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Started Methotrexate last night.....

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Posted 4/11/2012 2:51 PM (GMT 0)
Hello all. I hope you are well. I had my Rheumy appointment yesterday and she said my latest labs showed disease activity. My ana was the highest titer it's ever been with a homogenous pattern. My complements have continued to stay low and dip as well. I have been on prednisone for over a year and not been able to come off of it. My Rheumy seems to think it's due to a combination of all 3 factors including Adrenal Insufficiency, Steroid Withdrawal and Lupus Inflammation I currently have small ulcers and fatigue but this was before starting the metho last night..... So....she has left me on 7.,5mg of Prednisone and Added 2 2.5mg Pills a week for 3 weeks and then 3 2.5mg pills a week after I get the blood levels done when the first 2 weeks are completed. I'm also on Folic Acid 1mg/day which my Rheumy said helps with side effects.

Can I get some input on the med and how it has affected others? It's hard to believe we are treated with chemo/cancer drugs. I've even read they use it for ectopic pregnancy. I have severe photosensitivity already and am allergic to chemicals in sunscreen so i cannot use any of it. Any ideas on how the hair loss and nausea will be? Anything anyone wants to say about it is welcome!

Take care and God Bless!

-Lupie LadyBug
Posted 4/11/2012 6:53 PM (GMT 0)
Hello Lady,

I take MTX for MCTD. The side effects for me are not too bad. Some nausea, Zomig works well for that, and my hair gets thin, but not terribly. I really have to watch for the bruising as that seems to be my worst symptom. As far as sunscreen, I get a prescription type as I am extremely sun sensitive and cannot use commercial preperations.

I do not have to take it continuously, because after 3-6 months it will go into remission, and am able to come off of it.

Hope this helps

T
Posted 4/12/2012 2:21 PM (GMT 0)
Thank you for the reply, what Im wondering is how long after taking your first dose did the symptoms/side effects start? I was thinking it'd take a bit (maybe a week or so?) since the MTX has to build up in your system to work anyway. Take care and God Bless.

-LB
Posted 4/12/2012 5:24 PM (GMT 0)
For me it is 3 days like clockwork, and usually in the middle of the night. The hair part took me about a month.

I hope you have no more issues than I have.
Posted 4/12/2012 5:43 PM (GMT 0)
Thanks Nova. I have been tired and hand headaches and nausea here or there but really no appetite and spaciness. I don't know if it's lupus or not due to having had a temp and chills yesterday(99.3)and rashes from my open windows(ridiculous! lol)and some joint pain the day before. I can't tell what is what.

I guess the reaction in regards to length of time is just as diverse in people as the side affects are. Guess we'll just have to see how it plays out over time. Due to not being able to be outside at all I have a feeling I'll need a higher dose than 7.5mg eventually. That's how it got with the pred...and now I hope i'm not stuck on it. Not sure what to think at this point I guess.
Posted 4/13/2012 5:24 PM (GMT 0)
I hope you are not suck on it forever as well. I am very lucky that I have relapsing/remitting illness so I do not have to take it all of the time.

I also have to be very careful of the sun. I have filter films on my home and auto windows. It is no fun. I also have a script sunscreen that I have to wear as the commercial preps are no good for me.

The MTX works extremely well for me. I have never had to escalate to the planquenil.
Posted 4/13/2012 6:25 PM (GMT 0)
What is the prescription sunscreen you have? I am allergic to the chemicals in the regulars and even the baby stuff that's supposed to be "natural." I wear clothing that covers mostly but it doesn't help. Reflections and glares keep the sun grabbing at my skin so to speak. I guess I have a relapsing/remitting illness but I have never had a "remission" for more than a few weeks. I hope you are well today. Going to get blood work done so we'll see what it shows. Blah.
Posted 4/15/2012 5:31 PM (GMT 0)
HI,

I was on Methotrexate for about 3 years.  I took the highest dose possible by pill form (20 mg? 25 mg?-I can't remember now) Anyways, my side effects were being very tired for about the first 24-48 hours after taking it.  After about 6 months of taking the higher dose I found myself very fatigued all the time.  My rhuemy was going to have a nurse teach me how to give myself injections so I could take a higher dose yet, but he believes in the "less is more" as far as meds go.  We opted to take away some of the Methotrexate to see if it helped with the fatigue and report back in 3 months.  This did seem to help.  I also had some hair thinning, but not a great amount.  My stomach didn't feel right for about 24-48 hours after either.  As far as how long it takes to really kick in, my Rhuemy kind of played it by ear.  I was on 25 mg of prednisone when starting the metho.  Our goal was to try a taper once I had been on Metho for about 3 months.   It did actually take me almost 2 years to get off the prednisone.  It will vary from person to person though and I hope you have better success with being off the prednisone.  I did experience some weight loss and major fatigue from time to time, but as you know with Lupus that can be somewhat "normal". 

The Methotrexate was what I needed to get me out of my funk from Lupus.  After getting off of Methotrexate, I did end up being on a low maintenance dose of prednisone because some days my body would be in pain and I would have some swelling of smaller joints. 

I wish you luck on Methotrexate.  Just hang in there and stay strong:)

Posted 4/15/2012 5:32 PM (GMT 0)
Oh, and I wanted to add that the dose of Methotrexate for Ectopic Pregnancies is much, much higher. Been there, done that too:(
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