Starting Methotrexate

Hi everyone,

I am a 36 year old married mother of a beautiful ten year old girl. I have lived with psoriasis all of my life and over the past year have had worsening symptoms that, at first, were misdiagnosed as being associated with lupus. I have since seen a rheumatologist who informed me that his belief is that I am struggling with flare ups of psoriatic arthritis.

He has recommended that I start Methotrexate injections. I am worried about this for several reasons - for one, it seems that every doctor I see has a different opinion of what could be contributing to my symptoms. In the past year alone I have had cancer scares, lupus scares, multiple sclerosis scares, and now this. To top it off, it isn't even really clear (from what I can tell) that there is any sign of arthritis at all on my x-rays. I am told, however, that this is normal? All of which really does not bode well for having confidence in the diagnosis or the treatment regime.

Online, everything you read about methotrexate sounds scary. Despite that, I am knowledgeable enough to realize that people who are doing well on methotrexate will likely not be sitting down to blog about it. I, however, would like to document my experiences with this medication as I trial it so that people out there struggling like me can have a sense of what they may expect (bearing in mind that everyone reacts differently to medications).

My joint pain is mainly impacting my hands. I work on the computer most of the day and feel an overwhelming tightness at times when I am trying to do my work. It has progressed to the point where I sometimes have difficulty grasping a pen. As a piano and a guitar player, these issues are problematic not just at work but at home as well.

My current medication regime is: Meloxicam 7.5 mg once daily (that has been prescribed for joint pain as I had a cardiac reaction to Naproxen); vitamin D 4,000 iu daily (that has been prescribed to treat my vitamin D deficiency); and I have recently started Folic Acid 1mg daily in preparation for the methotrexate. I have been postponing taking the injection (the excuse I told myself is that I need to wait to get over my cold), however I have committed to start the injection tomorrow.

We're it me, I would have more confidence in the PsA diagnosis than the others you've had. For most with a long history of psoriasis who develop joint symptoms that is the answer. There are some lab tests that can help confirm that diagnosis, but not every PsA patient has supporting labs. Specifically the ESR or add rate, ANA, CRP and Hla-B27 are used to help with diagnosis. However, it is possible to have Psa and be seronegative with no supporting labs. The diagnosis is best made with a good patient history, family history, and physical exam. There are signs and symptoms that are pretty definitive. If you read the articles under our Newbies tab, chack out the Gladman book on Amazon, and hit the Nationsl Psoriasis Foundation website, you can learn more about those. It is a GOOD thing that your x-rays are negstive. With this disease, if you have abnormalities on x-ray, you have aquired permanent joint damage.

Methotrexate can be a very useful drug when treating PsA. A lot of people have some rough side effects, but it sounds like your doc really knows what they're doing and have prepared you in the best way possible to avoid those SE's. The folic acid is a huge help sine most of the side effects are caused by the MTX depleting your body of folic acid. Giving you innjections instead of oral tabs is also a great move; this really helps a lot in preventing all of the GI side effects. I used to take MTX this way: with FA and via SQ injection and had very little SEs. I did feel a little off in my tummy, but not really bad. It only lasted a day. Some who take MTX this way have no SEs at all.

I hope this helps a little. Let us know if you have any more questions!

Did you have any issues taking MTX when/if you had a cough/cold? My rheumatologist says it shouldn't be an issue however other physicians advise against it.

I've only ever stopped mtx when I was having surgery. (Yes, surgery for PsA damage that occurred while I was undiagnosed because my inflammation markers were OK and x-rays showed nothing.)

Yes, mtx and all of the PsA drugs (including Tylenol) sound scary. But we have a saying around here: fear the disease, not the drugs. Have a look at my profile sometime.

I am VERY impressed with your rheumatologist. Starting mtx injectable is a great move, and I've never understood why this is not the go-to route for mtx instead of pills which can really upset the GI system.

Best of luck tomorrow, kaitysmom. The best that can happen is ... nothing! This is a slow acting drug, and will take many weeks to kick in. So may as well get started.


PS you've read the info in the Newbies' Guide haven't you?

Rule one about new medications is that the Internet is full of whiners. The millions of people who are living better and more normal lives never bother talking about their experiences with a medication, or when they do are generally drowned out by the whiners.

Rule two about treating PsA is if you wait to see radiographic evidence, you are screwed. You now have a non-reversible pain situation that is untreatable by most medication and damage that can can only be repaired surgically. I can vouch that my replacement joints while better than what they replaced aren't as good as the original equipment before it was damaged.

Rule three is change your perspective. My 16 year-old granddaughter through on a pout last nite that only a sixteen year old girl can throw (especially one multiple autoimmune disorders, developmentql delays and a brain injury) Why? She had to skip her MTX injection (which she has been doing herself for sometime) again because of a medication change for her chrons disease.. She did NOT want to spend homecoming weekend on the couch with a heating pad (fine with me, better than in a car after the game wrapped up with "Brad")

I don't know your doc, but I can tell he is infinitely smarter than Dr., Google and strangers on the internet. Remember all of us have been at one time or another exactly where you are. There is NOTHING easy about any of it. Fear the disease not the drugs is very true. PsA and effect every joint and ORGAN in your body., Hang in there This is the easy stuff. The waiting for the med to take effect is the hardest part. We'll be there.

Thanks guys - I appreciate the support.

I was really stuck on the fact that we were treating something that hasn't shown up in an x-ray without thinking of the fact that no sign is a good sign. I didn't relate to the fact that by not having visible damage it has actually been caught early and that is a good thing. I appreciate the support you all have given so far. I am certainly less fearful of starting treatment now.

For my first dose, I plan to take it late afternoon before supper to try and reduce the chances of side effects as much as possible. I imagine all of this buildup is for nothing (as some of you have mentioned) it may take several weeks before I notice any change as a result of the medication at all.

Hi kaitysmom,

I have recently started mtx, 10 weeks in, and increased from 10 - 17.5 (now two doses in) orally. Honestly I have had very little side effects, I take mine before I go to bed and I take cyclizine next morning since increase if I feel a bit car sick on way to work. I actually was hoping to lose my appetite, but no such luck :)

I had a sudden onset in May - hands (thumbs excruciating) wrists neck (neck!!! Dreadful pain!) Ankles knees jaw ears and hips....I was terrified and exhausted and suffered from May to end July until I got an IM steroid which was heaven when it worked after about a week.

Effects so far? Has definitely massively reduced brain fog fatigue and the swelling. And along with less swelling is less pain. I feel like a house after a flood.... The flood waters have gone and it leaves space to see the real inflammation and cytokines are gone, but the affected joints still burn and ache and are weak. My neck is much better. My elbows are too - funnily enough some of the worst places have improved most, neck and thumbs... And least painful seem to be persisting, ankles feet ears and hips (getting ?sciatica in left leg, pain in buttock and burning patch on thigh) but I'm working, and coping and MTX is doing something if not enough!

Just thought hearing from someone who is early in journey like you might help, I am desperate for them to increase my MTX or add something else in :)


I’ve been on mtx since November last year - injections of 25mg. Like you, I was scared but the worst side-effect I had was a bad headache! My folic acid was upped to 5mg x 6 days a week and I started to feel better after a couple of months! We are on a very low dose and the drug is safe at the levels we receive! Go for it!

Susan anxiety got the better of me and I managed to convince myself to not start the medication yesterday.

I am proud to say that now, however, my first dose is officially inside me.

Surprisingly had a hard time injecting myself for the first time - I really didn't think I would find it challenging. Now we wait and see :)

Hi kaitysmom. I just wanted to also reassure you that a good many PsA sufferers don't have the blood markers. About x-rays, Idk. They can be very subtle at first. The first rheumy I saw said she could see and feel the outward signs in my fingers, but the x-rays didn't show much. My hands kept getting worse and worse, though. And many other joints joined in the pain party. I had such painful stiffness--wrists, shoulders, neck, back--the symptoms slowly and steadily built up over many years. My fingers always felt like they were being crushed.

After being diagnosed with PsA in 2008, I was like you, afraid of the strong prescription meds. I refused the normal nsaids (they tear my stomach apart). Sulfasalazine scared me because my rheumy said they dubbed it glorified aspirin in the medical world. Refused MTX cuz of the SEs my mom had experienced on it. Had a couple prednisone bursts that made me feel great, but then found out prednisone isn't very safe. Finally, through the good advice from people on this website, I faced my fear and started Enbrel about 15 months ago. It was a miracle cure for me, starting with the first injection. And I was the world's biggest sceptic!

So, if your doctor's next plan is to get you on a biologic, don't fear. They can do wonderful things. Now I'm wishing I had started it years earlier, because I'm plagued with aches and pains resulting from damage done all those years I didn't treat the PsA. Even if it's just your hands now, starting treatment asap will hopefully prevent a lot of permanent damage to other joints not affected yet. :-)

Yesterday I didn't feel very well. I had nausea (did not vomit) and had frequent burping which, for me, was a really weird symptom because I am not the type to ever burp. The best way to describe how I felt was "run down" - more so than my typical tiredness. Today, however, I am feeling much better. I don't notice much of a chance in terms of pain yet but I haven't had any nausea today and feel more like my baseline. I'm not sure how long it takes before MTX starts to work but I am a bit more hopeful to wake today without the side effects I experienced yesterday. I have a bit more pep-in-my-step.

Happy Thanksgiving everyone :) PS: I miss wine already.

Kaitysmom, yes, now I see your post I remember the burping on mtx too. I used to find sipping a ginger drink helped .. I keep a bottle of ginger cordial in the fridge so I could make up cold and hot drinks with it. And yes 'run down' is a good description for how mtx can make you feel after dosing. As for how long it can take to work, well that's the long haul 8 - 12 weeks usually.

If you are still noticing the run down feeling and nausea you may ask for a increase in the folic acid from your doctor. That may help. Some people will have some side effects, but as long as it's managable, try to schedule a light day for the DAM days (Day After Methotrexate).

Congratulations for getting over your fear! That really is awesome! Don't feel bad or silly for being a bit afraid. It happens to a lot of us. I'm a nurse and you should have SEEN me getting myself ready for my first injection! It was my first Humira dose and the doctor has prescribed me an auto-inject pen. I had never used one in practice and was terrified of the thing. By the time I had worked myself up to take the injection, I had also worked myself up to almost passing out. I mean ears ringing, fingers tingling, and tunnel vision. I guess I had hyperventillated somehow! It was so funny!

I'm a nurse too and have three little pin points on my abdomen that shamelessly tell the story of how many pokes it took before I was able to inject myself the first time LOL. I even tried to get my daughter to do it. I was so surprised as I have given a gabillion needles in my life to others. I feel your pain GrumpyCat.

Before you forget, if you can write down when it "hit you" the do the same next week or as long as it takes to see if there is a pattern....... then work forward (or backward) and plan your shot at the time when the maximum effects happen while you are asleep.... I may be a heathen but I do mine (as did you) Sat evening especially during Football season as I have been known to "tail gate" to possible excess so want the lowest amount of MTX in my Body when I do. I can also sleep in a bit on Sunday. I've gotten it to such a science I'm not sure if I have effects or not heck it may even be one hangover negates another.

My granddaughter has alarms on her cell phone. it doesn't matter WHAT I'm doing when that alarm goes off I have to draw her medicine. (She shoots herself)

kaitysmom said:

Yesterday I didn't feel very well. I had nausea (did not vomit) and had frequent burping which, for me, was a really weird symptom because I am not the type to ever burp. The best way to describe how I felt was "run down" - more so than my typical tiredness. Today, however, I am feeling much better. I don't notice much of a chance in terms of pain yet but I haven't had any nausea today and feel more like my baseline. I'm not sure how long it takes before MTX starts to work but I am a bit more hopeful to wake today without the side effects I experienced yesterday. I have a bit more pep-in-my-step.

Happy Thanksgiving everyone :) PS: I miss wine already.

That's a great suggestion. Thanks - I will try to keep a record of the side effects moving forward. There are certainly a lot of mixed reviews regarding alcohol and methotrexate. I am by far not a heavy drinker although I certainly have sworn off alcohol altogether while on the medication to start as I want to really give this treatment the best opportunity to work. I have had many side effects from other medications that have prevented me from being able to take them so I don't want my desire to have the odd drink interfere with my capability of taking this medication too.

I find it hard to explain to my husband what is going on. He sees me plugging along through my day as though nothing is bothering me because I don't want to be the type of person who whines all day long about pain and fatigue. I do, however, really think that my lack of whining impacts him in the sense that I don't think he gets how serious this is or how horrible it can make you feel. He is not the type to read and do his own independent research about what is going on with me either. I don't want to make it sound like he is not supportive, he is, he just also has unrealistic expectations sometimes regarding what I am going through. He is not used to seeing me during my "couch days" where I don't have it in me to get up and go like I used to. I am hopeful that this medication will help with the fatigue and total lack of energy that I feel most of the time.

In a lot of ways I think my husband is just trying to cope with all of this in his own way. As I mentioned before, we have gone through cancer scares, lupus scares, MS scares, and now this. Perhaps he just thinks this is another thing that will go away only to be replaced by the next thing. My rheumatologist was encouraging in the sense that he is quite certain I have PSA. While that is not something I wish on myself or anyone else, it is encouraging in some respects to think that my journey through the quagmire of diagnosis is finally coming to somewhat of an end and I can begin the journey towards wellness.

How do you guys talk to your spouses/family about PSA?

Let me add my voice to the please don't wait until you see radiographic evidence. My wrong diagnosis/lack of diagnosis/lack of treatment for 6-8 years has had a direct impact on the shoulder replacement surgery I had in 2013, the hip replacement I need in the future, the knees which are both shot and the right shoulder replacement I will need (rather than rotator cuff repair).

I injected MTX for close to a year. It's amazing how much better I felt very soon after I began! I do warn you that I am one of those for whom the GI side effects never left. I've been injecting Humira for almost three years. This summer, now that my undiagnosed Graves disease has been treated, now that I am properly medicated with the right amount of Progesterone and now that I have Humira, I've felt better than since at least the summer of 2004!

As to talking to my spouse, here's what I wrote in an earlier response:

We've been through hell for at least the last five years. I spent a LONG time doing nothing but working, coming home and not sleeping well. Paul spent a LONG time getting more and more frustrated that I couldn't do the things we used to do. I can't tell you the number of times he mentioned how we used to take walks and now we weren't and so many other things. He was frustrated that I would not take the step to see a rheumatologist. I was frustrated that I couldn't take that step either. In 2010, we physically separated in that I began to sleep on the couch and he in our bedroom simply because I could not sleep in our bed any more. It was just too painful.

We went through worse hell after I had shoulder surgery in 2013. I wanted to curl in on myself. He wanted me able to make decisions. I don't know how we made it through that first week other than we're both too stubborn to give up on each other. Except that I almost did for the latter part of 2013 and the first seven months of 2014. I lost my center--our relationship--it affected every part of my life.

We FINALLY began to talk when I went through my cancer scare last year. He held my hand through doctor’s appointments, physical exams, a biopsy, two ultrasounds and a preop. He was THERE for me while I struggled to acclimate to the med, THERE for me the night he took me to the ER and we discovered I was two units down on blood. THERE for me as we grieved the fact that we would never have children. THERE for me the day I was told I needed to decide whether to have a hysterectomy and THERE for me on December 1, 2014, when the meds finally kicked in. He held me as I cried, sometimes knowing why I did and sometimes, only knowing I needed to grieve or was scared…and how hard tears come for me. All that time, the only thing I ever saw was love in those beautiful blue eyes. He has been angry and frustrated—and his voice has shown it--but it’s anger or frustration at the particular situation.

Slowly, slowly over that time, we began to talk.We cried a lot. We talked about how frustrated we both were by PsA. We were more bluntly honest with each other than we had ever been in the 35 years (then) we had known each other, more bluntly honest than we had ever been in the 31 (then) years of our marriage. We cried some more. We found our way back to each other because we're better together than we are separately.

He went to court with me in December of last year and when I was second-guessing myself, he said I think you’re a hell of a lawyer. You did your job. Other people needed to do theirs. He drove me to the penitentiary Friday of the week I testified—and I got to see it through his eyes, not my jaded ones. He was in court with me in May and began to understand in a very real way why I'm on a trial team and why I'm working so hard for this client. He was appalled at the "just us" present in that client's case. He was in court with me as I testified for another client last month. On the way home, he told me he was proud to sit and watch me testify, proud of me and proud of the work I do.

We've gone through a bit of a bad patch in the last couple of weeks, part of which is caused by me taking Methimazole for Graves disease, both of which have left my mood uncertain at times. We're talking (and we cried) our way through it, including the whys and wherefores of why my feelings were hurt and how we might change things. it's working for the most part--I was disappointed this morning but not angry and that's a big step from where we were even three weeks ago.

One more thing, since the meds kicked in on December 1 of last year, I still go to sleep in the recliner but most mornings, I'm in bed with him (we HAVE to get a new bed SOON). More than one person, including my rheumatologist , when I saw him in August, has remarked how different we look and sound. (I think Paul and I may have blushed). It means a lot to both of us that we're able to share--and enjoy--that closeness again.

That's a long-winded way of saying we've been through hell but we found our way through it even though I'm still not sure why or how we did it, other than sheer stubbornness, the fact that we were friends before we were lovers or married, and we both realize we're better as the two of us fighting this PsA and all our other battles. You are right, however, that coming through the quagmire into more surety about what's going on is HUGE for both of you. Now it's coming to grips with the fact that PsA is an insidious thing, waiting to grab at the damnedest times.

I don't particularly like this piece but it can be helpful for others to understand. For us I think it mucks around in self pity too much, but it is a great visual for spouses and family. Print two copies one for hubbie pillow and tape one to the fridge:

BTW we have a great little winery up the Road called Ten Spoons Winery. Its was designated the official wine of LWPSA

Gawd, I miss a libation--maybe a bit of Laphroaig or a straight Amaretto--every now and again. Dr. Abbas says a rare glass of wine won't hurt, but I don't want wine, even Ten Spoons, the official wine of LWPsA.

It's not the same thing--maybe a little close in terms of comfort taken--but I hope never to have to give up on the occasional hit of chocolate chip cookie dough (not the ice cream, the honest to God cookie dough).