biologics- how do you know you need them? | Arthritis Information

My Rhuemy is pretty insistent that I start Humira soon. His reasoning is that the joint damage and deformity takes place most rapidly in the first 2 years and if you start this drug within a few months of your diagnosis you can pretty much prevent that. He says with this drug he believes he can get me into a full remission within a year.

When my RA presented in Nov. It was referred to as "severe" because it came on in every joint (hands and feet the worst), very suddenly, did not initially respond to MTX and Prednisone, (took like 8 weeks) and for three of those weeks I was unable to do the simplest life functions unassisted. The pain was so unbearable I was on Oxycontin and Percocet for breakthrough.

HOWEVER- One day I turned the corner and a rapid healing began. 3 weeks later I went back to work full time during the day and PT at night. I have some stiffness in my hands and at the end of the day my legs feel like stiff boards but pain does not seem to be an issue. Sure I may have a little ache here and there but never anything I feel I need to take something for.

I take 6 MTX 2.5MG ea. once a week and I'm still on 25MGS. of prednisone per day and I am being weaned off 5 MGS. per week. Initially I was on 40 MGS.

I don't want to take a drug I don't need. I know initially my inflammation levels and sedimates for extremely high- for the longest time that was all that was showing up during the diagnosis.

If they are low or normal does that mean I don't need Humira?

Could I be going into a remission? When you are in a remission do you still take medicine?

I appreciate any advice-thanks!

I am about as close to "remission" as I have been in many years but I still have to take 25mg of MTX to continue at this level. Humira got me to where I am today. I took Humira for two years and it made a great difference in my life. I had difficulties with everyday task; especially climbing stairs. Humira gave me energy to live again.....as well as controlled my pain like nothing else did.

I've been off of Humira for more than a year now (I think it's been that long) and I still continue to do well. I've tried to reduce the MTX but started slipping so we decided to put that off.

My doctor suggested Humira 6 months before I finally agreed. The only thing I regretted about taking it was waiting as long as I did.

Good Luck with your decision. I know it's a difficult one.

Would a second opinion from a different rheum help you? Your questions/concerns sound reasonable, and it also sounds like your rheum has made his reasons clear and understandable. Maybe going over this with a different rheum would help. Good luck!

I'm not qualified to give you advice on this, but I just wanted to tell you I'm sorry for this difficulty you're having. These decisions you have to make are tough and I'm sure there are others here who can tell you what you need to know. Good luck.Your story is my story. Severe onset, tried a few drugs, nothing worked, stopped everything and went into denial. Little pain and inflammation but underlying inflammation was causing damage. Med free and 5 years later I had a flare, and pain became much worse with severe inflammation. During the time I was med free and in denial I had extensive damage done to my lower back, hands, shoulders, knees and feet. It's taken another 5 years to find a med that works and Humira has just started working and according to my RD, labs, MRI of hands I'm in clinical remission but to be honest I'm still skeptical and will continue with the meds. Once I've been in "remission" for 3 months my RD and I will discuss lowering the dose of MXT and dropping Humira to every 2 weeks.

Someone suggested a second opinion and that might put your mind at rest and help you make a decision. Lindy

How do the Drs. determine when you are in remission?

Clinical remission is present if inflammation, swelling is not visible on examination, if current labs are in the normal range. According to my RD an MRI is ordered to be sure there are no areas of inflammation. I had MRI's of my hands done before he diagnosed that I was in clinical remission. Lindy

It is a tough decision and scary to add a new drug, especially when you read all the warnings. Most of what I've read say it's the aggressive treatment in the first two years that is important as that's when so much damage can occur. There are differing opinions on treatment, but I felt it was worth being aggressive as I had no damage when diagnosed. After about 4 months on mtx, I still had some swelling in hands and feet, so moved forward with a biologic when it seemed the mtx wasn't completely getting rid of the swelling. I figure if it there was still swelling, the possibility of damage was there. After 6 months on enbrel and mtx, I've given the go-ahead to try and decrease the mtx, so hoping that that combination is doing it's trick. I'm not sure what remission really means - but have a feeling you still take meds.

Take care

Cathy

About a 2nd opinion- this is actually my second doctor and it was when I changed to him that I turned the corner.

I do really like him. My first visit lasted 2 1/2 hours- he is an older man who is selective with the patients he takes on. I brought extensive notes on my daily condition for the 2 months before we met and he read it word for word, asked questions, made notes. His exam was unbelievably thorough.

It's not that I don't trust him- it's just that my last visit was almost a month ago and I am better since then. I see him again next Thursday.

I guess I am like you say "in denial". I was hoping I had a miracle and I will beat RA even though I know they say it is not curable.

Of course I know it's best to ask the doctor the questions but is what my "veteran" RA fellow posters saying is that even when you are feeling good this wretched disease is silently causing damage and deformity? Also when you are in a clinical remission- although meds can be reduced- meds must be maintained?

WantobeRAfree,

There are a couple of ways to know that it is time for you to start on biologics. When your medical professional tells you that it's time, I would go with that time or you can wait for us forum members to tell you to. One thing about feeling good on such high dose of prednisone, a race horse with a bad leg will finish the race with 60mgs of prednisone, don't be surprised if you start feeling the effects of ra as the doses get smaller. One more thing, at this time, erosion and joint damage cannot be reversed and the biologics do slow/stop the erosion and joint damage. Good luck with it, trust your doctors, I know it's hard to believe, but they really do have your best interest at heart and the cure is coming soon.

LEV

most definitely get a good doc that you are VERY comfortable with and trust, then take their advice. It is definitely hard to make the decision about putting these "poisons" in our body even though they sometimes help us.

Good Luck! I have only ever been on short bursts of prednisone for asthma and my bones are now breaking down from osteoporosis. The prednisone causes it. On that higher dose of prednisone over a long period you are in extreme risk. Have you had regular bone density tests ?I haven't had any bone density tests but I have only been on the prednisone since mid November 07 and presently I am being weaned off .

I was instructed to take 1200 MG of calcium and 100 MG of Vitamin D daily as soon as I started it which I have been taking.

I'm sure you've already done so....but please research predisone. That's a dangerous medication used long term. It's a life saver and we've all used it, but it shouldn't really be a long term option.

If you really think you don't need stronger medications; wait until you reduce that predisone to 0. That will be a true deciding factor. If I was you....it would be my goal to get off of that predisone and exchance it with a medication that will actually slow the damage of RA.

If you have to take predisone.....you DEFINATELY need a DMARD or Biologic treatment plan.

In the long run predisone use will cause alot more problems than being on a Biologic. Do more research.

I have to admit I didn't read everyone else's posts so I'm probably going to repeat something that has already been said.

You are probably doing so well because of the prednisone. Once you start reducing, your symptoms will likely return. That's pretty much what was happening to me. I'd do a burst and taper, and as soon as I stopped, the symptoms would come back, and then I do another burst and taper.

My RD didn't want me taking so much Prednisone unless there just wasn't any more options. We added Enbrel to the MTX and Plaquenil and it's made such a big difference. The only time I've had prednisone since then was when I had to stop the MTX and Enbrel because I got sick - stopping the drugs brought on a horrible flare.

To Lovie & KweenB

I think I got a wake up call after I did this original post.

I have only been on prednisone since the 2nd week of Nov. 2007 but my doctor did tell me that I was feeling great only because of it.

I guess I didn't want to believe it.

He has been weaning me off from the 40 MGS a day I was taking and I was still feeling good but on the 20th I was down to 25 MGS and at first I just noticed extra stiffness. Today...is the first day I have seen a noticible decline in how I feel. I have an achiness in all my joints. My hands feel kind of weak and are clumsy.

I feel depressed....

I'm really sorry. If it makes you feel any better, I too get depressed when I'm coming off prednisone - even the short time I'm on it. I'd say your RD is probably right in that you should consider one of the biologics. You might have an easier time getting off the prednisone if the biologic works.I started Enbrel about 3 months ago on the advice of my doctor. I was taking Arava and prednisone. I was doing okay, not symptom free, but pretty good. Everytime we attempted to reduce the prednisone my symptoms increased and we had to once again increase the prednisone. This up and down with the prednisone lasted a almost a year. Since starting Enbrel I've been able to reduce the prednisone to 5 mg/day with no increase in symptoms. I also have almost no symptoms of RA at this point.

So, based on my own experiences, I recommend you follow your doctor's advice when it comes to medications. While the side effects of the biologics can be scary, the percentages of those side effects are extremely small. The side effects of the prednisone are well known and much more likely to occur than the ones you can get with the biologics. The "side effects" of poorly controlled RA are permanent and lifelong joint damage.

Anastacia-

I think you pretty well summed it up correctly.