Any success with biologic drugs?

[PAHands]

Any information or advice is much appreciated! I am a newbie here, have been on and off of methotrexate for 11 years (off when I didn't have health insurance) for psoriatic arthritis. The arthritis is mainly in my hands (where it is still active/swelling and why dr. wants to try biologics), right elbow and left hip/back. I am up to 25mg of mtx/week and have been given information (packets, info cds, etc) on Remicade, Embrel and Humira. To tell you the truth, I am scared of these after reading the info and searching the internet. Any of you on these biologics have psoriatic arthritis? The arthritis sites I found are mostly people with rhumatoid arthritis. I also have had mild skin psoriasis flareups when not on mtx or really stressed. I do have insurance, not sure if it will cover, thats the next step. I am so glad I found this board!

[nla]

Yes, it's a hard decision to make. I have had pustular P on hands/feet for nearly 15 years now. I never really treated it too aggressively. I have never been too "big" on any medications. About 2 1/2 years ago I was diagnosed with PA in both hands (and spine). I use my hands for a living so it was pretty frightening to discover by the time I had a diagnosis I had the PA for several years before that :eek: By the time I found out what it was I already had significant and permanent joint damage, bone loss in 4 fingers (not to mention deformity). Before researching the PA I never, ever imagined it could be so incapacitating or disabling. I am allergic to sulfa so several of the drugs normally used were "out" for me. For some reason, I did not want to take MTX. Anyway, after much searching and "talking" and doctors' meetings, I started Enbrel. I have been on it for nearly 2 1/2 years now and it has helped me tremendously! Most days I forget I even have the PA. It has been a true God-send for me. In the beginning I got a headache once in a while after my shot. I'm not sure if it was the stress of thinking about BEING on the Enbrel or a true reaction. Other than that I have been very lucky with no side effects. Saying it has given me my life back is no understatement. Of course, the permanent damage I already had is irreversible. It has done absolutely nothing for my P, though. Actually, the PA is my main concern so I am happy. I still worry about possible long term effects in the years to come. You have to research and weigh the benefits against the risks. It is a hard decision but for me, personally, not being able to use my hands at all was not an option I was willing to live with.

Good luck and I am sure you will be reading both pro and con stories about any of the biologics (as you most likely will with ANY medication). Try to keep everybody's personal opinions in perspective and don't let it all overwhelm you. Personally I am glad that I took the risk but you must still remember that it is a "drug".

Good luck and if I can give you any more information, please feel free to send me a PM.

Nancy

[RichJ]

hi pahands,
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.

try and have good night all

richard

[nesielheum]

Hello PAhands,
Welcome to the NPF message boards! Many of the regular participants on these message boards are attending the 2006 NPF Conference (http://www.psoriasis.org/events/conference/?PHPSESSID=b57312e5d805c07325cb5eebb4671ff2) in Portland, but rest assured there is a good chance that you will get plenty of positive and negative feedback regarding biologics, if not this weekend, then early in the coming week.
I have been taking Enbrel for 3+ years to control my PS and I have had very good success with no side effects. I do not have PA so I won't be much help there, but the NPF website offers some excellent fact based information on Psoriatc Arthritis (http://www.psoriasis.org/treatment/psa/) as well as DMARDS and biologics (http://www.psoriasis.org/treatment/psa/dmards.php) for treating PA.

Welcome!

[Stillworking]

I have had really bad P for half my life (from head to toes) and was diagnosed with PA 3 years ago. After finding a good rhuemy and getting insurance approval I started on Remicade. It has helped a lot for both P and PA. As a nurse, I spend 8plus hours a day on my feet and have been able to continue working full time. Without this med, I would probably be in a wheelchair instead of pushing them. Insurance coverage as well as the aggressiveness of the PA was why I started on Remicade. Because it is done as an outpatient, my insurance covers 100%. Self injectables such as Enbrel were covered at only 80%. This is a good med for me as they can adjust the dosage for the best effect for you. The med is also calculated according to your body weight, so you will get more med is you weigh 160 pounds than if you weigh 100 pounds. As i have not been on any other bio., I can only give you an opinion of this one.

[baldwin123]

There are several on the boards here who have PA and are on biologics (Remicade, Enbrel and Humira)... its not an easy decision to make whether to go on a biologic or not... diet, antibiotics etc might be other things to try if you are looking for alternatives, and you can read about those by doing a search... Untreated PA can lead to joint changes, which are permanent... I have PA and have been on Humira for 17 months... Since I felt good on the Humira for the first 9 months, I really wondered if I was overreacting to the PA diagnosis, and treating this disease with more aggressive meds than were actually needed... but then my humira funding was interrupted and I was off the med for a month, and during this time I had a bad flare...It really hit home to me how severely PA could affect my ability to live my life, care for the kids and just function...when the funding was straightened out, I went back on humira with a new respect for how it had been helping me. After saying that though, I still have symptoms of the PA, it is not a cure... I don't want to keep adding meds with more side effects if there are less risky treatments which would be as effective... so I read this board and check out what is posted here so I can make the best choice for me... it is not as simple as meds or alternatives, which do you choose- I want was is going to help me to avoid joint damage and function in my life as best as I can... I feel like at this time, the Humira is helping to keep the PA in check better than if I were not on it... PA progression varies (according to what I read here) from person to person in the joints it affects and the severity and speed of progression... so no one can decide for another what treatment is best... read and learn all you can about all the options for treating the PA, and then you and your doctor can use your best judgement to decide what is best for you at this time... Take care, and good luck :)!
Jen

[Kimbercat]

You've gotten some good advice already, and I'm sure more will be responding to you as they return home from the conference. It is a difficult and very personal decision to try using any of the biologics. That said, you need to research the risks (and there are some) vs the benefits of each drug, or any other treatment for that matter.

Of the three drugs that you mentioned, Enbrel has been around the longest, so you can get more information about the safety of using this drug over a long period of time. Enbrel is the only one of the three approved for use on either pa or p alone.

I personally am on Humira for p (not diagnosed with pa, but suspect it), and have had wonderful results, but unfortunately this isn't the case with everyone. There are very few side effects with Humira, but there are some serious ones in very rare cases. I've never had any problem with it at all, and I've been on it for about 3 years now. I would say that I'm 99.9% clear. I'm getting the Humira through a clinical study, as it is not yet approved for use on p alone. The decision has already been made to continue the study for an additional 5 years to get a better feel for the long term side effects.

Remicade is given by IV, and is also approved only for pa at this point. Some people who have tried everything else without results have had good luck with Remicade. The main issue that I have heard people mention with this drug is similar to a severe allergic reaction (anaphylaxis) if the drug is stopped and then re-started. Most doctors are familiar with this issue, and know how to safely treat it, but it is something to be aware of. That being said, Remicade is considered one of the most effective treatments for pa and p (in clinical trials for p). In addition, it's sometimes easier to get insurance approval for because it is administered differently than the others, and is sometimes covered under a different part of your insurance policy.

Some doctors will also add mtx along with these biologics in order to prevent your body from developing antibodies against these drugs over a period of time. Obviously your goal is to find the safest treatment with the best efficacy and fewest risks. Take some time reading through these boards for information on all of the treatments available, then review your information and what you feel the best choice for you is with your doctor, and make an informed decision that you are comfortable with.

I hope some of this has helped, and I'm sure you'll have many more responses. Welcome to the message boards, and good luck in finding what works well for you. :)

[shea lynne]

Hi, I have been on humira starting this May. I have pa with 2 types of psoriasis. The humira has helped both arthritis and psoriasis. I have had little to no problems with humira. I am on trexate as well and have nausea from it. The humira seemed to help the trexate work better. I was almost 90 % covered with psoriasis and now the breakouts are at about 20 % or less and come and go. I do fill much less pain from the arthritis now to.I am still working full time and its thanks to humira! Good Luck!

[lulu'smom]

hi!

I have had P for 20 years and PA for 2 years. Pretty much immediately after my diagnosis for PA I started Enbrel. I'm now on Humira. Both worked well for my P and PA, although I have a bit of breakthru pain on Humira. I'm now back to weekly instead of bi weekly injections.

The decision to go on a bioligic is a big one! I had to weigh quality of life v.s. potential risks. I feel good about my decision, and feel physically much better than I did 2 years ago. I also had a feeling I had overreacted to my initial diagnosis, and I think this is because the PA was so much better. On the days that it is still bad, I really am thankful to be on a biologic.

Good luck,

Nancy

[heatherf]

Hi! Just a quick note to tell you I have PA and Plaque P and have been on Enbrel for 2 1/2 years. I achieved total clearing and relief from PA within months. As for the PA which concerns you the most, I was affected in both knees, back, neck and jaw. I barely realize I have PA now. I now exercise or walk almost every day and the only pain I have is my back if trying to do crunches and my knees still groan a little during squats. Other than that, during normal every day living I don't notice it at all! It was a hard decision for me too but since I have two children I decided to take the risks as Enbrel is supposed to stop further joint damage. I figured it was my best shot to be an active mom for as long as possible. I've had no side effects so far and am crossing my fingers that I made the right decision. If anything, it has given me two 1/2 great years with my kids! Heather

[evergreen]

Hey PAHands! I had a major onset of PA in my thumbs about a year ago and was prescribed 7.5mg MTX weekly, on my second visit to the rheumy, my thumbs seemed to be getting worse, so I was prescribed Humira. On my third visit, the symptoms had stopped progressing; after a few months, it seemed to be REVERSING!!! It's been almost a year, my spine, sacrum, hip, thumbs & wrists all respond well Humira. I have no known or noticeable side-effects.

FYI Kimbercat: Humira was approved for use with PA last year and has recently been approved for Ankylosing Spondylitis.

Take care~

[SCCatman]

I would not advise anyone to start remicade at this point. You have to take it at a doc office, the infusion takes time, and starting with the second full treatment, there is a risk of alergic reaction.

I am on Enbrel, it has done a good job with my P, and after 1 1/2 years, recent xrays show zero joint damage.
Humira is newer, and my understanding is closer to bening a "human" protien, and only needs to be taken every other week, instead of every week.

My current insurace puts all P on humira, but allows PA patents to use Enbrel.
I stayed in Enbrel because that is what I was on, and it was working.
If I was starting from scratch, I would consider Humira.

Some people do better on one than the other, so if one desn't help, try the other.

BTW, you can do Enbrel while on MTX. I asume the same is true for Humria.

Dennis

[cajungirl]

I've been using Remicade for a couple of months now and it's just been a lifesaver. I feel like I can enjoy life again. I also take MTX in addition to the Remicade. I don't have any complaints on side effects from the Remicade (I feel fatigue when I dose the MTX every week). I was nervous when I started it, but I just felt that it was a chance I was willing to take to have a better quality of life. And I'm just so glad I did!! I started feeling better in 2 days and I just thought that was amazing!

If you have any questions, please let me know.

Celeste

[Emsmom]

My daughter was on Enbrel for 2 years before switching to Remicade. We LOVE Remicade!!! Enbrel was fantastic, but she's had an even better response to Remicade. Biologics gave her childhood back to her. When she first started responding to the biologics (She was 10, almost 11), she told me that she never knew it was possible to feel so good! A sad but very powerful statement from a child.

Liz

[Momelie]

I've just started Remicade, and have had 2 infusions, the third (4 weeks) at the end of this month. I've had very good results, but I did the same on Enbrel, and it quit working after 8 weeks. I have high hopes, though.

My PA is in my hands, hips, ankles and feet, and while I don't think I can reverse the damage in my hands, it doesn't hurt as much to type these days.

Good luck to you!

[RichJ]

hi momelie,
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

[Momelie]

Thank you, Rich!

I've been lurking since my diagnosis last October, and just now figured out how to register and post.

[ouchyk]

momelie,

Welcome and I have a question. Do you do MTX along with remicade for your PA? I'm glad your hands feel better and sorry for the damage...

Thanks,
Karen

[baldwin123]

Just wanted to say welcome too!
Jen

[Momelie]

Thanks for the welcome!

No, I can't do MTX at all, due to liver failure as a side effect of eclampsia several years ago. Kind of put the kibbosh on a lot of meds, LOL.

I've been on every NSAID known to man (my original diagnosis was carpal tunnel with trigger fingers - NOT, but they didn't find that out until surgery), then after diagnosis was on Sulfasalazine, then Enbrel. Just started Remicade in July, and have had the first two infusions with no trouble, but no big results, either.

My next infusion is the 31st. I've got my fingers as crossed as they're gonna get!

[mamaooch]

Remicade has been wonderful..I have had 2 infusions and my ribs are not in constant pain like they have been for the last two years.

Welcome to the boards.
Cindy

[wildflowerAnn]

Congratulations Mamaooch. I'm glad to hear that after only two infusions, it has helped. Also good to know that your rash is sun sensitivity and not drug-induced autoimmune SLE.

[mamaooch]

Congratulations Mamaooch. I'm glad to hear that after only two infusions, it has helped. Also good to know that your rash is sun sensitivity and not drug-induced autoimmune SLE.


Yes the rash is gone! After using the super sunscreen and using kenalog cream, the rash is totally gone. I am back from the OBX and I want to go back. The most incredible vacation ever. I caught a really big flounder last night. Fishing Rocks!

Have a good evening!
cindy

[kimie]

I've had great results with Enbrel. I have plaque & a little PA. As some folks have stated, sometimes the benefits outweigh the risks. It took me awhile to convince myself, and when the biologics came out targeting specific areas vs. the whole immune system I was game!

Unfortunately, I developed those nasty anti-anti-bodies (built up resistance) to Enbrel, and possibly biologics in general (tried the Humeria, too, with little result). As I write, Derm is recommending Remicade next and and is checking with insurance. But don't let me disuade you! I am a small percentitle. The other folks in this thread have had tremendous results and contiune to do so - for years! I'd say go for it. If I had to do it all over again with Enbrel knowing that I'd resist, I'd do so! It was great shaving my legs w/ a razor and losing a pint of blood each time for almost a year!

I am also a relative newbee - but have known about NPF for years. I'm glad I'm trying to be of more help to my fellow P & PA sufferers!

Kim