Hi Everyone… I’ve had Psa for 6 years and used a grain and dairy free diet the whole time, and worked great, but the doctor wants me to take MTX… Does everyone start on that? Not sure what to do…
Hi BriansGirl. Most of us seem to start on Mtx, I’m no expert but from observation I’d say that Sulfasalazine is the next most commonly used first DMARD.
I’m fine on Mtx, it helped me a fair bit when I took it on its own. I realise taking it can be a big decision for various reasons but I hope you have as smooth a ride as I’ve done if you do go for it.
Hi Sybil… I’ve been told by two doctors that I should start asap. But it’s been six years and I’ve been doing the anti-inflammatory diet and it’s helped a lot. I’m just confused. I guess there is a reason they both said the same thing…
I actually started on plaquenil rather than mtx but that was because I was breastfeeding. I added in mtx probably 3 years later but it didn’t work sou I switched over to leflunomide
Wow! That was a long way to set that not everyone does.
Like you, I tried to manage the disease without meds for several years after diagnosis. But, I never did any serious diet modifications and only half-heartedly tried “natural” remedies such as herbals, etc., so the disease wasn’t really under control. However, I was lucky to have slow disease progression for several years and no acute symptoms until the last year before I went on Enbrel.
My rheumy tried to push Sulfasalazine after he did a prednisone bump that worked really well…I refused. Then, he mentioned Methotrexate and I refused that. During that time, my PsA was getting unbearable. He started talking about biologics, and I was scared of them, too.
I get nervous about taking too many meds, and Methotrexate does not come without SEs, as many people on here seem to have had problems with it. I really can’t say that about Enbrel. I don’t think I could handle those SEs. But, it’s really your choice–not the doctor’s–in my case I had the disease so long that, with the dermatologist and rheumatologist’s recommendations, my health insurance approved me for Enbrel when I finally agreed to do something!
Hi there Briansgirl
A couple of things here: pain is not a reliable indicator of how bad your disease is. On a day-to-day basis, the fact that you are able to function if you are careful with your diet is fantastic. More power to you. But please don’t confuse that with controlling your disease. The real concern with PsA is joint damage that can happen while you think you are coping. Here’s a piece you might want to read about symptom control vs disease control.
Hi… Grandma_J… I was horrible right from the start, and only did I get better when I went grain and dairy free. But it was always still there. Just not severe. But I guess it sill is doing damage. As I do get new symptoms slowly. I think the diet just works as an anti inflammatory but doesn’t stop the disease. I don’t know what to do… But thank you for your response… It really does help, since it’s hard to find someone who understands.
Hi Seenie… Thank you for the article… I was told that six years ago and I guess I need to hear it again… I thought since the diet took the pain away, it was ok… But I still know the problem is still there… I was only lowering inflammation… Not stopping the progression. I get it, just have to figure out which meds to take…
Yeah, sometimes it all takes a while to sink in, doesn’t it? The thing is, you don’t know whether you are having progression until the damage is done. The reason I did not have treatment for so long was because I was undiagnosed, and that is a whole other story. My diagnosis came as a result of the discovery of extensive damage to my feet.
Here’s another thing. You might want to check with your insurance about what they expect in the way of DMARD trials (if any) should you ask them to approve a biologic medication, if it ever comes to that. I’ve heard of some insurance expecting MTX and two others, others don’t expect a DMARD trial at all.
If two docs are recommending MTX, why not ask one of them about his/her rationale for that choice? If you do choose it, the results as well as the side effects vary greatly from person to person. And there’s only one way for you to find out what it might do for you.
When I was first diagnosed six years ago I was pretty bad. Was told to go immediately on MTX. I went home and did the diet and improved so much in a few months, thought I was good. Recently started having leg pain… Started in hip and knee, now the whole leg aches sometimes. Saw a new doc and she did mri of hands and wants me to start MTX now… I guess I don’t have a choice… I have to just suck it up and try… Ugh…
And you know what, you may just take it and not have any bad effects. You might even have a good result. No predicting.
Here’s another look at MTX, the drug we (almost) all love to hate.
Your leg pain: I used to lie in bed at night with pain that went from my waist to my toes. Awful. No, worse than awful. That kind of pain?
Hi Seenie… It started about a year ago in my hip or groin… I can’t lift my leg without pain and then moved to my knee, and then the whole leg would ache from hip to my shins… Then I modified my diet more and cut out sugar and it helped… Soon I won’t be able to eat anything… lol It’s not funny… but I gotta laugh… I’m very stubborn… I thought I could kick this my way… Without meds… Docs said the same as everyone else… The disease is still progressing… At least I’m willing to try now… I hope you’re right and I have success and not much problems with the meds…
Hi again, BriansGirl,
I didn’t mean to give MTX a bad rap–just wanted to let you know that there are many options and your situation sounds so similar to mine–different pain, but similar in that we waited 6 years before thinking about taking the “serious” meds. I’m a negative Nancy and tend to look at the down side of things–I actually thought, while I was feeling like crap and starting to know I needed to do something about it, what if the Enbrel didn’t work?–then I’d be more depressed than ever because at the time I didn’t realize how many biologics there were and if Enbrel didn’t work, something else most likely would.
Like Seenie said, the damage is happening. I couldn’t roll over in bed at night my lower back was so stiff and painful. To get up in the morning or stand up from sitting was horrible–I had to hold on to things my back felt like it was breaking! That was a gradual thing–at first it would get stiff, but not terribly painful. I had back therapy a few different times throughout the years, which helped for awhile. I also had terrible neuropathy in my feet, and we actually got that settled down with a med called nortriptyline.
After I went on Enbrel, my lower back and my feet felt GREAT! I had lots of pain elsewhere, tendonitis in so many places, aching, throbbing fingers, etc., etc., etc., which all went away, too–or I should say at least 80% away within a couple days of starting Enbrel.
But, not every story has a happy ending…less than two months after I started feeling so good from Enbrel, my back “went out”…it has improved a lot, but now I have to be really careful about lifting and twisting, etc., or it feels like it’s going to go out again…
Another 6 months after that, my feet started hurting really badly. MRI showed the cartilage between some joints in the tops of my feet has totally eroded. I’m sure this was damage looming from when I had all the neuropathy. That was 2 years ago. Now I have trouble walking–my feet are always painful and I walk slowly and more carefully–like an old person (I’m 63–I know that sounds old to some, but my mom is 92 and her feet are better than mine). I NEVER thought I’d be in this condition at this age!
Anyway, to you it might sound like Enbrel isn’t working for me. But, when I think of ALL the pain–inflammatory pain–I had before going on Enbrel and how weak and tired I was, I NEVER want to go back to feeling like that again…I don’t feel great, but I know it would be way worse if not for Enbrel.
While you may certainly run into side effects and issues, I think a lot of us may be able to say that we got at least short term relief from MTX (I know I certainly did), and while it may not work as a long term solution for everyone, it’s a stepping stone to getting the right meds into you to try and halt the damage.
Unfortunately, even with your laudable diet changes to assist in managing the inflammation and pain, PsA seems to have a habit of laughing in your face unless you mix that with a bit of good ol’ steel capped boot (in the form of medications). Happy to hear your open to trying them at this point!
I also tried the TQI diet and it did help with inflammation but methotrexate helped much more …
Hi… I’m just so disgusted… I read so much about mtx and it gives cancer and skin cancer… I’m a cancer survivor and I’ve had basal cell skin cancer 7 times… I might just have to do nothing but the diet for now… I feel so frustrated…
While I completely understand your reluctance to try it, especially with the stories of side effects your reading, and there may be alternatives that you can start out on, depending on where you are it may be what you have to start with in order to get on something considered “better,” such as a biologic. Here in the US, I have to go through a lot of MTX treatment before I can be considered for Biologic use, considering the incredibly cost of them - $3k plus per month. It’s boxes that need to be ticked by a rheum that knows what they’re doing so that insurance will say they will cover it. Otherwise, I won’t be able to afford it.
It’s ultimately your choice, of course, what medications you will or will not take - it’s your decision on what risks you consider to be acceptable in order to deaden the pain and suffering caused by PsA. I don’t think anyone here is going to say you have to take anything as recommended by a Rheum, but I do think a lot of people would strongly recommend it.
I consider the side effects to be worth the risk because, to be honest, the thought of the rest of my life being what it is right now terrifies me. I can barely manage in getting to work in the morning, and I tend to just go to sleep as soon as I get home. I don’t want whatever amount of life I’m to have left to be like that, so I’ll take the pills and the shots necessary to make it so that I have a minimum quality of life for the days to come, not just to continue living.
Hi Dilorenzo… I guess I’m just confused… Most of my problems like you said are extreme fatigue… I worry about my joints and of course want to take something… Some people say that mtx makes them more fatigued also… And embrel makes them feel less tired… Can you try to help me with that?
Unfortunately, I can’t speak to that, as I’m still on methotrexate. I mostly found it gave me temporary relief a couple of weeks after I first started taking it, both in terms of pain and fatigue. Both have gotten worse, but I don’t know if that’s the MTX or the PsA, as it could be easily attributable to both.
I’m sticking with it because I want to get to the biologics, whichever of those my doctor will put me on. It’s going to make for a rough few months, and has already, while I wait, but it means that the light at the end of a tunnel is an opening instead of a flamethrower attached to an oncoming train.
Hopefully someone else can chime in on the differences between biologics and mtx and how it affected them.
BriansGirl, if you have a history of BCC, you have a dermatologist. That is the person to speak to about your skin cancer risk as it relates to arthritis treatment. It’s hard, I know first hand. I’ve been on a biologic for about three years, and this year I have developed a BCC. I will have Moh’s surgery to remove it in a couple of weeks. I am not looking forward to the experience.
I went to my rheumatologist absolutely terrified that she would tell me I could not have a biologic any more. I just cannot go back to the fatigue and depression and pain that I had before. Her answer was that when people “sprout” BCCs and they are on biologics, dermatologists just remove them and rheumatologists carry on. Her point was that stopping the biologic could lead to far worse outcomes than having a patch of skin removed. We are talking joint damage and disability here, both of which I already have.
As far as mtx vs biologic and fatigue goes, the biologics were the only medications that did anything for my feeling of bone-tired. To be honest, MTX and the DMARDS* did little more than compound my feeling of being tired and unwell. I often say that the biologic medications were my “enablers”: they gave me the pain relief and the relief of fatigue that I needed to be able to be more active and to exercise. Being more active and stronger, in turn, allow me to … never mind, you get the idea.
The flame thrower on an approaching train … what a great image, diLorenzo! Yup, met one of those once. And only once, I hope.
- MTX and the DMARDs : great name for a punk rock band! You heard it here first.