First Appointment Today....

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RA+CDhouse
Regular Member


Date Joined Nov 2007
Total Posts : 99
   Posted 5/27/2008 6:50 AM (GMT -7)   
At long last, it's the day of my 1st rheummy appointment!  I have waited 6 weeks for this stinking appointment!
 
I would be shocked if she doesn't think I have RA (or some other A); my boss is a rheummy who doesn't see patients anymore, and he told me to get myself seen!
 
So, I have had my symptoms for at least 3 months now: knees, feet, fingers, wrists, and elbows.  Pins and needles feelings (fingers), achiness (fingers, knees, wrists), sharp stabs of pain every once in a while (fingers/toes), feeling like my arms are on fire, elbow problems (you don't know what actions involve the elbow joint until you have a problem with your elbow joint, LOL).
 
Stiffness in morning lasts about 1 hours; my symptoms are actually worse once I lay down at night to go to sleep.  The fingers, wrist, arm stuff gets worse with activity.  Hubby and I have been testing recliners for the last few days--ouchie!
 
OK,  I don't have any kind of tests to bring to this appointment, since I just called my primary care's office and told them I wanted a referral.
 
Help me make the most of my appointment:  what should I make sure she asks/does/talks about? (I did fill out an extensive patient questionnaire that I am supposed to bring with me).  What tests should she order?  Are they reliable?  Would it be rude of me to ask her if she is the kind of doc that goes stictly by blood test results or does she factor in how I actually feel?
 
What chances to you think that she could at least give me something at this appointment for the inflammation/acheyness/pains that I am having, before any actual rest results are in?
 
I think that is all my questions; can you think of anything else that I need in order to go in as an informed, pro-active patient?
 
Thanks for reading this long post.
 
--(not so) newcrohnswife
Learning can only happen when a child is interested.  If he's not interested, it's like throwing marshmallows at his head and calling it eating.  Make him interested!


sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 5/27/2008 3:44 PM (GMT -7)   
newchronswife. I am sorry I did not see this post earlier your appointment is probably over by now.
I hope it went well. If you tell us what tests were ordered or any questions you still have after the appointment we can try to help.
My rhuemy made me wait until the second appointment for drugs (and I had been diagnosed ten years before) but she got me in for that only one week after the first appointment.
Sj

RA+CDhouse
Regular Member


Date Joined Nov 2007
Total Posts : 99
   Posted 5/27/2008 6:28 PM (GMT -7)   
Hi and thanks for the reply...
 
Appointment went well, I think...let me explain...I filled out about 8 pages of questionnaire, symptoms check-off stuff before i even went.  No test were done beforehand as mentioned already.  She went over everything, plus asked for more details.  I guess because of what I've been going through with hubby and crohn's, I've got things documented out the whaaazooo.
 
She then did an examinaation of fingers, hands, wrists, feet, etc.  I had had a blood work-up for my annual checkup back in December and she retrieved those results.  She went on to explain a bit about meds, the importance of catching RA early, and how well it can be treated in someone "young" like me (43). 
 
She put me on methotrexate (sp?) told me to start today; it's a low dose apparently (4 2.5 mg pills a week) and naproxyn (sp?).  Said to get bloodwork done after 3rd dose of the methotrexate.
 
She said that she could do bloodwork first, which could come back neg; but she also treats based on "obvious" clinical observations, which she felt I had.  She says that RA factor could take a year after symptoms show up to actually be elevated, anyone heard that before?
 
Told boss how things went.  He seemed a bit suprised that she dx'd RA, he said that he would have leaned towared osteo....I told him that there were some things going on since we had last talked (and he told me to get seen).  Then he concurred.
 
So, she feels based on her examination and my detailed descriptions (with family history) that it is RA.  I will take my first dose of methotrexate tonight; she says to not start the naproxyn for a few days after that.
 
What do you think of that?  There's probably some things I left out, but my hands are killing me.  Off to just read about these drugs...
 
--newcrohnswife
Learning can only happen when a child is interested.  If he's not interested, it's like throwing marshmallows at his head and calling it eating.  Make him interested!


sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 5/27/2008 6:50 PM (GMT -7)   
Sounds like you have a good rhuemy-she is right about tests sometimes not turning positive for a year.
I started on the same dose of mtx. You need to take folic acid every day-if she did not tell you that she should have-drink lots of water the day of and day after.
The reading about mtx is scarier then the drug. We have threads on this site of stories about people starting mtx-we were mostly apprehensive at first but for me anyway it has worked out well. I am on week seven right now.
Hope the meds help you-mtx will take a while (2 months or more) to kick in. You will probably need to go up to 6 or 8 pills eventually.
Sj

RA+CDhouse
Regular Member


Date Joined Nov 2007
Total Posts : 99
   Posted 5/28/2008 5:10 AM (GMT -7)   

Hi and thanks again.  She did mention something about folic acid, but didn't say to take any...wish I had paid attention a little better on that one.  What is the reason for the folic acid?  She did ask me if I ate lots of leafy greens, which I do.

Took the first dose of meth. last night about 1 hour before bed; felt whoosie for a while before falling asleep, I guess that is normal?

Oh, and I can't beleive I forgot this in my last post: pharmacy would not fill the naproxyn script they said it interacts with the methotrexate.  And in the patient information sheet that you get with your script, sure enough it talked about that....

Why would she give me that then?  She did say something about since we don't need to be concerned about stomach ulers in me that it would be OK.  At least I think that's what she said.  Anyway, pharmacy was waiting for a call back from doc before filling it.  Since she had said to wait a few days after the methotrexate to start that, I didn't make a big deal out of it.

 

OH---I remember now.  She said something about getting sores in my mouth, and if that happened then we would do folic acid!!!  So, should I just take some anyway?  I really would rather not wait to see if I get SORES in my mouth....

--newcrohnswife

 

 

 



Learning can only happen when a child is interested.  If he's not interested, it's like throwing marshmallows at his head and calling it eating.  Make him interested!


momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 5/28/2008 7:07 AM (GMT -7)   
Hi,
 
Yes, you should go ahead and take the folic acid. You don't a script for it and the typical dose for the folic is 400mcg (take 2).  This is what my rhuemy has always had me take, and if it isn't enough you can always increase it or take a prescription form of the Leucovorin.
 
Goodl luck
 
Oh and you do need to drink more water than you normally would with the MTX!!!

RA+CDhouse
Regular Member


Date Joined Nov 2007
Total Posts : 99
   Posted 5/28/2008 8:41 AM (GMT -7)   

How do I tell if the amount of folic acid isn't enough? The mouth sores?

When you say "drink more water than you normally would"--OK, I normally drink nearly a gallon of water a day!  Should I drink  more than *I* normally would, or more than most people probably would?

I don't feel overly tired today; no headache either.  These are what I see can most commonly happen; so other than feeling a bit queezy last night, so far, so good.

--newcrohnswife

 


Learning can only happen when a child is interested.  If he's not interested, it's like throwing marshmallows at his head and calling it eating.  Make him interested!


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 5/28/2008 10:54 AM (GMT -7)   
I guess everyone is different but for me I take 8 pills per week, and if I don't take the folic acid for a few days (I ran out once), I start getting small sores on my tongue. I suppose not everyone has reactions to the MTX but for me I had a rough start and it was more than I could handle and I had to take the Leucovorin in addition to the folic acid, since I was so tired, I felt like I was wading through quicksand.  If you want you can try the MTX without folic acid, I just know most people take it along with it.
 
As for the water intake, if I don't drink enough (I know I don't drink a gallon per day!) I get a burning sensation in my hips the next day...not enough water with the MTX seems to intensify the joint pain so I just thought would tell you that dehydration can intensify the joint pain when on MTX.  However, it sounds like you don't need to worry about that!
 
I never had headaches when I first started but with my first few doses, I couldn't stay awake and I had flu like symptoms, with body aches and joint pain, and it took a few weeks to get used to the medication.  I don't think I was the norm though!
 
If you have questions about the folic acid you can always call your doctor or nurse.
 
Good luck!
 

RA+CDhouse
Regular Member


Date Joined Nov 2007
Total Posts : 99
   Posted 5/28/2008 12:18 PM (GMT -7)   

Thanks so much for your help!  I think I might just take some folic acid anyway...

I would rather NOT wait till sores show up, as I don't need something else to deal with!

Again, thanks for the help on this thread.

--newcrohnswife

 


Learning can only happen when a child is interested.  If he's not interested, it's like throwing marshmallows at his head and calling it eating.  Make him interested!


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 5/28/2008 2:07 PM (GMT -7)   
I take 3 mgs a day of folic acid. The folic acid protects against mtx toxicity-mouth sores, hair loss, fatuque and it protects your liver. I would take it every day for most people 800 mcgs is enough but if you take that and are still having any of those symptoms take more it is a water soluble vitamin with very low risk of side effects so taking extra is not a problem. You can get 400 mcg pills just about anywhere 1mg (1000 mcg) at any vitamin or nutrition store,

As to the Naproxin-yes absolutely they can interact. I just had to stop taking my NSAIDS-sulindac for that reason. However, it is very rare (my rhuemy says less than 2%) so if your doctor is monitoring your blood counts and she says to take it I would go ahead. I knew immediately that I was having problems because I was suddenly pale and exhausted not just on the day after the dose which is normal but all week long which is not normal. My doc did blood work and told me to stop the NSAIDS even so now that my levels are closer to normal she told me she may let me try taking sulindac again after a while.

Hope you start feeling better soon and have an easier time with the mtx then I did. It does get easier each week.
Sj
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