So I saw my Dr yesterday & she wants to try again to get me off the Prednisone. The last time it didnt go so well. This time she wants to do it slower. And, if it doesn't go well again, she wants to start me on Methotrexate. I didnt think much of it at the appt. because I didnt know much about it. Then I came home & googled it. Now Im really nervous & worried. The side effects sound horrible. Im hoping to do well this time off the Prednisone and if not I'll have to discuss other options.
hey flutter i hope you get off the prednisone and the methotrexate isnt an option for you x methotrecate made me very sick with fevers and throwing up it was horrible and now i am off it and the dr's want me to go back on it and i refuse x
hope it all works out for u Flutter
love and hugs LilLupie x x
My daughter with Lupus takes a low dose of Methotrexate. It really helps her as part of her drug treatment for the disease. Good luck getting the right drugs to make you feel better. Hugs. Will be thinking of you! Carolyn
I take methotrexate and I do feel crappy about 1 1/2 to 2 days later so I take it on Friday mornings so I’m down and out on the weekend. I am getting used to it after 9 weeks though and the naseau and vomiting isn’t as bad. The side effects weigh out the side effects. Also I take folic acid so protect my hair from coming out which it did a little bit in the first few weeks. I think it’s WAY better than prednisone which was a nightmare to be on and off of for 6 months. Each person is different though. The thing I wory about is long term side effects. I also have to have hand sanitizer with me all the time and be sure to stay away from contagious people as methotrexate suppresses immune response.
I’m told they have improved methotrexate over the years. When i took it in the mid-1990s it gave me the most hellacious tongue and mouth sores. So bad and couldn’t eat. That’s still a side effect some people get, but could be less if you take it by injection or infusion. The other side effects that scared me were nausea and hair loss, so i gave up on it pretty quickly. The docs told me that with the new injectible format it may not be as bad as when i was on it. But, yes, it is a chemo-type drug, from what i understand, and does suppress your immune system, so tongue/mouth sores, hair loss and nausea are all possible (tho not guaranteed to happen from what i was told). Keep in mind, prednisone also suppresses the immune system. Prednisone also slows your healing time to a grinding halt. Often takes me weeks to months to get better after getting sick or hurt. Most all lupus drugs do suppress the immune system. I have been on prednisone since 1990, and i wish i had never started, because it’s almost impossible to get off it if you’re on it long term like me. We’ve tried with my docs, but my adrenal glands haven’t begun functioning again after a year of tapering, so they had to bump me back up and probably can’t ever get me off it anymore. To give you some perspective on what prednisone will bring you if you don’t wean off it when you can are cataracts, bone deterioration (osteopenia/osteoporosis), high pressures in your eyes (glaucoma) and diabetes. Over the last 20-plus years on prednisone, the ones i got hit with are steroid-induced cataract, osteopenia, and glaucoma. I have to take meds for the osteopenia and glaucoma and just deal with the vision effects of the cataract for now till it gets bad enough for surgery.
Keep in mind that with lupus it’s a matter of “pick your poison.” Almost any drug used to treat it will give you some kind of super crappy side effect, and all of them will compromise your immune system to some degree. It depends on what side effects you’re willing to live with. My “poison” cocktail is prednisone, plaquenil and benlysta. All wreak their special brand of havoc on me, but that toxic cocktail is (for me) the less of some other evils another drug cocktail would result in.
Hey Flutter! You are strong and you can do this ... whatever it takes. MTX and I did not get along, but not to say I would not take it again if I had to ... I got all the yucky infections and did so pretty quickly (within six weeks), so I believe if you do have to take it and do have side effects with it, you can get off the MTX quickly and heal yourself. But, let's not even go there yet. Focus on reducing the Prednisone ... One thing at a time. Love, Dee
Methotrexate never really helped me. So I quite taking it. Never had any side affects, but prednisone is much worse in my book. The blood sugar issue and bone issue are bad. It's great that it's available (Thank god for it. It's saved my life) but what drug doesn't have it's side affects? That's just my experience, you have to do what you feel comfortable with. Best of luck with your decision.
Hope things work out for you!! I can’t go 2days without it!
Hi Flutter, sorry that you are having to make another med change know that it sucks to have Lupus but don't let it get you down. I think that it is allot more dangerous to stay on a Steroid more so than taking the Methotraxate. My cousin had Lupus and her Doctors kept her on Prednisone too long and it killed her Immune system and she never recovered from it. It allowed a type of Cancer to invade her body and we lost her 2yrs ago. Please try to taper off of the Prednisone as quickly as possible.
Good Luck
Ms. P
Thank you everybody that replied.
Now I just need some time to digest everything I just read.
I know it's been said before & we all know it but LUPUS SUCKS !
I was on MTX when I was diagnosed as Seronegative RA - prior to my ANA coming up positive. I was on it for over a year and never had any real ill effects from it. I did take it on Friday, so the weekend I could rest, if need be. The first couple of times I did feel a bit tired...but then it built up in my system and really seemed to help my joint pain. However, after increasing dosage over the year, my body began to rebel and my joint pain flared and my Dr. removed me from the med and introduced Humira. I agree that it is always a pick your poison game with these diseases. I am wishing you the best of luck with your decision and pray that you find relief!
Flutter,
Way back when, I took MTX in the pill form and got up to the max dose. I did pretty well, minor side effects, some nausea that I took a mild nausea (non-narcotic) pill for. Once I got used to the MTX, I ended up having maybe 1-3 "bad" days and the rest "good" days - eventually went into a "remission" - it did take a while for this to happen. It was worth it to me.
My remission ended though. So, my doc put me back on the MTX pill form. It again caused the same minor side effects. I guess things weren't happening fast enough for either of us. I mainly just wanted my life back - my remission life. He wanted that too and we felt that the injectible form might be what I needed.
Keep in mind that Everyone is different. I have some medication sensitivities that I have developed since I have had Lupus and Fibromyalgia.
So, I went on the Injections and had serious and violent nausea and vomiting that could not be controlled with the mild non-narcotic nausea pill. The doctor prescribed something stronger that I was allergic to and it set me way back. I have now quit taking the nausea pill (of course) and the injections as it was determined that my body couldn't handle them at any dose.
However, we are considering restarting the pill form of MTX and I am willing to be more patient. I do have fears after this experience with the injections, but realize that anything that I take will have repurcussions. I just have to stay strong and vigilant inside of my heart and mind and remember that it could mean more "good" days in the future. Again, keeping in mind that everyone reacts differently to these meds.
I hope that you will update us with your progress on the decision with the meds. It could help me with my bravery!
Draginfli