Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Poll - Remicade - yeah or neah?

Hi,

I have had AS since I was 13, Now 42.
I have fusion in the SI joints, thoraxic and neck regions. I have been on 4 different anti-inflams and get through the day by eating way too many pain killers. I have tried changing my diet and I stay as active as possible at this point. My quality of life is crap...I am so tired....I am shell of what I once was.

I recently saw DR. MILLICENT STONE at Toronto St.Michaels Hosp. AS clinic. She has now moved to head the AS Clinic at the Royal National Hospital for Rheumatic Diseases, Bath, UK (They developed the BASDI, BASFI indexes we use in our diagnosis of AS)...I was privilaged to sit in on 2 doctor conferences (one over a 100 Dr.s in attendence) - Dr. Stone was key speaker, she is driven to help this Disease. Along with Dr. Proton Rahman who is researching the genetics/DNA of AS.

My question is I have been given the green light for REMICADE infusions...I am asking the message board for personal opinions/stories - Good or Bad - in your experiences with this fairly new treatment.
I am still on the fence in regards to taking this drug.

Thanks for your help - HAPPY NEW YEAR!
Hope42

Hi Danni,

Was wondering if we'd see you again.

I haven't tried Remicade but know there are quite a few here that have. Most with good results. If you go up to search and punch in your topic of interest, it should pull up some interesting threads.

It's nice to hear that some doctors are dedicated to researching the genetics and willing to help with this disease. We can hope that they are eventually successful.

Good luck in your search,
Klem

I went down the same road that you are on now and had the same questions. I almost went on Remicade but at the last minute I just couldn't do it. I guess I am a coward but I made the choice and that is that. A few weeks ago I ceased taking Celebrex but I am back on it now because I was racked with pain. I am willing to take a risk for heart problems because I just couldn't take the pain any longer. These are hard choices we face and everyone is different. I will respect any decision you make. I keep waiting for the magic bullet, you know, the one that cures with NO side effects.

Hi Danni,...and Welcome to KA from a fellow Canadian and probably a fairly close neighbour, too!

Wow, I was so utterly amazed to read your story, since I have just recently started Remicade - and am under the care of Dr. Millicent Stone!!! I was soooo very depressed to hear she was leaving us for Bath UK (they will be so lucky to have her expertise there) since I've only just gotten to know her (a mere 3 visits) and can't say enough good things about her. She is a true leader in the field of AS research and is as caring as they come. I never made it out to either conference, but really wished I could have attended.

I was referred to Dr. Stone by my longtime Rheumy Dr. Stein (in Scarborough) in the spring of 04, and she ran tests confirming I was an excellent candidate for Remicade, due to the severity of my case. For me, AS started when I was just over 18 y/o, and was dx'ed by 21 - 22 y/o and am also 42 at present. I have partial fusion in SI's, partial fusion in each part of spine, and have been dealing with chronic iritis for years.

I'm glad you've been given the green light to have this opportunity of trying Remicade. For me, it has been no less than a miraculous change. My quality of life has drastically improved, and did so rapidly! I just completed my 3rd infusion at St. Mike's on Dec 17th, and could not be happier with the results.

I can't say I wasn't without reservations too, and it has not been all smooth sailing since I did have an unpleasant reaction after my initial infusion, but everything has been great since. There are some unknowns to this treatement, and the clinic is somewhat chaotic, so of course this decision is very personal.

Perhaps I'll send you a private message with my phone # if you are interested in talking more.

Take care, and good luck with whatever you decide!

mig

I was on enbrel, but developed MS. My doctor said the same is possible with remicade. That said I think that I would give remicade a try, just keep a close eye out for any warning signs of side effects. Enbrel did put the AS into remission for me, but it came back after the enbrel was taken away. Good luck.

Steve Orchard
Running from Arthritis

Works for me! I give it two thumbs up... way up. I'm off pain meds, I'm off NSAIDS, I'm down to 4mgs from 10mg Prednisone. I no longer have osteoporosis, I'm not depressed, I can move, I can walk, I can drive. I have a smile. You tell me whats worse? You can go into anaphalactic shock from one aspirin. Do you not take aspirin? I'm on infusion #12. So far so good. One day at a time.

Good luck.

PS- AS since 14 yrs, now 48. Fused tail bone up to skull. Wish Remicade was available twenty years ago.

Kerry,

I read an article about Enbrel / Remicade and the affects on osteoporosis.

It said that Enbrel and Remicade can help reverse osteoporosis. I too have a DX of Osteoporsis. Each year instead of decreasing bone density might increases slightly.
Hmmmmm, sounds like a reversal of what mother nature is doing as I age.

Enbrel has been a blessing.

Betty

I have been on Remicade for nearly two years now.

Pros: It has allowed me to return to an active lifestyle, but not quite what I used to be.
I have gone from barely being able to walk up stairs to coaching two soccer teams in the fall and spring. It helped settle down IBS and I have gained 25 pounds since being on it (I needed it).

I receive infusions every eight weeks and the drug keeps most of the pain away for about six weeks. I have chosen not use Methotrexate (sp) with it as a friend of mine is an Oncologist and told me to not use it as it is a form of chemotherapy.

Cons: I have an Iritis and Glaucoma problem in one eye. I noticed after receiving Remicade treatments that that same eye hurt. I saw an eye doctor about four hours after an infusion and had an eye pressure of 29 (anything above a 20 can cause damage). Found out from the eye doc that he had seen others with the same problem. I contacted the Rheumy and he asked the drug company representative who told him that pressure increases were something they had seen with some people.

I have had two or three reactions after IV's. Mainly dizziness and headache, probably brought on by low blood pressure. I now take a Claritin tablet the day before, the day of and the day after infusion.

After seeing my Rheumy last week, I found out that Remicade can cause elevated liver function levels. He suggested I get full blood work done and I get the results of it tomorrow.

I think you should weigh the risks and make a decision that is based on what your wants and needs are. If the drug allows me to lead and active life, but takes a few years off my life, I guess it is worth it.

Good luck.

Geez

Hi Danni,
I've recently been on Remicade for seven months, pain levels came right down after my 3rd infusion, unfortuntely my ALT's rose after my 4 th infusion, so I was taken off Remicade. My liver enzyme levels returned back to normal after 4 months off the drug.

I'm starting Remicade again in around two weeks time, but will only be taking 1.5mg of Remicade per kg of body weight instead of the usual 5mg per kg. Saying that my maintenance dose will be every six weeks instead of 8. So basically I will be taking a reduced dose & see how I get on.

I found it very difficult to make the decision whether to start or not, as we don't know the long term implications of taking this drug. A small amount of people whilst on Remicade have died & others had serious side affect issues. On the other hand if we can slow down or stop the progression of AS that surely would be a bonus. All has to be taken into account, most drugs have some potential side affects.

I'm sure you'll make your own mind up in the end.

Good luck & best wishes.

George.

Mig,
How's it going with your tooth?

George.