First Dose of Methotrexate and Questions Vol. 2

Here is the link to the first thread.. Please.. continue on..

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 - 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.

*****

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.

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

Good luck njcats - nice to meet the Jersey Girls

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.

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! 

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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 :)

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?

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

 

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

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