I've been on Plaquenil for many years but need to stop due to retinal damage. My doctor prescribed Methotrexate as a substitute. Any experience with this oral drug and whether it helps migraine and other SLE symptoms?
Thanks so much -
Daisy
Hello Daisy :) Sorry that Plaquenil did not work out for you, and that using Methotrexate will help. I was prescribed Methotrexate long ago, and it did not help much. Others have great success using it. I was on an oral dose, but could never get past the nausea and vomiting. After that, I was given the injection, and it reduced those side effects dramatically. Hope you have better luck with it! ♥
Hello Daisy,
I am so pleased to see you added a Discussion on Methotrexate and member's will answer in due course plus i've added a status on the main page asking member's to answer.
Thank you "wolfwarrior" for answering so quickly...as Daisy is a new member and needs the help.
Love Terri xxx
Hello Daisy!
I have only been on Methotrexate. My rheumo thought that given the shape I was in the Plaquenil would not be strong enough. The methotrexate has caused nausea and vomiting for me on the day I take it, and exhaustion the day after. However- The rest of the week is literally pain free!!!! It has been wonderful!! I hope you have success with it!
Hi smc,
Thank you also as Daisy is learning how to use the site 
smc said:
Hello Daisy!
I have only been on Methotrexate. My rheumo thought that given the shape I was in the Plaquenil would not be strong enough. The methotrexate has caused nausea and vomiting for me on the day I take it, and exhaustion the day after. However- The rest of the week is literally pain free!!!! It has been wonderful!! I hope you have success with it!
smc,
I can't imagine what pain free is, that is great for you! Thanks for posting this : )
Trisha
smc said:
Hello Daisy!
I have only been on Methotrexate. My rheumo thought that given the shape I was in the Plaquenil would not be strong enough. The methotrexate has caused nausea and vomiting for me on the day I take it, and exhaustion the day after. However- The rest of the week is literally pain free!!!! It has been wonderful!! I hope you have success with it!
Trisha,
I've noticed when new discussion come up even if they'r similar to other's....someone always comes forward with extra info which helps a great deal more.
Terri :)
Years ago I had to switch to methotrexate because of plaquenil retina issues too. My doctor had me take it daily - it really made a difference for me. I did not have any tummy trouble. My hair suffered (thinning) but that could have been from Lupus itself, not the drug. I remember it also helped with my awful headaches.
Best wishes to you Daisy!
Lisa
When I was first diagnosed with SLE, I was put on 60mg. of Prednisone, for about 2 weeks. It worked, the pain and stiffness went away. Then I was tappered down to 30mg. of Prednisone, which seem to keep the pain and stiffness at bay. Was then put on Methotrexate starting with a dosage of 3 2.5mg once a week for two weeks, with a degress of Prednisone by 5mg. Until i was at 5 2.5mg. of Methotrexate a week. I did notice, the pain and stiffness started to return during the transition of the two drugs. Now I am currently only on 2.5mg of Methotrexate, and I am having more pain and stiffness, as I did before. This is due to a new Rheumo Dr. that did not think I have Lupus, but her coligue agrees that I do have SLE Lupus.
I know that not all drugs work the same for everyone the same way. I wish you luke, and hope the Methotrexate works for you.
hi there Daisy, I took off the "Tag" with email in it, cause figured that you would get spammed if there was an open email like that. Not by people on the site, but because spammers have software that rome the internet looking for live email addresses. hope that is ok.
Daisy, metho worked for me, but increased the enzyme level in my liver, so I stopped. Just be sure to keep a check on liver n kidney functions because the medicine does work. That is when I decided to go as natural as possible. I just recently went back to plaquenil. Hoping no side affects this time. Good luck!
I had to go off plaquenil years ago (after taking it for at least 15 years) because it was starting to affect my eyes. I'm not sure when I started methotrexate, perhaps when gold was no longer sold as medication. (I have RA as well as lupus.) I'm on 5 2.5 mg tablets a week now. I don't know that it helps migraines. I take something else for that. But I have very little swelling or pain in my joints, wo I think it works. I've never had any nausea or vomiting. I guess I'm lucky. Good luck to you!
Hello Daisy,
Thanks for sharing, and I appreciate the comments as well. I was told by my Rheumo that if the combination of Lyrica, Neurontin and Prednisone doesn't help me, the next step will be a steadily lessening dose of Prednisone and a steadily increasing dose of Methotrexate.
I went to this site: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000547/ and found some very helpful (not to mention scary) information there. I know that I am not physically able to go without prescriptions for my SLE and Discoid Lupus, but it is really difficult to decide between one bad side effect and another. As Lupus patients most of us don't have much choice between the "rock" of pain and illness, and the "hard place" of the meds we have to take.
I wish you absolutely the BEST of luck, and I hope you are as pain free as humanly possible very soon. But make sure your doctor advises you of all the ramifications of any medication recommended, whether a steroid, an NSAID or something like Plaquenil or Methotrexate.
Take care!
Thanks so much - I didn't mean to include my email. Appreciate your help!
Scott Orn said:
hi there Daisy, I took off the "Tag" with email in it, cause figured that you would get spammed if there was an open email like that. Not by people on the site, but because spammers have software that rome the internet looking for live email addresses. hope that is ok.
Did you experience hair loss from Methotrexate? Do you take folic acid to counter the effects of this drug?
Julia said:
I had to go off plaquenil years ago (after taking it for at least 15 years) because it was starting to affect my eyes. I'm not sure when I started methotrexate, perhaps when gold was no longer sold as medication. (I have RA as well as lupus.) I'm on 5 2.5 mg tablets a week now. I don't know that it helps migraines. I take something else for that. But I have very little swelling or pain in my joints, wo I think it works. I've never had any nausea or vomiting. I guess I'm lucky. Good luck to you!
Were you on folic acid or folate to counter the effects of Methotrexate?
Lisa said:
Years ago I had to switch to methotrexate because of plaquenil retina issues too. My doctor had me take it daily - it really made a difference for me. I did not have any tummy trouble. My hair suffered (thinning) but that could have been from Lupus itself, not the drug. I remember it also helped with my awful headaches.
Best wishes to you Daisy!
Lisa
Trisha,
I couldn't imagine it either. It is the strangest feeling, not be so AWARE of my knees. I am not quite sure what to do with that:) I still have random chest pain, inflammation, and overall exhaustion. With my lupus though, the pain in my knees has been so horrible for so many years that this is the improvemnet I am focusing on for now:)
Suzie
Trisha said:
smc,
I can't imagine what pain free is, that is great for you! Thanks for posting this : )
Trisha
smc said:Hello Daisy!
I have only been on Methotrexate. My rheumo thought that given the shape I was in the Plaquenil would not be strong enough. The methotrexate has caused nausea and vomiting for me on the day I take it, and exhaustion the day after. However- The rest of the week is literally pain free!!!! It has been wonderful!! I hope you have success with it!
I am on 10mg Methotrexate every Sunday, and I do take 1Mg Folic Acid daily.
Daisy said:
Were you on folic acid or folate to counter the effects of Methotrexate?
Lisa said:Years ago I had to switch to methotrexate because of plaquenil retina issues too. My doctor had me take it daily - it really made a difference for me. I did not have any tummy trouble. My hair suffered (thinning) but that could have been from Lupus itself, not the drug. I remember it also helped with my awful headaches.
Best wishes to you Daisy!
Lisa
Hello Daisy,
This link may also help on why folic acid is needed with methotrexate, as i also have that daily also of 5mg.
http://arthritis.about.com/od/mtx/a/methotrexate.htm
Terri :)
Suzie,
Enjoy it!
I am realizing how well meloxicam works for me, now that I can't have it until after the surgery.
Trisha
smc said:
Trisha,
I couldn't imagine it either. It is the strangest feeling, not be so AWARE of my knees. I am not quite sure what to do with that:) I still have random chest pain, inflammation, and overall exhaustion. With my lupus though, the pain in my knees has been so horrible for so many years that this is the improvemnet I am focusing on for now:)
Suzie
Trisha said:smc,
I can't imagine what pain free is, that is great for you! Thanks for posting this : )
Trisha
smc said:Hello Daisy!
I have only been on Methotrexate. My rheumo thought that given the shape I was in the Plaquenil would not be strong enough. The methotrexate has caused nausea and vomiting for me on the day I take it, and exhaustion the day after. However- The rest of the week is literally pain free!!!! It has been wonderful!! I hope you have success with it!