Brain circles

By Ish Thursday, August 19, 2010

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Hi,

So, my brain is going in circles. I can't seem to make a firm decision about treatment... and yet, in reality I have. The Enbrel should be delivered tomorrow.

But.

But, I'm not sure. But, I'm worried.

My circular argument goes something like this.... yes, I know that I'm stiff and in pain. BUT, has my quality of life decreased to the point where I should even be considering this step? If I back away from that question for a second I can see that just asking that means that YES, my quality of life HAS decreased to that point. BUT, then my mind whirls off into a new direction... should I request new xrays? And if so, if there's no visible damage, does that mean the methotrexate is working well enough by itself and I should just suck it up?

On and on and on it goes. All variations on a theme. But the fact is, I'm actually very lucky to HAVE options like Enbrel. As scary as these medications are, the reality of RA without them is so much worse.

So while my brain whirls, I'm taking the next step toward hopefully getting the RA under control.

And after that? Maybe I'll take the next step and learn to say *my* RA instead of *the* RA.

Ish

Yesterday I cried.

Comments (30) | Add comment

ronie

8/19/10 12:36pm

There ya go, own it! It is your RA. We all have our own and until we take ownership over it we cannot control it.

It seems you are questioning the use of Enbrel compared to your Quality of Life. However, these are not adequate comparisons. It sounds like you still have a good bit of mobility and deceng QoL. And your not sure if you need a biologic to control what you can't see. But RA can do damage behind the scenes for years like a stealth bomber without actively affecting your mobility until a pretty good amount of damage has been done. (For example, I walked around for years without knowing that my hip bone was completely deteriorated because our bodies have an amazing ability to adapt to small changes without notice.)

Your bloodwork has given your docs enough information to see that your RA is not suppressed and it sounds like he is caring enough and aware enough that if he does not stay ahead of the game, you will be the one to suffer, not him. Sounds like you got a good doc, cuz there are too many out there who wait entirely too long.

Enbrel is not going to change your daily schedule in any way. (However, it will give you back a sense of normality and well being, which is always good for the soul.) It will take less than minutes out of your daily routine every 2 weeks or once a month depending on the prescription you are given. Unlike Insulin for diabetes, it is not a daily thing and you don't have to monitor anything. (your doctor will). I had to keep a Big Star on my calendar to remind me that I needed it. Basically out of sight out of mind and no one except my immediate family knew I was on it. Enbrel also has one of the highest positive reaction rates and has the least amount of side effects (as so I read and hear.)

To be honest, it is a tad refreshing to see someone questioning if they need a biologic instead of wondering when a doctor is going to do something about their condition.

Keep on milling it over!

Ronie

Ish

8/20/10 10:52am

Hi Ronie,

Thanks for the reply.

Yup, I keep questioning. But the Enbrel arrived today, so I guess I'll still be questioning even as I inject myself.

You hit on exactly what has caused me to go ahead and get the Enbrel.... the behind the scenes damage. When I went off the Plaquenil, it didn't take very long to figure out that while it had been wreaking havoc everywhere else, it had also been doing my joints a LOT of good. That proved to me that just Methotrexate alone wasn't controlling my (this is me owning it!!) RA. And if it's not controlled, damage is being done. So, here we are with the Enbrel. *sigh*

In the meantime, the Enbrel is in the fridge and I think I'm going to go outside with my dog... and think about the Enbrel later.

I hope you're having a really awesome day!

Ish

V, Health Guide

8/21/10 8:51am

Hi, Ish! Did you try the Humira yet? I hope it works well for you. It seems to have helped many people on this site. May I ask why you had to stop taking the Plaquenil? I take Plaquenil and it helps a lot. I hope I don't have to stop taking it any time soon. Blessings, V

Ish

8/21/10 10:54am

Hi V,

Apparently my reaction to Plaquenil was very unusual. Plus, it all started almost immediately after I began taking it.

At first, it wasn't all that bad. It just seemed to amplify the side effects of the methotrexate. The mouth and nose sores, the nausea. But then everything started tasting like mold, metal, or bandaids. Yuck. After that, my gums turned a purple/blue. Not like from a lack of oxygen, but a discoloration. Then came the burning mouth and lips.... like the lingering burn after you've eaten some really super spicy food.

My doctor switched me over to methotrexate injections to see if that would help. It didn't. She decreased the methotrexate. No help there either. Then she discontinued the Plaquenil.

Since going off the Plaquenil, the weird tastes have gone away and my gums have faded almost back to normal. The burning feeling is better but not gone. I'm hoping that after getting started on the Enbrel that I'll be able to further decrease the dose of methotrexate. I guess we'll see. Who knew this was going to be such a balancing act?

Anyway, my guess is that if you didn't get any of the weird side effects right after you starting taking Plaquenil, then you should be okay with it. At least that's my theory!

Take care,

Ish

V, Health Guide

8/21/10 4:59pm

Thank you so much for that info, Ish. Now, at least, I know what the warning signs may be. I have been taking Plaquenil for four months. Didn't do much good, if any good, at first. About three months in, I noticed a BIG improvement. I stopped taking it for a couple of days to see what would happen, and I noticed the difference. My joints started aching a lot more, so it is really helping me. I wish you the best of luck w/your new medicine, Ish. You are so right when you say that this is a balance act...a sort of dance that we all must learn. Peace, V

9/ 3/10 11:24pm

I haven't stopped the plaquenil yet but I'm still not seeing any improvement the Dr. tells me it takes months before it works how long did it take you. I'm swollen my ankles,wrist, knees and to top it off I have carpal tunnel and a pinched nerve on my neck. I hear plaquenil is one of the safest. how long have you been taking it and how long before you saw benefits?

Lene Andersen, Health Guide

8/22/10 8:59pm

I'm going to ask you a couple of very blunt questions.

Can you give me a good reason why you should continue to suck up being stiff and in pain? Is there a good reason why you wouldn't take a medication that has the potential for significantly improving your life? Why should you wait until you can't get out of bed before you take Enbrel?

I understand the hesitation, but keep in mind that if your RA is not well controlled on methotrexate, the longer you wait, the more damage will happen in your joints. Damage that will affect your ability in the future, including your ability to work, to be there for your family, to get through the day with manageable levels of pain.

I was on Enbrel for two years, have been on Humira for 3 1/2 and these drugs can be miracle workers. They have actually changed the prognosis of RA from one that pretty much guaranteed damage, deformities and disability to one where we don't know how well it's possible to get. If you take them early enough, they can get you back to living close to the life you had before RA - read Sara Nash's posts on her travels or my interview with Joy Fawcett, who is on a biologic medication and still plays recreational soccer.

And here is one last blunt question: why wouldn't you give yourself the same chance?

let us know how things go, please?

Ish

8/24/10 9:44am

Hi Lene,

Hesitant to take Enbrel? Absolutely! But I took it anyway.

What I was trying to communicate was that although I had this inner dialog going on, I was jumping through the insurance and specialty pharmacy hoops to get the Enbrel.

I do realize that I'm lucky to have options like Enbrel. I even said that in my original post. But I'm still new enough to all of this that I still question myself. How do I feel? Am I stiff and sore enough to warrant this next step? Is there anything more that I could be doing (diet, exercise, rest) to make myself feel better?

I worry because until 16 months ago, the ONLY medication I used was ibuprofen.

Maybe all of these decisions become "no brainers" after awhile. But for me, for now, I still have to talk to myself.... soothe myself, tell myself that I'm making an informed decision and that everything will be okay.

Ish

Lene Andersen, Health Guide

8/24/10 10:21am

I apologize for the bluntness of my comment - I should have mixed it in with some other things. Such as how much I understand the back-and-forth you do with yourself, the fear of having to inject yourself with really serious medication, the anxiety around hoping and all the rest of it. What I was trying to do - and didn't do very well - was to give your brain some counter arguments for the times when you're feeling nervous and wondering if it is the right move. Sometimes, it can be helpful to flip the argument completely, but it would also have been helpful if I had said that was what I was trying to do. I'll do better next time.

I hope Enbrel will prove you right.

Ish

8/27/10 10:12pm

Hi Lene,

I know that you of all people understand the back-and-forth, and the anxiety, and everything else that goes along with all of this.

And I'm absolutely certain that you know all about the frustrations. (We need a smiley face that rolls it's eyes, or at least shrugs. )

The auto injector is a nifty little invention. From my newly accumulated wealth of experience, I don't think it's as painless as injecting with a syringe... but it really is simple to use.

Hope your shoulder is feeling better! Have a great weekend!

Ish

sunshinegal43oh

8/25/10 9:51am

Try the Enbrel. I noticed symptom improvement after my second dose! I had tons of X-Rays, was told my joints looked "good" considering. But I didn't want to take a chance on this disease working behind the scenes and damaging me before my next set of X-Rays!

If you're joints are stiff and you have swelling, then your RA is active. The symptom relief you get from Enbrel may far outweigh any nervousness you have!

Also, do the Enbrel injection (if it's the SureClick style) in your abdomen. Much less stinging there than the thigh.

Good luck!

Shine

Ish

8/27/10 10:29pm

Hey Shine,

Thanks for the advice about it not stinging as much in the stomach.

I was glad when the Enbrel was finally delivered. That two weeks of waiting for the insurance stuff and then the specialty pharmacy gave my little brain way too much time to worry. And the thing is, I totally agree with you... stiffness & swelling means that the RA is active. So even if I can't see it, damage is occurring.

Thanks for letting me know how quickly the Enbrel started working for you. That's encouraging!

Ish

Kahmaro

8/26/10 10:23am

Enbrel came after Humira for me. (Humira give me a horrid site reaction.) But Enbrel (2005) just didn't do much for me. I felt pretty much the same. . . hurting. And that just wasn't good enough. In 7 months I had two large flareups and that did it for me. I was already on Plaquenil from the beginning in 1993. Methotrexate was added a bit later. It began in 1992 but I wasn't sent to a specialist for a year.

You just have to keep trying one after the other until you settle in with one that actually works for you to lead a normal life. But you souldn't be hurting, or it's not working! After Remicade for a year, I was put on Orencia infusions which I've now been on for 3 years, with my fingers crossed!

But NEVER just let it go! You will be doing irreparable damage to yourself.

Ish

8/27/10 10:39pm

Hi Kahmaro,

You pointed out something that I find so amazing and interesting.... but also a bit baffling. The fact that everyone is completely different and that the doctors just have to keep trying different combinations and dosages for each individual. Makes me glad I'm not a rheumatologist!!

I'm glad that the Orencia is working for you!

Thanks,

Ish

Deana

8/26/10 6:24pm

Hi Ish,

There is much more to consider besides your joints - your organs including heart, liver, kindeys, lungs, etc. If your body is constantly inflamed and you are in pain it is affecting your whole body not just a few pieces that you can take x-rays of and it is diminishing your quality of life.

Two years ago, after years of severe pain, I became anemic. After a blood transfusion and a month in rehab because I could not lift my body out of a chair or off the toilet and every test you can imagine my rheumatologist finally decided to put me on Enbrel. I read every word I could and I too was scared, but two years later nothing bad has happened and Enbrel has changed my life for the better. I am also on methotrexate and prednisone sometimes more sometimes less, but it is the Enbrel that has changed my pain and my world. I can now function and even walk some and the anemia is gone for the most part. Most of all I have a lot less pain and I can sleep.

I think you should give it a try, but also remember the placebo effect (If you think bad things will happen you may be willing it so). You can always change your mind later and try something else as there are more new medicines every year.

Good Luck,

Deana

kdmom

8/26/10 8:31pm

other viewpoint here :)

I'd leave the Enbrel in the package unless I literally could not get out of bed :)

A bit stiff, a little sore...I can live with that...

But, since Enbrel and the other biologics are relatively new...what if 15 yrs down

the road..it is learned that they cause premature heart disease of cancer or

whatever (just hypothesizing here) ??

I'd rather need a knee replacement in 15 yrs than die young from unknown long term effects of tampering with my immune system...Unless I could not function at all..and then the risks could outweigh the benefits :)

just my 2 cents...I don't even like taking aspirin ! And have been refusing

methotrexate for years...

Deana

8/26/10 8:58pm

It's a free country:-) You get to do whatever you want and make your own choices.

Current research confirms that if you are stiff and in pain it is a sign of inflamation throughout your body which is not only affecting your joints, but also all of your organs including your blood and heart. I suffered through the pain for almost ten years because I did not have health insurance and until I became anemic because I was not controlling my pain sufficiently. I ended up in the hospital getting a blood transfusion and spent six weeks in rehab while they did every test possible on me. I have had to have two total knee replacements because RA deteriorates the fluid in your joints which eventually leads to bone destruction and the need for joint replacement surgery. If my doctors had controlled the inflamation in my body earlier there might not have been this deterioration or the anemia and I might not have had to go through two surgeries and the resulting rehab. Even on Enbrel, Methotrexate, and Prednisone I have a SED rate of 125 when 0-30 is normal. People with RA are 70% more likely to have a heart attack or stroke. I plan to do everything I can to prevent that from happening to me. Not that I am selling Enbrel, but here are the actual facts from www.enbrel.com:

The clinical history of ENBREL

Seventeen years of clinical experience
ENBREL has been studied for more than 17 years, and doctors have prescribed it for more than 10
ENBREL was the first biologic approved for moderate to severe rheumatoid arthritis
ENBREL has an established safety profile
ENBREL has over 10 years of continuous safety data in patients with rheumatoid arthritis

We all have to weigh the risks based on how much pain we are in and what is available to help. We all take risks in our lives and if you read the side effects on a bottle of asprin you would be shocked.

Good luck with your plan,

Deana

kdmom

8/26/10 9:04pm

hi Deana

thinks it all depends one's individual situation (like most issues)

I have only 3 affected joints...Right knee, wrist and elbow..for 15 yrs

Current sed rate on no meds = 25

no pain, just decreased range of motion in wrist and stiffness in elbow

can't justify biologics for that ..at least not today :)

Deana

8/26/10 9:26pm

Sounds like your situation may not warrant biologics from what you are telling me.

I do not know what the situation with our friend is, but I am assuming her doctor thinks it warrants Enbrel because at $1500 a shot I can't imagine he would have prescribed it otherwise.

I did not go on Enbrel until after the anemia and years of high SED rates and terrible pain. I do not have the RA marker so my Rheumatologist is still fighting with me over whether it is really RA; however, 20% do not have the RA marker.

One thing to doublecheck that nobody did on me was Vitamin D. After both of my elbows became bent and rigid my back doctor saw them and decided to test me for Vitamin D and I was very deficient. Depending on how much milk you drink and how much sun you get you might also want to check this because Vitamin D deficiency has many of the same symptoms as RA. If you are deficient all they do is have you take a massive dose for a few weeks and like magic you feel much better.

With me it all started with OA in my left knee and then my back/lumbar spine and then my right knee and somewhere in the middle my elbows and wrists and feet. Once you start favoring one of your knees it will not be long before it throws your back off. For me out of all of it the OA knee pain was the worst and now it is the back/lumbar spine which I get shots and radio frequency treatments for.

Understand Enbrel has not made it all perfect, but for me it has changed my life, taken a lot of the pain away, but I can still only walk 1/4 mile without sitting and I have pain when it rains.

Good luck and I hope it all works out for you.

Deana

Ish

8/27/10 10:49pm

Hi Deana,

I'm so glad to hear that you're feeling better. And wow, what a wonderful testimonial for Enbrel!!

I took my first dose over the weekend, and am expecting miracles by next week . Ha ha, okay, maybe the week after.

What you said about it taking the pain away enough so that you can sleep really really really gave me a lift! I can hardly wait!!

I'm all finished worrying about it all. Now I'm just going to concentrate on feeling better.

Thanks,

Ish

8/27/10 11:06pm

Hi kdmom

Thanks for your thoughts.

I decided to go ahead and take the Enbrel. What you addressed was a lot of what was debating with myself. But the conclusion I finally reached was that since the number of joints not hurting was way less than the ones that are hurting, it was time to take the next step.

As for what problems the biologics may cause in the future? Quality of life now is more important than a "what if" problem in the future. At least for me.

Ish

Deana

8/28/10 12:20am

Hi Ish,

Good for you. It might take more like 4-6 weeks to feel the full effect though.

I use the sureclick pen for my shots. Make sure you take it out of the frig a half hour before you give yourself the shot because it will hurt if it is cold. I usually purell my hands before, swab the spot with alcohol, and I do it in my upper leg front and switch legs each week. Sometimes I get a small bruise, but that's no biggie. I usually do it on Saturday because I have more time then.

Let me know if you start to feel better.

Good Luck,

Deana

Kahmaro

8/28/10 10:37am

Smart woman, Ish! Deana was right tho. Give it 4-6 weeks at least. All of these are slow to get into your system and begin their magic.

And always look on the bright side of things and what it can do, not what it might. They pile everything possible into the possibles to cover their butts, and all it does is scare people to death. People with Psoriasis also take Enbrel. Many of these are crossover drugs they found to work on something else.

So glad to hear you made a sensible decision. Waiting until you are knarled is not, as that's pretty much irreversible. Keeping it in 'check' is the whole key!

9/ 3/10 11:39pm

kdmom

why have you refused metrotrexate?

Tula

8/31/10 1:26pm

Oh, how I wish Enbrel and the like had been available when I first got RA 28 years ago. Back then, the first course of treatment was aspirin. Trust me when I say that taking 16 aspirins per day is not pleasant. I had my first massive flare two years after getting RA and was then given prednisone. It was a huge improvement, but I didn't see methotrexate for several years after that.

I'm 44 now and have had my MCP (knuckle) joints in both hands replaced. Those were done 10 years ago and are on the verge of needing to be done again, since I work in software development and use my hands a lot. I have to get both ankles replaced (yes, they do those now, and quite successfully). I also have to get my C2-C5 neck vertebrae pinned due to deterioration in those joints. My right wrist is also toast and will need to be replaced soon, as well. My left knee is starting to go, so that replacement isn't too far out either.

Basically, even if they cured RA today, I have so much joint damage that there's not much that can be done except to replace them. If I had had access to biologics back then, I probably would not be nearly as bad off.

I'm lucky I'm still able to work and live a relatively normal life. I'm very thankful for all the great advances in artificial joints, since they're making things so much less painful and normal for me. I take Enbrel, methotrexate, prednisone, motrin, polaquenil, actonel (for osteopenie caused by long-term prednisone), and omeprazole (prilosec, for stomach issues from all the other meds).

I would always tell people to treat their RA as aggressively as they can stand because it will pay off in the long run. Don't forget, also, that more pain and disability makes it harder to do physical activities, which can lead to weight gain and poor muscle tone. Which in turn makes the RA even worse, due to carrying extra weight and having less strength to protect the joints. Then there's the risks for other things like heart disease and diabetes that can result from excess weight.

It sucks sometimes, but we play the hand we're dealt. I've often told people that I want a refund from whomever built me, since they did such a crummy job of it :-) When people ask what's wrong when they see me limping, I tell them my warranty expired. I'm going to end up fulll of metal and plastic and will have a lot of joy setting off metal detectors when I travel, but I'm thankful that joint replacements are an option.

Ish

9/ 6/10 6:54pm

Hi Tula,

I admit, I had to laugh when I read your comment about your warranty expiring.

It's life experiences like yours that make me say I'm "lucky" to have RA now. Not that any of us are lucky... but those of us coming along now have a LOT of options. And while we may not like the options and we may be uncomfortable... they are nonetheless there.

I had no idea that they could replace so many joints! I guess I've been an ostrich about the whole joint replacement topic... Thanks for opening my eyes!

Ish

Tula

9/ 8/10 12:12pm

Yes, they can replace just about any joint in your body nowadays. The knuckle joints have been fantastic. The surgery can erven be done on an outpatient basis. It does require some rehab time, but I honestly didn't find the pain very bad at all. I've had flares that hurt more than the surgery :-)

The ankles will be a bigger deal, since you have to be non-weight-bearing for 2-3 months. Since I can't use crutches due to the RA in my hands/wrists/shoulders, I'll be cruising around in a scooter for a while. I'm contemplating painting flames down the sid eof mine :-) The end results should be worth all of that, though. If you're interested in details, look up the Salto-Talaris ankle joint, Agility ankle, Inbone, and STAR ankle. These are the major options available right now. Finding a surgeon who does ankle replacements can be more difficult, though, since it's nowhere near as commoin an option as knee or hip replacement. I'm fortunate to live in the Boston area, where there are loads of doctors available in all manner of specialties.

Ankle replacement is still a bit controversial due to poor results in the early days, but the new joints available now are fantastic. Doctors seem to be very divided on it, so if you find yourself contemplating any kind of ankle surgery, be sure to find a doctor who does replacements and at least have a consultation. It's been my experience that doctors who doin't perform ankle replacements tend to always recommend ankle fusion, while those who actually do the replacements will consider all options. There is a Yahoo Groups mailing list for ankle replacements (Ankle_Joint_Replacement) that is quite active and has a lot of resources for people looking into total ankle replacements (TARs).

I've found that it's important for me to learn all I can about treatment options so I can decide for myself how I want to approach my RA. My dad always said I was "stubborn" and that's probably true, since I'm determined to know all about the details involved with any kind of RA treatment. I suppose being stubborn is actually an advantage for someone with RA. You certainly have to have something to make you get out of bed some days :-)

9/ 3/10 11:12pm

I was just diagnosed w/ RA and it doesn't even show in my blood work I've seen two different Dr. the first one prescribed plaquenil and celebrex I was hesitant to take these but the pain was well you know... When that wasnt working she gave me predisone you know the one you take several for x amount of days and less for the next few day etc.. Now I call that the wonder drug! The other Dr. just suggested I take Metrotrexate along w/ predisone the problem is I have a hard time with all the side affect of these meds they want to give me. Can anyone share their experiences re: medication please I'm in pain. especially metrotrxate

Ish

9/ 6/10 6:42pm

Hi ZH,

The medications and their side effects are certainly an issue with RA.

I can only give you my personal experience with Methotrexate. For me, the side effects got better over time. To begin with, I had a lot of nausea, mouth sores, that sort of thing. But they did subside somewhat. I'm now on injectable Methotrexate. This is a much much MUCH better option for me! No stomach issues at all. So if it's stomach issues that are the worst, I would talk to your doctor about using the injectable mtx.

Lene has a post about medications and their side effects somewhere around here. I'll look for it and post the link for you.

Ish

Tula

9/ 8/10 11:53am

It's interesting how we all react differently to medications. I've never had any problems whatsoever with methotrexate. I do take folate (folic acid) along with it, which supposedly mitigates potential side effects. I've never noticed any issues with it, even when I don't take the folate, though, and I've been taking it for more than 20 years.

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