Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Advice to those new on biologics

I've been on Humira since the beginning of June 2013.

While it hasn't been perfect, it has been very helpful.

In a way its good that i'd been dealing with this for 15 years prior, as I know my body pretty well. Know that my big flares are at the end of the summer. Know the symptoms to my flares, the progression.

Also, its good that I didn't start the Humira until I was pretty good between flares and treating flares with prednisone so I could see how a drug could turn a flare around.

I say all this because, even on the Humira, I flared big time in August. I was getting worse and worse…then took my Humira shot, which did make me better for a day, then starting getting worse again. But my doctor told me to go ahead and take the prednisone for the flare….and I did…for 10 days instead of the usual 6 days, mostly to get me to the next Humira shot…and to try to get the flare squashed down as much as possible….first with pred…then with Humira…essentially a 1-2 punch.

I've seen a few people here where as soon as a biologic starts to not work, they are switched. But maybe that was premature. I know at least one person is now thinking that was the case.

I'm fortunate too that my rheumy wasn't surprised that I'd flare even on the Humira.

Since August, the Humira does make me better between flares. Not always perfectly better, but better in general. And since august, the flares have been fewer or at least less severe than in the past…OK, not fewer? but less severe, yes.

In the recent past, I was taking pred every 10-12 weeks, for the last year or two it was like that.

Since starting Humira, I've only been on pred that one time in August. Before that, it was end of April. So in the last 9 months, I've only been on pred April and August.

I almost felt like I needed it in December; SI joint made my lower back very stiff and sore, but the muscle spasms weren't strong enough to make me scream, so I held off on the pred. Then a few days later, I went in for trigger point injections and walked out with cortisone injections into my neck instead (my interventionalist said the pain wasn't from trigger points but from "arthritis" and/or bone spurs in my neck. And based on how well the injections worked, I think he was correct. Anyway, that bit of cortisone coursing through my body from the injection helped the SI joint and overall.

Then this month, the last week or so, was really fighting feeling crappy…literally….I think the constipation was causing all the other symptoms….but I got the Humira injection yesterday and today I feel so so much better….

so, Humira is still working.

its just that I do still flare.

Just not as badly as before.

and I'm better between flares.

The rheumy said the flares should get fewer and further between and their severity should lessen. We'll see.

Moral of the story:

Don't give up on your biologic too quickly if you think it has stopped working.

Your body could simply be flaring.

Next step: rheumy wants me to investigate my allergies as we both think that may be what causes my body to flare. I contacted an allergist / immunologist, but they want a note from the rheumy before they see me. That's ok with me, my rheumy told me he thought it was a good idea, so I think he'll do a letter, no problem.

That's good advice Sue. We can all still flare on our Biologics or even still get Uveitis occasionally. Thank goodness there is steroids to get us through the flares.

Yes, I agree Pea

If you still flare & still get Uveitis on biologics, do you really believe that you are "enough better" to justify the huge risk in taking them? Obviously, you do, or you wouldn't be taking them. Lol! Let me try asking that again, can you give a little more detail about what the improvements really look like?

I've never tried biologics & don't really want to at all (I have a long history of negative side effects from drugs. Even if it's the rare side effect, I tend to get it. Ugh.) but I've had dr after dr after dr push me toward taking them, repeatedly. But from the outside looking in, if you're still flaring that much on them, it doesn't seem worth it. It would help me if you're willing to share more details on exactly what is better & how much. What is the real before & after difference?

That's a good question and so I'll try.

For the most part, most times, I'm really good the first week and then go downhill the second week.

For example, yesterday and today, I feel almost "normal" again. Nothing hurts me very much, my mind is clear, I have energy, I'm positive and optimistic, and so have been pretty productive, trying to take advantage of it.

The second week can be anywhere from pretty good to pretty bad.

But that means that at least 50% of the time I'm good and that means I can actually live my life. For me that is huge.

OK, a little more detail. My feet are always good now, even in week 2. So I can walk most of the time, can go shopping, can stand and talk to people, etc.

My wrists are almost always good now. That means I can type, I can write, I can chop fruits and vegetables in the kitchen and don't have to get my husband to do it. Even in week 2, my wrists are mostly good.

My gastritis is mostly good now, even in week 2.

I rarely get dry eyes anymore.

I rarely get mouth sores anymore.

The three things that still tend to flare in week 2:

my bowels, my SI joint, my neck / ribs / upper back.

bowels: instead of constant chronic constipation, my bowels are good in week one and yoyo in week 2. Still need to avoid dairy and eggs, still need my probiotics.

SI joint: mostly good in week 1, often ok to good in week 2, sometimes bad in week 2, but not nearly as bad as before Humira. But I am finding that I still need my flector patches.

neck / ribs / upper back: week 1 is generally better than week 2. Week 2 is variable. But I am finding i still need my chiropractor twice a week.


Mostly my advice is this: I'm a cautious person. There have been a lot of times now that I've hesitated to do things, sometimes for years, and then when I finally do and see how helpful it is / how great it is, I often say "I wish I had done this sooner." So now, I tend to do it sooner rather than being so hesitant. You really don't know how good something can be until you try it. If you don't like it, you can always stop.

Triggerpoint injections, prednisone were two things that when I finally did them it was like "WOW! why did I wait so long?"

Humira was a bit like that, "wow, wish I had had the opportunity to try it sooner."

As for safety? I've been on it for a little over 6 months now, only sick once with a head cold, and no worse than before I was on Humira. I think in a lot of ways I'm healthier than I was when I was flaring badly all the time.

To have even 50% of my days back is well worth it to me.

And my rheumy did say we could do it every 10 days instead of every 14 days; I'm seriously considering that…..

But we each have to make our own decisions.

Good question, thanks for asking.

Thanks so much, Sue! That's very helpful to me, and I really appreciate all the details you gave. It was exactly what I was wanting to know.

Yes, I can always stop if I don't like it. My concern is more about the effects I've read about that ppl get after being on it for several years- the effects that take a long time to repair, or don't ever go away, such as liver damage or neurological damage (MS & more). Every time I'm ready to go ahead with it, it seems I read about yet another person who has had lasting damage from it. As someone who tends to get the rare & bad side effects from drugs, I look at those risks very seriously. My AS presentation is so debilitating the thought of possibly having even more pain/disability to deal with overwhelms me beyond my ability to jump in the biologics water, even though I know it also has the possibility to make my functional life possible once again.

Thanks again!

You're welcome.

We do all need to come to decisions for ourselves, but I've found a pushy doctor will make me too scared to try something and a doctor who kindly explains things to me makes it seem less scary.

One thing I do is look at the percentage of people on a drug that get a certain side effect compared to those on placebo. If the side effect is minor, I might try it even if the percentage is high. If the side effect is major, I'll consider the drug if the percentage is low. As far as I can tell, the bad side effects of TNF inhibitors is pretty low. Too, it can depend on family background (i.e. MS risk, cancer risk), but that's the kind of conversation a good doctor will have with the patient.

And some of what you say, like MS…if you are aware and pay attention, soon as you get new symptoms that seem MS like, you can stop the drug before it progresses too far….that's my understanding though I might be wrong.

And from someone who has / had NAFLD, if one monitors the liver enzymes, one can tell when the liver starts to get a little unhappy and if the culprit is removed right away, the liver can repair itself in those initial stages. I had NAFLD from diabetes (fatty infiltration due to carbs being converted to fats due to the diabetes), but we caught it early with blood work and the pravastatin that I started taking for my lipids / cholesterol has really improved my liver. So I have experience fixing a liver at the beginning stages of damage.

My aunt developed some cirrhosis of the liver due to the diabetes. She lost a lot of weight and improved her diet tremendously (while I've always eaten healthy, she ate terribly (she's the first to admit that…she was a bus dispatcher and so ate a lot of fast food, donuts, things on the run)) and was able to stop any further liver damage.

But you must weigh the risks and advantages for yourself. It was a risk I was willing to take.

I've read books / articles that talk about how we can often be most afraid of the things with the lowest risks and not afraid of the things with the highest risks, depending on what we are used to, depending on the news we hear, etc. Often our fears do not correlate with the risks….I try to remember that whenever I'm trying to evaluate something.

Talk to your doctor about your fears. With his or her knowledge, maybe you can come to an informed decision. Ask to look at the paperwork that comes with the various biologics or get it on-line. Look at the percentage of people that get the things you're worried about.

These discussions do help as well. They definitely helped me.

I just kept remembering those who said "it changed my life" in regards to the biologics…I wanted to be able to say that.

But again, you have to decide for yourself.

Wow, Sue, thank for you verbalizing things so well for me. You put your finger on several things that apply. All I've had is pushy docs here & it makes my (learned) wariness of docs turn to outright mistrust. I read some of the posts here & think, "Now why can't I find a doc like that?" But having you verbalized it helps me realize it is indeed playing into my fears.

You're also right on target about the things I fear most/least being inverse to what is likely most applicable. That's been true of a number of things in my life, not just health issues. Thanks for that reminder as well.

And your experience with the liver damage is also helpful. I didn't know it was something that could be readily monitored.

Your experience & willingness to "hear" me is so unlike what I've gotten from Rhuemies here & at Mayo as well. At Mayo, at least they pretended to listen, but in the end I learned they were just biding their time like the others until they could tell me I was nuts for not trying them. I didn't expect that there. Sometimes I wonder if Rhuemies look at my records & see I've been to a couple different docs and mentally label me as non-compliant. I wish there was a respect for the patient who isn't ready to take biologics yet instead of a distain. I know they exist from what I've read here from others but they don't seem to practice in my neck of the woods.

Anywho thanks for listening & bouncing your thoughts back. It really is helpful.

Glad to chat, anytime, happygramma

good luck in making the right decision for you

Sue about summed it all up. The Dr.s monitor you very, very carefully for anything and everything. If you get an infection, they want to know. If you get a fever over 101, they want to know. If your pulse is high, they want to know. They really check you liver enzymes and all my various Dr.s send all their notes to my Rheumatologist. He is in the know.

I was getting Uveitis so much I was in fear of loosing my eyesight. Once I switched from Humira to Remicade and then upped the dose, I got rid of the Uveitis flares. I had Uveitis so much, I now have a cataract from the heavy steroid use in the drops you have to take. So taking a biologic was an easy choice for me. Didn't stop the pain but slowed the progression down a bit. I am quite debilitated from the disease but I want to keep my vision. For the pain, I finally got a pain pump and woooo hooo, I have my life back with the exception of a gimpy foot right now.