the infusion, a bit stiff which I put down to sitting for so long but it wasn't until I got home that I felt the pressure on my chest and all the pain started in my body. I got the headache during it but they said it was becaue your blood pressure drops during an infusion and offered me panadols. I'm on panadeine forte already so I said no thanks to that.
 
The clinic opens on the 25th Jan so I can't talk to them until then. But I hope my rheumy is back before then and I'll have a chat via the receptionist!
 
Good to hear theres something I can do though.
 
This is definately the worse flare I've ever had. When I see my rheumy I'll ask her about draining off some of this fluid as my joints feel under severe pressure from all the swelling. Any activty and they just HURT. At least the prednisone has taken the edge off the pain when I'm at rest, I felt swamped with this bone gnawing pain for awhile there.
 
Great your bone scans were negative, what a relief. Yeah the humira is soo much easier but it just wasn't working for me or was working but not enough. Cross your fingers the remicade provides a change to my system and kicks it all back into behaiving.
 
Thanks for sharing your experience, I really appreciate it.
yeah
Best wishes, golitho

straydog
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Date Joined Feb 2003
Total Posts : 13451
   Posted 1/5/2010 11:23 PM (GMT -7)   
I sure do hope the Remicade will work for you. A reaction does not have to happen immediately, it can happen just as your did. Thre is a lot of good info on thw web about Remicade, give it a google if you are interested in reading up on it and learning about the various reactions. Have you ever been on Enbrel? Will keep you in my prayers.
 

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
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Date Joined Sep 2008
Total Posts : 1670
   Posted 1/6/2010 1:29 PM (GMT -7)   
No I've never tried enbrel, is there less side effects? My rheumy was talking about another biological that is stronger than humira etc. but it plays havoc with your immune system so she is hesitant about prescribing it. Plus I have to officially fail hunira to be elligible for it which means NO More HUMIRA for 5 years. So if it doesn't work it leaves me stuck.
 
It is sort of good to know there is another med out there if all else fails but I think alternative is where I'm headed. If I can find something besides the western meds to help with the swelling or cut down the pain it would make my life more manageable.
 
I'm pretty concerned at this stage any exercise and I'm a mess, how on earth am I going to be able to teach a 4 hour class? My wage pays for my second child, who has severe learning difficulties, to go to a private school where he gets wonderful help. So giving up work is not an option for me yet. He is 14, plus I'm only 49 so I have a lot of life left where I need my mobility. I feel a bit scared to be honest. My arthritis has never really reached a controlled stage, just progressively gone downhill.
 
I read your list of ailments and feel like I have a long way to go, its just sort of frightening when your body starts failing you. Thanks for your help, golitho

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 1/6/2010 8:29 PM (GMT -7)   
Hi Golitho,
 
Yes Enbrel is another biologic used for R/A so there is something else to consider if you don't respond to Remicade. My sisyer has RA and because of her poor health and no money to speak of she has never tried any of the biologics. She really suffers I know this.
 
I totally understand wanting to try other avenues in getting some relief. I don't know how much you have studied up on this, but there is surely many, many things that you can safely try. Anything to help with the disease. At least we have the option to search the web for ideas and can find things to help us.
 
Autoimmune disease are so weird in how they just attack the body. Its a mystery for sure. I just hope I am pass the point in getting dx'd with anymore of them. I have more than I can possibly handle in one lifetime, lol. I am 56 yrs old and never once ever thought my health would do a complete 360 like it has. All of this overwhelmed me when it started hitting.
 
Lets keep our fingers & toes crossed the Remicade kicks in and does what it should. Keep us posted.
 

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 1/7/2010 2:40 AM (GMT -7)   
Thanks Susie, I'm wondering whether to ask for a trial of plaquenal. I've read of a lot of RA sufferers who get relief from it. Either that or more prednisone or more pain meds... my knees and feet are bad today. Did a bit of shopping and it just flared my legs.

I feel for your sister, we are so lucky here, the meds are hard to get approval for but once approved I pay $32 for each infusion or humira 2 pack. Very affordable plus if you're poor you pay only $5 or there abouts.

I've tried herbs, homeopathics, water therapy, diet and a failed attempt at accupuncture. I still take the vitamins and herbs with my rheumys approval plus I will go back for more therapy once this flare settles. I've been on celebrex, arava, sulphursolasine, methotrexate, humira and prednisone. Plus nexium to tolerate the anti inflammatories. I'm currently on remicade. mtx 20mg, prednilosone 12.5mg and mobic 15mg. Plus I take panadeine forte (codeine/ paracetamol ) for pain. I have a script for oxycotine but find it a bit strong, can't drive or mind children on it.
I've also tried anti depressants but hated them, either too speedy on them or too sleepy.


My local doctor said she would change my pain meds as she doesn't feel its good for me to be on the codeine for too long but she didn't say what she would change me too, I have an appt with her the end of January. Well thats me in a nutshell. Swollen joints, lower back pain, 3 lovely kids and a wonderful hubby, plus a wonderful site here. I feel happy believe it or not, despite it all. Thanks Susie for your knowlege and for listening, golitho
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