I need any advice you have on going on Remicade medication

My best friend's daughter has AS and was on Enbrel for some time but her doctor had to take her off of that and she has been having the Remicade transfusions with great success.   She exercises daily now and hasn't had any symptoms that I know of she's started the Remicade.   I think Remicade has the same warnings as most of the other TNF drugs.     I guess with these diseases eventually the risk of the drugs is less scary than the prognosis w/o them.

I myself have psoriatic arthritis and am on Humira.   My doctor is trying to get the insurance to approve shots for every week instead of every other as it's not working as well as it did before.   I was put on Methotrexate years ago with diclofenac and had to stop because of liver count.

Good luck and I  hope the Remicade helps.

Alica

Thank you so much to the both of you for your replies.  It makes things easier to cope with knowing your not the only one going through these things.  I've not had a negitive response from anyone I've spoken to about this medication and treatment so I'm hopeful that I'm going to start feeling alot more normal than I have of late.  As my doctor said yesterday 'what other choice do I have"?  the good results from this treatment out way the side effects.  My life is seriously affected by AS and now have a permnant disabled sticker for the car. I just want to be able to wear a normal pair of shoes and be able to walk without pain     I'll keep you posted.

Thank you once again.

Peggy Baggins

Thank you for that, I'm so sorry your still suffering though    I do believe that I will never be pain free, but boy would it be nice to have just a little time every month where I would feel normal and be able to wear my Oh so pretty shoes and not feel so sick all the time along with the pain in my ankle/foot!!

AS certainly gives you a run for your money, the Remicade is the last thing that can be offered to me unfortunately as we have tried everything else.  I'm slowly coming round to the fact that I will just be like this for the rest of my life now and I'm adapting well.  My family have helped by trying to see the funny side of things, which helps sometimes but only family can get away with that..

I do hope that the Humira injections help you and should kick in if they are going to work after about 3 months. I'm on Humira and Methotrexate at the moment along with all the other drugs for various things. 

Here's to a good week for everyone...

I believe i have been dx with RA. But a new doc to the rhuemy practice said he wasn't convinced... I do have Fibromyalgia but that is mucle and tendons and fibrous tissue(exuse the spelling) I do have some form of arthritis in my spine which now is giving me some screaming now.

I was put on mtx and did awful on it. I was sick and my legs and arms felt like rubber and weak!! They took me off it right away!! Then they for some stupid reason Lyrica and Plaqunil at the same time...I unfortunately broke out in a rash!!! I am starting to get bumbed out... My sister in law has RA, Lupus and dip a lung disease and watching her really scares me knowing what she is going through,, I really hope the RA dx is wrong for me.!! I am really having a weak moment today, I am usually the strong one, but I guess I am just getting scared for my future.

I have one question: Does anyone before they even started meds... have the feeling of getting the stomach flu or getting a head flu from these diseases? I always feel nausaus of like i have a fever, especially when i was working.. I never knew why.

Well, thanks for listening. I know i will get back up eventually, just having a bad day i guess.


Laura

Laura,
I have RA and I too had a terrible reaction to the Methotrexate (MTX) the first time I took it-basically felt like I had a very bad flu without the fever. Terrible joint and muscle pain, nausea, diarrhea, the works. I increased the Folic Acid I was prescribed from 1 mg to 3 mg (advice I got here) and it made all the difference in the world. I've been on MTX 8 weeks now, and it's just started to work. I went 4 days this week without significant pain in my joints, and I actually had energy for 4 and 5 hours at a time. I felt like I was in heaven!!! I took my weekly MTX Saturday night, and have the usual side effects, but they're getting to be much less as time goes by. Yesterday, I was just achy and tired, and for some reason the 2nd day after MTX is when I feel the worst, so I don't expect too much out of myself today. I'm just going to rest and catch up on daytime TV.

As far as flu symptoms before you were diagnosed, I had some symptoms before I was diagnosed with RA and put on meds, but I think I partly know why. I always felt worse on Monday mornings, and I think it was the shock of getting up so much earlier than I did over the weekend. My RA symptoms (pain and difficulty moving around) are much worse in the morning, especially if I haven't had enough sleep, and at that time I was sleeping 9 or 10 hrs a night and obviously that wasn't enough. I'm currently off work on short term disability and now sleep a minimum of 12 hrs a night, sometimes more. Before I got treatment, I was also in a lot of pain and had no appetite and nausea, but I think that the nausea was a direct result of the pain. It was bad enough that I lost 30 lbs in the 6-9 months before I started getting treatment. So those were my symptoms.

I have my weak moments too. I'm moving into a smaller, much cheaper apartment so I can save some money for a rainy day, because of the RA diagnosis. It's on the ground floor, because even though I haven't had trouble walking for several weeks, I figure I should be prepared in case I flare again. Also, I have some friends who live in the complex, so I can get help if I reach the point where I need it. Right now though, I'm slowly improving and will probably be well enough (according to my rheumy) by October to go back to work. It sometimes feel like 2 steps forward and 1 step back though. It can be really frustrating, and scary as h**l if I think about the future too much. So I just try to take it a day at a time.

Good Luck!!!
Ladywriter

Dear Ladywriter

You've been most helpful and informative with a rough idea on what to expect.  I planned to take a good book to read with me and the idea of taking a note book to keep a record of how I'm feeling would help too. I've had nothing but positive responses to my questions both here and at the specialists, so I'm very hopeful, even if it's a relieve for a couple of weeks a month that would be good.  Your news of feeling better is wonderful and I'm really happy for you knowing what it's like with this disease.  I told my specialist yesterday about this site and how it's helped so much to know that I'm not alone with this, he agreed that anything that makes you feel better is a positive one.  After listening to him record his usual letters to various doctors etc after my visit I was shocked...it hadn't dawned on me until then just how many things I have wrong and how serious things are.  I don't mean that they will kill me but along with AS I have problems with my sight, heart, High Chloresterol, high blood pressure and insulin rest.disease... all genetic unfortunately.  The only thing (god forbid) that I don't have that my mother has is COPD!!!!!  but I've not been a smoker so that helps.

Have a good day.

Peggy

Thank you so much for your comments, they all help to make a bigger picture and let me know what I may expect.

Have a wonderful pain free day