Hi Group,
I just found your site and have been reading all the supportive and informative advice from all of you.
I was diagnosed with RA in Nov. 03 - was put on Plaquenil, then
MTX was added and am now on 25mg of MTX... with 400mg of Plaq...
and 5mg of folic acid and my
NSAID is voltaren. The RA started out in my feet and xrays show
damage to a couple of joints in my feet - which have been
progressing. I also feel stiff in my
hands and currently my wrists have felt pain... here's the deal:
I've only been on the full dose of MTX for 6mths and I suppose the
voltarin is masking the pain because i feel fine and am not all that
limited. I understand the goal of ensuring quality of life and
stopping the disease from progressing... My Dr. wants to start me
on Enbrel. I've read a lot of the responses regarding enbrel and
must say I'm even a little more skeptical now.. but I think he's
pushing the biologics too early???
What 'shape' were any of you
in before starting Enbrel/biologics? They sound like 'wonder drugs' for
people who struggle to move... lately I've struggled at the gym with my
right wrist being a little sore, but when I rest my wrist, it's fine...
anyone?
Part of me wants to continue on the MTX for 6 more months and have him
try sulfasalezine or something with it...but I'm likely holding off the
enivitable... I know that the decision to take the drugs is personal...
I'm just looking for some input because part of me thinks my Doc is
jumping the gun early... or maybe that's what I want to believe...
thanks for your time in reading this mumble jumble
i'm in the same position as you i'm due to start enbrel too but i don't want to i've been on just about everything and nothing has worked or i have had problems woth high dose MTX which did work. What do i do. i'm in so much pain but i've reacted so baldy to other drugs. help!!!!
Clairxx, I think you are in my situation. Nothing worked until I started Enbrel. I don't tolerate mtx well and have to stay at low doses. I have had no adverse reactions to Enbrel and I feel 500% better, maybe moreTaking the right meds for this darn disease, is akin to tossing a penny in the air and what ever comes up as it lands, that's the drug to use for now.
Everyone's results are different from everyone else's. I always feel it is better to stay with what you are on, as long as you are doing well on it and when it starts to not work anymore, even after they have added more meds to the so called "cocktail" then it is time to move on to the upper level drugs like the biologics. But then there are others who know from the get go that the the regular drugs that they start you off with, is not working at all and probably never will, they have to move on to the higher level drugs quicker.
As for myself. I always did well on MTX keeping my joints in decent shape and helping with the fatigue ( even though I had to take other drugs with it) but it never stopped the Inflammation, and I never had what you can call a remission. so my RD thought it was better for me to move on to the biologics. Right now I am on Enbrel and not doing as well as I hoped and wish that I was back on MTX, which I can't take until I am done taking the INH for latent TB. So you can see how we all are different when it comes to taking the RA meds. We will never be 100% pain free or never experience complete freedom from this disease.
So if your doctor feels you need to move on to other medications, like the biologics, then I would ask him/her if you are showing signs that the medications you are on right now are not working as they did. If they are... then ask if you can stay where you are and watch how everything is going, if the blood panels come back showing that your personal cocktail is not working as well as it once did, then think about going on the biologics. Like I said. RA is like having a penny toss. Tails you win-heads you loose.
I hope I haven't confused you.
Keep us in the loop as to what you decided...
waddles
Thanks everyone.
Does the enbrel injection sting like MTX and do you need to take any other medicine while your one it. Like you get Folic Acid on MTX.
Thanks for the support
Clair
Hi Clair.
I never had the shot type MTX but I can say for sure that the Enbrel weekly shot does sting a little bit. But not bad enough to tear up over. If when you go to give yourself a shot, any shot, if there is a little medication that is overflowing on the tip of the needle, if you can gently shake it off the needle tip. It should help to take the sting out of the shot. I don't take Folic Acid. Most people who do use Enbrel, will have a booster med of MTX to take with it and they are saying it sure is helping out.
Good luck on your Enbrel. I hope that this will be the one that helps you with your pain. It's time for you to have some releif.
Waddles
Check with your RD, see if repeat x-rays will see if your joints are still deteriorating or if the progression has slowed for you. It will make either decison easier. SusanI am alllllllll about AGGRESSIVE treatment.
If biologics help stop the progression of RA - the earlier the better, but that's just me.
"Better LATE than NEVER" does NOT apply to RA, in my opinion.
But - it's a personal choice.. you gotta do what's right for you. I am just glad we HAVE a choice now a days. My dad didn't have much of a choice.... Good luck, and welcome .... I hope you feel better. woobie
I Jenn, I started Enbrel last week and already the results have been awesome! My joints don't ache and the swelling I have (mostly in my hands) has already started to go away. My RA is not severe, but becomming moderate. I tried MTX and it wrecked havoc with my liver. My doc said I could either wait and do nothing or fight the RA agressively with either Enbrel, Humira or Remicade. I chose Enbrel since it's been on the market a lot longer then Humira and is a lot more convenient than the 2-3 hour infusion required with Remicade. And personally, I think the serious side effects (although very, very rare) of Enbrel are far less than what MTX can do to you if not monitored regularly. But that's just my opinion based on talking with my regular doc and researching it on my own. I think it's key to attack the RA early instead of waiting until permanent damage is done. Keep in mind all of the RA drugs can slow or even stop RA, but none of them can reverse the effects of damage to the joints, ligaments or tissue that is already done. As for taking Enbrel, I was nervous about having to give myself an injection, but the nurse walked me through it the first time and there really is nothing to it. I would recommend trying the injection in your stomach since there is less muscle and more fatty tissue in the area. Best of luck! Ivan Jenn I was dx Aug 2005. I had muscle pains for years and dx with fibromyalgia. Then around jan 2005 I started having stiffness, swelling and pain mainly in my hands and feet. Then my knees bothered me when going up and down stairs. I had terrible fatigue. Finally went to RA as i thought I may have it. All tests came back neg. She put me on plaq in Aug. It has helped. I still have days when I am very tired and achy. My hands and feet still bother me.
please help- any words of advice? thank you. and good luck on your decision! Welcome...msjoey311 I hope today has been good to you. SO glad you joined our humble support group. When I first started on Enbrel, I used my legs, but now I only use my stomach area. It is the best place to put your shot in to...less burn and very low pain. Try letting it stand out at room temperature for 40 mins. Also, may I make a suggestion? When you make sure there is no bubble in the syringe, you will always get a little medications on the outside of the needle, if you can swoosh that off gently, it should help with the injection burn/prick. Plus, make sure you let go of the skin you pinch up to inject in...if you don't... that will cause some discomfort. A nice steady push from the plunger helps with getting it under the skin faster, which helps lessen the burn/prick too....Go to your Enbrel Booklet, it will tell you where the best area's to use are and how to use it. I heard the arms are a good area too but I haven't tried it there yet. There are many ways to help make injecting yourself easier for you. Start a new topic on... (Best ways to inject my biologics) stand back and you will be surprised as to all the advice you will get. Hang in there, you will feel more comfortable with injecting yourself...It takes time
Hope you are having a good day. Toni well i'm taking humira, rather than enbrel. this is only the 4th shot i have to give myself & i freakin couldn't do it. you guys are all stronger than me for giving yourselves self-injections without freaking out. the 1st 3 shots, someone was sitting with me, and it took me at least 10 min's to complete. i have a hard time putting the needle through my leg & then it just burns so much putting the medicine in. please help- any words of advice? thank you. and good luck on your decision! [/QUOTE] Hi MsJoey, I'm new to Enbrel and was told to inject it into my stomach (area around the naval). The leg has far more muscle and less fat. I'm not a fan of needles either....could never be a heroin addict....but surprisingly, the injection doesn't hurt a bit in the stomach. It's just mind over matter...and you can do it! I took my wife to my initial injection at the doc's office for fear that she would have to give me my injections. But now she just watches! Best of luck! Hi jenn, I know it is a scarey experience to think about more meds,but these meds are there to help stop the damage to your joints,if you have the insurance ,please take advantage of everything possible to save your joints from the damage.I was on Enbrel,but have since switched to Humira,I take my shots in the stomach,Good luck and think about the Enbrel Sherry Joey, I have always heard the leg hurts the worst. I do my Enbrel in my stomach and it is a breeze. I also know someone who has a partner inject in the butt. Fatty tissue - that's the trick.
i had no idea the leg isn't a good spot, and most do it in their stomach. it definitely gives me some hope! i was ready to tell my doctor that i just couldn't do it. it's gonna be a whole new experience, but better late than never! i'm still very nervous. my next try is either this sunday or monday night. i'll post my success then. thank you all soo so so so much. this has been clouding my mind since it happened. you guys are great. feel free to email me! The emphasis should be rejuvenating the body system gradually to defend and overcome this chronic disease rather than struggling with pain, advancing severity over the years and matching aggressive drugs. Natural foods like selective diet and appropriate herbs are more promising. My experience is that I have reversed my chronic gout to no attack and for 14 years I have not taken any single drug! It is not a miracle but appropriate herbs, belief in natural foods, determination, consistancy, lifesyle change and learning from others good advices. In a ring there is no end. Open one's mind look into natural foods safer and friendly to build up your body system. This can be achieved and it in one's mindset. Good luck in seaching a positive solution not methods than lead to no end. i too believe a health diet helps RA. The less carbs i eat the less my Ra bothers me. but, i have to say with out the enbrel i would not be able to live life. i had to take a year off work to get me ra under control. i did work part time subbing. Roxy you are funny!! i have plenty of fatty tissues in my thighs. I have my grandma gianessi to thank for giving me the gianessi thighs and she has RA too. but she did not developed it until she was in her late 40's. Roxy's tips are my tips she has it down pat. i took the humira and it burns going in then the injection sight would swell and hurt for a day or so. it would aways take me awhile to do it because i know what was coming. God luck with the enbrel i love it! Joey, I have always heard the leg hurts the worst. I do my Enbrel in my stomach and it is a breeze. I also know someone who has a partner inject in the butt. Fatty tissue - that's the trick.
I've been taking Humira for 4 months....You can only take it in the stomach and the thigh....Always check with the Manufacurer before you listen to advice of ones who don't know....... NO YOU CAN NOT TAKE IT IN THE BUTT People should not post information that they do not know anything about, it could hurt someone. KAT she did not say it was the right thing to do she just said people do it. i wonder what the diffeecne is between your tummie,thight and your butt??? GEEEEEEEEEEEEEEEZZZZZZZZZZZZZZZZZZZZ I know what the difference is between the thigh and the tummie cause I've been there.... I've been taking it in the thigh for 3 months with a lot of pain..... Took it in my stomach Sunday.....it hurt but not near as bad..... Where do you take yours Gina? KAT Are you taking Humira?.....I am. I'm sorry if I've offended you KAT i took it for 2 years, it quit working for me. you did not offended me. I hope it don't quit working...it's been a God sent for me... KAT Joey, I've been taking Humira for 4 months....You can only take it in the stomach and the thigh....Always check with the Manufacurer before you listen to advice of ones who don't know....... NO YOU CAN NOT TAKE IT IN THE BUTT People should not post information that they do not know anything about, it could hurt someone.KAT [/QUOTE] Lovie, Would you please confirm where you get your Humira injection? You just can't stop - can you Kat. HI GINA me too!! i had the same problem with the remacade after about 3 years it quit working. so far so good with enbrel. i thank God they have come up with all these new meds to help make our lives more productive.[QUOTE=kycatfan]
NO YOU CAN NOT TAKE IT IN THE BUTT [/QUOTE]
Your comment of "struggling in the gym" hits me as if an move to an Enbrel type drug is possibly early. I started it when i struggled to get out of bed. have been on if for 18mths, now changing to remicade to see if we get better results, BUT without it i would be unable to drive a car . If you can still make it to the gym to work out then i would re-think and re-disgus with you RD i'm sorry you all have to go through this stuff as well. ... positive vibes ... USC -
Good luck Joey. Yes~I do the injections in my butt and I have for longer than you've even been on Humira. My doctor approved the site and it's been easier for my husband and I both. Let's please not be so quick to call someones advise or comments wrong until we've truely had a chance to understand what we are talking about. Joey~you are right to always speak to your doctor before making any changes or trying anything different. We all live in different parts of the Country....and world for that matter. All of our doctors have different methods that they use. It doesn't make one right and the other wrong. The butt would be alot easier and I would think less painful.. Sorry I was quick to jump but I was just going by the instructions that come with the shots. Does it change the effectiveness? I've got an appt. tomorrow, I'm going to ask about it, the thigh was very painful. tried the belly last week and it was much better. Again, sorry to jump so quickly KAT Hey everyone. I just wanna say thanks for the help. I think i might give this ago. Alot of you have been taking about where to inject. I've done MTX shots for about 18 months always in my stomach it's so much easie and dosen't hurt/burn much after you do it. Love Clair
My husband has an easier time doing it in this site due to the fact that it's flabbier as well as the fact that I do not have as many veins. He was always so nervous about hitting a vein in my thigh. I prefer for him to be more relaxed and at ease when he does it. That was really the reason we started doing it this way. Sometimes it hurts.....sometimes it doesn't. We still haven't figured out exact what the trick is. I've also heard of some that do it in the flabby part of the upper arm. That's not in the instructions either for the same reason. It's impossible to self inject this way. And no; I don't think it affects the effectiveness as all. Not that I've noticed anyway. i'm so excited to try injecting this into my stomach tonight. actually, i'm still terrified, but all this talk about the stomach being easier & others going through what i go through, makes it much, much easier. thanks, all! i'll keep ya posted!
Go Joey, Go Joey, Go Joey! Let us know! KAT i'm so excited to try injecting this into my stomach tonight. actually, i'm still terrified, but all this talk about the stomach being easier & others going through what i go through, makes it much, much easier. thanks, all! i'll keep ya posted!
[/QUOTE] MsJoey, I bet you'll be telling us how it was no big deal and you can't believe you were worried!!!
YOU GUYS ARE ALL SO GREAT! COULDN'T HAVE DONE IT WITHOUT YOUR HELP!!!!!!!
Way to go Joey!!!!!! KAT good luck, Jenn L !
let us know how it goes! and know everyone on this message board is great & going through the same things, so come here anytime for comfort or advice! Hey Jenn I went with the enbrel, started last friday and i had no side effect what so ever apart from a bit of tiredness. I react to everything
Clarixx... do you have
degeneration as well.. or mainly pain/stiffness? That's insane
that nothing has worked...what have they tried?
Susan... since my initial
diagnosis the xrays have always shown some degeneration... my doc says
that since last Jan.. the degeneration is slight, but still there...
but I've also only been on a full dose of MTX for 6 months... I don't
know... that's what makes me want to wait another 6 months..but at what
cost... because I also hear woobie's
advice loud and clear... I took a 3 week course on RA and the bottom
line was that they pushed the drugs :) and aggressive
treatment!...
Ho Hum....
I'm going to see my GP next Sat to get the TB test.. and will wait to
hear from the Enbrel people to arrange their visit.... and I'll keep
reading :) I'd love for someone to tell me I'm right and I don't
need to go on anything else... .but the reality is that won't
happen. I am appreciating all of the comments/advice...
I"m feeling a little lost right now as the idea of the itching, weight
gain, headaches etc... aren't very positive responses.. but I know it
affects everyone differently! Anywho... thanks and I'll be in
touch...
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