Humira

[Guest guest]

Dear Janet, I decided to write you direct and to the group as well, since

it would hopefully reach you faster this way. So far I've injected myself

twice with Humira. You are sure right about the stinging when you inject

the drug. It's almost all you can do not to pull the needle right back out.

I was on Enbrel too, before a horrible reaction nearly wiped me out and it

didn't sting at all. This Humira sure packs a whopper going in.

Now for the good news. After my first injection, within 24 hours I had 3

days where I felt better than I have in 6 years. I couldn't believe it. My

feet didn't hurt as bad, my knee was better and the fatigue was totally

gone. The only bad reaction I had was my skin on my face and hands turned

bright red and was burning like a sunburn. The first time I just thought it

was a fluke and I already have erythromelalgia, which causes burning skin on

my hands and face. So I wasn't too concerned. Anyway, after those 3 days I

was back to my old painful self.

I just injected the 2nd shot a few days ago and again the pain is already

letting up. I would say I have at least a 60% improvement in the joint pain

alone, which is remarkable for me. Up till now nothing has helped me in any

way. My only problem is my skin. My face and hands are back burning red

again and are driving me crazy. I definitely think it is connected to the

Humira, but I will deal with it if it means getting better. I am going to

call my rheumatologist on Monday though and let him know about the reaction,

just in case it is serious. The thing that concerns me is it could be

related to my nervous system and they warn you in the directions not to

take Humira if you have any type of MS or nervous system disease. Right now

the debate is still out on whether erythromelalgia is a circulatory problem

or a nervous system problem. I just don't want to go off of Humira, so part

of me just wants to keep quiet about it. I feel like this is the first

thing I can see some positive results from and I would sure hate to lose it.

But I have to be safe as well. I also don't need to deal with MS along with

PA.

Today I was exhausted, but I also didn't sleep last night. I've noticed

when I first inject the Humira I have trouble sleeping for about 1 night and

then that goes away. I also had the shakes pretty bad last night, which was

a first for me. Remember I have only had 2 injections, so all of these

could be strange occurrences instead of reactions to the Humira.

The good news is the pain relief and the fatigue control. I've found I can

deal with the pain much better if I'm not exhausted. I've been on cruises

and I know how much walking is normally involved and I can imagine you are

exhausted as well as sore. I hope the Humira works as quickly for you as it

did for me. And I hope the benefits last longer with each injection. From

what my doctor has told me Humira has citric acid in it, so we are almost

injecting orange juice under our skin...no wonder it burns...lol. I'm like

you though and it's a small price to pay for feeling better. Keep me

informed on how you do. I would also love to hear from other people who

have taken Humira and if they had any problems with burning skin or any

other reactions like sleeplessness or shaking.

Good luck and I hope you feel better soon. Sincerely, Fran.

[Guest guest]

My only reaction to Humira is a red circle around the injection site for 24

hours. I do not experience sleeplessness or shaking.

Kathy F.

I would also love to hear from other people who

have taken Humira and if they had any problems with burning skin or any

other reactions like sleeplessness or shaking.

Good luck and I hope you feel better soon. Sincerely, Fran.

[Guest guest]

In a message dated 3/28/2004 1:51:10 PM Eastern Standard Time,

Pugnfriend@... writes:

For me it goes away after 7

seconds (I've counted). It took me about 8 weeks before I noticed a dramatic

difference after starting Humira.

Thanks Kathy. I hope I will be as lucky as you. That stinging was weird. I

felt like taking the syringe out before all the medication was injected. I

guess when they say that pain is pleasure they mean it if this works for me.

JANET

[Guest guest]

In a message dated 3/28/2004 2:09:35 PM Eastern Standard Time,

mant128@... writes:

- freeze the injection site first for about 5 mins - it didnt sting nearly as

bad as the first time!!

Thanks ,

I took the one injection and see now difference so far. As far as freezing

the site, did you just hold ice on it for the 5 minutes. I don't know how

that helps since I believe the stinging is coming from the medication reacting

under the skin.

JANET

[Guest guest]

Hi Fran,

Thanks for writing. I am so happy for you that the Humira is working. I

hope I will be as lucky. I feel sorry for you that you have the erythremyalgia.

I was working for a doctor for 15 years and we had a mother and daughter

with it. It felf so sorry for them. They were in a great deal of pain from it

..I have fibromyalgia in addition to the P and PA. I took the Humira injection

on Friday and slept great that night. In fact, the whole next day I was

wiped out. I don't know if it was from that or not. What part of Florida do

you

live in? My sister and mother are on the east side, southern part.

JANET

[Guest guest]

Really, what kind of a reaction? I was told that my chest pains, not being

able to breathe, bp going through roof could NOT be possibly a reaction to

Enbrel. It was after my 5th injection,and after I stopped it, it went back

to normal.... I'm interesting in hearing what kind of reaction that you

experienced with this Fran....

Mel

[Guest guest]

could humira possibly take the place of mtx? The reason I ask, is I cannot

take MTX anymore due to liver disease.... but I'm looking for a replacement

and I know nothing about all these drugs, and my appt is thurs & I want to

be informed and ready to ask for something else. The remicade alone is NOT

enough. I am so swollen and can barely walk, and there must be something

goin on in my foot because after I take a few steps, I get a sharp pain down

to the toe next to the pinky toe and my toes go numb. Podiatrist said it

was a neuroma. Anyone else have this?

Mel

[Guest guest]

For me, I actually saw an improvement in the morning after my first

injection. When I woke up, all that horrible fatigue just

disappeared. I felt like my old self again. I had energy.

Then the swelling started to go down. By the end of the first week,

the swelling was cut in half.

I've been on it for six months now and things have steadily improved

in that time period. My sed rate was 3 at my last sed rate test.

[Guest guest]

Hi, Mel, sorry you are hurting so much. I had to come off MTX because of my

liver. I am on Humira and Arava. Humira can be taken as a monotherapy if you

also cannot tolerate Arava.

Wishing you wellness,

Kathy F.

could humira possibly take the place of mtx? The reason I ask, is I cannot

take MTX anymore due to liver disease.... but I'm looking for a replacement

and I know nothing about all these drugs, and my appt is thurs & I want to

be informed and ready to ask for something else. The remicade alone is NOT

enough. I am so swollen and can barely walk, and there must be something

goin on in my foot because after I take a few steps, I get a sharp pain down

to the toe next to the pinky toe and my toes go numb. Podiatrist said it

was a neuroma. Anyone else have this?

Mel

[Guest guest]

I'm somewhere in between the two of you. I let the Humira sit for about 40

minutes before injecting as it is really painful to inject cold medication. On

a 1 to 10 scale, I would call the 7-second pain I get from the Humira shot a 3.

It stings, but I don't in any way feel that I can't take the pain or that I want

to pull the needle out. For me, the pain goes away quickly and within a few

seconds, I don't even know I've taken a shot. It is clear that individual

reactions can vary greatly.

Kathy F.

" and could not believe the burning and stinging. "

I never felt anything from Humira, and I was on double doses (1 injection every

week).

None the less, let it get to room temp. before you inject it.

I thought I was going to die, as bad as it hurt coming right out of the fridge.

Thanks,

[Guest guest]

In a message dated 3/29/2004 3:43:04 PM Eastern Standard Time,

makeitquit@... writes:

I never felt anything from Humira, and I was on double doses (1 injection

every week).

None the less, let it get to room temp. before you inject it.

I thought I was going to die, as bad as it hurt coming right out of the

fridge.

Sorry you never felt anything from Humira. I was like that with Enbrel. I

only took one injection so far of Humira. I am praying for a miracle. What

are you taking now? Thanks for the tip. I will let it get to room

temperature.

JANET

[Guest guest]

I was told I can't take Arava due to the liver issues as well... is that untrue?

[Guest guest]

MTX can cause liver problems but doesn't cause liver problems in all users.

Arava can also cause liver problems but doesn't cause liver problems in all

users. It is therefore possible that you can have liver problems on MTX and

Arava, or you can have liver problems on one but not the other. I had very

elevated LFTs on MTX but have remained in the normal range in the year I've been

on Arava.

Kathy F.

I was told I can't take Arava due to the liver issues as well... is that untrue?

[Guest guest]

At 05:44 AM 3/30/04, you wrote:

>I was told I can't take Arava due to the liver issues as well... is that

>untrue?

No one here can address your specific situation, I don't think. However,

I had liver problems on sulfasalazine and when my rheumatologist and

I were discussing other alternatives, he said he would not want to put me

on Arava because of my liver history. So it does appear that there are

potential problems with the liver on Arava.

[Guest guest]

Yes Janet - thats it - just hold ice there - my doc tipped me off & i thought

the same thing - but it worked!! thats good enough for me

[Guest guest]

Hi everyone,

I just wanted to say that I took my second Humira injection yesterday and I

am in a great deal of pain today. I don't understand how some of you had two

injections and felt better. I took Enbrel for 6 months with no relief and now

took 2 injections of Humira which were two weeks apart. I am starting to get

upset thinking that everything medication is going to fail for me and I will

never get any relief like most of you here get. Please let me know who is on

Humira and how long it took for each of you to feel it was helping. I hope I

still have a chance at this.

JANET

[Guest guest]

Hi Janet, it took me about 8 weeks before I noticed any positive changes from

Humira.

Hope you find your " magic potion " real soon.

Wishing you wellness,

Kathy F.

Please let me know who is on

Humira and how long it took for each of you to feel it was helping. I hope I

still have a chance at this.

JANET

[Guest guest]

Hi Janet, I've been on Humira since January, added

Azulfidine in February. Although I feel much better I

still ache and hurt and spend most of my time not at

work reclining or in bed with heat and/or pain meds.

I've come to the conclusion that for me this may be

the best that it will get. I can't recall a pain free

day, but it this hasn't kept me from working,

parenting, planning our wedding, selling my house,

etc., although my house isn't as clean as it used to

be ;0 I'm really looking forward to marriage and

living with my fiance-husband, it will make things

easier as far as trying to take care of a home and

gardens...how we all get along with stepkids will be

another story!

As for a med not working, how do you get to the point

where you can say it isn't? Is there such a thing as

no pain, no PS? Is this what we should be expecting

from meds? It seems like the pain will always be there

and as long as the meds are stopping the damage is

that all we can hope for? Does this make sense to

anyone else?

Wish I had all the magic answers Janet.

Jane

[Guest guest]

I am going on almost 3 months of Humira and I must say that it is taking the

edge off a little. I am not pain free but the pain in not as severe.. The

problem I am having is at the injection site and it is getting worse with

each injection. Two weeks ago I had a large itchy hive at the site and this

time it is huge. It measured 3 1/2 inches across and was like a raised red

welt. It itches and hurts at the same time. It is very uncomfortable. I

injected on Friday and it is starting to disappear today. Is anyone else

having

this problem?

Janet

[Editor's Note: Janet, my Humira site reactions were worsening until I did

three things: the first is that I let the Humira come to room temp before

injecting; the second is that I freeze the injection site for at least 15

minutes by laying a package of frozen corn (frozen peas work, too, LOL) on my

thigh; the third is that I inject VERY slowly. I used to inject quickly to get

it over with, but injecting slowly seems to work better. I now find it almost

painless to inject and I have no pain at the injecting site. I do have mild

itching for about 24 hours afterward, but mild is the operative word here. I do

not scratch the itch. If you've done all this, you might contact Abbott

Laboratories to see if you can use an antihistamine or something similar to

reduce the itch. Some people also have much better luck by injecting into their

bellies rather than into their thighs. Hope some of this works for you. Kathy

F.]

[Guest guest]

--- In , fam24@a... wrote

> I am going on almost 3 months of Humira and I must say that it is

taking the

> edge off a little. I am not pain free but the pain in not as

severe.. The

> problem I am having is at the injection site and it is getting

worse with

> each injection. Two weeks ago I had a large itchy hive at the

site and this

> time it is huge. It measured 3 1/2 inches across and was like a

raised red

> welt. It itches and hurts at the same time. It is very

uncomfortable. I

> injected on Friday and it is starting to disappear today. Is

anyone else having

> this problem?

> Janet

>

>

> [Editor's Note: Janet, my Humira site reactions were worsening

until I did three things: the first is that I let the Humira come

to room temp before injecting; the second is that I freeze the

injection site for at least 15 minutes by laying a package of frozen

corn (frozen peas work, too, LOL) on my thigh; the third is that I

inject VERY slowly. I used to inject quickly to get it over with,

but injecting slowly seems to work better. I now find it almost

painless to inject and I have no pain at the injecting site. I do

have mild itching for about 24 hours afterward, but mild is the

operative word here. I do not scratch the itch. If you've done all

this, you might contact Abbott Laboratories to see if you can use an

antihistamine or something similar to reduce the itch. Some people

also have much better luck by injecting into their bellies rather

than into their thighs. Hope some of this works for you. Kathy F.]

Hi, Janet...

I also had giant itchy welts, and with my Dr.'s OK I found an over

the counter anti-itch cream to really help. Especially if I put it

on Before the reaction got bad. Also, I found that differant places

on my body didn't react as much as others-Like avoiding where pants

rub. What I found to be really weird is that I quit for a while &

used Enbril and when I returned to Humira expecting those welts

again- They haven't happened! weird! peace, Mica

[Guest guest]

Posted for r.helwig

Sent: Wednesday, September 29, 2004 1:00 PM

Subject: Humira

Hi All, I started to take Humira once a week and don't feel it's doing me

that much more than taking it twice a month, but it's been only a couple of

months that I switch from every 2 weeks? I have ReA and Fibro and propably

Chronic Fatigue Syndrom? My question is how is Humira working for the

people that have some of same diseases? Thanks

[Guest guest]

Hi Pat, Would like to welcome you to the group. I take Humira, but I

do not have any problems with it. Do you take Methotrexate also, I

know

sometimes you can get mouth sores with that med?

I'm sure you will hear from other's taking the Humira. hugs Tawny

>

>

> Hi everyone, I'm new to this group and I have been reading all the

past posts.

> I have RA an Fibro but my question is about the RA. I have

started taking

> Humira and have had great results with my Ra. But, and there is

always a but.

> I have been having health problems because the Humira has

compromised

> my immune system so much. First I have swollen and weepy eyes.

The Doc

> said it was seasonal allergies. I've never had it before. This

morning I woke

> up with Oral Thrush and have to take medicine for it. I told my

Doc that I am

> thinking of quiting Humira. She said that I should be patient and

see if these

> health problems become chronic. Has anyone had the same experience

with

> Humira? I would sure like to think I can get over this hurdle.

> Pat

[Guest guest]

Hi Pat and welcome to the group. I take Humira, mtx, folic acid and

I am almost done weaning off prednisone. I started the Humira in

January and have not had any side effects other than slight injection

site reaction. How long have you been taking Humira?

Jennie

>

>

> Hi everyone, I'm new to this group and I have been reading all the

past posts.

> I have RA an Fibro but my question is about the RA. I have

started taking

> Humira and have had great results with my Ra. But, and there is

always a but.

> I have been having health problems because the Humira has

compromised

> my immune system so much. First I have swollen and weepy eyes.

The Doc

> said it was seasonal allergies. I've never had it before. This

morning I woke

> up with Oral Thrush and have to take medicine for it. I told my

Doc that I am

> thinking of quiting Humira. She said that I should be patient and

see if these

> health problems become chronic. Has anyone had the same experience

with

> Humira? I would sure like to think I can get over this hurdle.

> Pat

[Guest guest]

> > Hi Jennie,

I've only taken 4 shots. I was on MTX and that helped too but my liver

numbers escalated so high the doc took me off of it. Now he thinks the RA is

actually affecting my liver numbers. I'm limited in what I can take because of

a

sulph allergy that I just developed after trying Celebrex and Bextra. I use

etodalac ER twice a day and Ultracet for really bad pain. I'm waiting for my

Rheumy to call and tell me if I can take my injection today. I'm really glad to

have found this group.

Pat

> >

> > Hi everyone, I'm new to this group and I have been reading all the

> past posts.

> > I have RA an Fibro but my question is about the RA. I have

> started taking

> > Humira and have had great results with my Ra. But, and there is

> always a but.

> > I have been having health problems because the Humira has

> compromised

> > my immune system so much. First I have swollen and weepy eyes.

> The Doc

> > said it was seasonal allergies. I've never had it before. This

> morning I woke

> > up with Oral Thrush and have to take medicine for it. I told my

> Doc that I am

> > thinking of quiting Humira. She said that I should be patient and

> see if these

> > health problems become chronic. Has anyone had the same experience

> with

> > Humira? I would sure like to think I can get over this hurdle.

> > Pat

[Guest guest]

> >

> >

> > Hi everyone, I'm new to this group and I have been reading all the

> past posts.

> > I have RA an Fibro but my question is about the RA. I have

> started taking

> > Humira and have had great results with my Ra. But, and there is

> always a but.

> > I have been having health problems because the Humira has

> compromised

> > my immune system so much. First I have swollen and weepy eyes.

> The Doc

> > said it was seasonal allergies. I've never had it before. This

> morning I woke

> > up with Oral Thrush and have to take medicine for it. I told my

> Doc that I am

> > thinking of quiting Humira. She said that I should be patient and

> see if these

> > health problems become chronic. Has anyone had the same experience

> with

> > Humira? I would sure like to think I can get over this hurdle.

> > Pat