ENBREL

[anne kennedy]

Has anyone been using Enbrel?
If so, what is your opinion of the drug?
Any helpful hints on using the drug in terms of storage and disposing of needles, etc.

Thank you

[lett]

Hi,

I am on a waiting list for Enbrel. Have you started the drug yet...anxious to hear peoples side effects. I hope all goes well with you.

[rhop]

Hi, Anne - Your MD's office should give you very explicit directions for using this drug, or any other drug for that matter. I use methotrexate, giving myself home injections. The insert that comes with a drug gives more info than you ever want to know, also.

You MUST dispose of needles in approved sharps containers - bright red, puncture-proof boxes made for this purpose. Many state's laws require this. Your MD should instruct you in this. My rheumy's office would give me a sharps container to take home, and I could bring it back in when in was full. Also, here in Washington state, at least in my county, the recycling centers and landfill sites provide free sharps containers, and you just bring them back there when full. Lastly, they are available at all drug stores and medical supply stores for sale. However, I would check into free ones first; but you aren't going to be using that many needles, so the cost wouldn't be prohibitive - I am diabetic, so I use 3 a day, and go through them quickly. That's why I like the free ones! Keep us posted on the results of the Enbrel. Rosemary

[lrobins]

I, too am on the waiting list for enbrel.
Anyone taking this have comments for us?
Thanks,
Lisa

[whatsup]

Just curious, I've been on the waiting list for Enbrel since the end of January. According to an article on the Arthritis Foundation's website, no new patients have received the drug since December 2001. Is anyone, besides me angry that the NPF has hyped this drug so much in the last three months but it is impossible to get? I know, I'm a little bitter!
Stacy

[kmfitzpatrick1]

I also am on the waiting list. My doctor just signed off and submitted my application within the last two weeks. Hope to hear from someone on the results if already using Enbrel. Maybe the results are so good that no one currently using is reading the message board anymore. (-:

[bj4st]

I have pustular psoriasis and PA and was already on MTX, Celebrex, and Prednisone when my rheumy added Enbrel. I was fortunate enough to be accepted in the Enbrel program and what a difference! I am virtually pain and psoriasis free. I feel very fortunate to have these results and am looking forward to trying to decrease the dosage of MTX & Celebrex and getting off Prednisone completely in the near future.

It is my understanding that the demand for Enbrel is more than the supply. Last week I received a letter from Enbrel that people who are enrolled in the program may see a short-term delay in having prescriptions refilled from several days to a few weeks during April & May. The letter went on to indicate that the long-term supply will be enhanced the with approval of expanded production capacity.

I don't know if the results I am experiencing will last forever but I really appreciate and am thankful for the results I am experiencing at the present.

Please don't be angry with NPF. I think they have done a wonderful job of keeping us informed of treatment options. It is my understanding that the reason for the Enbrel program is so that there will be a supply of the drug available for people who are already on it so that demand does not out weigh the supply. I don't think even the drug company knew that there would be this large of demand for the drug.

I am very thankful for this website and think they are doing a wonderful job in keeping us informed of all the treatment options.

I hope your acceptance into the program will be well worth the wait.

bj

[lett]

Hi,

Enbrel has a website. Enbrel.com. They do have a toll free number. I called and they have a nurse on site to talk with you. I do know someone personally who has taken this drug for six months and is doing very well with it. They do get a rash after injection but is subsides in a few days. I am still waiting myself. Maybe our Rheumy's can push for us. Good luck everyone and keep me informed.

[CalamityJane]

Hi, new member here. I belong to another forum where one of the members has PPP (as I do). Her experience with Enbrel has been horrendous. She learned to inject herself, but broke out in a rash.

Now, she has no pustules/blisters, or peeling, but her skin has been 'stripped' and is totally raw. She is in a great deal of pain, cannot walk, and life has become a misery for her. She sees her derm weekly, but there's not much that can be done at this point. Currently in the beginning phase of Dapsone.

After reading her story of horror and pain, I would never take Enbrel. My derm also told me that in his experience (Director of Proriasis Clinic here), Donovex does not work.

I realize PPP is a rare form, so I do apologise for interfering in this thread, if it seems inappropriate.

[justme41]

i just recieved my Enbrel this week and waiting on injection training from my dermy. It took about one month for my insurance to ok it. if you can believe this but my insurance covered 100% with no co-pay. I was shocked! I now have a 6 month supply in my fridge. But I am alittle nervous about the side effects of it.

[RichJ]

hi CalamityJane,
sorry i can't help much but welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

have good night all

richard

[SCCatman]

There is currently no waiting list for Enbel. That post was from 2002.

*** Allmost every gets good results from Enbrel. Cases of serious reactions or people getting worse are rare ***

* But keep in mide that a small percetage go blind, get MS, or rare forms of cancer. *

There are some newer drugs such as Humira which are simlar but a little better, depending on exactly what type of P or PA you have.

Granny Fanny did not get any better or worse with Enbrel, and when she stoped she had a bad flair. I think that was because she had a sub clinical infection. The only thing that helped her was when she a=started antibiotics.

One person tried to cut down on Enbrel without his doctors help, and flaired when while taking 25 mg at a time. You must do 50mg at a time, and take them further apart to cut down.

The people who have had problems with Enbrel such as getting worse or haveing alergic reaction are quite rare. Almost everyone see major improment.

A lot of use have had rashes or red spots for 1 or 2 inches around injections sites, but anything beyond that is very rare.

I would only do Enbrel as a last resort.
I ran out of other resorts 1 1/2 years ago, and have had only good results from enbrel. I would advise anyone to tak eit only as a last resort. But many of us have run out of other resorts, and would be unable to function with out it.

Dennis

[CalamityJane]

hi CalamityJane,
sorry i can't help much but welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

have good night all

richard

Hi Richard, thank you for your welcome. I have met some wonderful people, that I now call friends. Having said that, the palmo plantar pustulosis is something I never ever thought of having, never even heard of it, and neither has my pharmacist.

It is a complete nuisance and deprives me of my life, as I knew it, and my love of walking (when it's acting up). It has me freaked out, and I just plain *hate* it.......

[RichJ]

hi calamityjane,
your welcome. there are alot of caring people here

have a good day all

richard

[NL]

I've been on Enbrel a little over three months with good results. I had no problem getting it once I had the rx and insurance straightened out. I haven't had any side effects aside from being tired and the sniffles. Who knows if those are actually from the Enbrel. I would say I have cleared at least 70% but I'm still hoping for the 100%. Let me know if anyone has specific questions.

[luvwinnie]

Just curious, I've been on the waiting list for Enbrel since the end of January. According to an article on the Arthritis Foundation's website, no new patients have received the drug since December 2001. Is anyone, besides me angry that the NPF has hyped this drug so much in the last three months but it is impossible to get? I know, I'm a little bitter!
Stacy

Why is it hard to get for you? I started in June 2004.

[luvwinnie]

There is currently no waiting list for Enbel. That post was from 2002.

*** Allmost every gets good results from Enbrel. Cases of serious reactions or people getting worse are rare ***

* But keep in mide that a small percetage go blind, get MS, or rare forms of cancer. *

There are some newer drugs such as Humira which are simlar but a little better, depending on exactly what type of P or PA you have.

Granny Fanny did not get any better or worse with Enbrel, and when she stoped she had a bad flair. I think that was because she had a sub clinical infection. The only thing that helped her was when she a=started antibiotics.

One person tried to cut down on Enbrel without his doctors help, and flaired when while taking 25 mg at a time. You must do 50mg at a time, and take them further apart to cut down.

The people who have had problems with Enbrel such as getting worse or haveing alergic reaction are quite rare. Almost everyone see major improment.

A lot of use have had rashes or red spots for 1 or 2 inches around injections sites, but anything beyond that is very rare.

I would only do Enbrel as a last resort.
I ran out of other resorts 1 1/2 years ago, and have had only good results from enbrel. I would advise anyone to tak eit only as a last resort. But many of us have run out of other resorts, and would be unable to function with out it.

Dennis

Wow, how did THAT get resurrected? SO OLD.