post-MTX blues: Doc says push through it???

[patti2957]

I missed our neighborhood picnic last evening. I took my mtx on Saturday before I realized the gathering was Sunday not Monday. I was a bit bummed, because the day after mtx I'm not up to social events. My husband was chatting with friends, one guy who also is my internist, the one who treated me for Lyme's in March, referred me to my current rheumatologist in April who diagnosed PA.
When my husband told he and his wife (my good friend) I was home recovering, my doc said, "Has she ever tried just pushing through it?"
Am I nuts to be so angry I plan to change internists????? Every post I've read on this board about mtx and day-after fatigue indicates that I'm not the only one who spends the day after on the couch.
I'm going to send them the spoon theory, but what else?? How to educate without seeming to ask for special attention/pity?? Especially a medical professional? Who has patients on mtx?
I don't know how to set up a poll but I'd like to know how many people are plowed the day after....
Anyone else???
Patti

[docmks]

Hi Patti,

I am so sorry that you got that kind of response from a doc! And it feels kind of undermining to you that he would say that to your husband in your absence. No, my dear, you are most certainly not the only one who gets laid out by MTX or, for that matter, Enbrel. These are major meds. And while some folks may not have fatigue or even feel down, somewhat depressed after they take them (as I, like you, do), others do. It is not at all unusual. As we have said countless times on this board, we are all different!. This is not a cookie cutter type disease. We have some basic medical problems in common, but the way the symptoms manifest themselves and the way we respond to treatments is an individual thing.

In my opinion (and it's just that -- my opinion) I would try to have a conversation with your internist about this if you can. I do not blame you for being angry. I, personally would have been livid. I feel like he should've said that to you, not to your husband and in front of his wife (even if she is your best friend). But I would try to preserve the good relationships, here, by educating him, rather than alienating him, if possible. I would let him know that many, many of us simply cannot do social events the day after MTX and other heavy duty meds for reasons of fatigue and depression. And, it is a serious disease we have. We need more rest than others. Above all, you are not asking for special treatment or pity! Don't even think that. You are asking health care providers to learn about a disease from the patients' point of view. Next time you see him, just plan to say something to him about this. And tell him you got a whole community of support behind you.

And, over in "conversations" you'll see a thread labelled "Bite Me" It's a good way to vent when these sorts of things happen (I got to get over there myself today...I should have skipped the neighborhood party!).

You got my vote, Patti! :) Hang in there,

MK

[patti2957]

Your words were just the ones I needed to "hear." I feel so fortunate to have found this community. Aside from the many downers of this disease, I am noticing radical changes in my personality, my perceptions. First is a heightened sense of compassion. I find myself making fewer judgments, letting go of negative attitudes and grudges that, when held up in this new light, dissolve from a lack of substance. And so, as my first instinct- to blast them with anger- begins to diminish, I will take your advice, and try to educate. I am angry at this disease, yes, but thank God I'm not clueless!

My friend the doc's wife, and so many other I know, find daily life totally overwhelming. I dream of days so full of opportunity that my head spins.

thanks again,
patti

[docmks]

Your words were just the ones I needed to "hear." I feel so fortunate to have found this community. Aside from the many downers of this disease, I am noticing radical changes in my personality, my perceptions. First is a heightened sense of compassion. I find myself making fewer judgments, letting go of negative attitudes and grudges that, when held up in this new light, dissolve from a lack of substance. And so, as my first instinct- to blast them with anger- begins to diminish, I will take your advice, and try to educate. I am angry at this disease, yes, but thank God I'm not clueless!

My friend the doc's wife, and so many other I know, find daily life totally overwhelming. I dream of days so full of opportunity that my head spins.

thanks again,
patti

Patti, What a great note. Thank you! I couldn't have made it without this community. And yes, I am angry about this disease, too. Hence my frequent participation in the BITE ME thread. However, the only way I know to deal with the anger is to channel all that energy elsewhere. Compassion, trying to help others, gratitude, these are the best ways I know how to do that. This disease has taught me so much, and I've met some incredible people here.

I set up a poll so others can share their experiences with MTX and fatigue/and or feeling down.

Take care and keep posting,
MK

[patti2957]

Thanks for setting up the poll - I'm eager to see how others fare after the big dose. I can't say I'm hopeful, though, as I wish everyone felt dandy and had enough energy to... feel like their real age??
Seems like a lot of folks did make their Labor Day gigs, the boards have been so quiet. If I get enough replies I'll just print them out and send them down the street for PA-bedside 101.
post soon,
patti

[patti2957]

Researching mtx and I found a survey of patients on it, why, how much and what side effects they're experiencing. very interesting, as the dose for RA is generally half the dose for PA!



http://www.askapatient.com/viewratings.asp?drug=8085&name=METHOTREXATE%20SODIUM&sort=age

[grannyfranny]

Patti,
I was only taking 3 MTX pills and I never got use to the fatigue. I was on it for 7 months and had a hard time just getting out of bed. I slept 9-10 hours at night and took a 2-3 hour nap during the day. People told me you get over it, but I never did. This made me more depressed.

I voted.

[happysmileyface]

I was on mtx for p. and had to go from taking it orally to IM as it made me feel so ill.

Eventually I had to stop the tx altogether as I was so desperately drained of my energy and felt nauseous for the following 3 days after taking my dose.There is no way I could 'push through' and thankfully I had very supportive nurses and doctors.

I missed our neighborhood picnic last evening. I took my mtx on Saturday before I realized the gathering was Sunday not Monday. I was a bit bummed, because the day after mtx I'm not up to social events. My husband was chatting with friends, one guy who also is my internist, the one who treated me for Lyme's in March, referred me to my current rheumatologist in April who diagnosed PA.
When my husband told he and his wife (my good friend) I was home recovering, my doc said, "Has she ever tried just pushing through it?"
Am I nuts to be so angry I plan to change internists????? Every post I've read on this board about mtx and day-after fatigue indicates that I'm not the only one who spends the day after on the couch.
I'm going to send them the spoon theory, but what else?? How to educate without seeming to ask for special attention/pity?? Especially a medical professional? Who has patients on mtx?
I don't know how to set up a poll but I'd like to know how many people are plowed the day after....
Anyone else???
Patti

[patti2957]

I'm beginning to belive, unfortunately, that a high percentage of mtx users, with PA anyway, are wiped out by each dose. I don't know why the dose for RA is half the dose for PA, at least according to the research I've done. I could take 3 pills and not be so wiped. Oh well, I never strive to be "in the box," so I guess this isn't any different:)
Thanks for your post, happysmileyface; what med(s) do you take now?
patti

[Wendy77]

Hi patti,
How are you? Sorry but I've been away in hospital and therefore could not reply to you.

Currently I am waiting for Raptiva but it's very difficult here. No one else has ever had it in my community, ever!! I have an appointment for the end of November, so I'll have to wait and see. I may get nothing!!

Please keep in touch and thank you once again for you kind support and prayers,

Wendy....
......................................keeo smiling!!!!!!!!!

[boundaryseeker]

I cant help but spend "the day after" mtx resting and nodding off throughout the day - and yes, sometimes into the next day as well.
I spent my birthday "couching out", others thought that it was so boring, but its my day, and that's how I spent it.
PA is teaching me too, I am learning to be more compassionate too, and yes, even to myself.
Big Hi to all the wonderful people here. Keep posting.