First Dose of Methotrexate and Questions Vol. 2

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Ducky
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Date Joined Mar 2005
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   Posted 6/14/2007 1:52 PM (GMT -7)   
Here is the link to the first thread.. Please.. continue on.. :-)
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njcats
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Date Joined Jun 2007
Total Posts : 22
   Posted 6/15/2007 4:16 AM (GMT -7)   
Hello all!  Momto3, I'm like you, small boned [also wear a size 5 ring] but my fingers are ok.  I seem to be ok lately.  I'm having a good month, no pain, swelling or anything like when I was first diagnosed so a sence of security is keeping me thinking I don't need this stuff anymore.  I'm going to my reg. Dr. to consult him to see what he has to say about all this.  I'm sure he'll just tell me he can't help me, he's not a rheumatologist, but I'll give it a try.  Can't hurt, right?  I'm really not getting a good feeling about my rheumy Dr.  He doen't have a good "bedside manner".  Perhaps I just need to switch & go somewhere else.  If I'm not secure with him I'm sure you'd all agree to go elsewhere.  Even if I must continue with mtx at least [I'm hoping] a new Dr. will be alittle more sensitive to my concerns.  That's what's bothering me the most I think.  This guy just brushes me off with a hand wave, like, "don't worry so much" when I AM worried.  Anyone here with a unconcerned Dr. like this?  Thank you all.  Have a good day. tongue    P.S. I must say, it seems like this Dr. has lots of geriatric people who, perhaps are not willing to question their Dr.  Us "youngsters" aren't willing to be led like sheep & just follow along blindly & ask more questions then our elders do/did.  What do you think? 

momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 6/15/2007 6:40 AM (GMT -7)   
Hi nj, well yes if you are uneasy with your doctor, you should go and seek a second opinion and get a feel for a different bedside manner. For me I like mine okay and he is treating me even though I am sero negative, when some do not. I remember one time I told him that I really felt bad for people who truly have RA, and that I could only imagine what their pain level must be (since I hurt so much) and that is when he explained that he was indeed taking me seriously even with my negative tests. Also that just because you are negative doesn't always mean you are okay, and that is also when I became really scared too!! However, he usually doles out the meds according to my symptoms or flares. I am terrified to call and tell them the MTX is not working as well as it should be for fear of what I will get next. Other than that he is very conservative with them, although I think he is really becoming concerned with me.

If you are doing well right now perhaps you can let up a bit on your medications, there is nothing wrong with that either...let your body be your guide. I have not been able to do this myself. Stress and fatigue are my worst enemies, I was up all night and have had no sleep and now I am in quite a flare! As I have told my husband who has trouble comprehending the situation..I'm taking some pretty toxic medication, that is used for cancer patients, and its not helping me!!! there is something very wrong here! So if you are not at this level tell your doctor you don't need it at least not right now, and its okay.

At this point there aren't many others except for here that truly understand how it FEELS to be in this boat! I hate RA, hate hate hate it!

Yes, there are many older patients when I go in as well, and ironically they move quite well!! However, I did see one older lady who was doing what must have been an infusion, and that didn't look fun :( So they must do them right there in the office... but I have never seen anyone my age in there, but usually the office is not terribly busy, although getting an appointment is next to impossible.

njcats
Regular Member


Date Joined Jun 2007
Total Posts : 22
   Posted 6/15/2007 12:03 PM (GMT -7)   
Ya know, Momto3, my Dr. wanted me to do the IV thing also.  I suppose he thinks I need/needed it.  But like I mentioned before I said no to that one!This false sence of security is making me believe I don't need this mtx.  Unlike you, again, I'm doing ok.  Gosh, I wish you well, I wish you to get back to your normal life!  I feel so bad for all of you that feel so lousy, in pain, constant flare-ups even WITH mtx!  Maybe someday I'll be in the same boat, but for now I'm quiting!  I'm gonna try just Naproxen alone, go to my GP & find out where I am in all this.  If I'm a fool, so be it.  I'll find that out on my own.  At least you'll all be here for me if I fall!  Wish me luck ladies [& gents].  I'm FREE for the time being!!!! scool :)  >^..^<   Heck, I wonder how long I can take Naproxen? I take "the little purple pill" to protect my stomach....Nexium.  Well, I'll find that out too!  Take Care.

Post Edited (njcats) : 6/15/2007 1:08:09 PM (GMT-6)


CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 6/16/2007 9:09 AM (GMT -7)   
Njcats - be careful, just like the bipolar patient - they feel great and cured when on their meds, but when they get off them, their medical issues reappear. Sorry if that is a bad example, my friend had this issue recently with her husband and it came to mind.  Unfortunately, arthritis goes in remission, but it doesn't go away. I hope you can cut back on your meds - but don't be surprised if you need them again in the future.
 
Another thing to consider - some of these meds help "slow the progression of arthritis" (like mthx) which helps save your joints in the long run. NSAIDS help inflammation and pain, but the problem supposedly isn't subsiding. 
 
On thread 1 someone was talking about Plaquenil and eyesight concerns. I've been on it for 2 years. My opthamologist said in his 30 years of patients he's NEVER seen a problem with a patient's eyes getting toxic (or whatever it is they say happens) who are on plaquenil. His feeling is, the dosage they give out these days isn't strong enough. However, it is still a good idea to get checked regularly to be safe.
*****
 


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 6/16/2007 5:31 PM (GMT -7)   
hi njcats!
 
hmmm...yeah the doc situation is tricky.
if a physician is GOOD, i'm like..."well who cares if he's a ****".
but if his attiude is hindering & actually stopping you from getting the best treatment possible...then he needs to go!
 
the worst thing ever is a pt. not speaking up about something b/c  he or she is afraid of what the Dr. will think or do (or not do).
 
comunication is probably the most important factor in dealing with rheumatic diseases.
best wishes always
erin 
Arthritis Forum Moderator & Co-Pilot
Active Severe Rheumatory Arthritis. AS. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Kidney Stones (oh joy). Previous Lymes Disease for 10 years.
Meds: Remicade infusions 600mg Q3weeks; Intra-articular knee injections; 6MP 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 20mgQD; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm; Diazepam 5mg; Rozerem 8mg; Diclofenac; Celebrex; Percogesic; Dilaudid 4mg. 


njcats
Regular Member


Date Joined Jun 2007
Total Posts : 22
   Posted 6/17/2007 9:17 AM (GMT -7)   
Yes, CaMama, I think I'm in denial. I so understand what you said about feeling good, quiting, then everything comes back maybe even twofold. I'm still going to talk to my regular Dr. & take my chances, but I'll have noone to blame but myself. I'm sitting here feeling so good, it's a beautiful day, the birds are singing & doing laundry [believe it or not, I like doing laundry!] & wondering what in the world happened to me. Well, I'll just do what I said before & report back in a while. Thanks all for talking to me.

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 6/17/2007 2:48 PM (GMT -7)   
where in NJ do you live where your birds do your laundry for you?
talk about service!
lol

;)
Arthritis Forum Moderator & Co-Pilot
Active Severe Rheumatory Arthritis. AS. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Kidney Stones (oh joy). Previous Lymes Disease for 10 years.
Meds: Remicade infusions 600mg Q3weeks; Intra-articular knee injections; 6MP 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 20mgQD; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm; Diazepam 5mg; Rozerem 8mg; Diclofenac; Celebrex; Percogesic; Dilaudid 4mg. 


iMarzz
Regular Member


Date Joined Apr 2006
Total Posts : 103
   Posted 6/17/2007 5:48 PM (GMT -7)   
NJ

I live in NW NJ and I think my rheumy is great. He's in Rockaway (70 miles round trip for me out in the middle of nowhere) He's very caring and I thought he would cause me alot of pain during an examination but he is very gentle and very up to date when it comes to RA management. If you have read it in the latest rheumatology journal so has he.

Mary

njcats
Regular Member


Date Joined Jun 2007
Total Posts : 22
   Posted 6/18/2007 3:47 AM (GMT -7)   
erinK., LOL- Glad to make you smile with that one! iMarzz, I'm in central NJ, Middlesex Cty., too far for me. There's plenty of Dr's here for me too choose from. I picked this guy because he could see me pronto when I needed him. But there's another one I'm going to see that's just about 3 miles from my house. You see, I have a 20 yr old car that can only travel short distances...and I loath to ask for a ride. Noone wants to go to the Dr's as it is, let alone give someone a ride to one & sit in the waiting room. I'll do fine. Should've gone to this other guy in the first place, but how would I know unless I tried? Good day everyone!

iMarzz
Regular Member


Date Joined Apr 2006
Total Posts : 103
   Posted 6/18/2007 4:49 AM (GMT -7)   
Good luck njcats - nice to meet the Jersey Girls

CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 6/18/2007 8:15 AM (GMT -7)   

I'm glad you are going to try out a new doctor. It's not fun having to waste your time seeign someone you don't like. How can you trust them and what they want to do for you?

****


 


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 6/18/2007 8:49 AM (GMT -7)   
Hi, and it was me talking about plaquenil and eyesight issues. Plaquenil is known to cause problems after long periods of time using it. When I went in, I failed part of my screening that is done for patients who specifically take plaquenil. However, since I did not have a baseline test done, we are not sure if it how my eyes are or if it is indeed the medication. Plaquenil is given out in a high enough dosage to damage your eyesight IF you take it over a long enough period of time. However, this does not happen with every patient.

babyplace
Regular Member


Date Joined May 2007
Total Posts : 499
   Posted 6/19/2007 5:13 AM (GMT -7)   
Hey njcats,
Hope the new doc works out well for you, please keep us posted as to how you're doing...thinking of you!
Jody

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 6/19/2007 8:14 AM (GMT -7)   

That's pretty scary, Mom.  I do know that my opthomalogist said he doesn't see any plaquenil toxicity, but I have been having problems for the last year that I am "too young to have" according to him. Makes me wonder if he told me that "I haven't seen...." speech to make me not worry.  I'm not all that worried now that I finally have the regular eye check ups going on- the plaquenil works too well for me to stop it unless I absolutely have to or (G-d forbid!), it stops working! Hopefully neither will NEVER happen! 

****


 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 6/19/2007 12:29 PM (GMT -7)   
whoa-waw-waw-wee-wah-wah...hey 3 of us are in northern/western NJ?!?!!?
any of you (NJCATS & iMArzz) near Pompton Plains? and if so...there's a huge rheumatology office building at a funky intersection between a Century 21 office & Chilton Hospital's business office...it huge...anyone go to that?
just taking a shot here...i forget the road name.
my hunny lives there & i'm there half of the week.
i love Pequannok (i spelt that wrong i know)
anyways...cool beans!
ciao.
Arthritis Forum Moderator & Co-Pilot
Active Severe Rheumatory Arthritis. AS. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Kidney Stones (oh joy). Previous Lymes Disease for 10 years.
Meds: Remicade infusions 600mg Q3weeks; Intra-articular knee injections; 6MP 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 20mgQD; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm; Diazepam 5mg; Rozerem 8mg; Diclofenac; Celebrex; Percogesic; Dilaudid 4mg. 


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 6/19/2007 12:34 PM (GMT -7)   
Camama...I know what you mean about the plaquenil working!!! I don't want it taken away either!!! Without it I just hurt to much! I am only supposed to be taking one pill but have been sneaking two and will just have to tell the doc one doesn't work! I NEED two :)

babyplace
Regular Member


Date Joined May 2007
Total Posts : 499
   Posted 7/3/2007 7:27 AM (GMT -7)   
hey mom
Just writing to check in on you...haven't "chatted" with you for a while.How are things going? Seeing the rheumatologist today, not sure what to tell her. This past weekend was really, really rough. Really bad lower back problems, felt like I was doing the 90 year-old shuffle! But not as bad today. How's the summer going with the kids?
Hope you are doing ok!
jody
Ps.   "hi" to everybody else too!! How are all of you?

momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 7/3/2007 9:17 AM (GMT -7)   
Hi Jody,

I'm sorry to hear you are in pain and had a rough weekend...don't you hate to go in to the doctor when you don't have good news to report? I just got over a yucky UTI that I had all last week, so that didn't help things at all! Just makes you feel puney..

Do you know what is causing your low back pain? I get it a lot right on my tail bone area, it feels like pressure there, I'm not sure what causes it..

I go into my rheumy next week and have to tell him that I have been taking 400mg of plaquenil instead of 200mg, I just couldn't go down, I tried but the pain came back even with the MTX...I'm afraid of what he will do, say or give out next!!!

The only problem with the MTX is at 15mg it STILL does not last the full week...arg..so Fridays are crummy days for me. However, maybe in the grand scheme of things one day a week isn't so bad???

Have a Happy 4th! Any plans? We are going to a mountain town and taking a train ride, and a mine tour.

Update me on your appointment okay?

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 7/5/2007 3:15 PM (GMT -7)   
Hi Jody,

I'm just wondering how your appointment/check up went? I hope it went well for you and you have good news to report. I also hope you are enjoying your holiday:)

babyplace
Regular Member


Date Joined May 2007
Total Posts : 499
   Posted 7/5/2007 8:51 PM (GMT -7)   
Hi there,
Thanks for checking up on me!  Yes, I guess the appt went pretty well.  I really like my doc, feel real comfortable with her, never seems to busy to answer questions.  I asked her about the lower back pain, and she didn't really have an answer for that , except to say the ra doesn't effect that part of the back, so we would watch it.  It is much better since then.  She feel the mtx is doing some good and wants me to continue on the 15mg for another month and then we will reevaluate if anything else is needed. She told me to take just one Celebrex a day in the meantime if I felt I needed it, to get me through. We'll watch the heart issues, but dosen't feel the lower dose whould be a problem.  Did labs again, and said that the last ones were all good. She was very, very postive, felt that we caught this so early she has alot of hope that we'll get it under control.  She did say she understands how hard it is to wait out these meds, she said the the mtx can take as long as 10 weeks to really kick in, but it's the fastest working in her opinion.Again, she's just very encouraging.  Had to do another z-pack for a sinus infection, otherwise seemed ok.
Holiday was kind of a bummer for me, had a nice time for the most part, hubby and I went to some friends for a pool-party cook-out, and then went to watch fireworks downtown.  But friend of mine at church lost her 21 year-old son on Tues, and it's so very sad.  Her son was in youth group at church with my youngest, just a great, great kid, senior in college, she had raised him and his younger alone and did phenomenal job. He was riding a bicycle on campus and was hit by a car. They had to dissconnect life support this morning, after they did organ donations.  I cannot even fathom the grief they are enduring, and my heart is breaking for them. At 19 this kid filed a living will because of the Teri Schivo debate, which that all happened in the same city I live in. So, they knew exactly what he wanted, but still would be an impossible choice to have to make. Anyway, almost wrote a book here, better sign off!Sorry to be a bummer, this is just really tough for me, I'm  glad that they are such a strong family of faith, which will help get them through, but still ache for them all.
Anyway, hope all is well for you!!  Did you have a nice holiday?
How are you feeling?
Jody
 

momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 7/7/2007 1:47 PM (GMT -7)   
Hi Jody,

I'm glad your appointment went well..It seems like you have a wonderful doctor, which is half the battle! ten weeks? thats right around the corner for us, and I will admit the MTX is getting much better, when I think back to first taking it. My hip pain is almost gone, so I think your doctor is on the right track so to speak.. I say giving it another month and then see what to do next is fair!

For me, I am not supposed to take as much plaquenil as I am, but I am really sure what the issue is with it, other than they are both DMARDS? I am really afraid to try to stop my plaquenil...I feel like a plaquenil addict!! I know some who take much more than I am, but then they are not on MTX and they have Lupus, but still! I always feel like I am bartering for drugs when I go there! if I give up the prednisone could I have.....I will let you know!

Now for your friend who lost her son...I am just at a loss...I have never lost a child either but my husband lost his sister 7 years ago, and I know that the pain just never really goes away...I am so sorry for your friend:((( Every birthday and anniversary of her daughters death is still a traumatic event for my mil, that and she left behind a 4 year old son. She had surgery and didn't pull through and they had to take her off of support. I just can't imagine for your friend...all you can do is be there for her the best you can and listen when she needs you to. Her son was only 21, bless her heart:( What a horrific thing to have happen. Then at some point it makes you think of your own children... I'm so sorry Jody.

Sending you big hugs.

babyplace
Regular Member


Date Joined May 2007
Total Posts : 499
   Posted 7/9/2007 4:22 PM (GMT -7)   
Hi again,
Just read your other post, glad you appt went well too. Go figure, first we think we expect too much, then sounds like your doc says we need to expect more from our meds!! I can't say that I have had the success with the mtx yet, better than it was, no doubt about that. But the stiffness and swelling are with me most all of the time. But, I'm on 15 mg, and worked up to that from just 5. I think it's only been about 5 or 6 weeks of the higher dose. So...here's hoping!!! Did he want you to up the folic acid? I've read others here who say increasing that can help the fatigue.
The service for that boy is this Sunday, and am sure not looking forward to it. Can't help but think of my boys, just don't know how on earth I would pull through that. Don't think I'm strong enough.
Hope you get some rain, and see how hot it is out your way...that must make you miserable all by itself!
Take care,
Jody

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 7/10/2007 6:55 AM (GMT -7)   
Hi Jody,

This RA is crazy isn't it? and yes for the MTX I started out on I think 4 pills so thats 10mg, and now I will be going up to 20mg..and as always there is always room to increase that dosage! I'm thinking, how much of this stuff can you really take??? As far as the folic acid, I am going to take something else that starts with the letter L? the day after I take my MTX in place of my folic acid, it is similar to it, and is supposed to help with the fatigue. I have terrible brain fog with this medication, plus I take topamax and its just an awful combo for my brain!! but he said we are in the right direction, but like you this has been a bad week, and the soreness has lasted even through my dose of MTX but he says that is because we need to increase it...okay... I have gone back to school and my classes start at the end of August and this time I am taking 12 hours, that on top of the children commuting in, I am fearful that I will not have this under control and will have trouble coping, so I am really really hopeful that this painful week is just that, a need to increase and get back on track.

It seems these meds all level out and you just have to get the right dose..I think that is where you are with the MTX right now because I really had a few pain free weeks, about three. I had virtually no hip pain whatsoever! I want you to get to this point as well, just try to hang in there, and I know its rough, because I feel as if I have back tracked! Now I am waiting for Saturday to roll around so that I can take 7 pills! Nutty! Although, I have to say the MTX is a weight loss medication because I am now down to 106, every time I go in, I have lost some weight:)

Sunday will be a difficult and sad day...as I said before you can't help but think of your own children. I'm so sorry for that mom:( What a tragedy..I can't imagine burying my own child, I just can't. Attending the funeral will be hard for you and your family to witness. My thoughts will be with you over the weekend.

babyplace
Regular Member


Date Joined May 2007
Total Posts : 499
   Posted 7/12/2007 7:50 AM (GMT -7)   
Hi again,
how are things going today? I'm so jealous!! Mtx certainly hasn't been a weight loss drug for me! Have gained around 8or 9 pounds since all this started, and was trying to lose some before that. Although, used to go to the gym and lift weights 4 mornings a week, and haven't been able to get back to that yet. Hopefully?!! I know I need to exercise, just can't seem to get myself motivated, much too tempting to stay sitting in the recliner....Plus, I got up at 5:30 so I could be to the gym and home by time the kids arrived, not easy to get myself out of the bed these days. My diet certainly isn't good either, sweets aren't really a food group, are they? Well, maybe I can get it together and do what I need to do. For now, going back to 2 Celebrex a day seems to have helped with the achies. Only going to do this for a short time so it does'nt start the heart issues again. But need to be able to move.
I sure hope this all settles in for you before school starts again. I get tired just thinking about your schedule!! 12 hours, that"s a full load all in itself not to mention the kids, house, etc. What are you studying? How are your kids doing? Hope all is well on the homefront.
Better run and get the little ones busy, they've been playing reaaly well, but soon will be lunch and naptime.
Take care,
Jody
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