appt with rheumy/ MTX?

[jessiblah]

So I had my appointment with the rheumatologist on tuesday. I thought it went really well. I had to get more bloodwork since I was in a horrible flare. I am still waiting on results. I started a methylpred pack which helped tremendously and I really do not want to stop the pred. I haven't felt this great in a year. I was a little thrown back by what my dr said. She said if the pred helps we may start adding methotrexate on top of the plaquenil. MTX scares me a lot and I didn't remember at the time what MTX was. The more i think about it wouldn't it just be better to start on a low dose of pred along with the plaquenil and if that doesn't help then move to methotrexate. I am not quite ready for MTX. Plus I want to go back to college and I don't want this drug causing me any problems in the near future. I already had to stop college because of stress and what it was doing to my health. I am planning on going back to school for nursing or radiology or both. I am still undecided. I am expecting a call from my dr on monday regarding my bloodwork results but i go back in 3 weeks to see how I am doing overall. Has anyone been told to go on mtx before trying a low dose of pred long term? I just wonder what would work better for me. I don't really want to gain pred weight but I also don't want to risk getting lymphoma from MTX. I am only 23 so I am trying to stay away from as many meds as I can.

[Nancy60]

The reason for going on methotrexate rather than long term steroid use is because the risks of complications from steroids are much more likely and they can be severe, than the risks of developing serious complications from methotrexate. Even though Lymphoma is serious, the likelihood of you getting it is less than the likelihood of you getting something like osteonecrosis or osteoporosis from steroids and both of these can be very severe and disabling.  Discuss your concerns with your doctor,

Typically steroids are used to get a severe flare under control, but then getting you onto another DMARD to get off the steroid because of the problems with long term steroid use. 

Your doctor will be able to help you find a way to manage some of the side effects of methotrexate, and should monitor you for signs of developing more serious complications. 

There are many people who have used methotrexate successfully.

Nancy

[Sleepy In Seattle]

I was in the same boat a year ago...and have been very happy so far with Mtx.

Steroids are really destructive long-term, even at only 10mg/day. Mtx is less-so for most people - that is why they try it. NO drug is without risk - but these diseases will destroy you if they are left unchecked, so we don't really have a choice.

Here are some tips that helped me with the Mtx (I was terrified!)
- Always take it on a full stomach
- Know that the first couple of months the side effects will be more pronounced, but over time many people's bodies adjust to it and the side effects fade pretty dramatically
- Taking prescription-strength folic acid reduces many side-effects, so ask your Rheum about that
- I was feeling pretty low the day after my weekly dose, so my doc suggested that I split the dose during the week - my total dose is now 20mg/week, so I take 10mg Monday night and 10mg Thursday night.
- Many of us take it take it at night and simply sleep through the side effects. I take it about 90 minutes before bedtime to let it digest a bit. It makes me pleasantly sleepy and I usually sleep really well on the nights I take it, then wake up refreshed and full of energy.
- Some people have "tummy trouble" with the oral form - often they find injections a better route. I have not tried these, as I have no stomach issues with the oral form (after the first few weeks), but apparently the shots are easy and no big deal to do at home.

Mtx has really improved my quality of life. I was scared of it at first, but keep in mind that the doses we take it at are a LOT lower than the chemo-level doses it was created for.

And, for the record, I have been SOOOOOOO much healthier since being ON it than I ever was before - that includes, flu, colds, viruses, infections, etc. I think the Lupus/Sjs was WAY harder on my body than the Mtx is. Tells you how awful these diseases are - that eating "poison" makes me HEALTHIER, LOL....

That's just my one year of experience, for that it's worth. Hope it helps!

[slccom]

I am sick and tired of being so tired! I'm going to make an appointment with my rheumy and see if I can get on it. Thanks for the information!

Sharon

[odie]

jessiblah,

I can't speak to the MTX prospect because I haven't tried it.  But if you have flares that are requiring prednisone and want to go back to school for nursing or radiology I feel for you.  I admire that you want to get on with your life but nursing is an incredibly stressful occupation that might be overwhelming for someone as symptomatic as you have been.  I speak as a former nurse and I know there are other nurses on this forum that can speak to the stress involved.  I started having symptoms during the time I worked as a nurse and now can't imagine being able to keep up with the pace required if I were still working as one.  Perhaps the MTX might even things our for you and give you a sense of whether you can keep up with the demands of school and work.

Good luck with your decision.

[Carebear]

Methotrexate improved my quality of life incredibly.   

Might I suggest the injections versus the pills.  Far fewer side effects, especially stomach issues.  And the dosage is more consistent. 

I used to nearly faint at the sight of a needle.  Now it's "bingo, bango, bingo".   I do it myself in a flash.   

[TripleC]

  I have been on MTX for a couple of years.  It has helped greatly.  I think has helped with my dry eyes, carpal tunnel, and feet issues.

  I do have blood tests every three months.   I feel so good that I have asked the DR. are you really sure I have RA ?   Unfortunately he

  always say YES.

[lori]

Jess-

I have been on MTX for over 3 yrs.

i totally understand your concerns- however, please note that the info you read about the drug is based onthe CHEMO dose, as it is useed to treat cancer!

I asked my rhuemy about MTX and the biologic I take for RA and the whole lymphoma thing- her reply was this... the cases of lymphoma she sees in her office is with those folks who do not take dmards and biolobgics but go untreated.

there is a link with sjs and RA to cancer... but the question is, is it the disease or the drugs. according to her, she sees the diseases as more of the culprit.

predisone... that is ONE drug that will screw you up- i have seen a friend whose life has been turned upsdie down from the stuff. talk about dangersous!!!

a quick short term use for fast inflam redcution may be fine- i had to use it before I was on the mtx adn humira -but that is the one id run from!!!!