Questions about Enbrel

[Guest guest]

Dear Janet,

I haven't started the Enbrel yet however, my doctor is planning on me

starting it in the near future. I go to a county clinic and there is

a lady there that is helping me to get approved for a program that

helps pay for the drug. I know that sometimes prescription companies

have programs themselves. Just a suggestion but I would check to see

if that is the case.

You mentioned that the drug has made you gain weight. I am sorry to

hear that since my future seems to be Enbrel. I have already gained

50 pounds due to the steriods. The last visit that I had while

having a flare up my doc wanted to put me on the steriods again even

though the last two times they didn't work for me at all and did

nothing more than make me suffer through the side effects. When he

said " going to try steriods again " I broke down crying and begging

him not to do that because I was trying to lose the weight and all

that they did any more was cause me to gain it. It is hard enough to

lose weight when you spend most of your days barely mobile with out

the doc adding drugs that make you gain even more weight.

I know that this is a personal question and you don't have to answer

if you don't want to. But, I was wondering, how much weight have you

gain since being on Enbrel?

Barbara

[Guest guest]

Barbara, I was on Humira for 2 1/2 years (which is a drug very similar to

Enbrel) and I did not gain any weight during that time frame. I haven't heard

that it causes weight gain, although on the Enbrel web site...it does mention

under a " Frequency not determined " for a side effect of weight gain. Most

web sites mention the the opposite, which is anorexia and weight loss. I think

with almost any drug we take...there are numerous side effects listed...and

the literature scares all of us. We're all different...and I wouldn't be too

afraid to take the Enbrel...as it will most likely help you deal with the pain

issue. Steroids are known for their side effect of weight gain, but I

haven't heard too much about weight gain with the anti-TNF drugs.

You do have to be careful of infections...stay away from people who have bad

coughs, etc. That is why I went off the Humira. I did have very good success

in the beginning...the first year. My pain levels were 80% better, I was in

hog heaven...for a while. However, I believe I developed antibodies after the

1st year..and my doctor ordered doubling my dosage. That helped another 6

months or so...when I got the flu over the winter months and had to go off the

Humira. At that point...I decided not to go back on it....as it didn't seem

to be as effective as it was in the beginning.

I was getting the Humira from the drug company, free. I didn't have a

prescription drug plan at that time. They were doing studies...that may be the

reason they were sending me the drug at no cost. Like you mentioned, many drug

companies have plans for people who can not afford the cost and do not have a

Rx insurance plan. I believe most doctors will help in sending paper work.

From what I understand, several of the anti-TNF drugs are now approved for

spondy diseases. Medicare and Medicaid, included. Sometimes,

unfortunately...you

have to be a squeaky wheel to get help.

Hope you have as good a success as I did...at least in the beginning. I've

found that we usually will have to try many things and change as our body gets

used to the different drugs. Some are lucky...and find one that works well

for many years. You might be one of those. :-)

Best wishes, Connie

************************************** See what's free at http://www.aol.com.

[Guest guest]

After being on Enbrel for 2 years, I went off for 2

Months to see if my Liver Enzynes reading would

improve,they didn't improve and I was back to my old

misery without Enbrel.I get Enbrel through the VA,but

I understand the cost,but to me it's a MIRACLE.

Sincerly,Reggie

-

[Guest guest]

But, I was wondering, how much weight have

you

> gain since being on Enbrel?

>

> Barbara

>

The weight gain for me was about 20 pounds,but the effect it had on

my AS is a Miracle and I've had 40 years of this Rollercoaster.

Sincerely,Reggie

[Guest guest]

I just started on Enbrel last week......oh my god what a difference.

It has been unbelievable for me.

Enbrel has a Quick Assist program. They issue a card that you activate

and use at the pharmacy. I believe, the first month, they pay up to

$350.00, the second month, $150.00 or something like that. So, my

first month was free. I wouldn't care if this drug cost me $500.00 per

month, it has given me my life back.

As far as weight gain, I do not know. But, ever since my Reiter's

flared up again, I have lost weight.

Lance

[Guest guest]

Hi Barbara,

My problems go back many years, but in the 2 years or so before I

got any kind of " real diagnosis " I was just generally unwell. I had

a severe weight problem for years, which of course they blamed all

of my joint problems on. But in less than 2 years, I lost 167 lbs.

That was what actually made my doctors take notice of my problems.

Then, if you can believe it, 2 of my doctors wanted me to gain back

10 lbs. I really fought them on this issue, but I didn't want to be

labeled as an " uncooperative patient " . Their 10 lbs. ended up being

17 lbs., but that was still ok because I was still well within my

weight range.

When I started Enbrel in July, I gained another 20 lbs. really

rapidly, in spite of not changing my eating habits & still

exercising within my capabilities.

I was taken off the Enbrel for 6 weeks starting in Nov. because of a

stubborn upper respiratory infection & I was undergoing a biopsy.

When I resumed the Enbrel at the end of Dec. I then gained another

20 lbs.

I have maintained this weight since that last weight gain, and while

I'm glad I haven't gained anymore, this weight will not budge at all

no matter what I seem to do.

Some reports I've read say some people LOSE weight on Enbrel, but it

seems to be men who lose the weight (go figure!), but gaining seems

more common for women.

The nurses at Enbrel confirmed for me that weight gain is a

legitimate side effect, which of course, not everyone experiences.

My rheum. tried to tell me it isn't from Enbrel, but I told him I'm

eating & exercising the same way & it is too coincidental & rapid

not to be from the medication.

I took Prednisone when I was a teenager & have also taken it short-

term since. Enbrel I'm sure is not even close to causing the

kind of weight gain that is almost a certainty when you take

Prednisone.

Please don't let my post discourage you from trying this treatment.

Not every person experiences the same side effects. I am 45 years

old, so my age isn't exactly helping me in this weight loss battle

either.

Obviously since I am " predisposed " to have weight problems, it

probably affected me more. But it's very discouraging because if I

gain all the weight back, the doctors will once again be on me about

the extra weight on my joints.

When I discuss this with my rheum. he uses the argument that I could

weigh 100 lbs. & not be able to move if I choose to quit the Enbrel.

I'm just frustrated because for years they harped on me about my

weight, then I lose it & they tell me to gain some of it back. They

put me on medication that helps one problem & creates another & when

I want to discuss the weight now, none of the doctors want to talk

about it.

I'm sure they will if I end up gaining all 167 lbs. back.

Enbrel has made a huge difference for millions of people, including

me. It could very well do the same for you & hopefully you will be

spared any side effects.

If I don't get the situation with my rheum. & the copay issue worked

out, my decision will be made for me.

It would be wonderful to have the best of both worlds, the relief

that Enbrel brings & be able to maintain my weight. But things

rarely ever work out that easily for any of us it seems.

I hope you find relief with your treatment, whichever one you choose.

Janet

[Guest guest]

I just saw my rhuemy today and he's starting me on 50mg Enbrel as soon

as my TB test is read on Monday ( I guess that's a requirement to be

tested) I've been on MTX for 2 months with no improvement so he's

adding this to my regimen. What kind of side effects can I expect? The

MTX makes me fatigued and nauseated by itself. Also, does anyone else

have severe pain but no swelling? It just seems that the doctor is

always looking for swelling but never finds any even though I have more

areas of pain everytime I see him...

Any advice is apprectiated : ) ~

[Guest guest]

I had no side effects from Embrel, except for the possibility that the headaches

I've had since I was a kid seem to have gotten just a little bit worse (though

the rheumy doesn't think their increased intensity is from Enbrel.) I had a lot

of swelling and within 24 hours of my first shot, it started disappearing. The

pain relief was slower to come and was gradual, not overnight - at least for me.

Just one day after about 4 to 6 weeks woke up and suddenly realized I was doing

things I hadn't been able to for months.

Hope it works for you. The shots are virtually painless as long as you ice

first and inject very slowly. Abdomen is a good place to give them. Just

alternate sides each week.

Joanna Hoelscher

630-833-7361

[Guest guest]

I too have pain that is not mirrored by swelling, and my rheumy seems

to evaluate only my swelling. It really bothers me that my pain is so

invisible. I will try harder to communicate this disconnect to my

rheumy next visit.

[Guest guest]

- the Enbrel should have fewer side effects than the MTX. You

should not notice any increase in nausea or fatigue. In fact, I would

bet you will feel a whole lot better pretty quickly!

Yes, I have pain without swelling most of the time. Only rarely do I

have visible swelling. Also, my sed rate and CRP are almost always

normal. You're not imagining things - we understand.

regards,

sherry z

[Guest guest]

Keeping my fingers <painfully> crossed that it works for me too! I've

had no pain relief since this started suddenly in August of last year.

It would be nice to be more active again :-)

I decided to start reading up on the Enbrel last night online...some of

the info is pretty scary when they talk about the risks. Maybe I was

better off not knowing!

[Guest guest]

Sherry,

Were you able to eventually come off the MTX and just take the Enbrel?

It would be nice to only have to give one injection per week instead of

two. I'll have to ask my rheumy about that at my next appt. Especially

since the MTX prohibits you from having an occasional cocktail...I'd

love to be laying out by the pool at our friends house sipping

margaritas again this summer!!

The reason I was questioning the swelling is that he always looks

surprised to see that I'm in such pain but nothing is swollen. Should

I expect to eventually develop swelling if the MTX and Enbrel combo

don't work? Geez, I hope not, I'm still searching for work and that

might really put people off if I look like I may have trouble

performing at work everyday.

Take Care, ~

>

> - the Enbrel should have fewer side effects than the MTX. You

> should not notice any increase in nausea or fatigue. In fact, I

would

> bet you will feel a whole lot better pretty quickly!

>

> Yes, I have pain without swelling most of the time. Only rarely do I

> have visible swelling. Also, my sed rate and CRP are almost always

> normal. You're not imagining things - we understand.

>

> regards,

> sherry z

>

[Guest guest]

, I had to go off the MTX because of bad blood work. I take

Humira, which works similarly to Enbrel. My rheumy says you will have

better results taking both, so I wish I could take both. I think it's

also true that one of the biologicals may work for you *longer* if you

take it with MTX. Something about the MTX keeping the immune system

from finding a way around the Enbrel/Humira.

regards,

sherry z

>

> Sherry,

>

> Were you able to eventually come off the MTX and just take the

Enbrel?

[Guest guest]

Sherry,

I just had my first Enbrel injection this morning. I felt a little

dizzy right after but it may have just been anxiety. So I'm hoping

this will be a turning point for me to start getting some pain

relief and for my husband to worry less about my health.

Have a wonderful day,

[Guest guest]

, just don't be surprised if it takes a while for the Enbrel to

start to work. It can take 8-12 weeks, so don't panic if you don't see

results right away.

regards,

sherry z