Hi Katie, I started Humira in November, and just took my third injection on Christmas Eve, so no expert at all. It has been super easy. The first time I injected I was a bit surprised by how hard the pen was to press, so I jumped a bit when it went in and lost a bit of the medication. If you are doing the first one in the doctor's office that should not be a problem. The second and third shots were easy peasy. I get a bit of a red welt, but not bad and not painful or itchy. I read all the information and side effects and so far I have not had any. Sign up for Humira Complete. They help with the cost until you reach your deductible or however your insurance works. They sent me a little cooler for traveling with the meds, which I had to do over Christmas. They will also have a nurse touch base with you. My specialty pharmacy also has a nurse call me, so for the first couple of weeks I felt like I was getting called constantly! I live in the frozen north, so I had to arrange to have it shipped where it would not sit outside for any length of time, as it cannot freeze. I had to have a TB test before I my first injection, but I haven't had the shingles vaccine, as my Rheumy told me I could not have it. Perhaps it is because of the other meds I am on, Humira is an addition for me, since I am not where the doctor wants me to be on the other medications. I know there are some folks on here who have been on biologics for a much longer time, and I am sure they will chime in. Good luck to you! Peggy

Thanks, Peggy. I had the TB test as well, and they gave me information about Humira Complete. I appreciate hearing from someone with even a few months more experience than I have!

The shingles vaccine has been shown to have no more efficacy than if you don't get it. In fact, it has been known to give people shingles. You are only in danger for shingles if you have had chicken pox. The virus lays dormant for decades (in my cases) then under stress, or sun, or some combination of things, it becomes active. I had shingles four times. The worst case was the first, when I let it go a month before I sought help. By then the week of Valtrex did nothing. At 4 months a doctor who had worked with AIDS patients put me on a month of Famvir, a much stronger anti-viral, and after 5 months the attack was finally over.

My rheumatologist wanted me to go off Sulfasalazine and Kineret, which probably would have been a good idea, but I didn't want to go to that place of total med failure, which had left me bed ridden only a few months earlier. My bad!

A pneumococcus vaccine is now recommended. My husband has no spleen, and he gets it every 5 years. When he forgets, he generally ends up in the ICU dying. Seriously! I would say I am much less susceptible to colds and things this year.

As for Humira, I have not been on it, but remember to get your liver tested monthly, as for some people, it can be hard on the liver. My liver is tricky, which is why I was never put on it.

And the TB test is a good thing. I have a young friend with lupus, and she was found to have latent TB. She was supposed to go on a long course of antibiotics, but refused and now her treatment options are limited.

I also get my Orencia shipped to the door, and I have had a few scary moments. Once when it was hot outside and I forgot to tell my husband it was coming, and I was out of town. The FedEx guy left it on the doorstep, but fortunately, the ice pack was barely melted. Then, before Christmas, I got panicky around 3 pm when the package had not arrived. I phoned to track it, and he finally came to the door at 4:45 pm, just before the deadline of 5 pm. Although the pharmacy said the packaging was good for up to 48 hours.

You need to find a pharmacy that deals with specialized drugs, because they know how to pack and get the shipments right. FedEx has generally been excellent. They send the same driver every time, and he knows my name. My only question is, should you send the FedEx driver away with a Christmas card and/or gift? LOL
I am in BC, if you are nearby, and I used London Drugs in Alberta, who were also good at handling the biologics. I never had a problem in 10 years of using them
(PM me if you are in Canada, and maybe we can figure out the best place to get Humira.)

Well, let us know how things go!

1. every single person responds to every single one of the dmards or biologics differently. so our advice to you is just that anecdotal and is not medical advice or pontificating onto you (smiling again). . if you ask too much it's like being pregnant and listening to horror stories, remember? (smiling) so maybe tips of the trade. but there is probably one life threatening ICU story on here for every drug that we take (I am thinking of buddha cat and the mtx). enbrel has been out what about 20 years and humira is like the twin? it's just a standard first biologic after a dmard. think of yourself in that horse camp. don't think zebra even if one of us posts our zebra story.

2. do remember that you have a choice of TWO types of needles: the (stupid there we go with my own anecdotal input ha ha) auto injector AND the pre-filled syringe. the rheumie scripts for either one and each type of needle must be scripted for exactly as you two agree. I can't say enough about doing it myself, not watching the histrionics on you tube videos or not listening to other's horror stories and forgoing the auto injector. the pre filled syringe is controlled by you going in and is not on a hydraulic whooooooooooosh all at once. you can pre-ice your area and it's way easier than little tiny kids that are welded to needles like 10 year old's with type one diabetes. you will be giving the lecture on it shortly to everyone else. don't give it a second thought.

3. someone's else's idiosyncratic allergic reaction or infection prone status (like my lungs) will not necessarily be your's. my advice would be to ignore.

4. diet to me is for preventing other life morbidities. if you would be doing it anyway then keep doing it if it happens to make you happy and give joy to your life. kale recipes welcome at any time.

congratulations on getting the pre admission review and paperwork crap part out of the way for your humira.

hugs
depot

Yeah, depot......I'm not looking for horror stories or anything - I'm looking for things like your comment about two kinds of needles. Exactly the kind of thing I should know to ask about in case it doesn't come up. I'm comfortable with the need to add the Humira. The MTX has helped with the pain and fatigue but it hasn't stopped the crippling of my hands. My right middle finger is the latest one to start to tilt to starboard. (Or as my son said, if I try to give someone the finger now, I'll be pointing to the wrong person.) The idea of the shots doesn't freak me out at all. I'm just looking for those little insights that come from people who have had the experience already. Now, about that kale recipe - Christmas Eve, we had salmon, and a side dish of kale massaged with olive oil, topped with warm sauteed red onions, goat cheese, and dried cranberries. Exquisite. And it was just as good warmed up two days later. Hugs to you!

I was on Humira in the past and just wanted to add a few tips about actually taking the medication that I thought helped me. I used the auto-injector without any problems and it is definitely good to do it in the doctor's office the first time. The practice pen (I you got one) lets you "feel" how the button pushes but obviously not the needle. I took the injector out of the fridge about 20-30 minutes before using it (just don't forget about it so it doesn't sit out too long) - because it seemed to sting less when it wasn't very cold. I alternated injections in my thighs and abdomen - and so I did not forget where I was in my circuit, I wrote on the boxes where those injections were to go. I also felt the injections in my abdomen (to the R or L of my belly button) were much less painful than my thighs. Maybe because I have more "padding" there vs more muscular legs. I tell you that because I know some people have a weird feeling about injecting into their abdomen -- but really I think it was much better. Good luck!

that's a good kale recipe. way to go.

the pre filled syringe. it has less chemicals and you control the drug pushing it in. and the big rich bio company is not going to suggest it because they make more money billing the auto injector which is a huge tool designed so you will not "see" the needle. what happens is the needle ends up being twice the size of the needle on the pre filled syringe to accommodate the design function.

it hurts less than the auto injector, from my vantage point, only, and i have used them both on many biologics. i feel like the auto injector is a horrific waste of money and a useless delivery system. I am not afraid of needles. use whatever site is best for you. I am not going to recommend one. stick in both and then choose based on your body and your comfort level.

I can tell you I have a left/right chart on the fridge and i find it helpful. it reminds which area to go for and it demonstrates over 52 weeks my stop and starts for lung infections. my bio diary.

do NOT watch the stupid skipping through the fields dvd informmercials that might be sent with your package. marketing drivel. ask for a sharps container. free. ask for a travel bag with mini freezer bag. free. useful for flying. ask for alcohol swabs if they offer them take em.

I did NOT need a training session in the doctor's office. that was a waste of time for me. i had been previously injecting methotrexate. do what you want there but I have a feeling that you would not be the type that would need it. if you use a pre filled syringe it is not different (on this drug humira) for me than mtx.

some of the bio companies have weird needles. for anyone that used actemra by injection did you notice that weird hybrid like half auto injector half pre filled syringe? I found it awkward for my hands. Orencia that was cool there was only one option the pre filled syringe.

ice the thigh if using that area, if you can remember.

I used to do these at work, on my lunch, hour, alone in my office with the door locked using my office college fridge.

be on the look out for what i call zebra horror stories was my point. each one of us has one. and they will not apply to you.

you can't pick your delivery specialty pharmacy in my area, the insurance does that. ditto for whether it is UPS or fed ex. But I have learned that I can deliver to alternate sites which is handy when traveling. also - this is great - I had humira and also enbrel and also orencia delivered to my work office! I found that convenient. I had my own college fridge in my office.

you are such a go getter you'll be fine.

if you want to talk on the phone about the first bio stick of your life then private message me.

kudos on this step

depot

This is all good to know. At least the delivery part of this will be relatively easy - this is a farm, and there's fridges in one of the outbuildings near the driveway. The UPS man already knows to put the various vaccines for the animals in there when they are delivered. And I usually work here, except for market days. If the delivery person is consistent (probably more common in rural areas than urban) we should be able to have a routine that keeps the meds safe. I can't imagine the logistics of the deliveries if I lived in town and was employed off site.

I have high hopes for this. The MTX definitely helped, but even now that the dose has been upped to eight pills, it isn't doing enough. I'm hoping the Humira is the final piece of the puzzle. Although from what I have learned here, the puzzle itself can change with time - I can apparently find something that works for me but a few years later might need to make changes because things can stop working.

Here's one thing that surprised me: my last visit to the rheumatologist was my fourth appointment over the course of eight months, and my first since the MTX was prescribed. She asked how I was feeling, and she looked at the changes in my hands which I pointed out. OK, fine. But when I was diagnosed, there was blood work done that measured the level of inflammation; there was various objective numbers on the results that led tot he diagnosis. I asked if that would be repeated now that I had been taking MTX for three months, assuming that repeating the test would be a way to accurately measure its effectiveness.

I was surprised to find out that the Rh. is basing her recommendations (in this case, adding Humira) mostly on the basis of my interpretation of how I feel, and there is no plan to repeat the tests that found the inflammation int he first place. This doesn't sit well with me, really. I want a little more science here. I know darn well that not only will two people interpret pain differently, but that ONE person can interpret it differently on different days. I get that this disease is something of a moving target to begin with, but it just seems so subjective to me to not use a test that (it seems, to me) would have established a baseline eight months ago.

What am I missing here? Wouldn't the initial bloodwork have shown that factors x, y and z existed at levels a, b, and c? And wouldn't repeating those tests after months of treatment provide objective information about how x, y and z are doing now? I am not assuming my Rh is inadequate, I'm assuming there's something that I don't understand. Anyone know?

Ok! A clue! Go to mthx injectable immediately. In Canada, the rheumatologists don't even prescribe the pills anymore. The reason? The body does not readily absorb mthx from the pills. The needles are so much better. In combo with Humira, you may be very happy with the results.

What did my rheumatologist says? Only 20% of the mthx is absorbed from the pills? He insisted on me having needles this second try with it, 7 years after I was forced off. I also insisted, because the oral mthx ruined my stomach, probably forever. Besides, mthx is so easy to give in a needle, it isn't funny. You use a diabetic needle, and most weeks, I watch it going in and wonder why I didn't not feel a single thing! And that is a good thing! Those diabetics sure know how to demand needles that don't hurt! Then again, maybe some of the biologics are more viscous, needing fatter needles, which hurt a teensy bit more!

the blood markers don't change all that rapidly - I guess is what your rheum is going to say - ask him/her. my rheum has told me that malpractice wise the pace of the bloodwork to measure my liver and kidney for my methotrexate affects thereof and biologics are fixed and frequent on the timetable. she does the other stuff way more infrequently to annual.

some folks are sero negative and some aint. some folks have erosions and some don't. some have their joints examined and show noticeable swelling and some don't show swelling. some have crippling loss of function like walking and some don't. some get ulnar deviations and some don't. your joints are telling her something.

you must have some combination of everything that is tipping her script writing. ask her. she'll appreciate your thought process.

depot

Every 3 months I have

a comprehensive metabolic panel,

a liver function panel,

CRP

ESR ....Though it's always been normal

Etc.

I have exceptional PPO insurance and am not limited in any way.

What specific questions do you have about Humira. (as opposed to asking "what do I need to know")?

Californialynn, if I had the specific questions I'd ask the doctor or just research it. I posted here because I know that there's always 'insider information' that people who have already had the experience know about. The different types of needles is a perfect example, because I didn't know there were options. And it's helpful to know in advance that the shipping requires some planning since the product has to be kept cold. These are great pieces of information to have ahead of time, and I'm grateful for the advice!

Katie, drop the cranberry's (nightshade) and you'll be better for it. Agree with Marlene, get the liquid MTX but be aware as you do that because the body absorbs it much better dosage doesn't need to be as high as with pills. My addition to the answers to your question is if you are like I am and if you've experienced any heightening of anxiety since taking MTX.....if so expect it to increase greatly as you add Humira. It lasts three hard days and eases off to a slightly elevated level. If you have such the fix is easy, over the counter, zero side effects. Go to a health food store, an essential oils seller and get a bottle of Frankincense (yes, Bible gifts to baby Jesus). Rub a drop or two at the base of your skull where the spinal column enters, whats left on your finger swab the inside of your cheeks. Levels the anxiety right away, no side effects and you can't OD. I think am a rarity with the anxiety, very few people here ever mention it and when I report it to the RA, the drug manufacturer I get this astonished reaction of "Really!??". Actemra does me the same as Humira.

Katie made one remark that warrants a comment: "
I was surprised to find out that the Rh. is basing her recommendations (in this case, adding Humira) mostly on the basis of my interpretation of how I feel, and there is no plan to repeat the tests that found the inflammation int he first place."

While testing is very important, at least quarterly, be thankful your rheumatologist is going based on how you feel versus what the test results are.

When I was diagnosed over 20 years ago they didn't know there was a link between CRP and inflammation in RA. So they gold standard was to run the ESR [Sed Rate]. NEVER ONCE IN PROBABLY 100 TESTS OVER THE YEARS HAVE I EVER HAD AN ABNORMAL SED RATE. So it was imperative that my doctor dose me on the basis of what I told him.

Katie, I think "Rh" is either a typo or ???? I think you meant rheumatologist. To ME it means "Rhesus" [as in the Rhesus monkey]. Maybe a good slang term would be R-MD.

katie
don't worry about the coldness shipping thing. the specialty pharmacy builds all the worrying into the shipping to protect the $4000 investment they own until it is in your hands. they look at the region and weather and ship overnight and use ice packs and wasteful ridiculous styrofoam picnic baskets that you will henceforth be begging your relatives and co workers to re purpose. it is also OK or it has been for me (in my humble opinion only) to let the box sit somewhere on my property or at my business portico for the day it is delivered for a few hours. they work really hard to re-deliver same day when they screw up due to the cold factor. Once they screwed up my delivery at work and the specialty pharmacy paid an additional carrier to re-deliver same day to my house at night at 8 pm....yeah... (the $4000 factor...)

but you don't have to worry, they do. all you need is a fridge on the other end. sometimes when I lose power here at my house in the summer I plan ahead and move my needles around to a friend's or get a cooler with ice. I don't have a generator and I lose power a fair amount.

I happen to have have had zero side effects from any biologic. BUT keep in mind that the rheumatologist will tell you to allow for loading. orencia took me almost 6 months to get cooking. enbrel and humira were quicker but not like one shot - so many weeks or months - varies between all persons with RA.

marlene the fatter needles are for the auto injectors. i have injected all my biologics with requested to my rheum to script pre filled syringes which feel like mtx to me - as in nothing. except for actemra which has a spring and a different type hybrid felt like 1/2 auto injector 1/2 syringe. i agree that in general biologics must have other stuff like preservatives and crap to thicken up the batter. icing helped me a wicked lot with humira. i don't ice with enbrel. orencia felt like water.

depot