Is there another way to treat this nasty thing? I just got diagnosed about a month or so ago… was on naproxen for a few days until my ankles swelled like tree trunks. Dr. prescribed me MTX with folic acid, and something for the pain/inflammation. I haven’t worked up the guts to take it yet (it’s been almost 3 weeks) but I have questions for the doctor (I just called today-- waiting for a call back). Am I naive to think that maybe I can handle this with some advil when it gets really bad and not have to take this crazy MTX stuff? I don’t know if I just don’t understand the disease yet or if there are alternative ways. I just feel like there are so many bad things that can happen with these big medicines. Any thoughts or experience?
My knee swelled up like a... well it hurt! Advil did NOT do the job. Nor did ice, compression, or elevevation, though they helped me sleep a bit better. The MTX won't kill you. The drug company is just covering it's butt. Mostly the serious side effect occur at higher doses (used for chemotherapy), not the doess you will be taking for PsA.
My doctor put me on MTX first and then moved me to Enbrel (a biologic that targets TNF alpha). This is because the biologics are more effective than the MTX and they don't have the drawback of requiring periodic liver biopsies. Insurance companies require that you try the MTX first before you go on a biologic.
PsA is a serious condition with some possibly very serious results. If you let the disease progress, it won't just cause swelling, it will eat away at your joints and bones. Find a good Dr., and ask questions, but don't try to handle this on your own. It's not worth it.
You can find a lot of information, including more useful information about the side effects of various treatments on psoriasis.org. That's the National Psoriasis Foundation.
Good luck to you, and don't worry so much about the treatments. They really aren't very dangerous at all.
--Andrew
MTX isn't a big medicine, its been around 40 or so years. BUT don't take it and you will have to move on to some of the "big ones" but the damage will be permanent at that point.
This is not directed towards you but it AMAZES me people will trust their medical care to the internet or a friend of a friend and ignore someone who has spent 16 plus years learning how to provide medical care. (not that they shouldn't be questioned)
Hi Natalieb,
MTX isn't as bad as the drug sheet you get with your prescription would lead you to believe. I've been on MTX for just over a year and except for the first two weeks have not had any serious side effects. More anecdotal evidence - I worked with a woman who had rheumatoid arthritis and was on MTX for *27 years* with no ill effects. I know that it seems pretty scary - not only the MTX, but PsA as well - but it is important to start treatment early. It can help prevent serious damage to your joints.
I had a similar reaction to you - I waited almost a year after diagnosis before I went on MTX because I was concerned about the scary side effects - plus, I *really* didn't want to give up drinking. And part of me was convinced that the rheumatologist was wrong - or at least I wanted him to be wrong. But the PsA progressed, the pain got worse and the stiffness was getting so bad I couldn't hold my toothbrush so I "gave in" and started MTX. I am glad I did because it has helped. And this community has helped, too.
Oh - I should mention too, that when I stopped drinking, I lost 12 pounds without even trying!
I hope you find useful information here and at the National Psorasis Foundation site that Andrew recommended. Read up on the disease because often you have to be your own advocate and the better educated you are, the better care you are likely to receive. Wishing you many pain-free days!
Andrea
Hi Natalieb,
Hearing your life is about to change in drastic fashion is hard enough and then you start reading the medications to treat your disease with; it becomes a hard pill to swallow. I have been on MTX (injection each week) for almost 7 years and I had side effects when I first started taking it. It made me wonder if I really needed it to get through this PsA thing or not.
Then I met a woman in Arizona who had regreted NOT following her doctors' treatment and had undergone almost 60 joint/bone replacement surgeries and was living with the consequneces of her decision. She had come to realize that her life would have had more quaility if she had followed the best course of treatment for her. Unfortunately, for her it was a little too late.
The key to fighting this disease is an early course of treatment. There will be times (many) when you will feel "this can't be the way" and come to realize later, it was the way. Don't gamble your future away. Take everyones advice here; educate yourself, get a GREAT doctor who knows PsA and understands it, and follow you and your doctors' decisions about treatment. Be sure to get a doctor who will listen to you and help YOU find the answers you need for YOUR life. They MUST become your partner, not someone from the sideline.
Good luck and wishing you comfort and painless days ahead!
anne marie,
Maybe I'm weird, but I was so happy to have some doctor saying they could treat my knee that I didn't care what they were telling me about how I would always have to take the medicine. It seems that at some point our lives everyone starts having to take one medication or another (usually several) for this or that chronic condition. For us it's just happened a little bit sooner rather than later. If the Enbrel, or whatever I have to take in the future to replace it, keeps working, I'm a happy camper. I am way more afraid of the medicine not working than I am of the medicine's side effects.
--Andrew
anne marie said:
Hi Natalieb,
Hearing your life is about to change in drastic fashion is hard enough and then you start reading the medications to treat your disease with; it becomes a hard pill to swallow. I have been on MTX (injection each week) for almost 7 years and I had side effects when I first started taking it. It made me wonder if I really needed it to get through this PsA thing or not.
Then I met a woman in Arizona who had regreted NOT following her doctors' treatment and had undergone almost 60 joint/bone replacement surgeries and was living with the consequneces of her decision. She had come to realize that her life would have had more quaility if she had followed the best course of treatment for her. Unfortunately, for her it was a little too late.
The key to fighting this disease is an early course of treatment. There will be times (many) when you will feel "this can't be the way" and come to realize later, it was the way. Don't gamble your future away. Take everyones advice here; educate yourself, get a GREAT doctor who knows PsA and understands it, and follow you and your doctors' decisions about treatment. Be sure to get a doctor who will listen to you and help YOU find the answers you need for YOUR life. They MUST become your partner, not someone from the sideline.
Good luck and wishing you comfort and painless days ahead!
Natalie
I completely empathise. Two weeks in to taking MTX plus Etodolac (NSAID) plus as of yesterday Lansoprazole to counteract the harsh effects of the Etodolac, I completely understand your reluctance to take serious medications like MTX. As I have said in another post, I am still a bit in denial about having PsA. I have been held together with Kenalog shots for the last four years and was quite happy with that as I didn't want to have to to admit to having a 'disease'. What freaked my out was a few weeks ago when I saw an ultrasound of my knee on a doppler setting and the doctor told me that the flashing parts was new blood supply in a newly thickened part of my joint. The inflammation was literally causing the joint to physically change - FOREVER! My right elbw has lost about 5% to 10% range of movement - FOREVER! This disease causes short term pain and I have always treated it with pain killers and steroid shots. It is, unfortunately, causing permanent changes to my joints and I don't want that. So, I am now on MTX that will (hopefully) stop the onset of this condition and give me longer without knackered joints.
I feel just like you. I wish none of this was happening and I do not want to be on these drugs. I did not want to give up alcohol. I didn't want to develop acne at 41 (just started this week - super!), I also don't want to feel tired for a day a week after taking MTX. But more than all of that - I want my own knees and I want them to work. I feel there is little choice (for me) than to get with the program and get this disease under control.
So - you make your choices but my advice would be look long term. There is support here - Check out my post 'New to this Place' - plenty of people going through the same stuff and feeling like you that they would simply rather not be having to make these choices.
Good luck
Thanks everyone. Good to hear from you all. Like I said-- new to this so it's good to hear from people who have been dealing with this for a while. It's just a little scary, that's all. :) To me, a big medicine is anything that's not Advil... haha. I have been a really healthy person and rarely take even Advil so that's big to me. But yes-- I'm only 28 and I want to be able to move as I age for sure!