Humira

[Guest guest]

I am on Humira now, but have only taken two dosages so far. However, I think

I'm already noticing some improvement. The only side effect I've noticed is

that the day after I take it I get a migraine for a few hours. I plan to speak

to my rheumatologist about this next week when I see her.

Beth Van Pelt <bethfvp@...> wrote: <sarahm_76@...> wrote:

I was wondering if I could ask for some advice about Humira from anyone who has

tried it, sucessfully and unsucessfully...I would really appreciate to hear

about any experiences of bad reactions to Humira. Only as a precaution so that

if something does go wrong I will be aware and can get on top of it quickly.

[Guest guest]

Humira for me was a God-send. I've been on it for about 2 going on

3 years with little or no side effects worth mentioning. I had a

dramatic decrease in PA symptoms and a dramatic increase in energy.

Prior to the Humira I was on methotrexate, indomethicin then

Celebrex. The mtx was okay but was making my liver do some wacky

stuff. So far, I've had no side effects to speak of with Humira

other than having possibly TOO much energy! I continue with an

extremely low dose of mtx (mostly for the psoriasis which flares in

the winter :-( and the bi-monthly shots of Humira. I did not try

Enbrel -- seemed like shooting up 2x a month was better than 4x a

month! So I went with Humira...that plus my rheumy was anxious to

have a guinea pig! But -- nearly three years later, I'm still good.

>

> I was wondering if I could ask for some advice about Humira from

> anyone who has tried it, sucessfully and unsucessfully. I have

> already heard of two experiences, one good and one very bad.

>

> I stopped enbrel a month ago. After trying it for 4 months, my

> rheumy told me to stop taking it as I was getting too many of the

> side effects including heart issues. It is being debated whether

> enbrel has given or induced wolfe parkinson white or something

else

> that is making my heart race at 120-140 beats a min. I have just

> been approved for Humira and as you can imagine, I am very worried

> about beginning because of my experience with enbrel. I need to

try

> another TNF inhibitor because my PA is quite bad, but after

reading

> the list of side effects, humira seems much worse than enbrel...it

> is frightening.

>

> I would really appreciate to hear about any experiences of bad

> reactions to Humira. Only as a precaution so that if something

does

> go wrong I will be aware and can get on top of it quickly. With

> enbrel, my heart was getting worse and worse as the months rolled

> on, and I thought it was just breathlessness from costrocondritis

> and asthma. So I really want to know anything I can about it and

> not have another problem from trying it.

>

> Enbrel worked wonderfully for my pain. My energy levels were

great

> at first too until the heart problem started. I'm really hanging

> out to take my first dose of Humira and want it to work badly, but

I

> am also very nervous of what may happen and want to be aware and

> alert to any complications.

>

> Thankyou so much,

>

>

[Guest guest]

Tish, I've had 3 injections of Humira and have had no side effects so far.

I can't really evaluate the response as I've been on Prednisone as well. Am

dropping down from 10mg. to 5 next couple of days so will see what happens.

Prednisone really is great to me but a dreadful drug if not careful. It sure is

nice to feel 40 again on Pred. Have to face 73 and hope for the best.

I did all the regular drugs and had to quit Enbrel because of sinus

infection.

Good luck and all feel good. Betty VA FL

[Guest guest]

Hi, . My wife is on Humira. Her body was covered with lesions so bad that

her life was complete misery!.......until Humira came along! NOT A SINGLE

PSORIASIS! Anywhere! She's still got a lot of pain, though, but at least her

skin is as clear as cann be! Let me know how you react. My wife had zero side

effects.

Jayson Barsic <jbarsic@...> wrote:

Hi all,

It looks like I am going to be able to get copay assistance to start taking

Humira. I'm curious if anyone here has made the switch from Enbrel to

Humira. If so, did you notice any side effects? My doc said that the

Humira could actually be better at clearing up the P than the Enbrel was,

which is fine because Enbrel cleared me up really well.

Thanks,

Jayson

[Guest guest]

I have been on Humira since December and it is starting to work. It does hurt a

lot going in, but if you ice the area first, and let the Humira sit out of the

fridge for 15 minutes, it helps a lot. It works, and I've had no side effects

at all, but it's slow to work. I just started noticing improvements a few weeks

ago and now don't have to take my pain medicine nearly as much as I used to take

it. (I was also on Mobic twice a day) I take the methotrexate once a week as

well, to work with the humira, but we're starting to wean me off of that now

that the Humira is working. I'm optimistic. As for the stomach problems, I

take Prevacid. It's great and again, no side effects. Good luck!

<jennidbug@...> wrote:

I am supposed to start taking Humira next week for my PA. I'm also

currently taking Methrotrexate injections weekly and Mobic daily. Can

anyone tell me what to expect with Humira? I have a lot of stomach

upset now, and don't know if I can handle more. I'm also very tired

lately and having alot of headaches. Will Humira make me feel better?

Looking for hope,

Jenni

[Editor's Note: Jenni, Humira might, repeat might, help your Psoriasis and your

PA. It is NOT designed to help your stomach or your headaches. I was on Humira

and experienced NO negative symptoms whatsoever - although the shot did hurt a

bit going in. Because our bodies are so different from one another, no one can

predict if Humira will help you. If it is going to work on your P and PA, you

should notice a change within about 8-10 weeks. There are many wonderful meds

for stomach problems, so there is no reason for you to suffer. Ask your doctor

or rheumy for a script for Nexium or one of the other stomach meds. You should

also be taking folic acid which should help relieve some of the fatigue so

insist that your rheumy give you a script or get it over the counter. Please

let us know how you are doing on Humira and good luck with it. It is a great

help to many people. Kathy F.]

[Guest guest]

Jenni,

I have been on Humira for about 1.5 months. I have had great

success with it. It worked very quickly for me. I have not had any

side effects, and I find the injection to be relatively easy and pain-

free (slight stinging during the injection).

I am also taking MTX, but my dosage has been lowered and will

continue to be lowered over time. I have not had to take Relafen

(for pain) since I began Humira -- a great thing!

Best of luck with Humira!!

Regards,

Mark

On Mar 27, 2006, at 3:55 PM, wrote:

> I am supposed to start taking Humira next week for my PA. I'm also

> currently taking Methrotrexate injections weekly and Mobic daily. Can

> anyone tell me what to expect with Humira? I have a lot of stomach

> upset now, and don't know if I can handle more. I'm also very tired

> lately and having alot of headaches. Will Humira make me feel better?

> Looking for hope,

> Jenni

>

>

> [Editor's Note: Jenni, Humira might, repeat might, help your

> Psoriasis and your PA. It is NOT designed to help your stomach or

> your headaches. I was on Humira and experienced NO negative

> symptoms whatsoever - although the shot did hurt a bit going in.

> Because our bodies are so different from one another, no one can

> predict if Humira will help you. If it is going to work on your P

> and PA, you should notice a change within about 8-10 weeks. There

> are many wonderful meds for stomach problems, so there is no reason

> for you to suffer. Ask your doctor or rheumy for a script for

> Nexium or one of the other stomach meds. You should also be taking

> folic acid which should help relieve some of the fatigue so insist

> that your rheumy give you a script or get it over the counter.

> Please let us know how you are doing on Humira and good luck with

> it. It is a great help to many people. Kathy F.]

[Guest guest]

Help! I'm so confused as to what to do. I'm scheduled this week to

begin Humira for my psa. I've been hearing everything from what a

wonder drug to horror stories on the side effects and how it makes

people sick vomitting and diahrea for days after the shot--I know

about the bad side effects such as the cancer but I', in so much pain

I'd try anything--however worse than pain I can't tolerate nausea,

vomitting and diahrea for days--can anyone give me a more clear

picture? Please?

Thank you

[Editor's Note: No one can predict how YOU will react to Humira, but we CAN

predict that your PA, left untreated, will get worse and worse. The instances

of side effects from Humira are VERY low whereas the instances where it helps

people are reasonably high. IF you have nausea, stop taking it immediately.

The odds are overwhelming that you will not experience severe side effects so

why work yourself into a dither for something that probably won't happen? I

believe we have plenty of things that are here, now and real to get upset about

- we don't need to get all worked up over things that haven't and may never

happen. Please let us know how you do on the Humira. Kathy F.]

[Guest guest]

Thanks for the reassurance, the couple in the Dr's office really had

me going and I guess I just panicked!

>

> Help! I'm so confused as to what to do. I'm scheduled this week to

> begin Humira for my psa. I've been hearing everything from what a

> wonder drug to horror stories on the side effects and how it makes

> people sick vomitting and diahrea for days after the shot--I know

> about the bad side effects such as the cancer but I', in so much

pain

> I'd try anything--however worse than pain I can't tolerate nausea,

> vomitting and diahrea for days--can anyone give me a more clear

> picture? Please?

> Thank you

>

> [Editor's Note: No one can predict how YOU will react to Humira,

but we CAN predict that your PA, left untreated, will get worse and

worse. The instances of side effects from Humira are VERY low

whereas the instances where it helps people are reasonably high. IF

you have nausea, stop taking it immediately. The odds are

overwhelming that you will not experience severe side effects so why

work yourself into a dither for something that probably won't

happen? I believe we have plenty of things that are here, now and

real to get upset about - we don't need to get all worked up over

things that haven't and may never happen. Please let us know how

you do on the Humira. Kathy F.]

>

[Guest guest]

The hubby doing great on it (3 months) ! It has also cleared his terrible P.

NO side effects! Good luck!

SH

[Guest guest]

I started to feel better the next day and by the 4th shot I tappered

off. I think everyone reacts differently. I'm sure it will do

something for you. I am not in total remission from Humira, but I am

a lot better. I got a new rhumy this month and he is having me try

Humira every week for two months and then backing me down to two a

month. I start this regiman tonight- we will see if that help put it

in full remission. Good luck-

Date: Sun, 9 Jul 2006

17:29:59 -0700 (PDT)

> From: Ann Weekley <ann_weekley@...>

> Psoriatic Arthritis <psoriatic arthritis >

>

> I just had my first injection of Humira about ten days ago. I'm

wondering what the range of experiences are out there. How long

might it take for this wonder drug to work wonders (if it works for

me).

>

> Would appreciate any feed back.

>

> Arthritic Annie

>

> [Editor's Note: You should start to results by the end of month

two (after the 4th or 5th injection). Kathy F.]

>

[Guest guest]

Ann,

I have been on Humira for about 3 months. I started feeling much better within

one week of my first injection. I have had excellent results with it. I hope

you do too!

Regards,

Mark

On Tuesday, July 11, 2006, at 05:54PM, Ann Weekley <ann_weekley@...>

wrote:

>

><<Original Attached>>

[Guest guest]

>

> Hi, everyone. New to the group, was recently dx with psa. Had a

> three mo. try of Methatrexate. I couldn't move off the couch.

YOu sound like me. PA, Psoriasis, fibro and Hashimoto's

Unfortunately, Humira did nothing for me as well as Enbrel. I am

staring Remicade shortly.

Janet (ny)

[Guest guest]

I have a ?... Do the manager's here mind if I post your page on my links? At my

Lesbian Disabled Group? I put you as a recommendation, but I think I best ask

you lol... Its listed as a health group link...

Love and Peace Always

Shaun and Barb

(Editor's Note: Hi, Shaun. By all means, please continue to list us as a

resource. Thanks for asking and for referring us to others who are afflicted

with this disease. Kathy F. )[Non-text portions of this message have been

removed]

[Guest guest]

In a message dated 16/08/2006 13:06:01 GMT Daylight Time,

nannyclaud@... writes:

I just wanted to sleep. which definitly

doesn't come easy. the rhumetologist started me on Humira. First

dose 2 weeks ago this Thursday. I felt so good, psoriasis almost

cleared, joint pain so much better, and sleep has been real good the

last week.

Hi nannyclaud,

Welcome to the group. I hope the Humira works really well for you and you are

back dashing around in no time. lol

Take care,

[Guest guest]

Wowee...I am so behind on answering and reading some posts due to

working 48 hours a week. I have no experience with Humira.. ..YET. lol.

If I can't take Enbrel, I'll go to Humira next I think. I LOVE Enbrel

but I'm having trouble with infections so we'll see. I wanted to give

you a late welcome to the group though. This group has been very

helpful to me...don't know what I would have done without their support

this year. Stick with us kiddo and you'll go far! -Betz

[Guest guest]

> I LOVE Enbrel

> but I'm having trouble with infections so we'll see. I wanted to give

> you a late welcome to the group though. This group has been very

> helpful to me...don't know what I would have done without their

support

> this year. Stick with us kiddo and you'll go far! -Betz

Hi Betz,

What sorts of infections do you get? Until we moved to Phoenix from

Seattle last January, I was getting about 5 sinus infections & a few

ear infections each year... plus cold & flu CONSTANTLY. I've only been

sick ONCE in 8 months here in Phoenix... I think the sunshine is really

helping me resist colds & flu.

-Marietta

[Guest guest]

I'm new on Humira, 3 shots so far and my PA is worst

by the hour...

If that's the Humira's fault, I don't know...

--- verkhoturye <radiomark@...> wrote:

> I had been off Humira for about 4 weeks due to an

> allergic reaction I

> had. The doctors believe that the Lisinipril I take

> for blood pressure

> is what caused the anaphlaxis.

>

> In the meantime, I'm back on the Humira again. I've

> had two

> injections. My feeling so far is that the Humira

> has made my PA

> worse. I'm getting so stiff and sore. I'm 51 years

> old and just

> " shuffling " around the house tonight.

>

> I would be curious if anybody else has taken Humira

> and felt that it

> does them more harm than good? Maybe I'm just

> getting a one day flare

> after taking the injection yesterday. I guess I'll

> need to wait and

> see, but I'm just not sure that maybe I should be

> trying something

> else. Any thoughts, anybody?

>

> Mark

>

>

__________________________________________________

[Guest guest]

Mark, I had the same impression after my first several shots. I was

worried that it was making me worse, especially my skin. But by the

6th shot, my joints were noticeably better.

That being said, some people notice that after stopping any

particular drug, they don't get a good response when starting it up

again. I think you should call your rheumy's office and express your

concerns.

Also, keep in mind that even with the good drugs this is a " flare and

remit " disease, which means that we will always cycle around through

better and worse periods. It could be just a coincidence that you're

at a " remit " spot at the same time you're restarting the Humira.

Talk to the doctor, but let him know you're willing to give it a

little longer if they think it's safe to do so.

best regards,

sherry z

>

> I had been off Humira for about 4 weeks due to an allergic reaction

I

> had. The doctors believe that the Lisinipril I take for blood

pressure

> is what caused the anaphlaxis.

>

> In the meantime, I'm back on the Humira again. I've had two

> injections. My feeling so far is that the Humira has made my PA

> worse. I'm getting so stiff and sore. I'm 51 years old and just

> " shuffling " around the house tonight.

>

> I would be curious if anybody else has taken Humira and felt that it

> does them more harm than good? Maybe I'm just getting a one day

flare

> after taking the injection yesterday. I guess I'll need to wait and

> see, but I'm just not sure that maybe I should be trying something

> else. Any thoughts, anybody?

>

> Mark

>

[Guest guest]

Dear Mark,

I turned out to be really allergic to Humira and Enbrel. I had bad

reactions to both, but Humira messed up my lungs and they haven’t been the

same since. It took me at least 9 months to get over those 3 injections I

took of Humira so I can’t say it was a great medication for me. It turned

out I must be allergic to the preservatives they put in a lot of the shots

to cut down on bacteria. One of the allergic reactions I had was sore and

aching joints. It is hard to tell when that hits if it is due to allergy or

just a bad flare from stopping your medication. The best way to find out is

to stop Humira once again and see if the joints get any better. Also I took

a lot of Benedryl when I realized I was allergic to something, but no one

could tell me what. I think it probably saved my life so don’t’ fool around

with this if you develop any more allergic symptoms. I had a red burning

face, but I also suffer with erythromelalgia, which causes red burning skin

normally on your feet and hands. The allergic reaction to both drugs made

this condition 10 times worse than normal. I also started swelling in all

my joints and my glands. I felt like my neck just sort of disappeared and I

looked like the Michelin Man with no neck, it was horrible. Also all my

glands ached, under my arms, my neck and just about anywhere else you have

glands. I also had trouble breathing, but I have asthma, so that can be

normal for me with an allergic reaction.

Good luck, and be careful with these drugs. They can be wonderful but for

some of us they are deadly.

Take care, Fran

[Guest guest]

Sorry to hear this...

Love and peace always,

Shaun and Barb...

[Guest guest]

Welcome ,

I was told not too take Ibuprohens and the such with my MTX or humira... I think

it's a double wammy on some and maybe that is why they ask you NOT to take

together...

Love and peace always,

Shaun and Barb...

[Guest guest]

Hi Kathie. Go to RBF. That's www.roadback.org. Click on bulletin board,

scroll down hit " I agree " and the bulletin board page will open. Read a few

posts and then post one asking for Richie. He has a roster full of docs who do

A/P. Put your e-mail address at the top of your post and he will contact you

personally as they are not allowed to post Dr.'s names on the site. Tell him

where you live and he will find you the nearest A/P doc. That's how I got mine.

Good luck, Dolores

Kathy <sunbriar@...> wrote: Well, I took my first shot last nite, so

far no difference, guess it takes a few weeks like the other med was supposed

to.

I have not found anyone here to do AP or MP as of yet, even to change DRS it

will be 4-6 months wait for a second oppinion, So I figured Id just go ahead and

try what my DR has prescribed in the meantime. I have read up on it, it still

sounds better than the methotrexate I came off of. Im also seeing an

endocrinologist and hes trying to get my hormones balanced and I hope that in

itself will help with the joint pain. Im also starting physical therapy as my

hip is trying to stiffen up on me (frozen) and I want to go ride my horse!!! (I

cant) My one hope is that my family DR will be able to work with me on

protocals, but even that will take time for her to research and learn IF SHE IS~

WILLING...since she works with another DR, I also have to convince both of them,

I dont think she will do it if the other one says NO. Kathy

[Guest guest]

Amy, will he be using the regular syringe or the self-injecting pen? I

use the self-injecting pen and it is a piece of cake! Here are some

tips:

1) Take the pen out of the refrigerator for 30-40 minutes before giving

the injection. If it's too cold, it will sting more.

2) Ice the injection site down for 3-4 minutes before injecting. I

don't feel a thing from the needle at all.

3) If he has a site reaction (hives, itching, welt, etc.) then have him

take Benadryl before the next injection. That has stopped or minimized

my reaction. Sometimes I continue to take the Benadryl for a day or

two if the site shows signs of starting to develop the welt.

If he's using the pre-filled syringe, I've heard that all of the above

applies, PLUS it's important to inject v-e-r-y s-l-o-w-l-y. This makes

the overall experience much more comfortable. They say it stings like

hello if you go too fast.

No illness at all from the Humira! The only side-effect I've had is an

itchy raised hive about the size of a half-dollar at the injection

site, but Benadryl has fixed this. Of course, whatever effects he has

from the MTX will continue. But they might be able to reduce his dose

of MTX when the Humira kicks in good.

regards,

sherry z

[Guest guest]

Thank you so much, Sherry! He will be using the self-injecting pen. We have

been practicing with the practice pen tonight and our pen doesn't want to work

right but we are working on getting the hang of it. He has little to no s/e from

the mtx so hopefully this won't be a problem. thanks again for the advice

....especially about the benedryl ...I didn't even think about that!

[Guest guest]

Sherry,

I've been taking the Humira shot with the self-injecting pen -- and I have

to say your suggestions are right on!

And I have to thank you! I never thought of icing the injection site to cut

down on the sting! Great idea!

Thanks!!!!

Patty