Monday, October 13, 2008

Free Falling... not

Someone online had asked about taking those 'chemo type' meds for my Rheumatoid Arthritis and if I had ever tried them. I don't remember who asked... maybe my Sangria friend, Linda? Maybe, but I do remember that I didn't answer.

I do, in fact, take one of those medicines. I have in the past taken several; some that worked, some that didn't.

The best one I ever took was Remicade, which was given in a montly IV infusion. It was the best. Unfortunately, at about 10 months into the treatment, my body began to have an allergic reaction. After two months of trying to work around that (by dosing me with steriods via IV and benedryl) the allergic reaction progressed to chest/breathing discomfort, hot flashes, and we had to stop as anaphylaxis (or my throat closing) was probably next.

I also tried Orencia - also a once monthly IV infusion, but it didn't work that well and I had horrible mouth sores the entire time I was on it. Imagine constant cold sores. Ack. It was NOT fun.

I am currently on Enbrel, which is a shot that you give yourself at home once a week. It is similar to Humira which you also give yourself at home.

In addition to that shot, I also take 2 other immunosuppressive drugs, methotrexate and plaquenil. For some reason, Rheumatoid Arthritis and its ilk, respond best to this 'cocktail' type approach. My lupus is supposedly in remission, which is good.

What prompted me to do this entry tonight? Well, it was two commercials I saw on tv for Rheumatoid Arthritis drugs. One was for Enbrel and one for Orencia.

The Enbrel one annoys me everytime I see it. Oh yeah - take Enbrel and ride bikes and hike and run and be just great!! Pffft.

The Orencia one was by far the better commercial, MUCH more accurate in its description of what it can and will do for you. It showed a woman in her 40's like me (except she was all skinny and cute, the bitch, but that's hollywood!) just happy to be able to do simple things. Open a big jar, cut up food, hold the steering wheel not so painfully, button her clothing easier, etc.

I shouted in my head - YES! That is it! The TRUTH! MOST of us on these drugs are just happy to get that. Just being able to do stuff with our family, take care of simple personal needs, and live. That's it.

Oh maybe there are a few who feel so wonderful that they can do all those super active things in the Enbrel commercial - and yippee for them - but that hasn't been mine or most people's experience with these diseases.

I have been emailing with a group for 4 years, and none of us, despite the multi-medication cocktails can do any of that. Not anymore. Some are more active than others, but all of us struggle.

All of us have had flares so badly (even with the meds) that we can barely get out of bed. Many of us take our morning meds and watch the clock as we wait for the relief to start to kick in.

And, yes, I also drink my beloved coffee to help jump start the ole' bones!

Most of us, including me, take really strong anti-inflammatory meds each day, too. And, pain killers. And, many of us prednisone.

I am lucky that I am not on the prednisone, but it is a double-edged sword. My life day to day would be better on it, but it's side effects will harm me more in the long term. Long term use usually brings diabetes and kidney problems and brittle bones.

Not that I am without side effects now. The Enbrel and the methotrexate tire me out. Only for a day, better than full chemo, but it is there. The methotrexate also sometimes upsets my stomach. The plaquenil has dried out my skin and made me ultra-sensitive to sunlight.

My dad often complains that I should just stop taking all the medications, because they don't work. But I know they do. I would barely leave bed at all without them. Even worse would be the internal damage to my joints which they aren't stopping completely, but they have slowed to a crawl.

Living with Rheumatoid arthritis is hard, but thanks to these drugs we are living with it now. It no longer is shortening life spans by ten years or putting you in a wheelchair by sixty. I'll take that.

It is an invisible disease though. And, sometimes it is hard. So, when you see a woman or man who looks too young to be in the handicapped space or using a motorized chair/cart at the store - think twice before you judge.

It may be me or one of my pals, having a bad day and just using the tools out there to make our lives easier.

Oh my... I have really rambled on haven't I? Thanks for reading if you didn't start snoring halfway down! LOL

be well...


Marty said...

Hi Dawn,
You didn't ramble at all ... this sounds like a very clear and honest description of what you're going through and I can only imagine what it must be like. I'll never understand why these things happen, why people get these terrible diseases and why the treatments sometimes seem like such a crap shoot.

Chris/cacklinrosie101 said...

You weren't rambling a bit, Dawn. My mother gets Remicade infused once a month for her Crohn's disease. She also has rheumatoid arthritis but not nearly as severe as yours. She was on Orencia at one time. Prednisone quite a bit but she's already a diabetic so it really knocks the sugar out of whack.

It's very hard for us to even imagine what you go through especially since you are such an upbeat person. I'm glad you remind us just what you go through. HUGS

Bill said...

I read what you have written out here and I agree with how you have said things. Many of us carry around a small tool box or fishing tackle box filled with "Meds". Some get used all the time and some only for those occassions when you are at your wits end. The balance comes from not letting the "Wits End" stuff really get you down. I sure understand, My Regards, Bill

Jeannette said...

I am so sorry you are having to go through all this. Hugs. Stay off the prednisilone (sure I have spelled that wrong) but stay off it, I saw what it did to my Dad.

LYN said...

i help the lady at work who has RA all the time...she can't handle a lot of things we take for granted...
you are always an inspiration for me...

Tracy said...

loved your post today! hugs

It's Just Me ~ Katie! said...

Hoping someday they will find a cure and none of these meds will be needed. Until then I am hoping comfort and relief finds it way to you soon. Take care,

a corgi said...

that's interesting with the reality of life and what the TV commercials would have you believe about these meds they advertise; I bet it is a never ending battle and once you get the hang and think you are on a good regimen, either your body rejects it or you get a flare; hugs to you, Dawn, I know it is hard for you, but you are a fighter!!!

ELLIE said...

first you did not ramble - second--speak the truth sistah!!!
you go girlfriend - words of wisdom!
thanks for sharing
p.s. I am one of those peeps on long term prednisone - it is slowly killing more then the disease but at this point there is nothing that can be done!!

Lori said...

Thank you for letting us in even a bit more than usual with this entry. A friend of mine and I were talking recently about back and joint pain, pain from nerve damage, headaches, things like that they people can't see, and how hard it is sometimes to convince people that you really are in pain; even when you're out and about doing things that HAVE to be done, there is still pain. And I thought of you and some others dealing with RA and Lupus. Because of reading your journal I do think twice when I see someone who appears healthy using an aid of some kind to get around or parking in the Handicapped spot. So thanks very much for this entry!

Gillie said...

Your entries on your RA are always so informative and because of YOU when I saw the Enbrel commercial I actually thought "What a load of crap!!" :)


Traci said...

No rambling. This is your life, girl. It helps us to better understand you and your struggles. Bless it. I can't believe the amount of pain you are in. Frustrating doesn't even begin to describe it I'm sure!

Leigh said...

With all these encouraging comments, I'll add one more. Not having much experience with either of these nasty diseases, reading about the day to day of someone who lives them, gives me a better understanding than any "medical" article possibly could. So keep writing about it, know that we don't look at it as complaining, but learning about someone else's life experiences.
Hugs to you, Leigh

Jill Marie said...

Oh I wouldn't call that rambling, you should see my entry for today in my Fryin' Up The Bacon blog.

I hope you have a GOOD day today! I've got arthritis in both my knees and although I don't suffer as much as you, I sympathize completely.

Take care!

Kath said...

I sympathise with any arthritis sufferer Dawn.I hav eit myself,not as you have but still tit is so painful.Advert on TV boil my blood at times.Especially the beauty products showing us how much better you can look using certain ones .Makes me PMSL as the models are not a day over 21. Good grief who wanted them when we were 21LOL!!They talk rediculous.I'd like to see them tested on a sixy twoyr old LOL!!Get the coffee ready anyway I am ready for one please heeee.Prayers for you always.Very imformative post.No you wern't babbling on.Take Care God Bless Kath xxxx

Stacy said...

Just wanted to say hello and respond to your comments regarding Enbrel. I also have rheumatoid arthritis. I was diagnosed about 2 years ago. I use both Enbrel and Arava and I can tell you these drugs do work very well for some. The combination leaves me almost entirely free of symptoms of RA. I know I am one of the lucky ones. It seems that Enbrel works better for those who are newly diagnosed. If Enbrel is started later on in the course of the disease it is less effective... or so my doctor has informed me. Anyway, just wanted to comment and let you know I've been reading your journal for some time now.