Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications How to decide about Remicade

Greetings, everyone --

I am new to the site. I'm not sure I have an official diagnosis of AS. I have the HLA-B27 gene and suffer bouts of iritis, so two of my doctors bugged me for two years to see a rheumatologist. I did so, had a whole host of blood tests and xrays, then had my follow-up on 12/30. The rhuematologist said there was no evidence of active AS, but wanted me to have some xrays of the hip joints (she had to send me off-site for the hip joint xrays - for some reason, her office doesn't do them). This new set of xrays showed "sacroiliatus," so I won't know until my follow-up appt in March if that means I have AS or don't.

Sorry for the long intro -- but I'm writing in anticipation of the follow-up visit. At the last visit, she extolled the virtues of Remicade (a miracle drug!) and said, if the new xrays showed anything, she might recommend it. So I need to be ready for my response.

My question is -- does Remicade prevent the disease progression or is it for pain control? I did read the article in this forum and it looks as though it will prevent the disease from getting worse -- but is it really a miracle?

If I'm not in pain, what would make me want to take it? I do have aches and pains in my neck and spine, but nothing excessive. (And a monthly session with a massage therapist has worked wonders.) I don't take any pain meds - not even OTC NSAIDs because of kidney problems.

I guess the bottom line is -- if you were me, with minimal symptoms, would you take this drug?

Thanks!

Greetings Cindy_CAO - A big *Welcome to the KA family.

IF I were you with minimal symptoms then I would not take any anti-TNF drug. I would go check out the diet forum, try the low starch diet and also would check out the alternatives forum and try taking LDN, low dose Naltrexone. LDN has NO side effects. It keeps the spinal inflammation under control, and for me, means that I don't have to be on the anti-TNF drugs and also I very very rarely need to take painkillers - last time I took a pain killer was in Sept after being stuffed down an MRI tube for 45 mins x 2, twice in one day, and then again for another 45 mins the next day! That left me in a bit of a state - and I had to drive back to where I was staying, a very difficult cross country drive of narrow winding lanes and roads for 2 hours! (Shuddering journey).

Your rheumy will never have heard of LDN and won't be at all interested in prescribing it. But for information, check out: www.lowdosenaltrexone.org For me it has kept my AS in significent control and has also controlled the pain in my spine - before the LDN my spine was in a 'constant' painful inflammatory state. (And IF I run out of my LDN I sure do know about it...)

For some Remicade is a miracle - but they have never tried the LDN so one would not know how they would fare with the LDN instead of the Remicade - or any other of the anti-TNF drugs.

BTW whilst on LDN one does need to be aware of taking supplements and vitamins, nutritional support - I'm not very good at taking them 'smile'. Also, to not eat red meat, especially lamb. I love lamb and occasionally I do eat it, but know also, that...dada...I will suffer as a result, by throwing a mini flare! (My own fault!) Samae with too many starches, like bread, potatoes and pasta, they are a real no-no. I very very rarely eat potatoes, dislike most pasta, so am not tempted by pasta, but, do love GOOD bread, so have to be careful. Oh yes, pastries and sugars are other foods to be avoided. Again, TG I am not a pastry or sugar/sweets fan. So, no hardship for me there.

So again, to address your immediate question, IF I were you would I take this drug? No.

Go well -

ex-pat Molly C (France)
Keeping on Keeping on

(Last time I took a 'drug' was for horrible gut problems, caused by...MSG that a friend had put in her gravy...was put on Sulfasalazine. SSZ completely stuffed me up and I was sick as a dog for over three weeks. Really, really sick. Lost half a stone. Came off the med, and, bingo, started to get better. No more MSG and assuredly NO more, EVER SSZ! It was daft of me to agree to take the stuff. But, NEVER again.)

hmm, that is a good question. When I was diagnosed, I was praying for death as a sweet release from the agony I was in. So the first drug my rheumy put me on was Enbrel, which is another biologic like Remicade. I knew there were really bad risks with this drug, but I was ready to die if something could not be done with the pain. My bad luck, I was deathly allergic Enbrel, it stopped my heart 4 times. So docs say i can't even try the others.

When I figured out the diet connection (for me, not eating sugar, starch or milk) the pain level came way down. I also take LDN (low dose naltrexone) Yay. I don't wish for death anymore.

so to answer your question: hmmmm, only you can decide. lol, I'm real helpful aren't I???

Let us know what you decide and if it works. We'll support you either way.

-Donette

I too am a Newbie to this site and was only dx'd with AS, Ps arth, and pretty much every itis you can think of abt 1 1/2 yrs ago. I too suffered only the iritis for years and no one figured out why until a rhemy did a Hla-b27 which was positive. It was a relief to know finally I wasn't crazy there was something wrong with me. The flares are horrible now I'm on Enbrel, prednisone(lovely horrible drug) methotrexate and pain pills from he*!
But this was all after I started flaring and the xrays showed quickly progressing changes in my spine.
The first thing they tried was sulfasalazine, huge allergic reaction lol to bad too cuz I felt great! Until my face swole up like a balloon.
Humira was the next thing they tried with the pred & I think the methotrexate too. It worked real well for awhile and I did feel great. Pain pills were rare needs and I could exercise and felt normal.... until I built a tolerance to it.
Which I am starting to do with the Enbrel as well, next step I.V infusion TNF.
I just found this site so I am soooo trying the no starch diet, I will try anything to be out of this pain.

From what my rhemy told me the TNF's are suppose to slow down the progression of the disease. He also was a believer in if you have the HLA-B27 and have any symptoms, you have the associated diseases as well whether they are flaring up yet or not. He said some will have flares some can go their whole life not having any.

The iritis alone is bad enough to maybe consider treatment of some kind, make sure you at least follow up with an ophthalmologist regularly. My right eye, the only one that ever flared, the cornea has adhesioned to the back of my eye due to constant undiagnosed AS.
But whether or not to start TNF's that's a decision you should think on and talk to all of your docs to get their various opinions.

Hope all turns out well

Thanks, everyone, for your comments. It seems that the #1 reason to take TNFs is for pain control. Since my pain is minimal (it isn't even bad enough for me to give up potatoes or pasta or bread). So strike one against using the drug.

My doctor seemed to think TNFs might affect progression, if I understood her correctly. (I think she's pretty good as a diagnostician, but it's going to take a while to learn how to talk to her.) What I don't know, though, are the consequences of the disease progression. My father has AS and only went to a primary care physician and a chiropractor all his life He was diagnosed by his brother, who is a radiologist and took Xrays at some point. He has one fused vertibrae and he has neuropathy in his feet, which seem to be the worst outcomes. The neuropathy is dangerous because he has taken some falls. But I'm not even sure the neuropathy came from AS -- he had another condition that may be to blame for that. In other words, if his quality of life is what I can expect in my late 70s, I'm okay with that. The risk of taking relatively new, expensive drugs that might cause lymphoma is not worth it if his disease is as bad as it gets.

Thanks for your input.

Cindy

Cindy_CAO - everyone is different, so what works for one or 'is' for one 'ca' be v. different for another. we constantly find this a well wwith AS. Though hopefully, you will folow closely the course that the AS disease took with your father.

Mebbe one area that you oculd research is that of the TNF drugs themselves. Check out every single item on em that you can google up - PubMed, MedLine are both good. Also the rheumy journals for all published papers - there are a raft of em. Put in different types of searches, try different worded searches - you'd be amazed at the differences this can make, what new matter is revealed! The pharma sites themselves will be very 'pharma' slanted,, but could provide some useful information.

Knowing about the side effects is of course a given to your research (all pretty horrible, again, a given - except again, for a few patients, who throw NO side effects, at all!!) but the nub of your question is: 'What WILL the TNF drugs 'do for 'me' and will they HALT progression?'. That is your start.

You willl need to gather in all the info possible and then you wil be in a better position to make a decision. But, as you stand at the moment, me? I'd still say 'No'. And go the dietary route and 'perhaps' consider the LDN backed with the nutritional supplements. Or, you could start with this last, see how you fare and IF a no-goer, then, reconsider the TNF drugs!

Go well -

You mentioned that you had bouts of iritis. Some of the TNFs help stop the flares. Since iritis can cause you to lose some of your vision, I would think it would be good to treat your situation. I know that when I started taking Humira, the first thing I noticed was that my fatigue was gone. It definably does a lot more then treat the pain. It helps to prevent inflammation. Weather it slows the progress of AS or the related arthritis, is being debated. I just know how much better I feel since I started taking Humira.

With little pain and kidney problems, I, personally, wouldn't take the Remicade (I've taken all 3 biologics and am currently on Enbrel).

BTW, I'm not sure where you are located, but in Australia, it must be hard for the Rheumy's not to prescribe Remicade as the first biologic.

It is my understanding that they get paid to be on call (by Medicare), whilst you are in the hospital being infused.

In the meantime they see their other patients as usual, charging them their normal fee.

If the pain gets worse and you need a biologic, and if you get the choice, I would opt for something like Enbrel first. It's a lot less mucking around than Remicade, where you have to spend hours in a hospital being infused.

If Enbrel doesn't work, then try Humira, and lastly, Remicade!

In my humble opinion that is!

James

I want to thank everyone for their advice on how to make the decision. Great suggestions and I appreciate your sharing your reasoning processes. If I understood my doctor correctly, she thinks Remicade is the only anti-TNF that directly works on the AS disease process (although I may have misunderstood -- she may have been using Remicade instead of the generic term "anti-TNF")
By the way, I don't mean to be complaining about my doctor -- I think she's good, I just have to get used to how she communicates - I'm learning it takes a few visits with specialists before you learn their communication style and language use, etc.

It seems that, minimally, if she recommends this course of action, I should seek a second opinion, though. She did not mention that there were bad side effects. It's nice to have patients' perspectives.

Thank you all again -- your comments are very helpful.

Cindy_CAO - Your rheumy should still be open to discussing everything with you including the side effects of drugs - your *right to ask questions and to 'expect' answers. She should not be brushing you off!

You also have the 'right' to refuse drugs and to go a different route - 'can' need a bit of handling that one, depends on how adament/arrogant one's consultant is!

Go well -