Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hello again, I have a few questions :)

Hello. I'm Becki, a newbie, and I have just a couple of questions.

My rheumetologist (sp?) gave me 2 pamphlets to read about Humira, and Remicade. He said these kind of drugs could stop the progression of the AS, and explained how they both work. I understood what he was telling me, but I just wonder if it is worth the cost. I have Blue Cross insurance, but have been unable to get an actual person on the phone to find out what our portion of the cost would be.
Does either of them work like the pamphlets say? I'm mostly concerned about stopping the progession (I am fusing already in my sac joints, and have it in my ribs and neck too...not to mention my heels, right knee and right elbow).
I can live with the pain I have now, but I really would love to not have it get any worse.
My rheumy does not prescribe narcotic pain meds, so I'm getting by on ibuprofen, and the few darvocet I have left from a tooth extraction. Those will be gone soon.
Anyway, I am so new to this (understanding the disease, not pain) that I just would like to know what is the "normal" course of treatment, if there even is one?
I'm feeling a bit lost and overwhelmed by this diagnosis, and my doc seems pretty hurried when I have an appointment.

I do have another appointment with him next Tuesday to talk about a physical therapist teaching me the exercises I need to be doing. He drew blood on Monday to see my inflammation (sp?) level.

Thanks in advance to any of you who can help me out a bit. I hate feeling so, well, needy at this point, but after so many tests just to figure out what my problem was/is, I am pretty confused at it all. For a long time, they thought it was lupus till they did a scan of my pelvis.
I just keep thinking that this should have been found a long time ago....makes me a bit angry, if you know what I mean.

Thanks again, and tender hugs,
Bex

With AS, there is definitely NOT a treatment that works for everyone, or even most people. Most of the treatments have some serious side effects, which you may or may not experience. Humira and Remicade are both treatments that some people here have found to work great for them. Sometimes people just have to weigh out all the risks and possible benefits. I don't even know if doctors can tell which treatment would be best for anyone, you might just have to try one and see. I take a high dose of anti-inflammatories, prednisone(which I am dosing down on) and methotrexate (an immune system repressor). Before that, I tried Sulphasalazine and it made me violently sick. Some people here take that and it works for them. I hope this helps.....

Thanks for the advice, Kat. Sounds like you may have an allergy of sulfites....I get violent headaches just from eggs, and red wine with sulfites added. I don't think I've ever had any sulfa drugs though.
I know a "general" kind of therapy is way too simple for this kind of disease, I guess I was just hoping for some kind of guidelines to go by. I can wish, can't I?

I am having a really bad week (actually 10 days now) of back pain, and my doc wanted me to stay flat on my back, no pillows, for 2 days. Pretty hard to do and run a house at the same time....lol. He gave me flexeril and ansaid and told me to double dose the trazadone (I was only taking 30mg) to help me sleep better. I'm living on about 3 hours a night right now. 30 mg did nothing at all. I hate taking all these drugs. I am taking Cymbalta too, which really is good stuff. The first 2 months I took it, I didn't have ANY period cramps at all! First time in 35 years, a period without cramps! I have fibromyalgia too, so this Cymbalta really works wonders for that. It does not, however, help my back, ribs and neck pain.

Okay....I can see that I'm really spilling and may become a bother to some folks, so I'll shut up now....:)

Hugs,
Bex

For a lot of people, something like a dose of prednisone that tapers down over ten days can help pull you out of a really bad flare. Somehow you have to get the inflammation under control to decrease the pain. I hope you get out of pain soon! I've been there.....

Hi Bex,

Sorry to hear that you're being overwhelmed by all the information you're being hit with, but don't worry, you've come to the right place to help you deal with all this new stuff. Don't you dare worry about feeling needy--anyone who is just starting to deal with all that AS brings to the table is going to need some help, period, and that does not make you needy in any way, shape, or form. Or, at least I guess it doesn't make you needy in the pejorative sense with which that word can be used. Don't ever hesitate to come into KA and ask all the questions you want, as often as you want--you'll find that people are ready to help every time.

Now, as for the humira/remicade question. I will partially agree with what Kathair has said in her post, but I guess I disagree in a minor way too. She is right when she says that there is not one single treatment that works for everyone--just doesn't exist. However, I would say that with a small grain of salt, because in just the past few years, studies and actual patient results have shown that the anti-TNF drugs (the class of drugs that humira and remicade belong to, as does enbrel and one other less common one I am forgetting right now) DO work for the majority of AS patients. While they are not the first line of defense that doctors use, that is due more to cost and the fact that more common, less expensive drugs do often work against AS for a while--and often at great cost to other parts of our body. While it is true that the anti-TNF drugs can have some very serious side effects, so far the majority of people taking them experience either no or minor side effects. That fact, combined with the simple fact that these drugs are the first to truly stop the progression of AS in patients, makes them the best drugs available in fighting AS. While saying it that way makes it my opinion only, if you do some research (you can start in the TNF forum here at KA), you'll find a lot of medical facts to back up that opinion.

That said, you should definitely do your homework and fully read up on all possible side effects from humira and remicade before you ever take a single dose. Because one of the possible side effects is even as severe as lymphoma, deciding to take the anti-TNF drugs is not something to be taken lightly. In fact, because the drugs can compromise our already lowered immune system, the side effects, when they do occur, are usually big ones. However, if you do go ahead and do the research and ultimately decide that those drugs are the best choice for you, I think you'll find that you will have better results under humira or remicade (and ask about enbrel--it's worked better than humira for most people, and it's easier to use than remicade) than with any other drug. For me, sure prednisone works wonders, but the side effects are terrible and almost instantaneous--I get thrush, water retention and subsequent badly swollen feet, and heart arrythmia. thus, I can only take that for short periods, usually to fight iritis. Methotrexate also has strong side effects when I take it, and it never worked that well fo rme. Again, if you do the research, you'll find that the anti-TNF drugs are safer than those two drugs for most AS patients.

So, to answer one of your most important questions, yes these drugs actually can work exactly as the pamphlets say they work, and for most people, the DO work that way. Talk over any concerns you have with your doctor, and if you feel he isn't giving you the attention or time you deserve, then call him on it. Don't dance around the issue--come right out and tell him that you don't feel he's taking you seriously, or that he's not paying full attention, or that you feel as if you are always being rushed through an appointment and that, because this drug decision is so important to you, you really need him to just sit with you for a moment and really focus on your concerns. If he gets upset when you are this blunt with him, or starts acting all bitc-- toward you, give him a moment to blow off steam, see if he calms down, and if he doesn't, let him know that you think it would be best if you found another rheumy to work with. Thank him for his time, and leave.

Frankly, and this is again just my opinion, I'd have a problem staying with any doctor who said out front that he simply won't prescribe narcotic pain medications, ever. That kind of absolutist thinking has no place in a practice where the doctor will be seeing patients who are facing terrible, intractable, and permanent chronic pain for the rest of their lives. If he wants to say that he will only use them as an absolute last line of defense after other drugs have failed to adequately reduce your pain (and then only in combination with more traditional treatments), then I'd have no problem with that. But to say no right off the bat? Well, to me that says that your doctor honestly does not care how much pain you are in, that even though he knows there is a class of medications that will ease your pain and greatly increase your quality of life, he won't use them. How does that fit under "first do no harm?" I understand the DEA is making life miserable for doctors in many states, but I'd like to still believe that a doctor who only prescribes those pain meds as they are intended to be used, and in moderation for only the patients in the worst pain, will not be persecuted (or prosecuted, for that matter). Unfortunately, I know that might not always be true, but dang it, if you are going to go into a field like rheumatology, I think you have to either be ready to use those medications in your practice, or, at the absolute minimum, be very willing to send a patient to a pain specialist for treatment that will dovetale with the arthritis treatment. That's just being humane, if you ask me.

That last paragraph wanders from your main paint, I know, but I felt it was important to say that. I know that for me, without the combination of enbrel and oxycontin, I would likely be bedridden, or, at the very least, would be in horrific pain that would render my quality of life almost nil. With them, I still hold the job I've had for 20 years and I still have a very active social life.

You've done the right thing by asking for input on humira and remicade. If you scroll through the forum pages, you'll find that many others have asked the exact same questions that you've asked here when they were faced with taking these drugs for the first time. The fact that this question has been asked might limit the number of responses you get, but whether or not that turns out to be true, I would strongly encourage you to look back in the forum as I suggest, or, alternately, use our search feature to search the forum on "humira," "remicade," and "enbrel" to find all the great information that has been posted on these drugs before. In addition, go to the list of forums and you'll see that there is an entire forum dedicated to questions and comments about all of the anti-TNF drugs; obviously, you'll find a wealth of information there that will help you out.

Good luck, and again, never hesitate to come in here and ask all the questions you need to ask--we're always here to help.

Brad

Hi Bex

Someone else highly allergic to sulfites. My allergies also include sulfa, sulfates and sulfer. I have other drug allergies but this is the worse. Sulfites are in everything. No doctor will prescribe me pain medication because of my life threatening allergy to sulfites.

Bex, I am allergic to tylenol and Ibupropen, because of sulifite allergy. You really have to investigate the medication your taking. It could be causing some of your problems.

Gerri

Beck, bex...up-ham-ia ? aloha

i so wanted to reply...glad wolverine fan did first.
he's right...about everything...

particularly, 'thanks for your time, but i'm gonna go elsewhere'...a doctor who deals with people in cronic pain
and doesn't 'believe' in pain meds...would you go to an ob/gyn who didn't 'believe' in birth control.

my now rheumy#5 gives me about forty-five minutes per visit, he sits down; and he never fails to ask
'well ok...now, is there anything else that concerns you?' I have taken an hour and forty minutes once...

there is a high probability of a success with either enbrel, humira, or remicade...one or t'other will usually work.
the literature for these drugs may cause you some concerns, your trust and comfort with your doctor is important.
enbrel is the least expensive, and it will cost you whateve you agreed to when you signed up for insurance.
it's retail price is $ 1684-1800 per MONTH...a 20% copay will be about $ 350-400 range...IF when you made your
insurance choices bought the 'BETTER' plan then copay can sometime be $40-60/month.

(call your pharmacy...and ask them to create a dummy script for enbrel for you and see how the computer prices it.)
humira is more and remicade involves infusions at a med center and costs about $ 40-50,000 per YEAR.

anyways, welcome
good luck
best
aloha Ben

Hi Beckie, welcome to KA.

I can tell you that these drugs are like miracles to most of the people who take them. There are some very scary side effects, true, but those of us whom these meds have helped feel the side effects are worth it. Personally speaking, my quality of life since starting Remicade 18 months or so ago is so much better. I hadn't realized how much and how long AS had been affecting me until I started on it.

I don't blame you for feeling lost. Good god, I thought I was going to explode with it all. Finding this place is one of the better things you've done for yourself. The folk here have seen it all, it seems and there's always someone willing to offer advice and support.

When you're talking to your doctors, it's best to take a list of questions or issues you want to discuss. Put a star beside the three most important to you. Then hand the entire list to your doctor to review so that he or she can ensure that things that are medically important are looked at. And don't leave until you get answers to at least the things most important. And if you don't feel you can trust this doctor and have the latitude to do so, find another doctor. It is your right.

Just so you know, I am fused in my left sacroiliac and I have four 'squared-off' (pre-fusing) vertebrae in my thoracic area (mid/upper back) and my neck has always had some pain. Through a combination of diet, exercise and meds (both herbal/supplemental and NSAIDS) I have managed to keep the damage from progressing further. Being put on Remicade really has helped alot.

I'm glad your doc is talking to you about physio. Exercise is vital to our mobility. You'll read more about that as you spend time here, as we've had numerous discussions about it. If you can get into a Pilates class, I would greatly recommend it. New York Pilates is extremely good - better than Stott because NY Pilates involves alot of stretching out that Stott doesn't.

And check out the no/low starch diet forum. Doctors, as a rule it seems, discount the importance of diet to our well being. It doesn't work for everyone, but alot of people have had very good results by lowering or eliminating starch from their diets. Enough so that it's worth trying.

And I don't blame you for being angry either. As a woman, you've probably been living with this pain on and off for over 10 years. The problems is that for decades it was believed that only one woman for every ten men got AS. The latest stat is 7 women for every 10 men, but that's quite recent and the medical community is sometimes slow to pick up on these changes. Also, it can take upwards of 10 years for the damage to become evident (i.e. fusing starting) in women. AS progresses extremely differently in us than in men and so we tend to be misdiagnosed alot. In my case, I began showing overt signs back in 1987 or so and experienced my first full-blown, almost every symptom there is, flare in 1991/92, but there was no visible (by x-ray) damage until 2001 and that's when I was diagnosed.

But you are now diagnosed and definitely not alone with your pain anymore. We're here.

Hugs,