Ready for humira or enbrel? | Arthritis Information

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Hey guys !

How do you know when you need to try those meds? I have some good days/hours and some bad days/hours on salazopyrin and tetracycline. Most pain now is limited to hands and elbows that come and go. Is that what happens with the injections too ? Should I just be grateful?

Fatigue also comes and goes. Usually the joint pains occur when the bowel plays up and vice versa!

Hope you are all having a good hour!

Generally the Biologics are for patients who have been unsuccesful with one or more of the DMARDS. If you go to the websites for either of the drugs there are suggested guidlines from the manufacturer. Also, most insurance companies want that justification before they will cover the cost because the biologics are very expensive.So how would I know if the DMARD is successful ? I am not used to this.. Each day I have some sort of pain, but is that normal of this disease? Does planquil give you acne and hair loss ? I'm scared.. I have a wedding on the horizon!Your dr needs to determine if you have damaging inflamation because this would be a sign that your meds are not working. The goal is to stop the progression of the disease.

You will probably never be completely pain free. I am currently on Enbrel and 3 months after taking it my dr believes I am in drug induced remission. I still have some pain, primarily in my feet and wrists but nothing like before. The pain in my wrists is probably due to the damage caused by RA which is what prompted the Enbrel prescription. So it is important to get it under control as quickly as you can.

I don't believe plaquenil causes acne or hair loss. At least it doesn't in me. Methotrexate can cause hair loss.

Also if you are losing your hair you might want to have your thyroid checked. A lot of RA patients also have hypothyroidism which can cause hair loss, fatigue, dry skin and a hoarse (or breaking up) voice. My case may be a bit different but let me share my experience...

I was diagnosed at 4 years old and I'm now 32. I've been on almost everything from gold to methetrexate. I was in remission for a few of my teen years and did "OK" on various drugs through my 20's. I was off almost everything (just on celebrex) when I got married 3 years ago but my RA was far from under control. I was having major flareups, almost like clock work every other week. I took a small dose of Prednisone for the months prior to the wedding as I wanted to walk down the ailes pain free. Soon after the wedding my RA flared. It flared to the point of being almost bed ridden...my poor hubby... ;) After various drugs like imuran (hair started falling out) and no change, I enquired about Enbrel. I didn't want to try the others as they required MEX and I had been on that in the past and didn't want to go that harsh route. I insisted on Enbrel alone.

Enbrel was a life saver, I call it my miracle drug. I went from struggling to sit and stand, my hubby combing my hair and helping me dress, to vertually pain free and happy again. With each passing week I noticed I was doing something else that the RA had been preventing me from.

Now let me also add that due to my RA severity, I have had major joint damage, including MANY corrective surgeries like, toe and finger fusions through my teen years, wrist fusions and recent joint replacements. Besides the occational knee aches which I only need 2 advils to take care of, the pains I experience are mild and due to previous joint damage, NOT the daily suffering of active RA.

I understand that this type of drug may not be, or even work for everyone, but I cannot emphasize enough how completely life altering it has been for me. To not have to experience the daily suffering I did prior has been amazing. I still get tired, but when I am able to be active, work(I do freelance designing for the scrapbook industry which enables me to work from home and on my time) I feel great, happy, healthy and energetic.

Another thing I have found over the years is to really become your own advocate. Be PROACTIVE! If I had not done my own research on this type of treatment my rhuemy may not have went that route. I also know that every arthritic is different, severe cases may completely cripple or like myself, although having it in vertually every joint, I am very functionable. Study your options, read up on feedback from others and really discuss all the pros and cons with yur Dr. And lastly, as I feel like this is turning into a book ;) If you don't feel like you are satisfied with your Dr, don't hesitate on getting a second opinion, there are amazing doctors and there are some not so amazing doctors and just because they have a degree, doesn't mean they are giving you the best care. I have seen too many people put all and complete trust into their doctors and never question anything. Side note** I had one Rhuemy who was discusted that I was considering having childern. I had inquired about any risk factors when DH and I got engaged. She told me I was too crippled to care for a child and that it would be terrible to bring a child into this world in the state I was in. I cried all the way home, not an easy feet to drive and ball your eyes out at the same time. LOL. Regardless, I now know she was the one with horrible judgement and I would not wish her "care" on anyone!
zeebootee38973.3837731481

Thanks guys, some insight finally xox.

It would seem then that although I have pain, its not near as bad and it must be a remission of some type! I will be sure to speak to the dr about the things you have all mentioned, so I am interested, are you having babies? I am 31, and we still want to have a family.... I just need to work on the mental side of things, like i am so embarrassed of my knuckles - I woke up this morning thinking bugger it! Why should I have to hide and be paranoid, I am still a beautiful woman! But then I think, well its only been a month, so im in my right to be shocked with the changes still. Its a process alright.. I love hearing the positive people here, cause it helps!

Tam~I spent many years on various DMARD treatments with fairly good success. There came a point about 2 years ago though that those medications had just lost their affect on me. At the time my RD suggested biologics I wasn't sure. I waited close to 6 months increasing MTX and using pain medication, predisone and about as many cortisone injections as he would give me. Eventually he said "I'm not going to increase your MTX again. It's not helping. It's time to make a decision."

It pretty much came down to my doctor insisting I start one. I never asked for it.....but after months of encouragement from my doctor broke down and went for it. I'm glad I did. Humira and MTX together has made a big difference in my over all well being. I don't regret it for a minute.

That being said; I'd exhast every other avenue before beginning any of these medications. With the relief comes increased risks that I would not want to risk unless absolutely nessesary.

I think I may be the odd one out with my decision to start Enbrel. Although the side effects when listed seem horrid, the side effects of many drugs ie. MTX seems sooo much worse. So my view was that the biologics seemed like a more "natural" solution. I have always hated meds and with so many harsh varieties, I felt like I was being poisoned. I think the threat of birth defects, my hair falling out, stomache alcures(sp?), and with little real results, I wasn't the least bit hesitant! But again, you need to seriously view all your options before making a decision.

As for pregnancy, my dh and I are discussing the possibility now. I am 32. I am also considering staying on my enbrel through out, we'll see as I may change my mind if or when I actually get pregnant...haha. But from the searches I have done there have been many cases of happy/ healthy children born to moms who remained on the drug though the entire pregnancy.

As for your insecurities...that's completely normal, I felt the same way most of my life. Then I hit 30 and really didn't care anymore. I now where flip flops and all the world can see my very messed up feet! LOL.

Here is the path that my doctor has taken for my meds...Feb 06 official dx of RA started prednisone and MTX. April 06 taken off of prednisone due to osteopenia, added plaquenil. June 06 new joints affected by RA, stopped plaq. because of GI side effects and started Enbrel. July 06 switched from Enbrel to Humira...Enbrel causeing severe migraines and no joint pain relief. Humira stopped 3 weeks ago after a major flare and in preperation for surgery. MTX on hold. Now doc wants me to try Rituxin...but is willing to give me Remicade or Orencia if I want to try those. I am still undecided.

I have actually been doing good while off of my meds...but I also havent been working and I think if I was it would be totally different.

I say I am doing good now...but I didnt do a whole lot today and I would rate my pain at about a 6 or 7 right now.

I do agree with you Zee~but in my case MTX has been the most effective medication I've taken. I feel even now with out it Humira wouldn't do as well. I've tried recently to reduce my MTX and wasn't happy with the results so I went back up to the same dosage which is 25mg. I know this is high and my doctor and I have discussed it and I'll be working on reducing it as things settle down for me.

 

I have had RA in some form starting at age 27ish. It was mild (it was palindromic arthritis) and although I tried some meds I was eventually not on anything. I was very active with cardiovascular exercise and strength training 3 hours a day, 5 times a week and thought that this physical exercise was keeping the disease in check.

I got married at 29 and had two children at 30 and 32. There was a decided course my RA took throughout my pregnancies. While pregnant I was in complete remission and still not on any drugs at all. Almost exactly 6 weeks after giving birth, the pain it me like a ton of bricks. The same thing happened with my 2nd child. After that I developed full blown RA and I am now on Enbrel and plaquenil (just gave up methotrexate and mobic-yay!).

Although there were some pretty depressing moments dealing with the reality of my pain, I would do it all again knowing what I know now. I just wish I had know THEN this was going to happen so I could be more prepared.

Your RA may behave differently than mine since you are already on Enbrel. And as long as you have a supportive spouse (which it sounds like you do) I say go for it! Who knows maybe your pain will decrease...A baby can make your body do wacky things!

I take both mtx and plaquenil and side effects for both list hair loss. Since I take both I'm getting a double whammy.

Hessalina: I'm so glad you mentioned hypothyroidism. My voice is hoarse all the time but especially when I try to have a conversation on the phone. I usually have to hang up a few minutes into the call because I start losing my voice. It's so irritating and I was going to ask on the boards if it could be related to RA but it seemed so far-fetched. I'm going to tell my rheumy to test for that.

Lovie- in no way was I knocking MTX. I believe wholeheartedly that if you find something that works then stick with it!  I am glad you now have something that is working for you! Unfortunately having RA often mean that one has to try MANY things to find the one that works.  After 24 years of me trying almost everything under the sun with little real results I was ready for something new.

It sometimes amazes me at how completely different every RA patient is.This disease effects everyone in a unique way. I think that's why it's so hard to treat. It sure would be great if there was one treatment for everyone!

For those of you diagnosed at a later age, is remission common?

It is amazing how different everyone is!

I heard that after pregnancy, in particular 6 weeks later things can flare... I went to a psyhich before the arthritis started and he said I will have easy births but to watch my health.. So i wonder....

Have you lovlies tried altering diets etc ? There are mixed responses about this. In the last week i have seen 2 x kinesiologists who tell me that I am all grain intolerant, and this could be the bane of all my problems... ?

Zee~I didn't take your comments in that way at all.....and I'm the first to admit it's powerful stuff and also very scary. I was on it over a year worrying before I started visiting these message boards. Actually that's how I stumbled upon this great group of friends. I was researching it when I found everyone.

The thing about all the meds....at least for me anyway is that what works today might not work well a month from now. That's how I found myself in this particular situation to begin with. I started out on things like Sulfersalizine....then plaquinel.....then both; throw in some other stuff too. You get the point. Just because you may have found your perfect combination doesn't mean it will last forever. I'm sure after all these years you've had a little experience with that as well Zee. It gets discouraging; especially after you've enjoyed a "medically induced remission" which I did years ago.

I've had some problems since childhood. No doctor every wanted to put a label on it though. Ofter heard it referred to as "Growing Pains." I had one leg longer than the other as a child too and had surgery to correct it at 13. Recently I've discovered that undignosised RA in children can often lead to abnormal growth patterns. Makes me wonder. It wasn't until after the birth of my second child that the real problems became obvious. I do believe something in that process brought it out.

Thanks to MTX I'm now in menopause....have been for two years now. That's one thing I don't like to miss the opprotunity to warn some of our younger friends here about. Whether it's the MTX or the RA itself I don't know and my doctors won't swear.....but I beleive MTX caused me to go into early menopause. No one ever warned me that this could happen on MTX and I've heard of others having simular circumstances.

I'd advise anyone still interested in having children to discuss this with their doctors. I was 33 when it happened and lucky for me I had all the children I think I could manage to carry early. I'd hate to see others get robbed of their dreams of having children because of a certain medication. There are other alternatives.


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