Has anyone not responded to Enbrel 25 2x's a week...

[Saxmom]

And moved up to Enbrel 50 2x's a week and gotten better? Or at least had better results? Is it possible for a flare to have a flare? This flare started several months ago and then calmed down somewhat and now has gotten so bad that I'm having trouble using my hands and also walking. Are we allowed to be sick and tired of being sick and tired? And why do people always seem to want more commitments from us just when the flare is getting worse? And why are we so very good at hiding the pain?

OK so I don't really expect answers to most of these questions, but if you have any experience with Enbrel in higher doses, I'd really like to hear from you. I see the rhuemy on Thursday because I am not tolerating this new flare and I'd like to have some info before I walk or rather hobble in to see him.

Thanks for always being out there.
Paige

[islandgirl]

:( Paige, aren't you scared to be on Enbrel? The side effects can be so bad. It is very scary! Islandgirl :eek: undefinedundefined

[strmchaser]

Hi Islandgirl, I have been on Enbrel for 14 months and have had no side effects at all. Linda

[Saxmom]

I'm more afraid of this disease then I am of any of the drugs.

[docmks]

:( Paige, aren't you scared to be on Enbrel? The side effects can be so bad. It is very scary! Islandgirl :eek: undefinedundefined

The prospects of having permanent joint damage are pretty scary. In PA, permanent joint damage is a very real possibility and the damage can be done before you even know it has occurred. I've been on Enbrel for almost 12 months now. Has it lowered my immunity. Yes...that's the point. You do have to be careful about infections. Yes, there probably are other side-effects for some people, and we don't know the long term effects of biologics. However, those of us who are on Enbrel have weighed those risks against the probability of developing joint destruction, loss of mobility and decreased range of motion. These are personal choices that we each have to make for ourselves.

MK

[ttiben]

[QUOTE=islandgirl]:( Paige, aren't you scared to be on Enbrel? The side effects can be so bad. It is very scary! Islandgirl :eek:

Not if you do your homework, the only side effect I have experienced is the first two injections I got a headache but that has since passed. Where are you getting your information? If it is from your Dr. then its time to find another one who keeps up w/ current treatments. If they dont do thier homework to keep up w/ Science then they are not doing what you are paying them to do. Keep in mind if you see a commercial they are required to state the absolute worst side effects. My niece is a phamacist w/ a very prestigious cancer center if she says its OK to use it good enough for me. Lack of knowledge is usually what make anything "scary" I was having to walk w/ a cane within two days of my first Enbrel dose I was walking normally w/ very slight pain. What scares me now is to NOT have Enbrel.

[docmks]

Paige,

I am so sorry to hearing about your flare within a flare...and yes, it can happen that way sometime, and it is very painful. I had a bad flare last fall with my hands that got worse, and it involved P on the skin of my fingers and swelling and loss of mobility. I have always been on 50 mg injections. I take 2 injections per week. I have flared through Enbrel, and I made the decision late last spring to give MTX a try, something I had resisted for a long time.

So, I don't have experience with Enbrel at a lower dose; but I did have to stack it with MTX. I has helped my skin, a lot, and I feel like it is slowing down the progression of the disease in my joints. I still have pain and stiffness. Some days it's worse than others. Possibly this is partly due to the fact that I have "fibromyalgia" too. But pain is pain and I, too, get sick and tired of being sick and tired. It's part of the process, the emotional and physical rollercoaster of this disease.

I am so glad that you got into see your rheumy. That's the smart thing to do when a flare keeps flaring and starts to get worse. Make sure that your doc helps you manage your pain adequately, that's an important key. We are good at hiding the pain because that's how we're brought up, at least most of us, to keep it stuffed inside. A great friend walked up to me the other night and said, "you look healthy!" Well, my skin isn't flaring too much, and I was sitting down when she walked up, so I probably did look healthy. I didn't say anything, because I just didn't want to take the time, but I started to say, "yeah I look healthy and I hurt like hell, go figure." Anyhow, I wish I could offer more in the way of advice, but I am happy to offer support. Hang in there,

MK

[grannyfranny]

And moved up to Enbrel 50 2x's a week and gotten better? Or at least had better results? I can't help with E. because it did nothing for me. Is it possible for a flare to have a flare? This flare started several months ago and then calmed down somewhat and now has gotten so bad that I'm having trouble using my hands and also walking. Are we allowed to be sick and tired of being sick and tired? Yes! I am sick and tired of being sick and tired.
And why do people always seem to want more commitments from us just when the flare is getting worse? And why are we so very good at hiding the pain? Don't try to hide the pain! Everyone will think you are OK. Take care of yourself, first, unless you have a baby! Tell others to do more for themselves. Go on a strike if necessary. Don't volunteer. Learn to say NO!

OK so I don't really expect answers to most of these questions, but if you have any experience with Enbrel in higher doses, I'd really like to hear from you. I see the rhuemy on Thursday because I am not tolerating this new flare and I'd like to have some info before I walk or rather hobble in to see him.
Don't worry about having to "hobble". Use a cane if necessary,,,,,,makes you feel more stable and people get out of your path! Wait and hear what your doc has to say. I think we all know that these meds do not work the same for everyone. And sometimes they seem to work and then quit.
Thanks for always being out there.
Paige

I hope something good happens for you.

[Shawn116]

Paige,

I'm sorry to hear that you are having so much trouble, believe me we all understand how painful this disease can be. To not be able to walk well and have trouble using your hands.... that is me right now. On bad days I feel like my hands and feet are broken. :eek: On the good ones it's more like I'm walking in a rock bed. :( I'm not sure if I am still in a flare or not, because only a month ago my whole body was involved. Only time will tell if this is the new me....

In any case my experience with Enbrel is that I started with 4x 25ml a week. I started it for my p and was unaware that I was already showing signs of pa. My insurance decided to fallow FDA recommended dose after 3 months and dropped me to 1x 50ml a week. With in a month I had to have a surgery (not related so my dr. says) and went into a (oh my gosh shoot me now!!!) flare. Now I'm back up to 2x 50ml a week, mtx and a slew of other meds. I haven't experienced any side effects from the Enbrel that I know of, but I do question if it is still working for me. I will discuss this with my rhuemy on Thursday as well. If you were tolerating the lower dose well, I would think you could benefit from a higher dose. You should discuss your concerns with your rhuemy and ask about all your options. There are quite a few out there. Good luck and please let us know how things go.

[RichJ]

:( Paige, aren't you scared to be on Enbrel? The side effects can be so bad. It is very scary! Islandgirl :eek: undefinedundefined
hi islandgirl,
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 a good night all

richard

[dmedonis]

Hi Paige,

I'm very sorry to hear about your flare. And yes, I definately think you can have a flare and get worse...

I started Enbrel 25mg 2 X/week in August of 2004 following a PA diagnosis, terrified of potential joint destruction. I've had P for 40 years (I'm 49 now). Enbrel was a miracle for most of my skin, and helped a lot for the PA. I remember many days when there was a spring in my step I hadn't felt in a while. However, during this time, although improved, i still had bad days, some when I was in awful pain. I kept nagging the rheumy for something for the pain on bad days, not wanting to take designer or traditional NSAIDS on a regular basis if I didn't need them. He ultimately prescribed Darvocet, which helps for those bad days. Because it's a narcotic opiod, I'm terrifed of taking it too often. The doc prescribed 60 tablets last November, and I have about 8 or 9 left in the bottle. Some days I just suck up the pain, and opt for a few (or several) glasses of wine when I get home from work. Maybe not the best choice.... My advice to you is get something for the pain, and take it when you need it.

And yes, I am absolutely sick and tired of being sick and tired. Chronic pain is difficult, and the fatigue, for me, has been dreadful, and is one of the most frustrating parts of this disease. I need to exercise more, especially because I'm overweight, but exhaustion and pain are very strong de-motivators....

While my initial dosage of Enbrel certainly helps (that was made very clear when I had to go off it last spring for 2 weeks after some dental surgery, and could barely move by the time i went back on it), after about 10 months it seemed to "plateau". I was having more pain, more often, in more places. So I decided with my rheumy to double the dose.

I have been on 50mg 2 x/week for 6 weeks now. It seems to be helping a little. The pain is by no means gone, but so far, less, and I've taken no more than 2 Darvocet in the last 6 weeks. This "doubled dose" trial will be for 90 days, and then we will re-evaluate. It appears my next step may be Remicade. My rheumy also prescribed the NSAID Relafen last week, and I just filled it, and haven't tried it yet.

I wish you the best, and hope this has helped a little. If you have any other questions, feel free to PM me.

Doug

[Saxmom]

I see the doc later this morning and I'm wishing for immediate relief which after years with this disease I know doesn't happen. Yesterday was a pretty good day which had me thinking that things weren't so bad but then this morning came. I can barely move again.

Anyway, Doug your story sounds pretty similar to mine except that I'm allergic to all NSAIDs so I have to use narcotics. I also learned a long time ago that it is very unusual for people with chronic pain to become addicted to the drugs. I take vicadin 750s 2 at a time up to 5 times a day. I'm really hoping that the doc will let me have something stronger but they really don't like to do that even short term.

So life goes
Paige

[ouchyk]

Paige,

Hang in there. & let us know how you make out at the doctors.

Wishing you relief & comfort,
Karen

[crimekate]

Hi Paige,

Is it possible for a flare to have a flare?
****

Absolutely!! I would get the flare-within-a-flare periodically, they would generally last 4-5 days. The first few times it happened to me it was really frightening, because I thought that things were further deteriorating... then I gradually came to recognize them as flares-within.

Regarding pain meds, I have been taking narcotics for over a year (thankfully able to reduce them of late, thanks to Humira!). You are absolutely right, less than 1% of people who take these drugs for chronic pain develop addiction problems. If your pain is constant (which it sounds like it is) you might want to talk to your doctor about the Duragesic (fentanyl) patch. They work really well for me. They have fewer side effects like nausea and being "high" than the oral meds (for most people) - and they are better for constant pain because it's long-acting. The short-acting meds like vicodin, percocet etc. kind of yo-yo in terms of the level in your bloodstream - so you develop tolerance more quickly with those (and experience more pain day-to-day). You need to watch the tylenol in the vicodin as well.

One caveat about the patches - they are expensive. A a generic version was released in January, but they don't work as well as the brand-name. I used the generics for a few months and went back to the name brand. My pain management doctor said that a number of his patients had similar experiences with the generic ones.

Good luck and please keep us posted!