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28, scared and confused, please help with questions about RA

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Posted 3/15/2007 6:19 AM (GMT 0)
yeah  oh that is the BEST news i heard all day.  so glad i checked my email tonight...i'm so happy your rheummy appt was bumped up, truly wonderful.

hey that's a great asset to have...your primary doc?...believe me, he'll be watching you like a hawk because he has a personal connection w/his mom about the disease.

just so you know...there are 2 types of methotrexate...injections & pills.

if the MTX is too rough on the GI system for you, you can always switch to the shot.

oh happy day.

keep on this good path, it'll make a world of difference!

you take care Erol

and yes...i spent 16 hours in lala land redface zzzz's redface

 

till later,

erin

Posted 3/15/2007 6:48 AM (GMT 0)
16 hours? Sweeeeeet! you must have felt better after that one. sorry to hear you were not feeling well now you are HEALING WELL.... :P

Glad to hear you are doing better. Just know even though I cannot be there in person, I will ALWAYS be here for you for whatever you need Erin! I do not want to focus just on me as we have been but everyone who needs help coping. You were the first one to help me. If not for you I would be lost. I owe you soooooooooo much.

Shots? Do I have to administer them myself or can I have a doc do it? I do not think I can do that. I hate, hate, hate needles :(

I took 20mg of pred today and felt like superman about 4 hours after I took it. My inflamation went down dramatically. I know its only temporary but this drug helps ALOT.

Tomorrow is RA doc day!! Wish me luck!!

My new motto...

ADAPT & OVERCOME
Posted 3/15/2007 11:12 PM (GMT 0)
Sooooo????? How did the rheumatologist visit go???
Posted 3/16/2007 5:51 AM (GMT 0)
Hi Erin!!! cool   How are you doing? I hope all is well and you are doing ok!!

I saw my Rheumy today and he was great! He answered all my questions and was totally honest with me. He put me on a pretty aggressive treatment to start me off. I am ready to kick this diseases butt!!! I also got a FREE yes FREE ENBREL dvd.. tongue

18 mg a week MTX (6 pills @ 2.5 mg) start tomorrow with lunch.

2 mg folic acid (prevents sores)

50 mg of ENBREL (start next week providing my TB test is negative. So far no bruise on my arm!)

I bought omega 3, vitamin C and Calcium supplements as well. I am still on 20mg of Pred.

I am kind of freaked out about the MTX after reading the side effects that can cause death. sad   sad   sad guess this is very rare but to be honest, I am still kinda scared.   sad

One VERY cool thing is one of my employees sisters has 4 doses of ENBREL she never used so they are going to give them to me. :-) They also helped me ease my stress about this whole thing. She has PSA and UC and she also works in a hospital so that eases my fears a little. She said just make sure you clean you hands often. Eat right. When u get a cold watch it closely and take ALOT of vitamin C.

Overall I am excited to start and a little scared about side effects from the MTX. confused  I need reassurance!!! I guess its either risk my life now or be worse off later.

I guess that is natural to be scared?

anyway, hope all is well. Drop me some emails to let me know how you are doing.

-Zeek (erol) :-)

 

Posted 3/16/2007 12:33 PM (GMT 0)
Good Luck Zeek. I hope the combo of MTX and Enbrel can really get you some relief. It might take a while to get used to self injecting, but in no time, you'll be a pro.

Will you be using the 50mg once a week or the 25mg twice a week. I had to do it twice a week, but I've heard that there's an advantage to that. Most people say that the 50mg dose burns some upon injecting and the 25mg does not. If you have problems with burning, you can ice the area (before wiping with alcohol) that you plan to inject and pushing the plunger to inject it more slowly will help too. I had to do this with my first injection of Humira because of the burn. Luckily, I was prepared in advance.

Anyway, I hope you're feeling much better soon. Just remember, it can still take a while for you to achieve the benefits. I think it took close to 3 months for the Enbrel to reach peak effectiveness for me.
Posted 3/16/2007 4:29 PM (GMT 0)
GREAT!!!!

Keah's right...the Enbrel 50mg prefilled dose STINGS like a *****!!!!! the 25mg Enbrels (you'll do 2 shots instead of one) is HEAVEN!
Humira i injected into the abdomen (that was the best place...no burning no bruising)...

so, it's not the actual "stick" Erol that will hurt (the stick is nothing) it's when the med is injected you'll feel a little sting.
if i had a choice i would choose the 2 shots of 25mg Enbrel. (i felt NOTHING with that...very happy)

thank God you scored a good rheummy!
Posted 3/17/2007 2:30 AM (GMT 0)
Hey there!!!

thanks for the replies, I appreciate your concern.

Took my MTX today with lunch. Drinking a lot of water. I have drank almost 3 litres today. I feel very slight side effects. Very, very light nausea (i think its because im hungry) and a slight, mini headache. I thought it was going to be way worse.

I was prescribed 50mg of ENBREL but I will ask about the 25 mg. Keah, are you off ENBREL? If not will you have to take it the rest of your life?

I asked my rheumy yesterday how sever my case was and he said "moderate". He made it seem like after we put into remission (which we will) I won't have to take any more drugs unless symptoms reappear.

How long do I have to be on these drugs? Will there ever be a time where I do not have to take ANY drugs? Is anyone on here in remission and drug free?

I can't wait for the day that I wont have to take ANY drugs and just live my life normally...
Posted 3/19/2007 1:59 AM (GMT 0)
I need help with these questions I cannot seem to find the answer too.

Since I am younger, does this mean that I will live shorter because I will have had RA longer?

Since it is a progressive disease, will the drugs I do take stop their effectiveness leaving me in big trouble 10-30 years from now?

Will that also mean since I am on the Meds longer, I will have greater risk of side effects?

Is there a chance I can live normal lifespan or since I am younger, I will have lived with RA longer thus leaving me worse off when I am 50?

How well do these meds slow or halt the disease? Do they make RA move 50% slower? 20% slower?

Finally, If I go into remission. Do I have to always be taking Meds or will there be a day that I can mabye stop taking them for a while?
Posted 3/19/2007 2:14 AM (GMT 0)
Zeek, I stopped taking Enbrel last year, when I had to change Rheumies nd the new one wouldn't continue my treatment. I finally gave up fighting with him and found a new Rheumy. Since my Crohn's is no longer under control and Enbrel does not treat Crohn's, we opted to use Humira, which treats both the Crohn's and the Spondy.

It's my understanding that I'll stay on Humira until it loses it's effectiveness or a better treatment comes along. Stopping the treatment will allow the immune system to get back out of whack and begin attacking my joints again.

There is no way to know if or when these meds will lose their effectiveness. The bright spot in that is that there are many more drugs in development which will be available over the next few years. So, if Enbrel stops working for you, you have the option of switching to Remicade or Humira right now and likely Cimzia and a few others within the next few years.

I understand the questions that you are asking, as I have pondered them myself. As I've said before, I'm willing to risk the future to enjoy the present. Yes, there may be additional risks in the long term, but without a present, how can I expect a future?

I doubt that anyone can give you a hard and fast answer to these questions. It's all a matter of risk vs benefit and I hope you find the benefit soon.
Posted 3/22/2007 5:57 AM (GMT 0)
Thanks again KEAH!!

I appreciate you helping me out. Are you going to bo on the chat session tomorrow? I am waiting for clearence from my insurance company (cigna) to start enbrel. I am definately coping alot better lately.

One question though mabye someone cna help me with. Can you be a parapalegic or quadrapalegic beause of RA? I am scared of this very much.... :( :(
Posted 3/22/2007 2:40 PM (GMT 0)
Zeek,
If I read this thread correctly, it appears you went from "I might have RA" to "I'm starting MTX and Enbrel" in about a week?

IMHO, that seems pretty fast. When my symptoms first occured, it took 3 months for the docs and I to decide to treat it as RA. As was mentioned before, so many of the RA symptoms are very general. My impression was that RA is significant enough that the docs wanted to rule out all sorts of other, less serious, issues. Well, in my case, they ruled them all out.

I'm not trying to scare you at all, I'll end this post with some positive news, but RA drugs are serious. MTX is chemo-therapy, my Onocologist brother-in-law precribes it to his patients often, though in much bigger does than we take. And typically, taking these is for life.
So my caution would be to rule out an infection or any other possibility. Since I'm coming into this thread late, that may have already occured ... sorry.

The great news, having RA and taking Enbrel and MTX has not slowed me down one bit. In fact, it has inspired me to get more agressive with my fun. My exploits and accidents are well documented on this forum, suffice it to say I am an avid mountain and road bike rider (and recently unicyclists), I put on thousands of hard miles (Colorado mountains) and crash often. RA has not slowed me down at all.

... Craig
Posted 3/23/2007 2:11 AM (GMT 0)
here is the chain of events that led to my diagnosis. As you know RA can affect people in different ways and can start off slowly or can attack quickly. Seems like my RA hit me pretty quick.


Feb 8: Had really bad flu
Feb 16: Got over my Flu
Feb 18: Had Joint Pain all over my body. Fingers swelling symmetrically.
Feb 19-March 6th: major joint pains
March 6: doctors appointment
March 8: blood test
March 12: DXed with RA. RF level 90. CED rate 29
March 14: Rheumy visit/Prescribed MTX/Pred
March 16: took MTX first time
March 22: Today :) I feel GREAT!!! no pain!

Yes it seems fast but I wanted to attack this disease early and aggressively. I am lucky that I got early enough treatment that I can possibly go into remission and stop further joint damage.

I did not want to wait months for help and risk health problems. I wanted to stop or slow the RA as quickly as possible. From my studies, early aggressive treatment is the KEY. So that is what I did.

Good to hear you are doing well. I actually have alot of questions for you if you don't mind.

Will we have to be on meds forever?
How old are you?
Are you scared that the meds will stop working and if so, what is your "backup plan"?
How long have you been on MTX/Enbrel?
Posted 3/27/2007 2:26 AM (GMT 0)
Hi there! I was just diagnosed this morning with RA. Yes, very scarey. My feet always hurt on the bottom in the morning. My neck hurts me to tears alot. I fell and detached a tendon on my left thumb and had surgery on the 5th of March,and this past Thursday my right hand started aching, by the time i got to the dr. that afternoon i could no longer make a fist or raise my fingers. They had no idea what it was and ran some blood tests. That same night the pain started getting to the point of unbearable,my whole hand crunched up and swoll up, and the pain was involving my entire arm. I took oxycodone,didn't touch the pain at all! Then today the result came back positive RA. No titer has come back yet, but i have a Dr. appoinment in two days. Any suggestions would be greatly appreciated!!
Posted 3/27/2007 12:45 PM (GMT 0)
Zeek,

how's it been????  just checkin' in on ya.

i think that perhaps a lot of people might be thrown back a wee bit because for the majority, it takes a LONG TIME for a diagnoses to be made! tongue so when a clear cut case comes around...it's like..."Huh???" tongue

bu thank God...as sucky as it may be to have this...it is a wonderful thing to catch it early...treat it early...and BEAT THE LIVING DAYLIGHTS OUT OF IT!!!!!

 

Craig does a fantastic job in kicking the crap out of his RA....he tries to rid himself of it via unicycle crashes and various extreme mountain biking games, LOL tongue

 

and in case you do not know...that is exactly how you expel RA from the body!

 

{exorcisms don't work...been there....LOL}

 

YES...trying to keep humorous this morning. :-)

{i also wanna jump in & add my experience to the questions you just asked}

 

Zeek...from what my rheummy has told me from the begining when i 1st started Enbrel, he explained that i would have to be on medication for the duration. so basically...yeah, forever.

This was regarding Enbrel, Humira, Remicade. And also mantainance meds (like 6MP or Imuran, prednisone for flares).

 

But...YOU STILL OWN YOUR BODY...and should there come a time where your RA symptoms lessen for a good amount of time & you are where you want to be, you're stable, pain is controlled, joints behaving, etc... you can ABSOLUTELY talk it over with your rheummy about "drug holidays"  where you can discontinue some meds or see what happens if you are off of all of them altogether.

it's a very personal choice that needs a lot of time put into making that decision.

 

sometimes it ends up with a good outcome....a great remission; other times?  your RA can rebound for the worse.

 

some folks require these meds in order to achieve & mantaine a remission.

 

my GI doc explained the RA meds to me like this:  "it's like a ladder, go through Enbrel and Humira first & exhaust your options there....because if you jump right onto Remicade you may build antibodies that result in the Enbrel & Humira drugs not working."  he could be wrong, but that's how i got it.  you can't go backwards on the ladder...but you can go forward.  

i have however seen peeps on here who went from Remicade to Enbrel or Humira though.

 

i did give each med at least 2 years to see if i had any benefit from them.

 

Enbrel & MTX is Craig's department so i'll shut up now. tongue  i have no experience with MTX. 

 

erin

Posted 3/27/2007 12:49 PM (GMT 0)
Hi Kibbles  welcome to Healing Well!

 

I would highly suggest getting a really good organized list of your symptoms & questions written down to bring with you to your appt.

 

I just read a thing called "Let's Talk RA" and you can probably find it through the Arthritis Foundations website.  It gives you a good reference of questions to prepare you for your appt. & makes communication better with your doc.

 

Best wishes!

erin

 

 

 

 

Posted 3/27/2007 2:27 PM (GMT 0)

zeekman said...

I did not want to wait months for help and risk health problems. I wanted to stop or slow the RA as quickly as possible. From my studies, early aggressive treatment is the KEY. So that is what I did.

Good to hear you are doing well. I actually have alot of questions for you if you don't mind.

Will we have to be on meds forever?
How old are you?
Are you scared that the meds will stop working and if so, what is your "backup plan"?
How long have you been on MTX/Enbrel?

Oh, I agree with your attitude about attacking quickly, just make sure it is RA, which appears to be impossible.

My doc tells me I'll be on the Enbrel and MTX forever, but at some point in time, I'll try to reduce or remove them and see how it goes.
I 46, I've been taking the drugs over 2 years now, but I'm not concerned they will stop working. I'm more concerned they aren't necessary and I'm taking them. But I don't know how to determine this, and I'm not willing to take the chance that I'm wrong and have another 3 month flair. Not during mountain biking season anyway :)

And since I feel no negative affects from the drugs, I have good insurance, and even without drugs I'm not going to be faster than any of the younger guys I ride with, I'll keep taking the shots ... for now.

I hope you are feeling better, when the drugs kickec in it made a huge, HUGE difference ... Craig
Posted 3/27/2007 9:10 PM (GMT 0)
Hey guys!

Sorry I have not responded lately as I have been travelling around alot. I am glad to see you typing like a champ Erin! Hope you are feeling well. tongue

I have been doing alot of thinking lately about AP. Reason is I can't see myself on these meds for a long period of time. Thankfully, I feel great and have no pain but that is probably because of the 20mg daily of Prednisone.

After reading so many things online about MTX/Enbrel side effects and ineffectiveness over time, I have decided to look into AP treatment. I made an appointment with a Rheumy in Portland that specializes in AP. I think it would be a bad decision NOT to look into this for therapy, especially in the early onset as I have. Since I am 28, I will probably have a much significantly shorter life span. I want to make sure that the path I am going down is the correct one. I do not mind pain, I just want to be able to live a normal life span. 

I just cannot picture myself taking a MTX my whole life. Not only that, MTX can cause lung damage which leads to RA of the lungs.

I picture it like this:

I take MTX/Enbrel for a couple years they work fine but I am left open to MANY infections/Lung problems. I probably get pneumonia or some other god awful virus and get very sick. After a few years the drugs lose their effectiveness and I switch to some other Med that helps for a little bit but eventually makes it worse. It seems no matter what, I will keep getting worse and worse.

I am just not feeling good about my future right now. My body feels great right now. I am taking my MTX every week and am eating very well. I think AP will help me in the long run and I do not have to worry about those crazy side effects.

Anyone here use AP?

Erin, what do you know about AP treatment?

any suggestions for someone who has early RA?

Posted 3/28/2007 2:22 AM (GMT 0)
Dude, if you feel great, excercise as much as possible, make your body as strong as possible ... Craig
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