I have been lurking and reading here for quite a while, denying the severity of my PsA and my need for help. I have (finally) listened to the wisdom of those who go before me and decided to start on meds. I have been on Celebrex for 4 months with next to no perceptible improvement My rheumatologist is suggesting either methotrexate or Humira. Both scare the bejeebers out of me because of the potential side effects but I can’t go on without doing something. I’m miserable and exhausted and I hurt.
So… Any input you all would be able to give would be greatly appreciated. Help?
Hi, Patrisha! Good things are happening for you: your rheumatologist is prepared to get aggressive with your disease. That's going to give you the best chance at a good outcome. Lucky you: lots of people have problems getting their docs to acknowledge the severity of their disease.
I know what you mean when you say the drugs scare the bejeebers out of you. All of us have been there. I'm not saying you should be less scared of the drugs, but I do think that you need to be more scared of the disease. Make no mistake about it: aggressive PsA can do a lot of damage, and do it relatively quickly. The key is early and aggressive treatment, and the only proven way of halting the damage is with the heavy-hitting meds.
Humira or MTX? Which would I choose? I'd go for the Humira, if my insurance covered it. Hands down. It's one of the bio-drugs which we know are effective: there are doubts about how good a job MTX does on PsA. You can always add MTX to the Humira later if you aren't getting enough of a response from the Humira alone. (A lot of us take MTX in addition to our biologic.) Incidentally, the side effects from biologics are usually mild. Occasionally people react badly (in a dramatic way) to the drug, but most people get only positive effects.
I can't remember whether I recommended a book to you. There's a book recommendation in the "Book Reviews" tab above. It's a book that literally changed my life. The Kindle edition is a bargain. If you don't have a Kindle, you can download free Kindle software for your pc and read it on your computer.
Hope this helps. Have to run, but will check back later for a response from you.
I am of the mind-set that trying ANYTHING is better than trying nothing. I have been on both - at the same time and separately and believe that it is worth the risk. The disease is debilitating, and not going anywhere on its own, so what do you have to lose. It comes down to quality of life - and you are deserve a good quality of life.
I am self pay, so Humira is crazy costly (near to $1k a shot from what I am hearing). MTX is crazy cheap, but I am honestly terrified of the side effects. PsA is bad enough without having the other stuff on top of it.
I have the Kindle app on my iPad, and have been reading the book (along with everything else I can get my hands on). Thanks!
Both Humira and Enbrel have patient assistance programs for the uninsured be sure to have your docs nurse look into them..
I remember at my first Rheumy appointment when i told the Doc I was uninsured, she smiled and said GOOD. She then went on to say we would save several thousands in tests, a year or more of pain because we could start the biologic immediatly.
NOW for an unsolicited opinion. I wouldn't start with either Humira OR MTX. I'd start with Enbrel. A few reasons (for me) Enbrel is monotherapy. If you read the fine print for Humira they want you to take MTX anyway - Enbrel does not. There is a big difference in the two drugs one is a humanized sythetic that works in the blood stream (Humira) The other is Human DNA that works in specific cell groups. The research shows Enbrel lasts longer as a therapy there are some of us 12 years and no MTX) It may lose effect but it rarley builds antibodies. Minor point but Enbrel hurts less to inject has variable doses and less site reaction. Now for the dose of Reality most of us end up on a DMARD (MTX type drug) anyway. The biologics are not nearly as effective on arms and legs and MTX nearly ineffective for spinal stuff. MTX (and presumably other DMARDS) do increase the effectiveness of the biologics (as much as 40%)
Hidden in the fine print of all the drugs is the fact that a 20% improvement in symptoms makes it effective. (there is a push to make it 50% - (I personally am opposed)
Patrisha said:
Thanks for the input so far. I appreciate it.
I am self pay, so Humira is crazy costly (near to $1k a shot from what I am hearing). MTX is crazy cheap, but I am honestly terrified of the side effects. PsA is bad enough without having the other stuff on top of it.
I have the Kindle app on my iPad, and have been reading the book (along with everything else I can get my hands on). Thanks!
I don't feel your response was unsolicited at all! I think I'm still not sure what I am asking. I don't know what direction to go, really, and sometimes it seems the Rheumatologist doesn't either... I will look into the assistance programs - and Enbrel, and see if it is an option for me. Thank you!
When Lamb offers an unsolicited opinion, it's always worth taking note! LOL Often the best discussions here happen when someone goes a little off topic.
I know what you are saying about Rheumatologists. From their point of view, it must be hard to plan effective treatment when the target is moving and changing constantly. I honestly don't know how they do their jobs, dealing with people who are in pain and incurable, all day, week in week out. But they chose their specialty! On a more positive note, I have a friend with a neurological condition who was surprised when her neurologist referred her to a rheumatologist. When she questioned that, he said "Rheumatologists are the sleuths of the medical world." Sure enough, the rheumie did a work up, and gave an opinion with some interesting alternative ideas.
I had one years ago, and REALLY did not click with him. Basically I heard "you're going to have liver/kidney(fill in the blank) damage if you take any of the meds - so you may as well just do it now and get it over with" and that I had to learn to "live with the pain". That didn't fly well with me, so I stopped seeing him. Fast forward too many years and I fell apart. My GP recommended this new woman and so far I really like her sensibility and approach. I'm praying something helps.
You have to feel for the Rheumy. he really does know where he wants to go. Biologic treatment is it pure and simple, and the DMARDS are often a part of it. The problem is the are basically six Bio's and 4 DMARDS. Anyone of them only works about 50% of the time. A years treatment costs 40 grand and you won't know for 3 months whether it works. Its pretty hard to endorse "the thing" that will work.
Then there is the second issue. The internet. It is full of misinformation, wrong information, and frankly folks for who anything but a magic pill that makes them wake up in the morning completley cured. This site is pretty strongly moderated if it doesn't stand up to "science" (evidence based) it either poofs or is moved to a clearly identified "alternative thought area" We had a guy selling crack at 2:00 AM this morning (he didn't get in here his URL was accepted at a different site.) We can't do much about the fear except to repeat over and over that there is MORE to fear from the disease than from the meds.
Each of has a personality around here. I'm the tough guy... But as you start to deal with this thing heres what you will learn: You have an incurable progressive disease that responds 90% of the time to treatment (That means there will be a normal for you, a new normal but a normal) Treatment means taking meds, doing everything possible to be a more healthy you (eat and sleep right) and to keep moving (what doesn't move rusts) We are all here to help ask anything.....
I’m currently on Humira and MTX (they are usually prescribed together unless you have a contraindications for MTX). I’ve also been on Enbrel, prednisone, and plaquenil. Whilst I agree some of what you read is scary, it’s all a risk - return type decision. The longer biological have been around, the more we understand them. Significant side effects are very rare, even rarer is the possibility of lasting side effects. mTX (not my favourite, but I take because its best to with the Humira), does have the potential to do liver damage in many people, however the damage is so minor that its very rare for any one to get a significant symptom or reduced liver function. And the really cool thing is that your liver can totally regenerate itself once you stop MTX, if any damage becomes apparent - wish my joints could do that!!!
I have had great experiences with both Enbrel and Humira, and though not everyone responds as well as me, many people do find that the biologics are life changing (and some have this experience with other DMARDs such as MTX, but it commonly seems to be more an incremental change rather than life changing with these). Take a deep breath, try whatever combo you and your rheumy agree, and look forward to a significantly improved life - it may not happen on the first try, but for the vast majority of us, we find a medication combination that makes a real difference.
I've been on MTX, prednisone, sulfasalazine and Enbrel. The MTX and sulfasalazine didn't help much on their own but when I first started Enbrel...WOW! I had a VERY fast and positive resonse. Unfortunately it didn't last very long. Once I was off the prednisone I needed to add more and more sulfasalazine along with the Enbrel until I was on a sulfa dose that made me feel nauseated all the time. That was a clear indication that Enbrel wasn't working. For me. I'm trying Humira tomorrow for the first time.
My point here is that this is MY experience. FOR ME, Enbrel worked well for the short term. For others it is great for the long term. As lamb noted above, these drugs (DMARDS, biologics) don't work in a predictable way for everyone. You have to be willing to work with your doctor and to tweak your doses as your doctor suggests. When you're hurting it is hard to be patient. I've been off all anti-inflammatory meds for a few weeks and I am quite literally jones-ing for something to take the inflammation away. I've resisted a quick hit of prednisone because I want to be sure when I take Humira that the effects I feel are from it alone. But, as I said, that's just me.
You need to figure out what's right for you. And once you've worked it out--be flexible. I've learned that my PSA has an uncanny knack of shifting the goal posts if get complacent!
Hello Patrisha and welcome. I agree with everybody, disease is way worse than the meds. I was also very reluctant and very scared but eventually I had to relent and take MTX, my body was giving up and my life was like a bad nightmare. My rheumathologist started with MTX. I had side effects but a couple of co-workers had none at all. The side effects were inconvenient but tolerable and improved with time. My quality of life improved too. Eventually the MTX quit working for me (and you'll see, every one of us reacts differently to the meds ) and then I started Humira a month ago. Still not kicking, I am making it through this mess with painkillers. It takes weeks, so I need to be patient, see what happens and re-asses if necessary.
I had many crying fits trying to accept the disease. The first time I could not open a can I threw it against the wall and broke a tile. At least there was nothing wrong with my arm, only my hand :) . This disease is a little bit like a bullfight, you never know when or how is going to move, but you always have to be there, put and ready with your cape, ready for a different move. If you don't do anything, the bull is going to trample you. :(
Wow, Surferette, reading this sounds like me. Until I realized I was not using my index finger all day I didn't realize how the pain was actually affecting me. Then, in denial and scared of meds.
A natural chiropractor told me today my body is fighting against itself and it's no wonder I feel like butt. The no amount of adjustments or deep tissue massages will help. He is helping me get my diet less inflammatory for the sake of my IBS, but it's becoming clear I need to start the Plaquenil as my doc recommends. =(
Hey, Patrisha. What everyone is saying is true. I think a great many of us don't want to accept the fact that we need to take these medications. I am taking Methotrexate and Humira at the same time. I obsessed over having to start the Methotrexate. I know I drove both my husband and my Doctor crazy the first time I had to get the Humira shot. I was in so much pain that I was shaking and still denying that I needed the Humira. My husband has to administer the shot because my hands don't work well enough for me to do it. I am doing much better now and I look forward to every other Tuesday. Monday nights I cheerfully tell my husband, "Don't forget! I get a shot in the morning." I'm just so glad that he doesn't mind giving the shot. :)
Maybe you could get him a naughty nurse outfit and....... Oh nevermind. I'm glad things are working for you..........
Tirezza said:
< I look forward to every other Tuesday. Monday nights I cheerfully tell my husband, "Don't forget! I get a shot I'm just so glad that he doesn't mind giving the shot. :)
Oh, Lamb, you just made my day! Had to go to the Dr. yesterday. I found out that I have a sinus infection and an ear infection. So I'm whinging a little bit today. OK, a lot . . . :)
tntlamb said:
Maybe you could get him a naughty nurse outfit and....... Oh nevermind. I'm glad things are working for you..........
Tirezza said:
< I look forward to every other Tuesday. Monday nights I cheerfully tell my husband, "Don't forget! I get a shot I'm just so glad that he doesn't mind giving the shot. :)
Sorry to hear that Tirezza :( When I have a sinus infection, eucalyptus vapors soothe me a little bit, I boil Eucalyptus, cover my head with a towel and sniiiiiif :) That means you are off Humira and MTX now for a while right?
Thank you, Surferette. My primary care said to continue with both, but he is going to contact my rheumatologist and let me know on Monday. I've already had my Methotrexate for the week. My Humira date with my husband is on Tuesday. ;) Sinus infections are a common occurrence for me, ear infections are not. Hence the whininess . I've never tried boiling Eucalyptus, but I do like my vapor rub.
Surferette said:
Sorry to hear that Tirezza :( When I have a sinus infection, eucalyptus vapors soothe me a little bit, I boil Eucalyptus, cover my head with a towel and sniiiiiif :) That means you are off Humira and MTX now for a while right?
Lol your dates with your husband are so sweet I would not let mine do that , he is an engineer and after seeing the big operation and special tools needed to hang a simple photo on the wall, I am sure he would buy a special stretcher, defibrillator and keep blood in the fridge just in case
I would not let mine do that , he is an engineer and after seeing the big operation and special tools needed to hang a simple photo on the wall, I am sure he would buy a special stretcher, defibrillator and keep blood in the fridge just in case