Med Dosing Questions....

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RA+CDhouse
Regular Member


Date Joined Nov 2007
Total Posts : 99
   Posted 8/20/2008 11:09 AM (GMT -7)   
Hi All!  Haven't been here in a while: life got very crazy!  I was dx'd late in May, and immediately started on mtx 10mg and Naproxen 500 mg x2 per day.  July went back to doc: then MTX 12.5 mg per week, still Naproxen.  August = 3rd doc appt.: MTX now is 15 mg per week and changed to ?Relefen (nabumatone, sorry, probably butchering the spelling) 2 pills once per day.
 
OK, now:  I told the doc at last appt that I wasn't feeling *any* better, I was having a particularly rough day that day; now doc is second quessing her dx; wants to give the mtx 5 more weeks (that's at the 15 mg dose, which I have now taken twice), then re-think.  Well upon reflection, and looking back in my journal to April/May, I have to say that I actaully do feel better; but I don't feel 100%.  Am I expecting too much?  I just thought that I would be feeling ALOT better.  I still have probs almost everywhere: hands, elbows, feet/ankles, knees....hot and humid days or days when I'm a bit active in my personal life, they kill me! Last night I about died just from mopping 2 very small floors: elbows ouch!
 
Doc keeps asking me how long stiffness lasts in the mornings; problem is, I don't think I am that stiff in the moring!  My worst time is at night after working FT, HS-ing work with kids, and just the everyday stuff I do around the house!  When I lay down to go to sleep, that's when I can "feel" it all:  knees/feet/ankles are throbbing; finger joints painful, sometimes elbows too.  Now, I am up and out the door within 1/2 hr of waking up, and I think that I walk "funny" because of my knees; that never really goes away during the day.  Hands will vary, depends on what I am doing at work.
 
WOW, this is getting long.  I guess what I want to know is what to expect with taking these meds?  Is it too much to expect to feel back to 100%?  Is my dose of MTX low, mid, or what?  Should I be taking something else too?
 
She finally is just ordering x-rays of my hands and knees; wish she would've done feet too....oh, and the only test that shows anything is my sed rate, but even that is not *that* high, last one was only 30.
 
I am sorry this is so long; I just am tired of feeling bad most of the time; I feel so bad for my family--I am totally wiped out when I get home most nights!  The MTX makes me sooooo tired (I take it onTues night; would rather be wiped out at work than when I want to be having fun with my kids on the weekend!
 
Well, sorry for such a whiney post!  I don't even have it as bad as some of you!
 
--theresa
 
Be who you are and say what you feel, because those who mind doen't matter and those who matter don't mind.-----Dr. Seuss


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 8/20/2008 1:33 PM (GMT -7)   
Okay, lots of stuff first you said you are really tired from the mtx-that means you are not taking enough folic acid and/or not drinking enough water-try three or more mgs of folic acid every day and two extra glasses of water before the mtx and at least 8 glassess the day after-more if you can.
Dosage of mtx-you are still on the low side you can be prescribed up to 20 orally 25 by injection but you are on the same schedule my rhuemy uses start at ten up it slowly. My rhuemy told me it would take months to see a difference on mtx so if you are seeing some improvement and just went to 15 I would give it more time and pay attention to that journal so at your next appointment you can give an accurate assessment on what symptoms have improved and which ones haven't.
SED rate of 30 "not that high" well no its not outrageous but that is exactly what mine was when my doc convinced me plaquenil wasn't enough and I needed to add mtx. It is high enough for you to feel like carp most of the time.
"I don't even have it as bad as some of you"-don't compare your pain with others. Your pain is interfereing with your life and you deserve good treatment, to understand what is happening to you, to have your questions answered, and to have someone listen to you vent.
I hope you do feel better soon. Do keep us posted.
Sj

RA+CDhouse
Regular Member


Date Joined Nov 2007
Total Posts : 99
   Posted 8/20/2008 5:11 PM (GMT -7)   

hey, thanks for the reply!  and thanks for the great suggestions.  I am only taking 1mg of folic acid, and that's not even her advice (the doc), it's ffrrom my boss, a "retired" rhummy.  So I will up that immediately and be more consistant with taking it.

As for the mtx, I guess I just am not being patien enough.  Are either of these meds supposed to help with the pain?  Is there anything else I could ask for for the REALLY bad days?  I am the breadwinner in the family; DH is a SAHD, but with Crohn's...I have to work!  Sometimes my feet and toes hurt soooo bad, it is hard to walk!

Again, thanks for the advice, and listening to my whine.  My next appointment is Sept. 16.

Oh, and the folic acid I have is 800 mcg--does 1000 mcg = 1 mg? 

~~ pkm ~~

 

 


Be who you are and say what you feel, because those who mind doen't matter and those who matter don't mind.-----Dr. Seuss


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 8/20/2008 5:32 PM (GMT -7)   
1000 mcg=1 mg-yes. I never noticed them working directly on the pain the goal is to reduce the inflamation which reduces the pain.
You may have already answered this but I don't remember are you taking prednisone-can you ask for some or for an increase until the pain gets under control-that really worked for me and although I was prescribed 5 mgs I asked for permission to take 10 on bad days-she said I could but if I needed it I needed mtx-this was back when I was doing anything possible to avoid mtx.

nuttynurse25
Regular Member


Date Joined May 2008
Total Posts : 35
   Posted 8/21/2008 1:46 PM (GMT -7)   
Hey pookie I feel your pain..You get tired of always being in pain and exhaused..If it not the illnes than its the meds....Everyone  tells me it take time for improvemnet...Youve ben feeling like this for a long time....I too had a lot of fatique and pain is my first complaints....I get more stiffness after work in the evening except on my bad days than my whole body is stiff in the morning .(ok thats what it feels like).  like sjky said ask for some predinsone or solumedrol pak to help the crises and pain...My rheumy took me off mtx and put me on arava and plaquanil..my sedrate was74 than it dropped to 45 and now its 30..I do feel less fatique..just hang in there..take care...diane

Trying2BFree
Regular Member


Date Joined Oct 2005
Total Posts : 251
   Posted 8/21/2008 2:20 PM (GMT -7)   
Your symptoms sound so much like mine. I hit the brickwall, so to speak, everyday about 5-6pm and it just gets worse when I finally lay down for the night. I also tend to run low grade fevers during that time. One thing you might consider is taking a hot bath before going to bed, it helps me.

I think you need to give the MTX some time at this higher dose. It took me a good 6 months to feel the difference. I still wasn't 100% so we added a biologic. I don't know if you are expecting too much. I've actually asked my rheumy that exact question. He said some people get there, others don't, but he will do everything he can to see if we can get there. I'm over 2 years into this and still trying. It's a tough road. Take care.
 
I also wanted to say that my Sed rate is usually in the 30-40 range too.  I don't think it's a good indicator of disease activity.
Jeannie 
SLE diagnosis 10/05 now changed to RA 3/06, Endometriosis 5/05, PCOS 1990
Meds: Metformin ER 1500mg (PCOS); Loestrin BCPs (Endo); Methotrexate 15mg (RA); Metanx 5mg (RA); Orencia 750mgs (RA); Lunesta 2mg (as needed); Prevacid


RA+CDhouse
Regular Member


Date Joined Nov 2007
Total Posts : 99
   Posted 8/22/2008 5:40 AM (GMT -7)   

Thank you all for your replies.  I feel better knowing that others are indeed feeling the exact same way as I am !  Misery loves company rignt?

Someone asked if I was on prednisone: nope; she doesn't like to prescribe it; may ask her for it next time.  But I saw what it did to my hubby (he has Crohn's) and I didn't like it!  Scary!  Is it used in lower doses for RA?  Maybe I won't be so scared of it if its lower doses (think he was taking 40mgs or something like that).

I will try to bear with it and give the MTX some more time; I know sed rate isn't a great indicator of disease, but everything else is normal; so why do I feel so bad?  I need to go for x-rays of hands and knees before my next appointment so maybe that will tell us something.  I guess I can be thankful that for right now, while it *is* both knees, both feet, it is only *one* hand that is really really bad; although I am left handed, I use my right hand for almost everything but writing and eating....so it's my right hand that bothers me the most.  Sometimes I have to think really hard about what my left hand is feeling; but I never have to do that with the right.

OK, going off to get some work done, before my hands give out on me!

~~ pkm ~~

 

 


Be who you are and say what you feel, because those who mind doen't matter and those who matter don't mind.-----Dr. Seuss

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