Humira Update

[Guest guest]

Granny,

Great story, what an uplifting and hopefull message to all those who's lives

are affected by this disease.

Dave in NC

In a message dated 10/14/2003 12:06:48 AM Eastern Standard Time,

Grannyof9@... writes:

Greetings group. I just wanted to update you on my progress with Humira. I

will have my third shot tomorrow...this will be the start of my 5th week on

Humira. I'm still completely amazed with the results and I'm reading more and

more

people who are having the same results. My pain level is almost nil. I'm off

all narcotic (vicodin) pain meds and have no need for even NSAID. I've cut

back considerably on the weekly Methotrexate. Over the last 30 years, I have

been

on every drug that was supposed to help with AS inflammation, pain, and

mobility. None has worked as well as this antiTNF medication, with the end

result

having complete SI fusion, sporadic lumbar and upper back fusion's. The

inflammation up and down my spine and neck, is hardly noticeable anymore. It

used to

be if anyone would have touch my back ever so softly, I would flinch and moan

in pain. I have absolutely no fibromyalgia " type " pain in my arms, legs,

feet,

upper back (shoulders) chest, ribs, etc. I have some stiffness in my

leg/neck/back but nothing like it was. My son/wife/grandchild were here over

the

weekend, and we had the best time. We walked (at least 5 miles through town),

I sat

up to visit with them in a " chair. " This is important information....as,

before Humira, I always reclined to visit or watch TV. It hurt too much to

sit....even with narcotic pain meds. I've been able to standup to cook and

wash

dishes without my back screaming in pain. Before Humira, my husband did all

these

things. I vacuumed the whole house several times, went shopping, raked

leaves,

etc. etc. I haven't been in this shape for decades. I have been reading that

these new antiTNF drugs have a very good chance to prevent the fusion that is

associated with this disease. If this is true, it seems to me they should be

started early to prevent the damage that I now have to deal with. To me,

being

with this group for so many years and hearing one drug after another saying

they were going to help us....I believe this class of drugs are going to

revolutionize our care. No more narcotics will be necessary if reports like

this

continue. There have been NO side effects.

Note to companies that produce Oxycontin/Vicodin: Since Anti-TNF drugs are

going to eliminate the need for many of the pain meds... maybe you can put

some

of your researchers on projects searching for a drug that would eliminate

Uveitis. Humira has yet to help Iritis on me. Maybe this will take time?

UT Health Science Center - Health Leader, The Backbone of Ankylosing

Spondylitis

[Guest guest]

Granny, I'm very pleased that Humira has helped you so much! I have ReA

and Fibro and it has done very little for me and I've had 8 injections. The one

benefit I do notice is my energy seems a bit higher.

Once again one drug works for some and does little for others. I have

also taken Enbrel and Remicade with no more help then Humira except for the

higher energy.

I've been reading about all these TNF drugs and there all recommended for

RA, Crohns, AS and Lupus, so why do they think any of these drugs are going

to work on ReA? I know I would be worse without these drugs but I have never

gotten any sort of relief like Granny has received.

When are they going to develop a drug just for ReA and Fibro, in stead of

all these hand me downs, just because they are all in the same family!!

[Guest guest]

In a message dated 10/14/2003 4:42:24 PM Eastern Daylight Time,

lbulifant@... writes:

> Is Humira the same as Enbrel?

Yes, , Humira is in the same class of drugs as Enbrel. Humira is the

latest of the TNF-a drugs that have been found to be effective in the control of

our disease. Remicade was first and has been tested the longest. However, it

has to be infused (IV) every couple of months and can take up to 2-3 hours at

the doctors office. Enbrel came next and was just approved for AS a couple of

months ago. It can be given at home or the doctor's office twice a week.

Humira came out with a subcutaneous shot given every other week. Anyone can

learn

to give this to themselves or have their mates give it. I don't think there is

any evidence that one drug is more effective than the other....just that one

might be more convenient. That is why I chose Humira and the big fact that they

have a program for patients who are on Medicare and have no prescription drug

program with their supplemental insurance. It is very expensive, as you know.

$15,000 a year, if one was to pay out of their own pocket! My Rheumatologist

said that these drugs work on 80% of her patients. I have heard it may take

some patients longer than others, especially if damage to joints is great. I

don't want to give the impression that all my pain is completely gone and that I

can do somersaults. The pain and mobility is just so greatly improved (at

least 80%) that I can ignore what I do have. LOL I still have trouble putting on

my socks and some other activities, but at 67 yrs....who doesn't have some

problems? I don't know how long this will last, hoping for the best. Like any

drug, there are possible side effects. So far, I have none. Please keep us

posted

about your husband. I hope the drug kicks in and he starts to see

improvements.

Best regards, Connie (granny)

[Guest guest]

Dear , I'm sorry that these class of drugs aren't working for you. I

wrote a few weeks ago...asking if anyone with ReA was getting relief from the

TNF-a drugs. Most of the literature on the spondyloarthropathies/TNF-a....that I

have read about....has been with Crohn's, psoriasis and AS. It may be that

some forms of ReA are in a class all their own. I don't think anyone knows for

sure. There are questions....like why do some ReA patients go onto chronic

forms and some go on to have AS and others have a 6 month bout of ReA and never

have another episode? They have learned much about our diseases the last 10

years, but do not have all the answers yet, nor do all the drugs work on

everyone.

Don't give up hope....never before was our disease researched like it is

now. Best regards, Connie (granny)

[Guest guest]

Hi Granny, my husband has terrible ReA (10 yrs now) and I " lurk " here

to see how people are doing. This is just the most inspirational

post I've seen in a while. Is Humira the same as Enbrel? My hubby

has been taking Enbrel injections since last December and although it

has helped, he still has some really bad weeks and continues to take

narcotics at night. His two top vertebrae are fused so his neck

barely turns and he is hunched which also bothers his ribs and

sternum. I'm contstantly on web-sites looking for new/better

treatments for ReA. Please keep udating us on this drug.

Thank you so much for sharing this story. It warms the heart to see

improvements and hopeful medications that could help all of you that

suffer with this terrible condition.

Sincerely,

in NC

> Greetings group. I just wanted to update you on my progress with

Humira. I

> will have my third shot tomorrow...this will be the start of my 5th

week on

> Humira. I'm still completely amazed with the results and I'm

reading more and more

> people who are having the same results. My pain level is almost

nil.

[Guest guest]

Hi Connie. Thanks so much for the feedback. We're very familiar

with Remicade as my husband was on it for over a year before his body

started rejecting it. They actually had to shoot him up with

benadryl before starting the infusions and again during the infustion

when his bp dropped. At that point, it wasn't worth it any longer

since the Remicade seemed to have stopped working.

So far his is very happy with Enbrel. He's been on it for almost a

year only because he has a wonderful doctor who was able to get the

drug before it was actually released for ReA. The Enbrel has made

him feel better than he has in years. I do the injections for him

(he can't stand injecting himself in the theigh) but it's not a

problem. Even on his worst days, he can manage to get his shoes on

where as a year ago, our 3yr old son was doing it for him. He has

the same fear you all have, and that is that the drug won't help

forever. We're hoping it lasts unitl the next drug is introduced.

From what I've seen, ReA has become more common and there are many

clinical studies underway in Europe. Let's just hope they find that

magical " something " that reverses the autoimmune response.

I'll have to ask about the Humira since it's not given as often as

the Enbrel.

Thanks again and best wishes.

> In a message dated 10/14/2003 4:42:24 PM Eastern Daylight Time,

> lbulifant@m... writes:

>

>

> > Is Humira the same as Enbrel?

>

> Yes, , Humira is in the same class of drugs as Enbrel. Humira

is the

> latest of the TNF-a drugs that have been found to be effective in

the control of

> our disease. Remicade was first and has been tested the longest.

However, it

> has to be infused (IV) every couple of months and can take up to 2-

3 hours at

> the doctors office. Enbrel came next and was just approved for AS a

couple of

> months ago. It can be given at home or the doctor's office twice a

week.

> Humira came out with a subcutaneous shot given every other week.

Anyone can learn

> to give this to themselves or have their mates give it. I don't

think there is

> any evidence that one drug is more effective than the other....just

that one

> might be more convenient. That is why I chose Humira and the big

fact that they

> have a program for patients who are on Medicare and have no

prescription drug

> program with their supplemental insurance. It is very expensive, as

you know.

> $15,000 a year, if one was to pay out of their own pocket! My

Rheumatologist

> said that these drugs work on 80% of her patients. I have heard it

may take

> some patients longer than others, especially if damage to joints is

great. I

> don't want to give the impression that all my pain is completely

gone and that I

> can do somersaults. The pain and mobility is just so greatly

improved (at

> least 80%) that I can ignore what I do have. LOL I still have

trouble putting on

> my socks and some other activities, but at 67 yrs....who doesn't

have some

> problems? I don't know how long this will last, hoping for the

best. Like any

> drug, there are possible side effects. So far, I have none. Please

keep us posted

> about your husband. I hope the drug kicks in and he starts to see

> improvements.

> Best regards, Connie (granny)

>

>

>

[Guest guest]

Just thought I'd let everyone know how I'm doing on the Humira, which

I've been on for the last three weeks. I've had 2 injections and

will be taking another later this week.

With my P - The lesions on my scalp that I've fussed with for years

seem to be slowly disappearing. The same goes for the lesions that I

had on my belly. My mom and my husband both say that my skin feels

softer/smoother than it had previous. I hadn't noticed it until they

told me.

With my PA - Now, the effects with the PA, its hard for me to know if

they are coincidence (such as the weather is getting better) or if

they are truly the Humira. My joints haven't been hurting/aching the

way that they were just on the MTX. I haven't taken my Darvaset (for

pain) since I had the first Humira injection (5/12). And after a day

out with my mom (leave it to parents!), she noticed that I'm walking

and moving better and seem to have more stamina. Another thing that

I really didn't notice until brought to my attention.

So, for now, it looks as if the Humira is working for me, and that

makes me really happy. I was leery about starting the Humira.

Now if only I could get my sinuses figured out!

Engle

P/PA

Ohio

[Guest guest]

Try a neti pot for your sinuses. It's been like a miracle for me!

Works way better than saline nose drops or spray. I'm totally off all

allergy and sinus meds. I like having less meds since I take so much

for my PA (Celebrex, Humira, Tramadol).

regards,

sherry z

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[Guest guest]

Thanks for the suggestion! I've heard of neti pots, I just haven't tried one

for my sinuses. My Ear/Nose/Throat doctor seems to think it might be an

infection that is holding tight. He's treating it with antibiotics right now.

Not sure what the next step will be with all that.

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