I've had a related disease, rheumatoid arthritis, for over 40 years. I take Enbrel, a medication in the same class as Humira. These drugs are indeed designed to slow - and if you're lucky, halt - the progression of the disease. I take methotrexate in addition to the Enbrel, and I know many people who combine mtx with Humira, too.
Try to keep in mind that when these drugs go through human trials, researchers are required to document every single "bad" thing that happens to a test subject, even if only one person has that side effect, and even if it's not clear if the medication was the cause. If one person has a headache during the trial, it goes on the list as a possible side effect. (That's why reading package inserts are so scary!)
Taking these drugs is absolutely a decision that involves risk/reward calculations. When I look at the very small risk of a serious side effect vs. the absolute certainty that without the drugs I'd be disabled, it's a risk I'm willing to take. For what it's worth, I've been taking meds like these for decades and have not suffered any serious side effects.
If you choose to go the herbal remedy route, please don't stop seeing a rheumatolgist, and keep up with the exercise. You might also want to work with a professional, certified naturopath - please don't self-medicate with herbals without guidance, especially for a serious condition like AS. Just because something is "herbal" or "natural" doesn't automatically mean it's safe to ingest, or better than a pharmaceutical medication.
Many of us combine Western medicine with alternative medicine; make sure your rheumie is informed of everything you're taking. Some supplements may clash with your medications and then you'll really be in a world of hurt. :)
Best of luck!
Thanks. I appreciate your insightful comments. I have had serious side effects in the past with prescribed meds. I once took a single Vioxx and almost died. So my natural inclination is to avoid all prescribed meds whenever possible. If I can't I do thorough research. Some meds turn out to be dangerous after being on the market for years (most recently under investigation is Benicar, which I have also just been prescribed and started taking - great). I am now working on a combo of vitamins and safe herbs that has brought my blood pressure way down, so I may be able to avoid BP drugs altogether. I even control my cholesterol with niacin, which works really well. When I told my rheumatologist that I try to avoid drugs he mentioned that he was inclined to recommend that I do nothing (other than needed exercises), I assume due to the stage of my A.S. and the fact that I am not particularly bothered by it or in pain, however he was obligated to prescribe and advise me of the risks if I did nothing. So I understand the risks. I don't know about rheumatoid arthritis but the problem with A.S. is that there are no markers to indicate progression of the disease. So I am in a quandary and have to consider the drug. I would really like to hear from anyone who is taking or has taken Humira.
I'd be very interested to know what you're taking for your BP! I had a bad experience with Vioxx as well - it turned me in to a zombie and ever since then I've had hypertension. I have a family history of it, too, so maybe I would have been "doomed", anyway!
Your rheumie sounds like a keeper! Not many of them are so understanding and cooperative. Maybe due to the fact that you've been dx'ed relatively late in life, and it seems to be a less aggressive form, you'll have better results with your approach than someone with more aggressive symptoms.
I hear you about the long-term side effects. I've been on Fosamax for my bones for many years and only recently learned that long term use of it can make one's bones brittle. Niiiice. Like the old saying goes, "Ya pays your money and ya takes your chances." :) Still, overall I think I've done well. You make the best decision for you with the information you have at the time.
Hopefully someone who's had experience with Humira will chime in here.
I also have AS. Yes they will slow down the progression of the disease (usually) but every body reacts differently so until you have additional tests done since using those meds you won't really know if it is slowing the disease process. If you are looking for more info I often times find this blog to be very helpful ********* .com. Good luck
Hi. I have RA and AS. I completely relate to being hyper sensitive to prescription drugs. I always have to read all the side effects first because I am bound to experience more than my fair share.
I am curious whether your doctor prescribed any other medications before prescribing Humira. Most of the folks I talk to start with other medications to control their symptoms and then, if nothing else is working, move up to Humira. Usually treatment starts with NSAIDS. If insufficient relief is experienced, DMARDS are prescribed. If there is still an insufficient improvement, then TNF inhibitors are prescribed. You may want to speak with your doctor about your treatment plan or get a second opinion.
I am not aware of anyone who has successfully treated AS or RA with supplements or herbal remedies.
Hi, I also have AS, diagnosed in 2007 and have taken both Enbrel and Humira. Neither did the trick for me. Enbrel did nothing Humira gave minimal relief, it did help with my eye symptoms. I have also been on celebrex and several other medications. I was unable to get much relief with any of them, my lower back and hip would just kill me. About 9 months ago I completely stopped taking everything because they just werent helping and I just felt terrible.(extreme fatigue) I began taking fish oil, vitamin e, b6, b12, calcium, vitamin d, folic acid and a multivitamin. I know it sounds like a lot but I can honestly say i feel better now than I ever have on any of the medications I tried. It took about 3-4 months for me to notice a difference but it was worth it. I occasionally have some pain but it is now few and far between and is totally manageable. I hope this helps. Good luck to you.
Your response is what I am looking for. It is interesting because I have been taking supplements for years and have never had any pain from my A.S. In fact the only reason I discovered I had A.S. was when I went in for a lumbar x-ray for an unrelated issue and they found I had A.S. (didn't find the cause of my other problem which had to do with leg muscle soreness). I had been complaining of back stiffness for a number of years (no pain). I had also been taking lisinopril, an ACE inhibitor, for blood pressure and recently learned that it affects muscles (my doctor never caught the connection). So I had him switch me to Cozaar. My back stiffness immediately got 50% better! The lisinopril had been causing muscle stiffness in my back all along. Don't know if it had anything to do with causing the A.S. or not, but I have other theories on that as well. I still have lumbar stiffness due to the A.S. but have gone in for rehab recently and the exercises are definitely beginning to help. I also have been taking fish oil, vitamin E, B vitamins, folic acid for years, along with some others. Maybe that is why I have never had any pain! I recommend anyone with A.S. to stay off all ACE inhibitors and to try the above vitamin regimen. It certainly can't hurt.
About the BP, I think that it was low after stopping the meds probably because I was dehydrated, rather than because of the supplements. I tend to be dehydrated (not recommended) and lose track of drinking (I never get thirsty). When I started really hydrating it went back up, unfortunately.
My rheumatologist prescribed ibuprofen to start with due to insurance requirements. Then he said he wanted to put me on Humira after I had tried the NSAID for a month. As we know NSAIDs aren't going to stop A.S., and I hate having to take any heavy duty drugs, especially shots. Since I am in no pain, and at my age and state of A.S. I have decided to stay off the meds, do my exercise regimen, watch my posture and continue to try and find the cause for me while researching possible supplemental remedies. After a year I will try to determine if there has been any change in my condition, although I understand that is hard to figure out. Hopefully some progress will be made over the next few years in determining the cause of A.S. and also with new medications.
Also, I have changed my diet up as well. There is a list of foods you can find it easily on the internet, that are considered anti-inflammatory foods.(type it in on google, it gives you several good lists to start with) Ex, green beans, brocolli, tomatos, sweet potatos, carrots, certain types of fish, things of that nature.(I eat lots of tomatos) If I stick to that plan pretty much, it also helps. When I deviate too much,(my problem is chips!) my pain seems to start creeping back in. Of couse diet is not my total problem but I have noticed it does contribute. My dad also has AS and he manages his totally with diet and exercise and a multivitamin. He gets the occasional pain and stiffness but its when he slacks on his diet and exercise. He eats mostly vegetables(he grows them), drinks tea and water only, no cokes, and a lot of fish(that he catches), yes my dad is a redneck,lol. He does a lot of walking, jogging, and bike riding at least 4 times a week. For me personally the meds. just didnt cut it. I dont know if any of this actually slows progression but I just overall feel like my normal self. (guess I will find out if I decide to go to again to a dr, after 6 years of their remedies kinda hard to want to go back.) Anyway, I hope this helps and good luck.
Your food comments are well noted. A lot off foods are inflammatory (chips!) and are bound to cause trouble for A.S. There are a lot of herbal remedies for inflammation that I have come across lately, although you have to be careful of side effects with them too, just like with medications. In my case there is no record of anyone in my family having A.S.and since I have developed the condition late in life and I have taken various supplements for years I am beginning to wonder if there might be any connection, so I am starting to do some research on that.
I know with my dad, he had it for years and just didnt know what to call it until several years ago. Also my great grandmother and grandmother had symptoms but they didnt know what to call it either, my grandmother referred to it as rheumatism. Maybe someone in your family had the symptoms it just went undiagnosed or was called something else. Also, yours came on later in life but is possible you have had it all along. In some people it may never surface but in others a tramatic illness or injury can cause it to surface. I believe that is the case with me. I was in a car accident in 97 and that is when my hip and lower back started giving me problems. Also, in 02, I was given the wrong dosage of medication in the hospital(caused seizures and TIA's, long story but recovered from those, took a while to get the seizures under control but done) and a short time after that, my symptoms began to get worse. I agree about the supplements, definately have to be aware of side effects and interactions with other meds, but they are a definate useful tool in battling AS. Good luck with your research, if I can be of any help feel free to contact me.