Humira Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Hi hope to start on Humira soon. My liver is still all over the place so got to wait. It went to 600 and is now coming down to 120. Got a blood test on Thursday and an appointment on 13 March so hopefully will be on Humira very soon. I dont like not being on no medication when I have active disease.

Alison
 
Doug, the extra pen is nice. They must not have single dose packaging. My surgery's were in 2008. I had three in one year. Yikes!

Kathy
 
An update on my Humira experience, since starting it in early December:

- Started working about a week after the loading dose. Symptoms much improved after 2 weeks. Currently experiencing only a few Crohn's symptoms (some pain in lower left quadrant due to narrowing and scarring, which will always be there unless I get surgery - also gas, bloating and acid occasionally, but only when I misbehave and eat what I shouldn't). Appetite MUCH improved - gaining weight!

- The injections still do not hurt, apart from a minor pinch and slight tenderness for a day or so (that is, only if I touch the area, otherwise it doesn't hurt at all). I let the pen warm up for a half hour to an hour, swab a spot on my belly, then inject by quickly pinching up a bit of flesh/fat. Takes 10 seconds. Only "problem" I experience is sometimes there is a drop of blood at the injection site - I imagine this is because the needle hit a vein. Gross, but I have a cotton ball at hand and apply pressure to the site for a minute.

- My schedule is supposed to be to inject 1 pen every 14 days but sometimes I inject every 15-17 days without any problems. My doctor said that this is fine.

All in all, I'm happy with how well Humira's been working - may it continue to do so!
 
Had my second set of induction shots this morning. The nurse did one and I did the other. The one I did hurt even less and was a piece of cake! I hope they are all that easy :)
 
jonique said:
Had my second set of induction shots this morning. The nurse did one and I did the other. The one I did hurt even less and was a piece of cake! I hope they are all that easy :)
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I spoke to some Abbott reps at a trade show. They said they are working on a new gauge needle and a totally new pen. No eta but they did mention perfecting it, then getting FDA approval. We should start seeing a new name on our boxes "Abbvie" a Abbott spinoff.
 
Update

My spotty rash is going and has stopped itching, thank God!
I'm gonna take an anti histamine before I inject and for 2 days after or even just take one every day, cos I usually do in the Summer anyway! And it's on it's way. Allegedly!
And the nurse said I can bring my shot forward to this Friday, no problemo!
So, it's all good, so far xxx
 
Astra said:
Update

My spotty rash is going and has stopped itching, thank God!
I'm gonna take an anti histamine before I inject and for 2 days after or even just take one every day, cos I usually do in the Summer anyway! And it's on it's way. Allegedly!
And the nurse said I can bring my shot forward to this Friday, no problemo!
So, it's all good, so far xxx
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Might want to try hibiclense it's available at cvs and worked wonders on my rash.
 
Hi,

I am to start on Humira this week. The hospital ordered it last Friday and said it should be here by Wednesday (today) but we had a major snow storm and everything's closed. Good information here, I've been reading all morning.
 
Some information I've found on Humira:

The company which makes Humira has a site devoted to patients who are prescribed to use this medication. It's called My Humira. When you sign up for it you will be asked a few questions one of which is if you are now taking it. If you answer "Yes" you will be offered some free services and support kits.

A training kit for the auto pens which includes a talking pen simulator.
A "To Go Kit" which includes a small cooler and reusable ice packs.
A Sharps return kit (includes free shipping on the return sharps).

All of these kits are free. The address is: http://www.humira.com/myhumira/default.aspx

Thought this might be useful to many.

I'm hoping my prescription arrives today...It's been a long journey.
 
I started my injections last week.

I had a humira nurse walk me through the first one. It
did burn but, if I can do four two should be a breeze!
No side affects that I can tell other than fatigue at the
end of the day.

Lauren
 
tots said:
I started my injections last week.

I had a humira nurse walk me through the first one. It
did burn but, if I can do four two should be a breeze!
No side affects that I can tell other than fatigue at the
end of the day.

Lauren
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You will have fatigue for at least a month, when you inject. Time will be your friend.
 
I loved the simulator pen. It gets you used to the loud click so you don't jump and pull the needle out.

After being on Humira for four years I still have fatigue and muscle weakness.
I take B-12, the one you put under your tongue for faster absorption. And some other supplements for energy. I am also low on iron so I take an iron supplement. Vitamin Shoppe has one called gentle iron that does not cause constipation. Some days I have more zip than others.


Kathy
 
kate269 said:
I loved the simulator pen. It gets you used to the loud click so you don't jump and pull the needle out.

After being on Humira for four years I still have fatigue and muscle weakness.
I take B-12, the one you put under your tongue for faster absorption. And some other supplements for energy. I am also low on iron so I take an iron supplement. Vitamin Shoppe has one called gentle iron that does not cause constipation. Some days I have more zip than others.


Kathy
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Hi Kathy, which iron supplement to do you use? I need to find a gentle one too.
 
I use a Solgar brand called Gentle Iron. It is 25 MG of Iron Bisglycinate.
Non-Constipating. Gluten, wheat and dairy free. You take one capsule a day with a meal. I got mine at the Vitamin Shoppe. If you don't have one in your town they have a web site.

Kathy
 
Well, got my first loading dose (4 shots) of Humira this morning. I must be lucky. They didn't feel any different than a flu shot.:) All 4 were in the stomach. The nurse gave me the first 2 and I did the second 2. They had me sit there for an hour to make sure I had no allergic reaction then I was on my way.

I didn't see the doc today (he wasn't in) but he had told me earlier that I should begin to see results in a few days. I'm keeping my fingers crossed!:cool:
 
Has anyone had chronic headaches associated with humira? I've seen a neurologist and had a large battery of tests done, blood, spinal tap, MRI, ct scan. Nothing wrong neurological. So they want to perscribe another drug for headaches. since I'm suffering from headaches, and fatigue I argued with 2 M.D's already. The new drug causes fatigue as well, so frustrating. Ideas anyone?
 
Hello all...while I am new to this group, I am what one may consider a veteran when it comes to Humira. I have taken it off and on for approximately 4 years now I think --please feel free to correct me if I have my dates mixed up-- I have been on enbrel, simponi, and cimzia as well and can't remember exactly when I was on those either...lol

Humira has been great, but I have no choice but switch to another biologic. Currently my body is not responding to the Humira at all and so I am in a constant flare. But I will see a new GI dr on the 14th that will hopefully be better than the last one.

Mr. Scary, I do have chronic migraines, and was told they were hormone related. I'm not sure if they are related to Humira or not...but I would not be surprised by it. I currently take topamax to prevent headaches, and zomig when one hits.

I have read where others have been prescribed way higher doses of humira than myself, and I am curious what the maximum is? I take one 40mg/0.8 ml syringe per week.

Also, I had nothing but trouble with the autoinjector pens. They are a waste of money. The syringes are SO MUCH easier since YOU control how fast it injects...which is what hurts the most anyway! If you're able to stop to let the medicine absorb a little, then keep going until it's complete, it makes it almost painless. I also let the syringe sit out until it's completely room temperature. And always inject in the tummy, and a completely different area each time.

Any suggestions or ideas? I have been fighting this for 8 years now, with the last year and a half being shockingly ill. My rheumatologist had been treating my symptoms for the first 5 years as erythema nodosum, fibromyalgia and arthritis. Then the crohns symptoms began..
 
I've been having some trouble with nasty headaches, arguably migrane level, although they also seem to be sinus-related. I'm not 100% sure they started post-humira, though, since I had some really bad headaches when I was on Remicade, too. Those seemed to be more obviously related to dehydration, though.

If I catch it quickly enough, I can sortof keep it in check with tylenol and sudafed, but hot drinks have been the most helpful, both inhaling the steam and keeping the hot liquid in my mouth to sortof warm things from underneath. There does seem to be a point of no return, though, and if it gets there I'll be out of commission for hours.

Is this like the humira headaches others are getting? It sucks, but for me, I think I'll gamble with that, rather than gamble with flaring again.
 
Sjhale, good luck with your next gi visit. It's great to hear you have been on humira for four years. I take 40 ml every fortnight with imuran.

I only get aches in all my facial bones a couple of days before my next *** is due.
 
Well, it's now the next day after my first loading dose of Humira. I haven't had the need for pain medication yet. Stools are still soft but no longer watery. I feel like I haven't in a year. Sure hope this continues. :emot-dance:
 
Mike2871 said:
Well, it's now the next day after my first loading dose of Humira. I haven't had the need for pain medication yet. Stools are still soft but no longer watery. I feel like I haven't in a year. Sure hope this continues. :emot-dance:
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Grats, but look out for fatigue.
 
Hi, I'm brand new here. I'm in TN and am 53. I have Crohns (found out April 2012)..I was on Entocort until a few weeks ago when I was back in hospital with blockage and infection from swelling. 3rd time in 8 months.
Am on Pred/Cipro/Flagyl as of now and the plan is to start Humira in a few weeks pending insurance approval and needed tests.

I so hope to find and give support here! Am a bit scared of the Humira but I have to try something to stay out of the hospital.

So hello to all and I hope to make wonderful friends here!!!

Hugs, Rach
 
Rach-

Welcome! Wish the circumstances where differant. If you pass the tb test which you should there is a few things to remember. Humira is a powerful fully humanized protein. Along with the fact that its a immunosupreesant please plan on a few things.
1. When you take the loading doses (4 shots) you may feel tired. Even on the maintence doses.
2. Stay away from people who are sick.
3. Listen to the nurses when they train you on self injection.
4. If insurance denies you and you can show hard ship financially, you'll still get humira on the patient protection plan. Myhumira.com
5. We are here to support ya. Don't worry about the bruises or pain from injections, I think it's a small price to pay- ask yourself what's better. Crohns flare or a minor pain from injection and bruises.
 
Today is day two. Only one incident. My wife and I went out for breakfast. I had a ham & cheese omelet. About forty five minutes later we were shopping in one of those large department stores and I had a series of cramps that doubled me over. People were staring. It felt like gas cramps X100 and lasted about an hour. At the end I had to literally run for the rest room and sit there a while. I've been feeling great ever since.
 
Hi RachE,

Sorry to hear you've been going through all that. Just remember things do get better.

I'm new to Humira. Had my first loading dose two days ago. I did'nt experience any adverse effects. Just felt like four flu shots in my stomach. In some ways I felt relief almost immediately, in others it's taking a little longer.
 
Scaryman said:
Has anyone had chronic headaches associated with humira? I've seen a neurologist and had a large battery of tests done, blood, spinal tap, MRI, ct scan. Nothing wrong neurological. So they want to perscribe another drug for headaches. since I'm suffering from headaches, and fatigue I argued with 2 M.D's already. The new drug causes fatigue as well, so frustrating. Ideas anyone?
Click to expand...

So far no headaches for me.
 
Hi everyone...I was wondering if any of you have joint pain? I have been on Humira for 2 years now and just this week have had joint pain. Especially when it rains out!! Maybe its Crohns too...?
 
No it's humira, joint pain and muscle pain. It could be crohns but the question is. Has humira kept you flare free? Any crohns complications recently?
 
Mike2871 said:
...I had a series of cramps that doubled me over...QUOTE]

RE: Mike2871

Sorry to hear that, happens at the worst times. It's interesting becasue now i know where every single bathroom is when i leave the house; i guess we all do that now. Good luck, keep it up.
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Humira - SCD Diet update

Humira has finally helped me (it took 5 months and a few double doses- 80mg at once) and have been doing the SCD diet (no starch, no sugar) and it seems to be holding. The drugs were not working until the diet had time to do its work - the 24hour homemade yogurt seems to be key as well.

The theory is that becasue there is too much "bad" bacteria in the intestinal tract one needs to keep up the "good" bacteria as well as limiting the foods we don't digest completely. Again it took at least 3 months to on track (i believe the book say try it for 1 month...)

I hasitate to use the work 'remission' because i'm still very precarious, but it has been about 2 months that i have only 2 movements a day and there is almost no more blood.

*I took my daughter to storytime this morning, and did not need to go to the bathroom at all, crazy!

good luck all, keep fighting.
 
Mary:) said:
Hi everyone...I was wondering if any of you have joint pain? I have been on Humira for 2 years now and just this week have had joint pain. Especially when it rains out!! Maybe its Crohns too...?
Click to expand...

My joint flares/pain/fibromyalgia were the first noticed Crohns symptoms I had for 5-6 years before my diagnosis.
 
Hello all
I was just told by my Doctor that humira is the next thing I will be going on, just had a really bad reaction to remicade, so bad I ended up in the emerg dept of my local hospital, I was wondering if anyone on humira suffers from fistulas and is the humira is helping in anyway, a friend I have is on it and its not helping with hers, any info would be greatly appreciated. Thank you.
 
Scaryman said:
No it's humira, joint pain and muscle pain. It could be crohns but the question is. Has humira kept you flare free? Any crohns complications recently?
Click to expand...

No complications ...recent scope showed some inflammation. Never had joint pain before.
 
Mama & Mac said:
Hello all
I was just told by my Doctor that humira is the next thing I will be going on, just had a really bad reaction to remicade, so bad I ended up in the emerg dept of my local hospital, I was wondering if anyone on humira suffers from fistulas and is the humira is helping in anyway, a friend I have is on it and its not helping with hers, any info would be greatly appreciated. Thank you.
Click to expand...

Mine helped my fistula :)
 
Mama & Mac said:
Hello all
I was just told by my Doctor that humira is the next thing I will be going on, just had a really bad reaction to remicade, so bad I ended up in the emerg dept of my local hospital, I was wondering if anyone on humira suffers from fistulas and is the humira is helping in anyway, a friend I have is on it and its not helping with hers, any info would be greatly appreciated. Thank you.
Click to expand...

Hi Mama & Mac!

When I was first diagnosed, they strated me on Humia (I also had a fistula going from my colon to my bladder). It help take some of the pressure off of my bladder, but for me it did not heal my fistula. It did help slow down the fistula for further damaging my bladder. I actually just had to have surgery to remvoe it and in my case, I think that was the best way to go becasue they also resectioned my colon at the same time. I still take Humira though so I can keep all of my symptoms under control.

Hope that helps!
 
I take my next shots in the morning.

I did four on my own, I know I can do this too!

Today was a rough day, still feel pretty gross.

This is only the second bad day in two weeks. That's pretty good for me!


Lauren
 
Hello all I'm new and on humira. And in reply to your question about joint pain I personally haven't had joint pain, but keep in mind that the inflammation caused by Crohn's effects your whole body ask your GI. Or go to a pain management specialist I have vicodin for all of my painfilled day's. So hello all and God bless. Oops I'm not on the thread I was reading but bless you all anyways
 
Last edited:
I also have have day on Friday. I usually *** in the evening but last Friday I did the *** at mid morning. Got a good reminder why I went to evening jabs. I slept most of the day.
 
I will talk with my Mgr again. If I am the only one she can count
on I think I need 10% of everyone else's pay! That might be the
Incentive they need to learn their jobs!

Seriously though I need to start getting this under control. It's been
a problem way to long.

Thanks for the suggestions


Lauren
 
I just did my first injection by myself at home. It didn't hurt at all. Last time when I had the two injections with the IBD nurse, hers hurt and mine didn't. It stings a bit after but that is the medicine being absorbed. I do not ice it but i do keep squeezing the skin while i am injecting and I have also been squeezing my eyes shut and counting to 10. I believe I was holding my breath too. Not sure if the squeezing and eyes shut is helping but i'm going to keep doing it! :)

I'm hoping this two weeks will be better than the last two. The last two started with a vertigo and vomiting attack, then i passed a kidney stone, then I had horrible nausea for the rest of the week and finally ended it off with a head cold! My sinuses are still congested but the fever is gone so I hope that i am on the mend.

Here's to a good first "one pen" fortnight! The sun is shining today in Vancouver so that is a good sign.

have a good day all.
 
Mary:) said:
Hi everyone...I was wondering if any of you have joint pain? I have been on Humira for 2 years now and just this week have had joint pain. Especially when it rains out!! Maybe its Crohns too...?
Click to expand...

Hello Mary, I have joint and muscle pain for years. I know it's the Crohns, the Humira has helped my Crohns ( every other week with a dose of prednisone) I am now on Tramadol for the pain daily!!! There are times when I can hardly get up stairs..... It definitely SUCKS!!!!!
 
Just waiting on my Humira application to be approved by Medicare, it's been 2 weeks now so should be hearing from my IBD nurse soon... I don't know if this sounds crazy or not, but I'm so pumped to be starting Humira! No, I don't have a needle fetish.

I'm just tired of having to constantly be on Prednisone courses as Imuran alone hasn't responded well enough, the same as Mesalamine before that.. Pred is the only thing that's put me in any kind of remission but the side effects are awful. I'm really hoping to get some stability with Humira and wishing that I can be one of the lucky ones.

BTW Mary for about 6 months before I was diagnosed I had horrible joint pain that I know now was from the inflammation, I would have to take painkillers 3-5 times a day and would wake up as stiff as a board and in so much pain. Luckily it improved when I was first put on Pred and it hasn't returned - fingers crossed it doesn't come back as a side effect.
 
Izzy my Medicare script is being processed will know a date of delivery tomorrow. I had my doctors nurse put Urgent on the script and they said it would be processed and sent out within 24-72 hours. I also called my prescription part D provider and they gave me a number where the doctor got the pre-authorization right over the phone didn't need to do all the paper work. If you want to pm me feel free too.
 
I'm so sad to hear that you both have so much trouble with insurance, I am so blessed to have. I've been with kaiser Permanente for years and have a small copay. Shame on the whole healthcare system. I hope you receive your meds soon. God bless
 
Well it looks like I'm joining the club! Just have to get this darn TB test done... It seems there is only 1 place in my area that does it. Sometimes I hate living in rural New Brunswick!!

I'm terrified of needles due to many bad experience with blood draws and IVs (I have bad veins apparently) but hopefully this will be better as I don't have to find a vein!
 
Dear Kiik, The needle is so small the only thing that hurts is the meds going in...... Bite on a pillow to scream if u need too. It's a miracle drug for Crohns, as far as joint and muscle pain not so much. I use Tramadol or whatever for pain. Good luck to you!!!! Kittykelly
 
Just wondering if anyone can help. My urine burns, dark yellow/ brown, smelly and the acid level burns. It's a bit cloudy. My bloods say white cell ok. Lowish in urea, alk phosphate, potassium. High in albileum and mchc. It's linked to my humira and imuran that much I know
 
Aura said:
Just wondering if anyone can help. My urine burns, dark yellow/ brown, smelly and the acid level burns. It's a bit cloudy. My bloods say white cell ok. Lowish in urea, alk phosphate, potassium. High in albileum and mchc. It's linked to my humira and imuran that much I know
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You should contact your doctor ASAP!
 
Aura said:
Just wondering if anyone can help. My urine burns, dark yellow/ brown, smelly and the acid level burns. It's a bit cloudy. My bloods say white cell ok. Lowish in urea, alk phosphate, potassium. High in albileum and mchc. It's linked to my humira and imuran that much I know
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Wow, I have not heard of this before. Kirsty, get in to see your doctor. I am so sorry.
 
On Friday I did ask the same question to my ibd nurse. I haven't heard back yet. I will follow up with doc on Monday, it's Saturday evening here now
 
Aura said:
Just wondering if anyone can help. My urine burns, dark yellow/ brown, smelly and the acid level burns. It's a bit cloudy. My bloods say white cell ok. Lowish in urea, alk phosphate, potassium. High in albileum and mchc. It's linked to my humira and imuran that much I know
Click to expand...

Aura,
You need to c the Dr. ASAP who knows what it could b. Humira sure has a lot of side effects :ymad: I shot up Wed. and not feeling to speed yet but it takes me several days of pain and other sh$$t. I'm also a LPN, however I'm on Disabilty.... So does that even count? Get better soon:Flower:,
Kitty Kelly :grr1d:
 
Aura said:
Just wondering if anyone can help. My urine burns, dark yellow/ brown, smelly and the acid level burns. It's a bit cloudy. My bloods say white cell ok. Lowish in urea, alk phosphate, potassium. High in albileum and mchc. It's linked to my humira and imuran that much I know
Click to expand...

I did a google search for interactions between Humira and Imuran. Of course it brought me back to an old thread on the forum that you might find interesting.

http://www.crohnsforum.com/showthread.php?t=9155
 
MrsC said:
Izzy my Medicare script is being processed will know a date of delivery tomorrow. I had my doctors nurse put Urgent on the script and they said it would be processed and sent out within 24-72 hours. I also called my prescription part D provider and they gave me a number where the doctor got the pre-authorization right over the phone didn't need to do all the paper work. If you want to pm me feel free too.
Click to expand...

Hi Mrs C thanks but I am in Australia, our government healthcare system is also called Medicare - it's standard in Oz for a Humira application to take a couple of weeks to be processed as the government will subsidise the cost of the medication. Happily, my scripts are in and I start the loading doses on Tuesday! Hope you get yours soon :)

Aura, did you have an outcome from the doctor yet? Hope you are well x
 
Thanks Tots I will keep you posted. I'm phoning the hospital tomorrow to speak to my nurse and see what my GI says
 
I've been in touch with my nurse. I need to get my bloods done again, increase my water, phone her Wednesday. She's keeping my GI informed. If anything changes I need to phone her.
 
Just did my injection, and it hurt! Not sure what caused it. Maybe the fluid was too cold, but I let it sit for a little while to warm up. I used the thigh I don't normally use, but I've injected there before, and it was just like the other thigh. Worst I've had was in the stomach, and injecting with it kindof cold, right after wiping with the alcohol pad. It would sting/burn a little, but wasn't bad. But this one...seemed ok at first, and then suddenly hurt. I wonder if I pinched my skin up too tightly?
 
Sometimes I reckon if you are tired, stressed, real busy, getting over a bug, feeling down it hurts more as the fluid goes in to your skin
 
My first set of shots gave me a headache at about the halfway
point. My second set gave me a wicked go to the ER headache
at the same point. This Friday I take one shot.

Is it reasonable to think with less medication the less likely I
am to get a headache? Or that I am going to get used to the
meds?? Because I am finally going only twice a day with a lot
less pain. And for the first time in two years I think I am feeling
better!!!



Lauren
 
Hi Lauren,

Sorry to hear about your headaches they sound awful, hopefully it goes better this Friday for you! x

I did my loading doses yesterday, the first one I wasn't firm enough and though it did go in, some of the medicine dripped out as I took the pen away - damn it! The rest went okay, second one was better, the nurse did the third to really demonstrate the firmness and I nailed the fourth haha. It wasn't as bad as I was expecting, hardly hurt at all and I'm proud that I could inject myself.

Really positive about this medication, hoping for good results! I haven't seen any ill effects or signs of fatigue so fingers crossed.
 
Hi Lauren,

I too had severe headaches after both lots of loading doses. I found that mine did decrease in severity significantly once I started on the one needle per fortnight maintenance dose. I still get mild headaches but that's as bad as they get now. Of course just because I had that experience doesn't mean it will be the same for you, but I hope so - or even better, that you stop getting headaches from Humira at all! All the best.
 
Hi Lauren. I hope you don't get any more headaches. I was wondering if you might try taking a headache med like Tylenol about half an hour before your injection, to try to ward ofF the headache?
 
tots said:
My first set of shots gave me a headache at about the halfway
point. My second set gave me a wicked go to the ER headache
at the same point. This Friday I take one shot.

Is it reasonable to think with less medication the less likely I
am to get a headache? Or that I am going to get used to the
meds?? Because I am finally going only twice a day with a lot
less pain. And for the first time in two years I think I am feeling
better!!!



Lauren
Click to expand...

I've had some headaches that I attribute to the Humira. First time it happened was, I think, days after the loading dose (4 shots). The headaches have gotten more spaced out along the way, although I think in some cases more severe. I've gotten a better idea of how to handle them, though, so it's easier to deal with now, too.

In my case, these have been sinus-related--that's where the pain is, but there's not congestion as with my usual sort of sinus headaches. Tylenol and Sudafed, if taken early, can keep it at a tolerable level. Otherwise I've had to resort to some cough medicine with codeine I had left over from a chest cold a while back. (And one time I tried a "herbal" remedy, if you will...which helped, but it's definitely not a "by the book" option.)

These have been migrane level, and in one instance I was thinking about going to the ER. I do plan to get an MRI at some point, since I've had chronic sinus problems in the past.

I know for me, bad as the headaches have been, they knock me down for a day at the worst, and I'd rather that than have my Crohn's symptoms come back in full force.
 
kiik said:
Well it looks like I'm joining the club! Just have to get this darn TB test done... It seems there is only 1 place in my area that does it. Sometimes I hate living in rural New Brunswick!!

I'm terrified of needles due to many bad experience with blood draws and IVs (I have bad veins apparently) but hopefully this will be better as I don't have to find a vein!
Click to expand...

Kiik, I think you'll find it's a lot easier and less painful than you expect. I hate needles too, but got used to it quickly.

Gra
 
Elektrikhd, now that I have a pretty good idea it's my Humira, I will jump on I at the first sign of pain. I have all expectations it will fade or I will learn to deal with . Much easier than cramps and the big D!

DogUte, thats the plan now. I felt better today than I have in two years, energy wise! I don't want to fail now.

Elvie, think for the sense of hope! I really believe that like you, the headache issue will improve.


Lizzy16, I failed Remicade so my hopes are all in this basket so to speak. After my two loading doses I already feel a difference. It's awesome!


Thank you all for your answers.

Lauren
 
Well got my Humira starter kit yesterday gonna start the loading dose friday so that way boys won't be in school and hubby doesn't have to work JUST IN CASE.
 
It's very heartening to read about how Humira is working well for so many of us!

Lauren - I also failed Remicade (it worked for a little while but I ultimately developed antibodies) and Humira has brought me back from the pure hell that has been the past few years. I hope your headaches fade! I've noticed a Humira side effect for me is itchy skin - no rash, just itchiness, mostly around my torso and chest. However, this is a small "price to pay" for how good I've felt since starting Humira. Good luck to you!
 
Gave myself my first 2 shots today give myself next 2 tomorrow and then 2 more shot on the 12th. My shots today did one shot each side of stomach the funny thing is the left side hurt and the right side didn't. So far no side effects. Got a ? for all my Humira Homies, how long before u seen side effects if u had any?
 
Scoutfinch-

Funny you should mention itching! I have been itching for
two days. Around the torso. Today was to be my day of
taking one shot and my pharm messed up so hopefully I
will get my pens soon. I am surprised a specialty pharm
had such trouble with this. It's not complicated !!



Lauren
 
Hi all first post here on this thread. Im currently on remicade, but am having delayed reactions (hives). I was thinking about talking to gi about switching to humira. I do well symptom wise with remicade but afraid the reactions will get worse with the next infusion. If im reacting to the remi do you think the same will happen with the humira? Any advice would be great.
 
rr u might be having a reaction to the mouse protiens, humira is made with human protiens that are easier for our systems to adjust too. I have currently started my Humira and so far knock on wood no serious reactions. Hope this helped u.
 
I find that thinking that I have to give myself the shot that day is worse then taking the shots. This is 3rd time I have been through the 4 shot/2 shot start up, GI dr. wanted to experiment with other meds. All day I dread the shots, but when time comes its nothing at all.
 
Has anyone noticed an increased appetite on Humira? It's only been a week very early days but my appetite has been really big for the last few days, especially at night time. I don't think it's the Prednisone as I'm down to a very small dose (5mg) and haven't noticed it beforehand but it might be a delayed side effect.. Big appetite is better than no appetite!

Anyway all going well the first week in, increased energy with no need for naps during the day and my stomach hasn't been too much trouble, as I say early days but positive so far. x
 
lizzy16 said:
Has anyone noticed an increased appetite on Humira? It's only been a week very early days but my appetite has been really big for the last few days, especially at night time. I don't think it's the Prednisone as I'm down to a very small dose (5mg) and haven't noticed it beforehand but it might be a delayed side effect.. Big appetite is better than no appetite!

Anyway all going well the first week in, increased energy with no need for naps during the day and my stomach hasn't been too much trouble, as I say early days but positive so far. x
Click to expand...

Glad it's working for you so far! Remember to familiarize yourself with side effects, so your aware what to look out for.
 
lizzy16, could be the Humira is working & your body is healing, that requires fuel.
Hope you continue feeling better.
Rgds
Grant.
 
I'm still waiting on my blood rest results. Went to ER Sunday they put me on antibiotics as I had blood in urine. I told them of my previous blood results and renal issues. Doc wasn't a good listener so I see my GP today and email my IBD nurse with an update. I have an eye infection in both my eyes and the ER doc gave me drops for allergies. So I still have infected eyes that aren't as itchy. My WBC will be higher due to eye infection, but I bet the docs will say that I have a uti rather than problems with kidneys and humira. So I will keep my nurse updated at the hospital.
 
I am going to start humira as soon as everything gets situated wit the insurance and the humira assistance program..
Right now I have the talking practice injector.
Little nervous though :(
 
hthompson631 said:
I am going to start humira as soon as everything gets situated wit the insurance and the humira assistance program..
Right now I have the talking practice injector.
Little nervous though :(
Click to expand...

It will be fine :) try not to be to anxious its not worth the worry. I know because I was very anxious and everything went great. A Humira nurse came to help me with the loading doses and stayed until I was calm. Its been over 2 years now...wow time has gone so fast.
 
My symptoms were improving but with my pharm screwing
up, I missed my does last Friday. Today was pretty rough
towards the end of the day.


Maybe it's all in my head or....... Either way I want my meds!!



Lauren
 
tots said:
My symptoms were improving but with my pharm screwing
up, I missed my does last Friday. Today was pretty rough
towards the end of the day.


Maybe it's all in my head or....... Either way I want my meds!!



Lauren
Click to expand...

Lauren give it time. It will work out, if you can tolerate it.
 
Has anyone experienced tingling and numbness in their hands and arms? My doctor wants me to talk to a neurologist and have a ncv test ( nerve conduction volocity).
 
Got my meds today......

I use the pens, confirmed that a few times, they sent
the syringes.

God Forbid this pharmacy be in the position of keeping alive!

Ugh!

Lauren
 
Last edited:
I'm new to Humira. I started 2 weeks ago, today is my day 15 (the last of taking the 2 doses). I was fine giving myself the first injections, but now I'm having a lot of anxiety. I tried to give myself the injections and I kept shaking, I twitched so bad I accidently hit the plunger and sprayed medication all over myself. I don't know why I freaked out, I don't normally have anxiety and I don't have a fear of needles or pain. I still haven't been able to go through with the injections, I'm still shaking and my heart feels like it is about to explode out of my chest. I was wondering if anyone has gone through something like this and if there is anything that can help the anxiety.
Thank You.
 
Derby Girl said:
I'm new to Humira. I started 2 weeks ago, today is my day 15 (the last of taking the 2 doses). I was fine giving myself the first injections, but now I'm having a lot of anxiety. I tried to give myself the injections and I kept shaking, I twitched so bad I accidently hit the plunger and sprayed medication all over myself. I don't know why I freaked out, I don't normally have anxiety and I don't have a fear of needles or pain. I still haven't been able to go through with the injections, I'm still shaking and my heart feels like it is about to explode out of my chest. I was wondering if anyone has gone through something like this and if there is anything that can help the anxiety.
Thank You.
Click to expand...

Hey! I went through a stage of this sort of thing, I found the best way to deal with it was to get it over with as soon as possible (without over thinking it) and have some music or the TV turned up to distract me.
Organise all the stuff you'll need to do the injection, alco-wipe the area you'll be injecting, gather up some skin, hold the pen/needle against it and go for it.
 
Derby, you could try and reward yourself with a treat afterwards. If you still get anxious is there a local nurse that could help you? Or someone at home that could inject you?
 
Derby Girl said:
I'm new to Humira. I started 2 weeks ago, today is my day 15 (the last of taking the 2 doses). I was fine giving myself the first injections, but now I'm having a lot of anxiety. I tried to give myself the injections and I kept shaking, I twitched so bad I accidently hit the plunger and sprayed medication all over myself. I don't know why I freaked out, I don't normally have anxiety and I don't have a fear of needles or pain. I still haven't been able to go through with the injections, I'm still shaking and my heart feels like it is about to explode out of my chest. I was wondering if anyone has gone through something like this and if there is anything that can help the anxiety.
Thank You.
Click to expand...

Lots of people on these forums, including me, went through similar nerves in the beginning. It gets easier. :) Just try to tell yourself that Humira is going to make you better, do a bit of deep breathing, and as Aura said, reward yourself afterwards. I try to think of injection day as chocolate day - turning a negative into a positive! I was shaking when giving myself my first lot of loading doses then fine after that. Remember, you never have to go through the four loading doses in one go ever again! You're through the hardest part already. Keep in mind there's nothing abnormal about the way you've reacted - being scared is totally normal. If you're really worried, if you can get someone else to do the injection for you that might be a good idea, at least until you feel better about it.
 
DougUte said:
Kate269, I am on Humira and Budesonide as well. It has not stopped my D either.

I just had a pen malfunction that I sent back to Humira.They replace the onedefective pen with two freebies. Nice.
Click to expand...


I've been using Humira for over 5 yrs without any malfunctioning pens or issues except a minor injection site reaction every time. However, my last 4 pens have malfunctioned - once i removed the pen the medication drips/squirts out of the pen, I know the needle penetrated the skin, i just don't think any or little medication actually was injected. I always have a little burning sensation and an injection site reaction, I had neither. I thought the first injection was a fluke and maybe I'd become a little complacent/user error so I made sure I followed the instructions to the tee for the following 3 injections - even re-watched the video. I'm also a health professional used to giving injections. They were all from the same lot number. The drug maker was really easy to work both times and contacted my specialty pharmacy right away to overnight additional medication free of charge. I haven't used my last set yet (same lot number again) b/c I've recently had to have surgery but will do so soon. My first surgery too - the last thing I needed was to be without the Humira. Maybe all the pooping and puking has given me abs of steel. :)
 
ehCrohnie

Did you immediately use another pen? Or did you wait for the replacement? If the med still "squirts" as opposed to drips, maybe you hit something that actually plugged the needle. Is that even possible?

I hope that doesn't happen to us!! I'd be wondering how much he got, should we call, should we redo the injection, should we…..?? EEEeeekkk!!
 
Dexky said:
ehCrohnie

Did you immediately use another pen? Or did you wait for the replacement? If the med still "squirts" as opposed to drips, maybe you hit something that actually plugged the needle. Is that even possible?

I hope that doesn't happen to us!! I'd be wondering how much he got, should we call, should we redo the injection, should we…..?? EEEeeekkk!!
Click to expand...



After speaking with my MD (and the humira nurse and someone from their product development dept), I did immediately use another pen when I had one available. The last time I had to wait for my delivery of the replacements. AbbVie took back the pens to investigate if there was an issue. I've been pretty careful to rotate sites and not inject within 2in of the belly button to avoid potential scar tissue. If possible, I don't think I would have hit something that plugged the pen that many times in a row. Maybe squirting is too strong a word since it really is only 0.8 mL but it was enough to run down my hand and dribble more than just a drop or two on my pants. I really think there was a pen delivery system malfunction as did my MD office. I've been using the pen for over 5 yrs without an issue so I'm sure most people won't ever have an issue. However, if it does happen the drug maker is really easy to work with and the nurse will likely direct you to contact the MD to decide on your treatment plan.
 
Derby Girl said:
I'm new to Humira. I started 2 weeks ago, today is my day 15 (the last of taking the 2 doses). I was fine giving myself the first injections, but now I'm having a lot of anxiety. I tried to give myself the injections and I kept shaking, I twitched so bad I accidently hit the plunger and sprayed medication all over myself. I don't know why I freaked out, I don't normally have anxiety and I don't have a fear of needles or pain. I still haven't been able to go through with the injections, I'm still shaking and my heart feels like it is about to explode out of my chest. I was wondering if anyone has gone through something like this and if there is anything that can help the anxiety.
Thank You.
Click to expand...

I am fairly new as well, taking my third maintenance dose tomorrow :yfaint: In the GI office for the initial 4 shot loading dose I did three of the four shots myself. Thought it would be no problem when it came time to do the second loading dose myself in the comfort of my own home. I'm not sure what happened but I became so stressed out! I ended up messing up the first shot, by flinching I think and had a nickle sized area of medicine sitting on my leg, ugh! I did manage to do the second one. I called my GI nurse about the messed up one and she gave me a sample pen to do. I did manage to do that one as well but not before having an anxiety attack. Crazy! I never expected to get this worked up. So, for peace of mind, I now have my husband give me the shots. He counts down from 5 and after the longest 10 seconds ever it's over :) It has worked out wonderfully.

All this to say, you are not alone and for me having someone else actually do the shot has worked better for me.
 

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