Going on Humira/Aza in two weeks

[stevenb1291]

Together with my GI we decided on Humira and aza as a treatment course. The Humira was ordered via a specialty pharmacy and should be here in two weeks. I can begin it as soon as I finish my treatment for H. pylori.

I have a few questions for all those who are currently using it. Here it goes:

1. Do all Humira users regularly have blood tests that test for side effects such as lymphoma?

2. How frequently do you experience a lowered immune response to colds and/or other infections?

3. Anybody experience extreme fatigue?

4. How painful is the injection?

5. Is the injection quick?

6. Do you always have another person with you, and for how long, the day of your injection?

7. I have to get both a pneumonia and shingles vaccine as well as a TB test. Do these vaccines now happen yearly?

8. How many of you premed with benadryl and tylenol, etc?

9. If I may, and you don't mind sharing (I completely understand if you'd rather not), what is the co-pay for Humira?

That's all I can think of for now.

Thanks in advance for your help. I assume I will learn many of these answers in the nurses' clinic I am attending or with my GI when we meet before I start treatment but, alas, I am a planner...

Thanks so much!

Enjoy your weekend!

Steven

 

[Nytefyre]

I used to take Humira so I wanted to give my 2 pennies worth...

1. Do all Humira users regularly have blood tests that test for side effects such as lymphoma?
thh, I can only remember the initial testing and the testing when it stopped working. When it was working, I didn't even see the gastro all that much.

2. How frequently do you experience a lowered immune response to colds and/or other infections?
The way it was explained to me was that even though these types of meds will lower the immune system, an IBD'er will already have an overactive immune system so the risk is not as bad as we would think. Now, this was a long time ago and could be completely wrong. If it is, someone please correct me. I offer it as I remember (memory is a tricky thing) it being offered to me.

3. Anybody experience extreme fatigue?
I never had a problem with fatigue from the Humira. Probably ymmv, though!

4. How painful is the injection?
I used the pen, and switched from leg to belly, and side to side. I never got used to the prick of the needle. Or maybe it was the actual meds. Either way, it never lasts too long, only long enough to remind you that you are jabbing a needle into your flesh.

5. Is the injection quick?
With the pen, I hit the button and that is it!

6. Do you always have another person with you, and for how long, the day of your injection?
In the beginning I had a ritual. I would take the pen out for 20 minutes, then lay alcohol pad, another dry wipe, and band aid by it. I would mentally prepare for the prick of the needle, and after cleansing the area(always alternating between thighs and belly, side to side) my wife would squeeze the area I was about to inject. After injection, she would dab the blood a little then put a band aid on it. We'd chill for a bit just to make sure nothing happened. As time went on, though, that ritual was thrown out the window in favor of just pulling it out the fridge and popping it in. yeah, that really stings!

7. I have to get both a pneumonia and shingles vaccine as well as a TB test. Do these vaccines now happen yearly?
The TB test only happened once, at the beginning. If I had to have those vaccines, then they were also done at the beginning.

8. How many of you premed with benadryl and tylenol, etc?
For Humira, it wasn't necessary for me to use either of these. ymmv.

9. If I may, and you don't mind sharing (I completely understand if you'd rather not), what is the co-pay for Humira?
In the beginning, my copay was around $50. The last 6-12 months, it was $5. Go figure.

Good luck with the Humira. It helped me for a long time!

 

[CDDad]

1. My doc does a blood test at each visit. I just saw him and my next visit is 3 months.

2. I've been back on Humira for about 7 weeks now and have not had a cold (and all my kids have colds now). But when I was on it before taking a break for a month for my half marathon, I thought I did get 2 colds in a row - so who knows.

3. No fatigue. I just notice that the next day after taking my shot that I am a bit off mentally.

4. Ranges from very painful to not too bad. I find leaving the shot out to warm up for 20-30 min helps.

5. The pen version takes about 10 sec. The syringe verison lets you go at your pace. I've only used the pen version.

6. I happen to always have someone with me, but I would do it alone too.

7. I don't know about vaccines.

8. benadryl and tylenol - not me.

9. I hit out of pocket max due to my surgery last year so it was 100% paid for. But, check into the Huimra Protection Plan
http://www.humira.com/global/financial-assistance.aspx

It reduces the co-pay to $5, but you have to sign up.

Good luck Steven. The worst of course is the 4 shot loading dose.

 

[KayleighMeek]

1. Do all Humira users regularly have blood tests that test for side effects such as lymphoma?
I just had the usual blood profiles renal, liver, crp, fbc and esr about every 6 to 8 weeks.

2. How frequently do you experience a lowered immune response to colds and/or other infections?
I don't seem to get many colds but I do get a few infections but I have had that with other meds aswel.

3. Anybody experience extreme fatigue?
I have to opposite at the moment can't sleep but I have read this is also a side affect.

4. How painful is the injection?
I don't find it painful it's a bit uncomfortable. If you have ever had heparin injection in hospital I think it's similar.

5. Is the injection quick?
It's only a few seconds

6. Do you always have another person with you, and for how long, the day of your injection?
I like to have someone around after my injection just because I have had reactions to other mess but nothing with humira.

7. I have to get both a pneumonia and shingles vaccine as well as a TB test. Do these vaccines now happen yearly?
Any vaccines/tests I had were before I started humira.

8. How many of you premed with benadryl and tylenol, etc?
I don't take any of these

9. If I may, and you don't mind sharing (I completely understand if you'd rather not), what is the co-pay for Humira?
I'm in the uk sorry

 

[dreamintwilight]

Hey Steven! I'm actually on both Humira and azathioprine as well. Here's my input!

1. Do all Humira users regularly have blood tests that test for side effects such as lymphoma?

I get blood tests every 2-3 months. From what I understand the frequency is mostly due to the aza medication. I get complete blood counts every 2 months and complete metabolic panels every 3 months. Though, when you first start the aza they will have blood tests even more frequently to make sure you're processing it properly. I started out every 2 weeks, then every month, then every 2 months.

2. How frequently do you experience a lowered immune response to colds and/or other infections?

I've been on Humira for almost a complete year now and the aza I've been taking for about 9 months. I haven't had a major cold since starting either medication. I'm very careful with staying away from sick people and washing/sanitizing my hands and not touching my face.

3. Anybody experience extreme fatigue?

No fatigue from either medication. Though when I take my aza later than normal I think I can be a bit sleepier than usual. But nothing that interferes with normal functioning.

4. How painful is the injection?

Not bad. It's annoying and stingy, but mostly feels like pressure going in.

5. Is the injection quick?

Yes. I use the pens and they go by very quickly. The prep takes longer than the actual injection. And even that only takes a few minutes (not counting the time the Humira has to sit out).

6. Do you always have another person with you, and for how long, the day of your injection?

The only time I had someone with me for my injection was the first time I dd the shots. I had a nurse come and "train" me on how to inject the Humira. Ever since then, I've done it on my own with no assistance and my husband is normally at work.

7. I have to get both a pneumonia and shingles vaccine as well as a TB test. Do these vaccines now happen yearly?

I had a pneumonia shot a few years before my diagnosis and inquired about having to get it again since my immune system is compromised. My PCP said most of the time once you get a pneumonia vaccine you're set at the very least for about 10 years. Doctors opinions vary, but it's definitely not a yearly vaccine. Shingles I am not sure about. Neither my GI nor my PCP mentioned the shingles vaccine as a necessary vaccine. The only vaccine my GI seemed worried about was Hepatitis B, which I was tested fr to see if I was still immune to it from my vaccines when I was younger. And yes I was still immune. The only vaccine I've had since diagnosis is a flu shot and I'll probably get those yearly from now on.

8. How many of you premed with benadryl and tylenol, etc?

No premed for me. The pain is minimal for me. I just make sure I put pressure on the injection site for at least minute afterwards. That keeps me from bruising.

9. If I may, and you don't mind sharing (I completely understand if you'd rather not), what is the co-pay for Humira?

It depends on your insurance to be honest. I was paying $2 with my insurance plus the Humira Protection Plan card. Then I switched to a different insurance and paid $10 w/ the Humira card. I recently switched back to my old insurance and it's now $3.75 due to an increase in the co-pay. For most people, it's usually $5 or less.

Good luck! Just remember that not everyone experiences the same side effects. So, don't let the scary stories worry you too much.

 

[Entchen]

Hi Steven! Not on Humira but I want to wish you good success on the new meds! I love that you are a planner...I looked at your question list and could only laugh because it's exactly what my notes for doctor visits look like. I think a lot of us here are planners, whether by personality or out of necessity.

 

[Scifimom]

I am also on Humira and AZA but I live in Greece so some answers may not apply to you

1. Do all Humira users regularly have blood tests that test for side effects such as lymphoma? Yes every six weeks I also have CRP tests every six weeks and a set of complicated blood work we call it Biochemicals in Greece every 3-4 months.
2. How frequently do you experience a lowered immune response to colds and/or other infections? Almost all the time, I had three colds so far which lasted 10-15 days each Its cold season in Greece but still... I did not have any fever though, just sore throat, stuffy nose and cough
3. Anybody experience extreme fatigue? Fatigue No Headache yes
4. How painful is the injection? Depends on your pain tolerance level, for me is nothing I just take of the fridge, poke,push.
5. Is the injection quick? I do the syringe and not the pen, it lasts about 5seconds.
6. Do you always have another person with you, and for how long, the day of your injection? No just the first time
7. I have to get both a pneumonia and shingles vaccine as well as a TB test. Do these vaccines now happen yearly? I had pneumonia vaccine last year, the doc told me it will be ok for the next 3-5 years. My latest test showed antibodies to shingles so I did not get a vaccine.
8. How many of you premed with benadryl and tylenol, etc? Nope
9. If I may, and you don't mind sharing (I completely understand if you'd rather not), what is the co-pay for Humira? I have no idea, in Greece it is free through the national healthcare system.