Has anyone else taken remicade and is it working for you?????

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pr glo
Regular Member


Date Joined May 2008
Total Posts : 78
   Posted 7/7/2008 1:02 PM (GMT -7)   
I will be taking my 4th Infussion of remicade on 7/28 for Psoratic Arthritis I am alo taking prednisone which I do not take consistently because I don't want to keep gaininh weight .  and methotrexate 1x weekly I also have been getting bad headaches and I have noticed that I bruise very easy. I still have swollen ankles, swollen knee's, swollen fingers, severe back pain. severe abdomen pain, and i'm always tired!!!!my skin feels burning hot to the touch which makes me sooo sweaty I have gained weight which always makes everything feel worse and I try to go walking but because my feet hurt sooooo bad where I have trouble getting out of bed and it hurts to walk  I can't even wear really nice shoes anymore because my feet are sooo bad. I sometimes wonder if it's even worth it to keep taking these Infussions. I was taking Embrel shots but that din't work either I keep getting really bad flare ups where I needed to take some time off of work to rest and feel better.  Can anyone relate to me what are you doing that works please advise me I'm sooooo tired of feeling sick I want to be able to live a some what normal life take walks  and enjoy time with my 3 kids and Husband and not be in pain every day and not be sooo tired all the time. Please anyone  and everyone let me know what I shouls or should not do. Thanks everyone PR Glo  

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 7/7/2008 3:40 PM (GMT -7)   
I am concerned about something you wrote. You said that you aren't taking your prednisone consistently. Do you mean that you will take a dose and then skip a couple days, and then take a dose again? The reason I ask is that prednisone is one drug that a person must taper down the dosage to get off of it. Your body produces cortisol and when a person takes prednisone the body reduces its production of cortisol. The body has to be given a chance to wake up and make cortisol in the proper amounts when prednisone is reduced. How much and how often are you taking your prednisone?

I got Remicade infusions for 2.5 years for my ankylosing spondylitis and Crohn's. It really helped my AS. I did not have weight gain while on it nor did I have problems with swelling. The swelling issues you have could be related to the prednisone. How's your blood pressure? You have so much going on it sounds like your rheumatologist or primary doctor should be looking at getting your symtpoms under control. When do you next see one of them?
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


pr glo
Regular Member


Date Joined May 2008
Total Posts : 78
   Posted 7/8/2008 1:27 PM (GMT -7)   

What I mean is that I don't take prednisone every day I take it every two or three days my blood pressure was a bit high when I had my last infussion but since then my pressure is fine. I was supposed to see my Rheumy on 6/3/08 but cancelled because I can't afford the visits and pay for the  infussion and my other meds and I have not re-sceduled I have never been explained anything regarding prednisone I must be doing something wrong. I also have really bad acid reflux and I had a full hysterectomy last year. I had carpel tunnel surgery 3 years ago both wrists. I'm 36 years old but I feel 80. I feel like a walking time bomb. PR Glo

 


JoolsRA
New Member


Date Joined Jul 2008
Total Posts : 2
   Posted 7/8/2008 2:28 PM (GMT -7)   

I really know were you are coming from.  I have RA and can't seem to get it under control.  I am on Methotrexate every Monday, Remicade, Prednisone 30mg every day, Ibuprofen 800mg 3 times a day and continue to feel the pain and fatigue.  I'm 39 and have 2 boys ages 2 and 4.  I can bearly work, play with the kids and keep up the house.  My husband really doesn't understand and my friends are sympathetic but just don't get it.  Any ideas on what more I can do. 

One thing I did find was that buying a pair of Crocs was the best thing I have done for myself in a loooog time.  They are so comfortable.  I have bad foot pain from the arthritis and heel spurs and since buying them I've been mostly foot pain free.  They aren't very stylish but if you really want relief I'd try a pair.

The predinisone really needs to be consistant and then weaned off.  Gaining weight is an unfortunate side effect but if may help if you use it consistantly and then wean off slowly. 

My blood pressure also went up as a result of the meds and now I'm on Inderal also.  It is helping.

Remicade has a financial assistance program.  You can look it up on line.  They really cover a majority of the cost.  Check it out and hopefully you get some relief.

Good Luck!

 


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 7/8/2008 5:57 PM (GMT -7)   
pr glo - You really, really need to schedule that appointment. The manner in which you are taking prednisone can be very dangerous. It also can explain a lot of your symptoms. Your GI can apply to Centocor for assistance to pay for your Remicade. Also, many docs have a large supply of medication samples they can hand out. My GI gave me a months worth of Prevacid when I was having a rough time. That saved me a $60 co-pay. I am very concerned about how ill you are - please call and make that appointment!
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 

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