Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Need advise if I should take biologics

Hello all,

I have recently been approved for Humira by my work insurance company. I am just constantly in debate with myself whether to give this medication a try. I definately don't like the possible side effects that this medication may cause but at the same time I would love to see just how much better it can make me feel. The rheumy is pushing me to take these meds but she said ultimately it will be my choice and it's my body. I seem to be doing just fine without Biologics. I take Arthrotec75 once or twice daily as needed and that makes me almost pain free. I am slightly stiff for the first half hour in the morning but loosen right up after a hot shower and some movement. I can still pretty much do anything I want, I rollerbalde, weight train, go for long walks, go camping, etc. I have had symptoms of AS since about 18 years old, now I'm 27. Nothing has fused yet except my SI joints which really don't cause much problems. In general, for the past year I feel like my condition has been improving. When I was 24, 25, I would be in moderate to severe pain for 5-6 days straight and get 1-2 relief days to follow. Now, I have 1-2 bad days and enjoy two weeks at a time of mild symptoms. My problem areas are neck and shoulder where pain is worst. My back only hurts slightly in the lower part and thats pretty much it. What would you guys do in my shoes? Do you guys have any suggestions for me? Should I try these meds?

I wouldn't. If you are able to control your AS with a couple arthrotec a day I'd say you are in pretty good shape. Expecially since the arthrotec kind of protects your stomach. I used to take the arthrotec but eventually it was not enough. That's when I started the Enbrel.

I think the way you should look at biologics is not as pain medication. Are you still fusing? There are allot of pain medications out there and control through diet if it works for you. In my case I was going blind and all other treatment options were closed. Diet for me at the time would have been to slow because I was just about legally blind.

So maybe you need to ask your doctor besides the pain what other reason is he pushing Humira.

Tim

Hey Tim,

See, "Pushing Humira", is exactly well put. I have a young rheumy, I did some research on her before I saw her, she is in her second year of practice and I went to see her because if you want to be selective when it comes to doctors in Toronto you really have to wait a long time. Anyways, I always felt that she was pushing Humira on me for some reason, almost as if there was some financial interest for her in it. When I sat in her office my last visit I was trying to explain to her why I don't want to take this drug and she just started shutting the idea of NSD down and telling me that if I don't take it I can pay for it later and that she wants to be the one to prescribe it to me before she goes on maternaty leave (she is pregrnat). I don't know if I am still fusing. My SI joints have already fused not causing me any discomfort or limiting me much and my lower back has slight calcification shown on x-rays but overall I am feeling better and better and don't want to take this drug if I really don't need to. I think I will wait and if things start to go worse for me I will reconsider, after all, I don't think I will fuse over night.

zwish...

YOU WILL NEVER KNOW.
your body doen't have landing-lights like an airplane, no flashing light like an ambulance.

it's an insidious, continuous process of eating out your bones from the inside out...in addition to fusing
you'll get that osteoporosis too. your Nsaid (working so good) will cover it all or most all up so's ya don't
feel to badly about the things you can't see, test or measure....Fusing is like paint drying...takes time.

but if you got 'some fusing' anywhere, you're gonna have more later than sooner. spondy monster gonna get cha.
you don't really believe this unsupported, unaccepted, unproven fad diet is gonna work do you ?
irish proverb...if wishes were horses then beggars would ride...(thanks Dan...hold that thought; i know you don't like me
saying such things, but that's my opinion, which i may express politely in the land of the free and the home of the brave.)

now if you don't want this doctor to get the commission then wait for her replacement to write the script.
that commission you don't want her to get that's legit; let the next guy get the bucks, but it doesn't change the
facts about what this class of meds do and how they work.

all the newbies runaround looking for answers...there are no answers.
life is complex not simple.
good luck

Zwisch, a few things here:

1. If you want to know what these drugs can do for you see my post in this area of the forums regarding the x-ray results at my last infusion for Remicade. Take into account that I am wheat-free, virtually gluten-free, mostly cow-dairy free, take dance classes, do weight training at least 3 times a week, walk alot and do pilates. I also take any number of supplements. To my mind, my success with Remicade has to do, in part anyway, with the other things I am doing.

2. If you want to know the worst these drugs can do to you, a few folk here have experienced this, but you can also go to Humira.com. You'll see links to "Important Safety Information", "Prescribing Information" and "Healthcare Professionals". Check out these links for comprehensive and detailed information on the med. Every one of the biologics has information such as this posted at the website. It must be there, available to the public, under the law as I understand it. You can also check out Health Canada's website and see what they have to say.

3. And almost more important, you do not trust this doctor. It is imperative that you find one you can trust. You wouldn't take your car to a mechanic that you didn't trust, would you? You say you are in Toronto. There are many rheumies here (University Health Network, St. Michael's Hospital, and Mt. Sinai all have really good rheumatology clinics). You might need to wait a few months to get in, but since you're with a rheumy, you are at least getting care. Continue with this rheumy until you find one you click with.

4. You cannot use negative reaction to NSD against a rheumy at this point. For whatever reason (and you've already seen the debate about this in your other thread), doctors do not know to trust this right now. That's the majority of doctors at this point. Until these rheumies are in the minority, it is no reason to discount a doctor. A truly good rheumy, to my mind, will at the very least (taking into account that they do not learn about this in med school and also the reasons set out in that other post of yours) tell you that he/she is skeptical but if it's helping, go for it. A bad rheumy will poo-poo it and tell you you're nuts for trying (or words to that effect) no matter how much it seems to be helping. Listen to your body. It will tell you within 4 to 8 weeks whether or not the diet is helping you. Some people feel results more quickly than that, others don't.

Personally, I feel that the risks associated with these drugs, while huge, are actually quite minimal when compared with the overall risks in the general public, and when held up beside what they can do to improve your life. When I was researching Remicade, I came to realize that my risk of developing cancer of some kind, even tho greater than in the general public, was actually still not as great as me being hit by a bus or a car. Since walking across the street is more dangerous than taking Remicade, I chose to take Remicade.

Some say that if you are being pain controlled by NSAIDS you don't need these drugs. But the longterm effects of NSAIDS are just as frightening in their own way. You are only 27 and currently have minimal damage. The biologics can help keep it that way. You might not realize how huge the impact AS has had on your life really is until you take a biologic. I know I didn't realize it. It was a revelation to me just how long AS had been affecting me.

But that's my opinion. All you can do is check it out for yourself and make a decision that feels right to you. I can guarantee that the folk here will support you, whatever that decision is.

Hugs,

Thanks very much for your opinions guys. Kat, thanks for all your imput. I have to agree with you 100% about the fact that you don't know what you're suppose to feel like until you get help with the right medication. AS being a slowly but surely progressive disease, I think I may have gottnen use to certain restrictions it poses on my body for so long that I may have forgotten how I should really feel. I'm noticing alot of people on the Biologics forum are saying this. Also, the long term negative effects of NSAID drugs are also quite frightning. I think I already made up my mind now. I will wait another 12 months and continue with my exercises and low starch diet. Then I will order another evaluation, round of x-rays, blood work, etc. If I see progression I will try Humira, if there are no visible changes to my previous x-rays or if I have improved with the way I feel, I will not take these medications. Thanks very much for all your help guys.

That's one of the most insidious things about a progressive disease. You become used to a certain level of pain, a certain level of stiffness. All of a sudden, instead of thinking all pain/stiffness is bad, you find yourself talking about 'acceptible' pain/stiffness levels. Honestly.

When I was 28 (I'm almost 44 now) I should have been diagnosed, but wasn't. I'd been living with back pain since I was about 15 and had never had as much energy as the other kids in my neighbourhood. I am HLA-B27+ and as such, my AS is genetic in nature. I often wonder what would have happened had I actually been diagnosed in 1991/92. Would I have blindly followed where the doctors led me? Would I have developed ulcers from NSAIDS and been unable to take pain meds anymore by my current age? Would I have responded as pro-actively as I did when I was finally diagnosed 6 years ago? I'll never really know. But I do know that having been diagnosed at age 27, you have the opportunity to start fighting this thing now, and that works to your benefit.

I'm glad you've been able to come to a decision that is right for you. I would strongly encourage you to supplement vigorously with high quality supplements. Calcium/Magnesium/Vitamin D are integral, as are Omega 3s, and a high quality multi-vitamin. Also, check out a product called Androsone, which is a herbal anti-inflammatory (you used to be able to find it at Supplements Plus - I linked that for you). There's an Androsone Joint as well, but my naturopath felt that the original formula would be more effective for me, as the Joint formula was more for people with Osteoarthritis, which works differently from AS on our bodies.

I tried for 2 years after my diagnosis to treat my AS holistically. I worked with a naturopath as well as my rheumy (who thankfully had the opinion that as long as it was working don't stop). Unfortunately, I came to a point when I had to admit that this treatment plan wasn't working. Fortunately, it got me into a truly good supplement and dietary regime which I strive to maintain to this day.

Make sure you keep your rheumatologist apprised of what you are doing and, really, keep looking for a rheumy you can trust. You are the manager of your healthcare team and, ultimately, if you don't trust the advice of one of the members of your healthcare team, then it will undermine everything.

Hugs,

My opinion.......no. I am on Humira and it works pretty well in combination with Voltaren and some pain meds. I'm, by no means, pain free.

Would I rather be you and feel very decent without all these meds? You bethcha! Why rush it? I would revisit this question, if or when your pain is affecting your life. Believe me, at that time you won't need to ask anyone.

Welcome to KickAS! And good luck.
Jessie

Hi Z

Yesterday I attended an Arthritis Workshop here in Victoria. Dr. Kim Northcott, a refreshingly, knowledgeable young woman in her late 30s to early 40s was our speaker. Her advice to this question was that you do not take biologics until you have taken 3 NSaids that did not help you. Arthrotec is working for you and you are doing well so her answer to you would be No, you don't need them yet. She also elaborated on the slowing down of the process by using a biologic. She said they have not been on the market long enough to make that claim.

For added info I asked her about my own condition being on Remicade and getting induced Lupus - should I try another biologic and she say NO! She would suggest Anakrin sp? or Rutuximib sp? cancer drug.

Very interesting because the Rheumy I am leaving suggested Humira and his nurse assistant said No, use Enbrel. Anyways, I am starting with a new Rheumy soon so it will be interesting to hear what he has to say.

Good luck with your decision,

Sharl