My first Humira shot was yesterday

[evanscyoc]

So, I went to my Rheumy yesterday and gave myself my first Humira shot. It was a LOT easier than I had expected. It barely stung at all, and 24 hours later I still haven't had an injection site reaction. The only side affect I have had so far was a headache throughout the night. It even woke me up a few times, but nothing today.
This is very reassuring for me. The doc was optomistic that I might feel a lot better even by my next shot in two weeks. Yay!

[patti2957]

Thanks for sharing; I'm due for my first shot on Friday and was wondering what to expect. I'll hope for the same.
thanks,
Patti

[evanscyoc]

I hope your's goes just as easily. I think I hyped it up in my head and really, it was nothing. The needle was so small I didn't even feel it, and there was a slight sting from the drug, but even that wasn't terrible. I've had flu shots that stung worse than that. The headache was a bit annoying, but worth it and its gone today.

Let me know how yours goes either in this thread or PM. Good luck!

[crimekate]

hi all -

I wish everyone great luck with the Humira!

The headache may well have been a coincidence - I don't think that's a reported side effect (but it certainly could be in your case). I am headache-prone and inject Humira weekly (before that, Enbrel for 3 months) and never had headaches associated. Sometimes I get a small ISR (much smaller than the ones I would get with Enbrel), but nothing else in the way of side effects. And the stuff works like a dream for me.. (but only for about 8 days... which is why I do it once per week).

I hope you all have similar great experiences !!

Edited to add: It definitely does sting. I have a nasty needle phobia, so my husband injects me (I've done it myself, but it's just easier if he does it). It's not the most pleasant couple of minutes in our week, to be sure, but it's worth it. The slower you go, the less it stings. I've also found that stopping and starting a few times - leave the needle in, just stop pressing down on the plunger till the sting subsides, then start again - definitely helps. As does icing the injection site prior to injection, and leaving the syringe out of the fridge for 30-45 minutes prior to injecting. These tips (and more) are on lots of other threads, but I wanted to pass them along in case anyone hasn't seen them.

kate

[TheOne1313]

Im starting Humira as soon as the paperwork is all taken care of. I have heard alota good things about it. Hopefully this will go alot better then Raptiva cause that was/is a nightmare......developed arthritis (even in the jaw) and now that i stopped it, the p is back worse then ever.

I was curious, I thought the shot was only once every two weeks........does it wear off for most ppl are one week and if so........why dont they make everyone just take it once a week like enbriel and raptiva?

[evanscyoc]

Well, I saw in the little prescribtion info paper that came with it that headaches were a common side affect. Nothing terrible, I mean, I've had caffiene headaches worse than that, but enough that it woke me up a few times last night. Then this morning, poof, it was gone. Strange.

The other nice thing was no real site reaction. I have one red spot the size of a freckle and that's it. I did go slow injecting it like I had read on here to do and that certainly helps with the sting.

Good luck with the paper work. Luckly, my insurance didn't take too long to pre-approve. I just had to have a TB test and liver ultrasound.

[patti2957]

Now I won't have to look on all those other threads! I appreciate the advice and hope the headaches don't continue to be a problem for you. I wonder why the liver ultrasound? They did a chest x-ray, TB test and bloodwork, but that's it. Have your enzymes ever been high?
I've also read about people using Humira more than once every two weeks; I wonder if that's the insurance company's call, since the expense seems to be the biggest obstacle...
patti

[ouchyk]

Erik, Patti and One,

Good luck with Humira.

As far as the every week dosing, I think its your doctors call and then of course the insurance co :rolleyes: .

Thankfully, I haven't had any headaches or site injection reactions.

Hang in there,
Karen

[evanscyoc]

Okay, its only been about 48 hours, but I already feel SO MUCH BETTER. I have half the pain I did over the weekend. I know it works for some better than others, well, I think I definitely fall into the "some" category.

As for the liver ultrasound, my doc wanted to make sure I didn't have any "fatty deposits" or something like that. I don't remember all her reasons. I did have the TB test, bloodwork across the board and chest x-rays, too. It was all worth it. I hope to God that everyone else can benefit from this or another drug like it.

[TheOne1313]

Okay, its only been about 48 hours, but I already feel SO MUCH BETTER. I have half the pain I did over the weekend. I know it works for some better than others, well, I think I definitely fall into the "some" category.

As for the liver ultrasound, my doc wanted to make sure I didn't have any "fatty deposits" or something like that. I don't remember all her reasons. I did have the TB test, bloodwork across the board and chest x-rays, too. It was all worth it. I hope to God that everyone else can benefit from this or another drug like it.

Im glad to hear everything went well and that the pain is going away. I think i'll be starting mine in a couple of weeks.....i hope im in that same category as you are and that the pain goes away.

[nuttydenise]

I will be starting Humira also. Waiting for the paper work. Don't like the co-pay but I need to do something fast. I was on Enbrel but could not afford it.
Sure hope this one works for all of us!

[evanscyoc]

My co-pay is $35, but I also got a gift card from Humira for $300 towards co-pays. That'll cover the first six months! I think my Rheumy got a bunch of them (probably instead of samples like most drugs), and gave me one. Can't beat that. Hope your paperwork goes through fast.

[SandraJean]

Good luck on the Humira. I've been in a clincial trail study for it since November 2003 and have had alot of luck with it. My study will end as of March 2006 and I will be trying to get it thru my insurance company. Hope it goes thru okay.

Sandy

[evanscyoc]

Sandy,
What did you have in terms of side affects? I'm still so early on in the process I don't know if I'll get sick more often or anything like that yet, but would like to hear how it worked for you. Also, if you had any diminished effects after being on it for so long.

[SandraJean]

Hi,

The only problem I had with Humira in the beginning was a few sinus infections. I was put on antibiotics right away and they cleared up. I think I might have had celluitis one time too, but was not related to the Humira.

Other than that, I've had no changes in my health conditions as a result of using Humira. When I started the study I had over 98 joints affected by pa and now I only have 36 joints affected. I hadn't gotten any new outbreaks of psoriasis until this past September, and then only a few spots. Overall, my experiences with Humira have been very positive.

Hope yours are too

Sandy

[Kimbercat]

Good luck on the Humira. I've been in a clincial trail study for it since November 2003 and have had alot of luck with it. My study will end as of March 2006 and I will be trying to get it thru my insurance company. Hope it goes thru okay.
Sandy,

Just something I heard through the grapevine from my study clinic (I'm in the same study for Humira as you are.) He fully expects the studies to be extended further than the original 2 years they started out to do. His information is that Humira won't even be submitted to the FDA for approval for p before spring of next year, so they will of course want more long term data on how patients have responded after being on the drug for a while. He said it would only make sense that they would follow up with those already in clinical trials. That news really made my day!! It's nice to know we probably won't have to deal with the insurance issue on it for a while.:) :)

[patti2957]

I'm glad for those of you in clinical studies and with gift cards! I hadn't thought about copay but since mine went up across the board last fall it'll probably be a doozy.
Erik - did you have a problem with fatigue, and if so, have you noticed a difference there? My rheum said it was the best for dealing with that and it's my worst enemy, so I'm hoping for good results with pain and energy.
patti



Sandy,
What did you have in terms of side affects? I'm still so early on in the process I don't know if I'll get sick more often or anything like that yet, but would like to hear how it worked for you. Also, if you had any diminished effects after being on it for so long.

[evanscyoc]

Yes, I was tired all the time and never wanted to even get up off the couch. I lived there as soon as I got home from work, and pretty much the whole weekend. I've definitely had more energy, but that may just be a side effect of being ABLE to do things. :) I'm supposed to help a friend put down wood laminate flooring this weekend if that tells you anything.

[tmartha]

Hooray, hooray, I'm so glad for you Erik! And Sandy, Kate, Kimbercat, too. Hope is out there...it's so uplifting to log on here and see some good news...

Please keep us posted -
Tani

[evanscyoc]

I did get one potential side affect today that's a little weird. My ab muscle under where I did the injection feels a little like I did a bunch of situps yesterday, but only that like 4" diameter area. Very strange. Especially since its been 4 days since my injection. Anyone ever have that before?

[SandraJean]

Hi Kim,

That sounds like very good news, about extending the trial study. They haven't mentioned it to me here yet, but just say they have to check out my insuranse. I'll mention something to them when I call again.

Thanks,

Sandy

[evanscyoc]

So is this trial study for the psoriasis portion only or for PA as well? Just curious since it was already approved for PA

[SandraJean]

Hi,

this trial study was for both p and pa, although I was able to participate in it though my rheumatologist.

When I first started the trial, it was in November of 2003 and it had not been approved for pa. It had been approved for RA.

Hope this helps,

Sandy

[Kimbercat]

So is this trial study for the psoriasis portion only or for PA as well? Just curious since it was already approved for PA
I couldn't tell you for sure about the pa portion of the study, since I'm on the p study. My guess is that they will want to follow pa patients for some time as well, since they will want long term data for those patients too. If I find out anything, I'll be sure to post it.

[evanscyoc]

Well, its been about 10 days since my shot and I'm still doing well except for this terrible cold I'm getting. I guess cold season might not have been the best time to start Humira, but oh well.

[TheOne1313]

I know its only been 10 days but have you seen any improvements in your p yet?

I should be starting Humira in about a week or two..........im still feeling the effects of a major flare up from the Raptiva........im so dry i can move without hurting and im hoping the Humira helps quickly cause im gonna go insane if it doesnt get better now

[evanscyoc]

I've seen drastic improvement with the PA, but so far none with the P.... I'm still having to use steroid creams. I'm off the prednisone now, though, so maybe once my body gets used to not having that it my system, the Humira can do more. We'll see.
*cough* *sneeze*

[TheOne1313]

Is it safe to use creams and ointments with Humira?

While I was on Raptiva the doctor didnt want me on any creams or ointment.

I hope my doctor still prescribes an ointment for me until the Humira kicks in because my skin is so dry now. I thought I had p pretty bad beforehand, but now after going off Raptiva, its just outta control. Im just amazed at how much its spread.

Oh well hopefully the Humira will kick in really fast for us :)

[evanscyoc]

I use a cortisteriod cream called Beta-Val and my doctor didn't have any problem with me still using it. However, still ask your doctor before you do because not all situations are the same. My P is very minor

[MikeK]

Is it safe to use creams and ointments with Humira?I just came from Humira's website (www.humira.com). I didn't see anything that said that you can't use it in combination with creams and/or ointments. Why don't you doctor and your pharmacist and Abbot labs (the people who make Humira) if it's safe to use Humira with prescription and/or over the counter psoriasis creams and/or ointments. I think that this is the number that you need to call: Medical Inquiries
(800) 633-9110 8:15 am - 4:55 pm CST. (Source: http://abbott.com/uscontactinfo.cfm)


While I was on Raptiva the doctor didnt want me on any creams or ointment.This is the first time that someone has mentioned that their doctor didn't want them to use creams and ointments with a biologic medication. It's possible that your doctor may be very conservative and wouldn't give you any other meds in order to limit potential side effects. It's also possible that you can't use other meds when you are on Raptiva. Did he ever explain why he wouldn't prescribe other meds.

I hope my doctor still prescribes an ointment for me until the Humira kicks in because my skin is so dry now. I thought I had p pretty bad beforehand, but now after going off Raptiva, its just outta control. Im just amazed at how much its spread.Please call your doctor and tell him or her what you've told us. Ask him to call in a prescription. Try not to take no for an answer and ask for an explanation if he won't relent. (If he does refuse that you may have to rely on over the counter meds such as MG217 (www.mg217.com) and a really good moisturizer such as Aquaphore: http://www.eucerinus.com/products/hb_aho.html. Unfortunately, Humira is notorious for causing people to get worse when they stop taking it for any reason.

Oh well hopefully the Humira will kick in really fast for us :)I hope that it turns out to be your wonder drug.

Feel better!

Mike

[TheOne1313]

So humira is just like any other biologic in that once you stop taking it, you get worse?

[MikeK]

So humira is just like any other biologic in that once you stop taking it, you get worse?It's possible to get worse after stopping any medication. Raptiva is the only drug that's notorious for causing people to get worse. (Sigh.) :(

Mike

[evanscyoc]

Well, here's hoping I don't have to stop taking Humira for any length of time. I just can't wait till Monday when I can do another injection. This one is wearing off more and more each day. I'm almost back to my full-on limp

[TheOne1313]

See thats what i dont get....if the humira wears off like that, why dont they have it to where its once a week just like the other ones? I know some people do it once a week, im just curious as to why everyone doesnt?

[SandraJean]

Hi,

I hope your cold will get better soon. Keep an eye on it that you don't go into broncitis as with the Humira, you'll need to get on an antibiotic quickly. While I've been on Humira, I usually always call the Doctor just to be on the safe side so it doesn't get ahead of me.

As far as taking Humira every week or even every 10 days, I understand some people actually do that if it is needed sooner. I guess it just depends on the individual and how the Humira works on them.

Take care all,

Sandy

[TheOne1313]

Sandy

How long have you been on Humira? How is it working? How long did it take to start working?

Oh lord.......u people are gonna kill me with all the questions i have lol.

[SandraJean]

Hi,

I have been in a clincial trial study for Humira since November 2003. It has helped me alot. When I first started the study, they actually do a joint count on you and find out how many joints are affected by pa and I tested out to at least 98 joints. Now I'm down to 36 that are still affected. As for the psoriasis, I have only gotten just a few small spots during the whole time I've been on Humira. I was limited to the amounts of plaques I had when I started and some went away, while others I had a longer time being stubborn.

Hope this helps,

Sandy

[KATHY P]

HI, I WAS ON HUMIRA INJECTIONS WEEKLY FOR THE PAST 1 1/2 YEARS. AS FAR AS I AM CONCERNED IT IS A MIRACLE DRUG FOR MY RA. I TRIED ENBREL PREVIOUSLY FOR THREE MONTHS, BUT IT GAVE ME BAD HEADACHES.
I ALWAYS GET AN INJECTION SITE REACTION, BUT IT GOES AWAY IN TWO DAYS. IT IS VERY COMICAL AT OUR HOUSE ON INJECTION DAY, I PUT THE NEEDLE IN MY LEG, BUT BECAUSE IT STINGS ME SO MUCH IT HURTS I HAVE A HARD TIME DOING IT. SO MY HUSBAND, WHO CANT STAND NEEDLES, PUSHES THE PLUNGER FOR ME. WE ARE QUITE THE TEAM.
GOOD LUCK TO YOU! IT IS A MIRACLE DRUG.

[TheOne1313]

I see Humira helps big time for PA or RA but what about P........anyone see great sucess with Humira?

[evanscyoc]

I'm hoping my cold goes away soon. I'm going to my parent's house for dinner on Sunday (dad is a family doc) and I think he's going to tell me if I need antibiotics or if its just something I have to let my body deal with. So far, its not too bad in the lungs.
As for the Humira wearing off, I need to clarify. Its not anywhere NEAR as bad as before the Humira. I couldn't do anything. And when I say its wearing off now, I mean after any length walk, my feet just get really tired. A walk to the bathroom feels like I just walked a mile. Not the same type of pain, but bad enough. Oh well, only three more days till I can shoot myself again. :)

[TheOne1313]

Hmm it seems like the Humira works very quickly on the arthritis part and not so quickly dealin with p.

My arthritis is gone :).....i guess a couple weeks off Raptiva was all I needed, however the p is real bad.......I should start humira tomorrow so we'll see how it goes.

[patti2957]

Erik:
Is it time for your next dose? I'll be interested to see how long it takes you to notice any significant benefits.... I'm due on Friday and didn't have any reaction at all to the first; I am weaning off prednisone, though, down to 13 mg. so I can definitely feel the arthritis. Keep us posted!
patti

[TheOne1313]

have u noticed any differences with p........or are u just taking it for the arthritis?

[patti2957]

I'm using it for PA only; my P is limited so I'm hoping it will take care of what the mtx hasn't, the arthritis and fatigue. I'm still on prednisone (13 mg) and tapering off and didn't notice any benefit at all from my first injection; I'm due for #2 on Friday and hope it starts to work!
patti

[TheOne1313]

It should work really well.........i know people react differently to different meds but it just seems like EVERYONE here thats on Humira has had sucess in helping arthritis.

Keep us updated on how it works :)

[crimekate]

A little late, but I wanted to weigh in on a couple of the issues:

For those who feel it "wearing off" - yes, that is exactly what happened to me. I found it DEFINITELY helped with the fatigue - it allowed me to get my prednisone down to 20 mg daily (from 35). The problem arose on the "in-between shot" days - I was fine while the Humira was working (for me this was about 8-9 days after the shot), but in the 5-6 days when it was wearing off, I was so weak and fatigued I couldn't manage to get through a day. I actually fell asleep on the bus coming home from work twice - then I called the doc and told him: We can either increase the Humira frequency, or I'm going to have to up the prednisone. It seems like more and more people have a similar experience, I wonder if the start dose isn't too conservative for most people. My regular doc (internist) thought it very odd that the dosing was not tied to size/body weight. Perhaps 40 mg/once a week is fine for a smaller person, but I'm 6 ft tall and weigh 155 lbs. I don't know how metabolism works with the biologics, but maybe some people just use it up faster than others.

Luckily, I have great insurance (Blue Cross "Personal Choice" plan) - they've never given me any trouble whatsoever - and since it's an injection, it's not part of my prescription plan, but the major medical - so no co-pay.

Of course, I worry about what happens after a year or so"- I've heard that insurance companies declare the biologics "investigational" after that point. I'm almost afraid to ask about it - I don't want to give them any ideas.

[evanscyoc]

In fact, I did do my second shot yesterday. It was a little harder this time (by myself) and had one problem where the syringe almost slipped out of my hands while the needle was already in me. That was a little uncomfortable, but other than that, I can't complain. As for how its working, I noticed almost 90% improvement two days after the first shot. And while it did wear off a bit the second week, nothing I couldn't handle, at least, since I wasn't doing anything too strenuous.

The P hasn't improved at all, but I attribute that to quitting the prednisone. I was only on 5 mg anyway, but I don't think the Humira was able to do too much for in in this short amount of time while my body was dealing with fewer steroids in my system. Hoping that the P clears up sooner rather than later. I want to start dating again in the worst way.

So has anyone else had that quick of results for their PA? Just curious or if I was just lucky. Patti, I hope you start to feel the benefits soon. Again, maybe I was just lucky with how fast it helped.

[crimekate]

For me it was really fast - I felt noticeably better within three days after my first shot. I can't comment on the P, I haven't had any significant P for about 7 years, just the PA. I hope it clears it for you - it really is a wonder drug for so many people.

[patti2957]

Are you on mtx? I'm wondering if a lot of my fatigue is coming from the 12.5 mg I take every week. And, the fact taht I'm down on prednisone as well. My P isn't noticeable but the first Humira shot didn't change the stiffness and soreness in my joints at all or reduce the swelling of one of my toes. Maybe after this Friday?

Since Humira has been officially approved for PA it doesn't seem like the insurance companies can mess with it, but I'm with you, Kate, I'm afraid to find out!
patti

[TheOne1313]

My first shot of Humira is today. I dont have PA, so im hoping it clears the p up really fast.

[MikeK]

My first shot of Humira is today. I dont have PA, so im hoping it clears the p up really fast.Good luck with it. I hope and pray that it turns out to be your wonder drug.

Mike

[TheOne1313]

Thanks........im hoping and praying as well.

After the past few weeks ive been through.......if Humira just gets it back to where it used to be before Raptiva, I will be happy lol.

[evanscyoc]

Patti,
No, I've never been on MTX. As for fatigue, I really don't have any, in fact, I feel like I have more energy just because I'm able to do things now. That, or I was so lacking in energy before Humira that having normal energy now just feels like a lot. Either way, I hope you start feeling relief soon. Let me know how you're doing on Humira. Does your Doc have plans to take you off MTX anytime soon?

[evanscyoc]

So, I saw Miss Kitty's post too, but is this fire those with PA month? I lost my job on Friday as well due to "Budget cuts". Let me tell you... nothing quite brings on a flare like losing your job. Uff. Luckly, I keep my insurance through May so I have until then to find a new job. Just lucky I started Humira a few weeks ago or I'd be hobbling into my interviews.

Well, back to the job hunt.

[MikeK]

Yikes, Erik! I'm sorry to hear that you lost your job. :(

Good luck with your search for a new job. I hope and pray that something turns up soon.

Mike

[patti2957]

I'm so sorry you lost your job - what kind of work do you do? Do you have any immediate prospects?
It might be my imagination or wishful thinking but I believe I feel a bit better after my second injection (this past Friday). I noticed over the weekend that I didn't feel so sluggish and felt a bit 'brighter' (not as in smart, unfortunately:) overall. After church I ran some errands, though, and my feet still paid for it.
My rheum said we might back off the mtx once the Humira kicks in and I'm weaned off this dang prednisone (which I love, except for the weight gain!).
I hope that you have luck finding the right job for you - please keep us posted!!
blessings,
patti

[evanscyoc]

Well, my nail on my big toe finally lost the battle last night. That was fun. There's nothing like seeing your big toe nail turned 180 degrees pointing back at you to make you love this disease. Anyway, it didn't hurt, and I'm glad its gone now, but there is hardly ANYTHING underneath. The existing nail is less than a centimeter long and very sensitive. I imagine I'll have to keep a bandaid on it for a while till it toughens up. I just hope it doesn't get infected.

[hjl1969]

I have given many injections in my horse training business, yet there is something so strange about giving yourself one. Ya, it stings. I need to plunge faster next time. After I finished to shot, I felt woosey and emotionally overwhelmed! Hopefully the second time be less of an event. I hope the secong injection brings some relief.

Heather

[patti2957]

Heather:
What kind of horses do you train? I used to ride; when I first got sick I'd take a round of steroids before a show but that didn't work long term, obviously:) I agree about it not being easy to self-inject! It was easier my second time but still stung like crazy. Left a bruise too...
The good news is, I'm already seeing benefit, not needing quite as much sleep and feeling a lot less stiff and sore. Hope it does the same for you.
Any job leads Erik??

patti

[evanscyoc]

No, no job leads yet, but its only been one week. I have been applying, though. Just need a call back. I did, however, JUST do my third injection. And boy did I need it. This one seemed to wear off quite fast. Although, I was more active in the last two weeks than usual. I'm finding that Humira is kinda like filling your gas tank on your car. It will help just so much, but once you hit 'E' you're just kinda done till you fill up again. I say this because weeks where I do very little between shots, I seem to do great and make it almost all the way to the next shot. These last two weeks I was helping a friend fix up a house to sell which included some very physical stuff, and I was in a lot of pain by this past tuesday. Well, either way, this shot should kick in tomorrow. Hope you're all well

[patti2957]

I know what you mean about the Humira and going the distance. I've only had 2, due for my third one this Friday and I'm 'flaring' a bit, a new knuckle, knees, wrists. And, I had that bulletproof kick initially too, so I've been a whole lot more active. Until yesterday that is:)
Is it supposed to stabilize with time? Or is it like Enbrel, where people adjust their dosage/frequency, etc.?
patti

p.s. best of luck on getting a call back!

[Ihurt]

Just 20 mins ago I did m first Humira shot. It sure does sting, but I went slowly. I've been in a flare now for three days but after reading all you guys have written I am hopeful. Will keep you posted. Something has to work. I love being an active person-living like an invalid is not my idea of living at all.

Elaine (Ihurt)

[evanscyoc]

Hey everyone, sorry I've been off the boards for so long. I ended up being out of work for 7 weeks, but luckly I had my insurance long enough to find another job with insurance that would pay for it, too (unless they give me a hard time later, we'll see) Anyway, I ended up getting a contracting gig for 5 months so at least even if its temporary, it keeps up my Humira fix.

I'm still doing well on Humira, at least a lot better than when I wasn't on it. It still starts to wear off during most of the second weeks. And the P portion hasn't cleared up one little bit, but I'll take what I can get.

[californiahiker]

I'm new to the board, been reading through here, and so much appreciate everybody sharing their experiences! I will be on either Humira or Enbrel shortly, and its really nice to read other people have been there, done that!

[evanscyoc]

So, I had bloodwork done last week after being on Humira for about two and a half months. Not sure on the details, but some liver function was about 3 times "normal" so I wasn't issued a refill. Instead, she wants me to take Prednisone again this week, get another blood test on Thursday and maybe see if the liver starts behaving again. Grrrr. I can't imagine not taking Humira after having it help so much.