Methotrexate?

Hi everyone,
I am after some people thoughts on whether I should try methotrexate…
2-3months ago was the beginning of my second ever bout of PsA symptoms, prior to that was 3 years ago - which NSAIDs treated very effectively after 2-3 weeks to work and started on them for about 3-4 months. I then went off the NSAIDs as I was symptom free. I am currently taking 2x550mg naproxen daily, pariet and tramadol 100mg twice a day and a temazepam to sleep at night. After cortisone injection 1 week ago into bilateral SI joints I have had huge relief! And the naproxen is now kicking in 2 weeks on since switching with the mobic :slight_smile: my morning stiffness has been reduced by as much as around 75% and the generalised back pain and stiffness is still the main symptom but is now very manageable. My flexibility is even improving again. I still get swelling and pain in my right hand, wrist and fingers while working some days. I see my rheumy again on the 18th July with my latest bloods and to discuss whether I want to try the methotrexate. To me it’s a big discussion that I don’t take lightly and I don’t want to take anything unnecessarily… But I want to do what’s best for my longivity. I’m only recently diagnosed, early PsA, 29 years old and work full time as a sonographer. My career means a lot to me and I want to continue working full time for as long as possible. Some Research I have read supports the idea of early aggressive treatment at the first signs of PsA to achieve the best outcomes… Can anyone else offer me their opinions, advice, research on whether methotrexate may be worthwhile persuing? Thanks for your help :slight_smile:

As a general rule, early and aggressive treatment is best. Here's the thing, you were lucky enough to have a remission. Talk to your rheumy, but remission occurs in less than 10% of people (if I remember correctly), and you had one. Also, joint damage can occur without pain. There are definite risks.

In the meantime, enjoy your relief right now.

Ditto everything Stoney said.

I was scared to start Mtx when I was first diagnosed, I left it and all my toes have suffered and some of my fingers. I finally started it and it hasn't been as bad as I thought so far, aside from some nausea, my blood tests have been good. But each of us have different reactions to different drugs. Good luck.

Thanks very much for your advice everyone :slight_smile: how long have you been on the Mtx tb? I didn’t realise it was so rare to have a remission Stoney! I really am very lucky! The rheumatologist did say I was very lucky to have such a long break from the symptoms. When the symptoms did come back, it was so much worse than I’d had before. The thought of having those symptoms for that whole 3 year period sounds horrible. I think I would be suffering from depression if that was the case. I don’t know how you guys have dealt with this for so long, it must make you into very strong people! I don’t want to look back in 10 years, needing a knee replacement or something and wish I had of tried the methotrexate…all medications cause side effects, I realise that but I guess it’s a matter of weighing up risks vs benefits… Thanks again xox

I’ve been on MTX for almost a year. I didn’t have any of the nasty side affects but didn’t have really great relief from it either and now I really am not having any relief at all and Rheumy is checking with insurance to see what Embrel is going to cost me ( which he said would take 10 to 15 days and its been a month with no word to me) because its expensive.

Thanks for sharing your experience with me reds, if you don’t mind me asking what are your main symptoms? When were u diagnosed and do u already have joint damage? Thanks :slight_smile: if too personal you don’t need to answer, I will understand

Hi Kelly (I’m guessing)

I had a very severe sudden onset. No question about taking something serious - just the biggest gun I could get my hand on!

Not just because my onset was so obvious (to me - my Rheumy called it extremely mild).

My dad had had a ‘mild’ musculoskeletal disease since he was 25, without a diagnosis, though at about 55, they offered MTX “because it might work”.

It’s fantastic you’ve been diagnosed relatively early, it’s even greater you’ve had moments of remission and standard NSAIDs work for you.

In my dads case, he was crippled by the time he was 55 - even though his onset was much milder than mine. I’ve done extensive research, and I’m not going to repeat it here, because as a sonographer, you obviously have the resources to do so yourself, so I can only give you my experience;

I still regret the 8 months my Rhuemy left me to languish on steroids and MTX. I had done the research, and I had the money, but I’m still not sure he wouldn’t have refused to treat me with biologics without me going through the process first.

For me aggressive is straight to anti TNF. For you it might be MTX. It is all a personal choice, and depends very much on the situation.

My Rhuemy still loves to call my arthritis mild.

As well as the dibilitating fatigue and pain that it caused without treatment, after less than two years of “mild disease” AND aggressive treatment (only because I was aggressive), I have visible misalignment and functional deterioration of my left index finger.

If I hadn’t insisted on aggressive treatment, by now I’d be struggling to walk and type.

FYI mild, moderate, and severe do not have the same meaning you are trying to apply.... The terms are based on a number of criteria including damage, erosions, number of joints involved, the amount of P etc etc. They don't apply to how you are effected, pain levels etc. Its best not to try and use them or any other means of comparing yourself to others. The fact is there are a number folks who would likley give up their first born to be at levels of involvement you describe. The use of DMARDS is becoming a standard of care with or without biologicals. With the development of the IL-27s, it will even be more so.

FWIW, I'm in my sixties and have a long term plan for drugs. I have burned through two bios. Its coceivable I will run out in my lifetime. If I were in my thirties, I for dang sure would hope for relief from the DMARDS before starting the bios. TEN years goes by in a heck of a hurry. Only three more bios have become available in that time for PsA. If you are into your research, you will quickly know its a 97% possibility that only 2 of them will work. If you are 40, you better hope DMARDS WORK OR EXTEND the life of you biologicals. Otherwise you pretty much screwed. Sorry for the suzy downer dose of reality, but thats the way it is. If you are going to live 30 years or more with this thing you need to find the most bang with the least meds.......

Hi Jen, yes it’s Kelly, nice to meet you :slight_smile: thank you so much for sharing your experiences with PsA. This condition is so new to me and I’m still trying to accept the diagnosis since I saw my rheumatologist 2 weeks ago. Because its so early and nothing really obvious can be seen on my X-rays at this stage it’s hard to believe its really there.thanks lamb for your candidness. As hard as it is to hear, we have to be realistic and honest with ourselves.my main symptoms seem to be spondylitis, the xray show Loss of the normal curvatures in my spine (a flat back) and slight ‘squaring’ of my lumbar vertebrae. Nothing major but they labeled it as changes indicative of inflammatory spondyloarthropathy. My rheumatologist told me that Mtx doesn’t work well on the spine, is this true in your experience lamb?

Sounds like your rheumy is on top of it..... I have the spodylitis type as welll and would agree with what you are saying. Experimenting with the nsaids seems to make the biggest difference for my back. Those combined with TENS and some very specific PT and stretching make a huge difference. Even before they took me tohe OR last night I went through my stretches knowing an or two in position would be bad. I had a great anesthesiologist though who was very concerned with my position. There are lots of little pieces to this thing. They all add up. These boards are full of ideas.

hi

I am on methotrexate. Well, have been on it since 2005. I went to see my doctor when I almost was not able to walk :) I did not have secondary symptoms. Actually, after being on it I got much better. People don't even believe that I am sick (till they see my legs). Right now my doc said that it seams like my PsA is in remission, and I am off the medication. Its been about 2 months and I can feel the stiffness and mild pain coming back. You should talk to your doc, all pros and cons. Maybe even try the medication to see if it will work. Keep in mind that methotrexate takes it time, but at least for me it was worth it :)

I am allergic to NSAIDs so methotrexate was my last chance to get better (my insurance did not approved for biological meds) and i mean better. To have my life back.

That's helpful information for all of us.

I was on Mtx, I couldn't take all the side effects. I turned into a zombie and couldn't function. I hope it works for you.

I would think any discomfort even if thought to be mild should be reported to the Rheumy. This way the doc can make a proper assessment of how the disease is progressing and whether the meds are helping. I guess the problem is partly us newbies just don't know what to expect, what's normal and what's not. In addition, I am finding that even most health professionals really don't know anything about PsA. It's sad and scary.

I'm almost 42, and this is exactly why I am in no rush to be put on biologicals. A lot of the damage that I am experiencing at the moment seems to be osteo related anyway, although I want to have a serious chat with the hand specialist as well as my rheumy about this. I realize that there is a limited life span for any biological, so it's just not time yet.

tntlamb said:

FYI mild, moderate, and severe do not have the same meaning you are trying to apply.... The terms are based on a number of criteria including damage, erosions, number of joints involved, the amount of P etc etc. They don't apply to how you are effected, pain levels etc. Its best not to try and use them or any other means of comparing yourself to others. The fact is there are a number folks who would likley give up their first born to be at levels of involvement you describe. The use of DMARDS is becoming a standard of care with or without biologicals. With the development of the IL-27s, it will even be more so.

FWIW, I'm in my sixties and have a long term plan for drugs. I have burned through two bios. Its coceivable I will run out in my lifetime. If I were in my thirties, I for dang sure would hope for relief from the DMARDS before starting the bios. TEN years goes by in a heck of a hurry. Only three more bios have become available in that time for PsA. If you are into your research, you will quickly know its a 97% possibility that only 2 of them will work. If you are 40, you better hope DMARDS WORK OR EXTEND the life of you biologicals. Otherwise you pretty much screwed. Sorry for the suzy downer dose of reality, but thats the way it is. If you are going to live 30 years or more with this thing you need to find the most bang with the least meds.......

Hello, Kelly. I think you should seriously consider the MTX. If it helps you, that is good, and you might be able to drop some of the painkillers and sleeping meds. (Like you say, you don’t want to take more drugs than you need to.) If it doesn’t help, that is one DMARD down. I don’t know what insurance plan you have, but for some plans, you need to have failed on a certain number of DMARDs before they will pay for a biologic. And it takes at least three months to determine whether a DMARD is going to work. So let’s say you have a very bad flare down the road. (Not hoping for this, you understand!) If you’ve already failed MTX, you can move onto the next DMARD and be at least three months closer to getting the really aggressive treatment of a biologic (if that’s what your insurance demands).

I’m with Stoney and Jen. I used to be in the “trust the rheumatologist, these things take time” camp. But I found out the hard way (and while trusting the rheumatologist) that bad damage can happen very quickly with this disease, and it can happen with or without a great deal of pain while it’s happening. And once the damage is done, you could have the pain and/or deformity permanently. When you get to that stage, all the king’s horses and all the king’s men …

Discuss MTX with your rheumatologist and I think you should give it very serious consideration.

I’ve just moved on to subcut MTX after a couple of years on oral tablets. My MRIs show spinal involvement and the plan is to move onto a biologic in the near future because of the spinal issues.
MTX hasn’t been an easy route, the nausea was overwhelming in the last few months with the tablets with anti sickness meds. But the 18 months before were ok, and my blood work showed my body coped fine with it. These ‘big gun’ meds are the way to go as all the research suggests the best long term strategy is early and aggressive.
Good luck with it all x

Thanks everyone for such fantastic feedback! I don’t think I could have coped this well through this diagnosis without this support group! Everyone has been amazing and very caring and so informative! I wanted to hear it straight from you guys who have been through all of this personally. No one else can understand PsA unless they have lived it. Everyone has a different story to tell. I will discuss things with my rheumy on Thursday regarding the Mtx and if she still thinks its the best place to start I will give it a good go. I usually tolerate medications fairly well so hopefully the side effects will be minimal. I have had liver problems in the past due to glandular fever and as a result the rheumy has done bloods to check my liver thoroughly. So maybe Mtx may not even be an option for me. The last LFTs I had about 6 months ago were normal, so hopefully it’s still ok. I assume if the Mtx affects my liver I will have to go off it anyway. Thanks again everyone, you are all amazing people xox

You’re doc will monitor your liver closely, and you will come off MTX if your body doesn’t cope. This has been said many times before but…fear the disease not the meds x

hi Louise, the more I learn, the less I fear the medications. I do believe the possible damage the disease could cause if I don’t treat it would be much worse than any possible side effects from the meds. Thanks again :slight_smile:

Hi I just completed my 1st week of MTX, But to quote some of the more experienced people on here- side effects of the med can be scary and make me mad, but in my opinion the disease in its flares which I am in currently - the disease is maddening . I was really tired for the first 72 hours, napped a lot, decreased appetite, a little nausea but by 4th day started to feel good -so good I probably overdid it and was back to tears again in pain . The side effects are scary but the damage to the joints and pain the disease can be more scarier. Bottom line is right now I am out on ST disability hoping to get back to a successful career I had ! I am a great nurse struggling to be a good patient! I am not a good patient, but as I 'm weakened by the disease I am forced to work on being a more patient patient.

On a bad day I don't seem the dream coming true really soon, but I can't give up the fight.

I do feel bad for my loved ones particularly my husband because the rage from the prednisone, and methotrexate has been very difficult to him . He is frustrated with my decline but is also walking around me on egg shells at the same time he doesn't want me to feel the pain. We are newlyweds but I guess what can only come out of this is a stronger relationship. Although I would wish this disease on my worst enemy! Good luck whatever you decide to do! Week 2 starts Monday- I'll keep you all posted! Thanks for listening ! Donna