I've been looking back at the history on this site to see what kinds of side effects people have experienced while on MTX. I know the gastrointestinal stuff is pretty common, but I wondered how many of you experienced emotional/psychological side effects: depression, lack of interest, difficulty engaging in life, emotional exhaustion, etc.?
I started on MTX when first diagnosed with PsA, but my rheum stopped it and switched to Arava when I complained about feeling more anxious. Arava made me so sensitive to the sun that I couldn't be outside without covering (and I really like the sun) so I switched back to MTX about 6 weeks ago. I'm also on a biologic (Stelara).
For the past two weeks or so I have felt like I'm in a fog most of the time. It's difficult to do anything. I have to force myself to engage because I know, mentally, that I should. But emotionally I don't feel like doing anything -- except doing nothing makes me feel worse.
My right TMJ is a mess. I had surgery about 8 months ago but the pain is still there. The latest arthrogram shows severe degeneration of the joint and I'm anticipating that when I see my oral surgeon again next week he will recommend total joint replacement. So, I have chronic pain in that joint, and I know that chronic pain can also cause depression.
This is a dark cycle that I need to break! Anyway, I'm wondering if anyone has experienced similar emotional side effects from taking MTX.
At this point I'm thinking of stopping the MTX. My joints might not be happy, but I can't live in this dark fog much longer and I don't know what else would be doing this (other than the fact that I have three teenagers).
I wish all these drugs we have to take would not have so many dang side effects!! My biggest complaint, and still is... I keep losing my hair... but it is not really that important ( vanity) yours is important... could it be the combination of the two drugs? the strength of the medication... talk to the doctor... I know it stressful... but it may take awhile to find the right combination for you. Teenagers are stressful enuf?? lol... jk...
I myself.. love being outside... the metho.. does make the sun much stronger - i protect myself with a floppy wide sun hat.. work in the shade during the day .. and where the sun bears down during the day.. i take care of those places in the early evening....
I did have stomach issues.. only the first few weeks... it gradually went away.
My joint problem is at the other end of the body... my big toe!! I was dumbfounded when I found out - they have joint replacements -- there too....
For me, and a number of people here on the board, the depression and fogginess is from the PsA not the meds. Some people report that as soon as they start a biologic there depression and fuzziness lifts quickly. It didn't happen that way for me but my PsA has been difficult to control. I am on my 6th biologic in as many years. When my meds are controlling my PsA my depression and fuzziness lift gently but steadily. I do take an anti depressant and see a therapist and try to control stress but I do know controlling my PsA is a huge component in lifting the depression and feeling more mentally clear.
I personally felt that the MTX gave me short-term anxiety. The reason I associated it with the MTX is that from day one, I took the MTX at night and went to sleep and noticed nothing - after a few months I forgot it and took it in the morning, as all the gastro symptoms had abated by then.
I felt uneasy and uncomfortable until 4 in the afternoon, and noticed it happened every time I took the MTX in the morning.
The fog though, that’s always been the disease for me. The MTX never made me foggy, nor any of the other meds - it was always PsA.
Note that people with normal immune systems get the same fog when they are fighting something significant like the flu, and their inflammation is up, so its not really surprising.
Thanks so much for the reply! I'm so sorry to hear about your hair loss -- does that subside over time?
I am so thankful for all the drugs we have, but often frustrated that almost all of them come with side effects. I guess when you're manipulating the body with chemicals it can't be ALL good.
Fortunately, the MTX doesn't give me sun sensitivity, but the Arava sure does -- any exposure to sun makes me itch all over. I think I can safely say that was, indeed, the Arava because as soon as I stopped taking it I had no trouble with the sun at all.
I have arthritis in my big toe, too! Yours might be much worse than mine, though. Are you thinking of having joint replacement there?
Thanks again for your kind response! Means a lot.
Niel
Karen said:
Niel,
I wish all these drugs we have to take would not have so many dang side effects!! My biggest complaint, and still is... I keep losing my hair... but it is not really that important ( vanity) yours is important... could it be the combination of the two drugs? the strength of the medication... talk to the doctor... I know it stressful... but it may take awhile to find the right combination for you. Teenagers are stressful enuf?? lol... jk...
I myself.. love being outside... the metho.. does make the sun much stronger - i protect myself with a floppy wide sun hat.. work in the shade during the day .. and where the sun bears down during the day.. i take care of those places in the early evening....
I did have stomach issues.. only the first few weeks... it gradually went away.
My joint problem is at the other end of the body... my big toe!! I was dumbfounded when I found out - they have joint replacements -- there too....
I personally felt that the MTX gave me short-term anxiety. The reason I associated it with the MTX is that from day one, I took the MTX at night and went to sleep and noticed nothing - after a few months I forgot it and took it in the morning, as all the gastro symptoms had abated by then.
I felt uneasy and uncomfortable until 4 in the afternoon, and noticed it happened every time I took the MTX in the morning.
The fog though, that's always been the disease for me. The MTX never made me foggy, nor any of the other meds - it was always PsA.
Note that people with normal immune systems get the same fog when they are fighting something significant like the flu, and their inflammation is up, so its not really surprising.
Jen,
You're probably right about the disease causing more than I'm giving it credit for -- fogginess, for instance. I wish I could blame these feelings on a med because then I have the option of STOPPING them by stopping the med. Control. That's one of the things this disease has robbed from me. Control.
I might hold off on stopping the MTX. Still trying to decide. I'm scheduled to take it again on Monday.
Thanks so much for responding. Your comment makes a great deal of sense -- autoimmune diseases are always fighting something and that takes so much out of us...
U r going to laugh.. I have already had a toe replacement on Left big toe last November.. And the hair loss is ongoing..I guess wigs will follow
With our disease. All I care about, is no pain..
That is all I want
Karen Niel said:
Karen,
Thanks so much for the reply! I'm so sorry to hear about your hair loss -- does that subside over time?
I am so thankful for all the drugs we have, but often frustrated that almost all of them come with side effects. I guess when you're manipulating the body with chemicals it can't be ALL good.
Fortunately, the MTX doesn't give me sun sensitivity, but the Arava sure does -- any exposure to sun makes me itch all over. I think I can safely say that was, indeed, the Arava because as soon as I stopped taking it I had no trouble with the sun at all.
I have arthritis in my big toe, too! Yours might be much worse than mine, though. Are you thinking of having joint replacement there?
Thanks again for your kind response! Means a lot.
Niel
Karen said:
Niel,
I wish all these drugs we have to take would not have so many dang side effects!! My biggest complaint, and still is... I keep losing my hair... but it is not really that important ( vanity) yours is important... could it be the combination of the two drugs? the strength of the medication... talk to the doctor... I know it stressful... but it may take awhile to find the right combination for you. Teenagers are stressful enuf?? lol... jk...
I myself.. love being outside... the metho.. does make the sun much stronger - i protect myself with a floppy wide sun hat.. work in the shade during the day .. and where the sun bears down during the day.. i take care of those places in the early evening....
I did have stomach issues.. only the first few weeks... it gradually went away.
My joint problem is at the other end of the body... my big toe!! I was dumbfounded when I found out - they have joint replacements -- there too....
I DID laugh! At first -- but I'm so sorry you had to have that done:( It looks like my first joint replacement will be my right TMJ. The next might be my right big toe -- or my right knee. Life without pain...I've forgotten what that feels like. But I want it back -- for you as well.
Karen said:
Hi Nil,
U r going to laugh.. I have already had a toe replacement on Left big toe last November.. And the hair loss is ongoing..I guess wigs will follow
With our disease. All I care about, is no pain..
That is all I want
Karen Niel said:
Karen,
Thanks so much for the reply! I'm so sorry to hear about your hair loss -- does that subside over time?
I am so thankful for all the drugs we have, but often frustrated that almost all of them come with side effects. I guess when you're manipulating the body with chemicals it can't be ALL good.
Fortunately, the MTX doesn't give me sun sensitivity, but the Arava sure does -- any exposure to sun makes me itch all over. I think I can safely say that was, indeed, the Arava because as soon as I stopped taking it I had no trouble with the sun at all.
I have arthritis in my big toe, too! Yours might be much worse than mine, though. Are you thinking of having joint replacement there?
Thanks again for your kind response! Means a lot.
Niel
Karen said:
Niel,
I wish all these drugs we have to take would not have so many dang side effects!! My biggest complaint, and still is... I keep losing my hair... but it is not really that important ( vanity) yours is important... could it be the combination of the two drugs? the strength of the medication... talk to the doctor... I know it stressful... but it may take awhile to find the right combination for you. Teenagers are stressful enuf?? lol... jk...
I myself.. love being outside... the metho.. does make the sun much stronger - i protect myself with a floppy wide sun hat.. work in the shade during the day .. and where the sun bears down during the day.. i take care of those places in the early evening....
I did have stomach issues.. only the first few weeks... it gradually went away.
My joint problem is at the other end of the body... my big toe!! I was dumbfounded when I found out - they have joint replacements -- there too....
That is a statement I wish could get imprinted in very members (including my) brain. None of the meds cause near the problems we give them credit for. They are disease modifying drugs (even the biologics are classed by many experts as DMARDS) Yeah we have side effects from the meds, but we all too frequently fight the treatment harder than the disease.
I can't/won't advise as to stopping or not the MTX beyond saying there almost always is a work around for most meds if one commits to fighting the disease.
Thank you Niel for the great reminder.
Niel said:
You're probably right about the disease causing more than I'm giving it credit for -- fogginess, for instance. I wish I could blame these feelings on a med because then I have the option of STOPPING them by stopping the med. Control. That's one of the things this disease has robbed from me. Control.
I get all sorts of weepy and cranky the day after I do my MTX shot. I had my dose halved last week to 10mg, because I've responded well to Enbrel, and I was about half as weepy and cranky. It also makes me exhausted and dim-witted.
That said, I think it had some impact on the disease process and I'm glad my doctor prescribed it.
All this talk about mtx and other DMARDS scares me. Should I expect my Enbrel to not work completely and need a DMARD along with it, or do some people get by with just the biologic? I have never been one to jump into taking meds... It was a huge decision to get on the biologic-it was a huge decision 10 years ago to go on a BP med, and my internist cannot convince me to take something to reduce my cholesterol, since my logic is that my happy cholesterol number is really high so that takes care of the bad cholesterol. I think I'm in pretty good shape, all things considered, and sometimes I think less is better. So far I've not had much trouble with SEs from any med. I guess so far I've been very lucky!
All I can help you with is say. First, talk to your doctor.. Then do your homework. I made a list of pros and con's of the side effects. The most important thing to do.. Is to ask your doctor to document for u..all the xrays, blood tests. Mri's, etc..so u can see the progression of the disease.
For me it was very aggressive and destructive.. I had the disease, in 2007 and it took me till 2012 to accept the fact that I couldn't fight it by myself.
I have been on Enbrel, since October 2012..with no side effects. I did have to include methotrexate, only to subside the skin issues.. Enbrel, for the pain control, was a wonder drug for me. Every body is different, your doctor will help u find the right combination..
sybil, you've encouraged me to stick with the MTX for a bit longer. Taking another dose today. Fight the disease, not the treatment, right??
sybil said:
I find it very hard to be objective about drugs. My default position is to tell myself they are causing no side effects and to try to stick with that unless I get definite evidence to the contrary. I could easily blame the drugs I take for all sorts because they are tangible things which can indeed cause side effects whilst my mind ..... well, goodness only knows what's going on in there half the time!
I'm not saying you're imagining how you're feeling, far from it. I just wonder whether it is down to mtx, the same as you're obviously wondering. I felt rather anxious whilst taking Leflunomide but never did find out whether it was to blame. When I stopped taking it I felt better. But .... stopping it coincided with my rheumy's decision to start me on a biologic .... could be that relief at that decision stopped the anxiety, could be that as Leflunomide was my third DMARD and none of them had really helped I'd just about had enough & that's why I'd been feeling anxious.
Maybe I think too much! But it's so hard to untangle the drugs from the changes or just the damn continuity of PsA that coincides with starting or stopping them. Perhaps you could address one thing at a time. The depression you describe sounds wretched but you yourself are already suggesting part of the answer .... forcing yourself to 'engage', doing everything and anything you can to break the dark cycle. I'm not explaining myself well, perhaps I'm a bit foggy myself today. But I reckon putting a bottle of pills at the back of the cupboard is easy, and all the things we have to do to stay in a good place emotionally are not so easy .... it's just that you sound as if you are up for the battle really.
Oh, just re-read your post - three teenagers! I've been there with three sons and as I recall they can take it out of you just a little bit! You do have a lot going on, it ain't easy. Still reckon you might not need to ditch the drugs though.