My rheumatologist wants me to start Leflunomide 20 mg I have avoided all steroids help me?

My rheumatologist wants me to start this. I’ve avoided all steroids but am on plaquenil. Any thoughts about this drug? Thanks.

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Gail Youngblood
G
1 following.
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28 ANSWER

I’m on Leflunomide

Jo Hall Staton
J

My Mum has started on them 2 weeks ago

Jo Lingenberg Raines
J

Steroids can actually do wonders... The trick is to get the flares and the damage to stop! Then go from there! Remember you likely will never reverse previous damage caused...

Marie Hester
M

I was on Leflunomide for sometime and had a huge skin n other issues. Please if you see any change please connect with your doctor for alternative or advice. Take care n I pray you have easy going.

Suchandra Mobley
S

I've been on it for years it has raised my blood pressure but it has stopped the pain and damage that was happening to my hands and feet and every other joint, Ive been pretty much pain free. I am trying to cut down my dosage now and concentrate on diet as little was known about healing of the gut when I was diagnosed, oh I do have regular blood tests also. Good luck to you x

Kellie Owen
K

How much are you on Gail? I’m on 20mg a day and it’s not enough

Jo Hall Staton 3 years

I’m on 20mg /day also for about 7 weeks now. No side effects, but still pain. Bad weather days are the worst!!

Wendy Jacob 3 years

I was on this had to come it. It made me sick and lost a lot weight on it.

Julie Johnson
J

Low dose steroids are amazing and can help your quality of life. I loved leflumomide (Arava) I felt amazing on it. Had to go off because it caused neuropathy in my feet.

Michelle Hurt
M

That medication almost killed me back this past July! If you are not feeling right on that medication you need to report it immediately to your rheumatologist or your primary physician! It put me in the hospital for 2 weeks,

Kelly Gore
K

Also if you get an infection, just to add, you cannot simply just stop this medication. It takes almost a month or better for it to leave your system, so they will have to put you on a flush the last for 5 days and you have to be in the hospital when they do this.

Kelly Gore 3 years

I have been taking lefunomide for the past 4 yrs... İt cause severe hair fall...

Hawwa Sweeney
H

Agree with the hair loss! Added 2 mg folic acid and Biotin to the mix and 3 months later had MUCH improvement. Was even able to cut my Arava dose in half

Angie Bolden 3 years

If you read the drug info you’ll see it stays in your system for a couple years, not just a couple months.

Angie Watts
A

This! If you want a baby in the future you will need to wait at least 2 years after stopping before trying.

Lorna Rubio 3 years

Or take the flush, I think it’s called cholesterine or something like that. I took the flush and opted for methotrexate instead which I was dead set against because I had a bad experience with it making me bleed heavily for over a month in my 20’s but now in my early forties it just makes me really nauseous. In my thirties I refused to be on either because I wanted a baby but now I have my little 4yr old prince of my world and I’m trying to find the right combination of meds and lifestyle to be able to play and enjoy life with him. I’ve been on about everything at some point over the years and everything fails eventually, lately most fail before they ever work my disease has just become so drug resistant.

Angie Watts 3 years

I’m on 20 mgs a day and a biologic Simponi, together they are working for me... Hope it helps you

Fiona Santiago
F

I can only tolerate 10mg it worked for a while and now get awful pain in my chest
Hope it helps and get relief x

Toni Hatch
T

This has been the only really helpful medication I’ve taken besides Prednisone. It took a month of taking it before I really felt the difference but it’s helped me significantly. I haven’t had any adverse affects from it.

Amber Hopper
A

If you’ve been on methotrexate before and it caused you stomach issues, I’d avoid this one! Methotrexate made me horribly sick around the 6-8 week mark so I went off of it - this one did the same thing!

Marlee Deal
M

I was seriously ill on Methotrexate injections but I’ve been on this for a few months now and no problems at all

Jo Hall Staton 3 years

I had an allergic reaction to it at Christmas - I hope it works for you- prayers!

Laura Kurtz
L

How did the reaction manifest Gail?

Toni Hatch 3 years

Toni Hatch rash- followed by shortness of breath and chest pain- now my symptoms didn't present until I was on the meds for about 3 weeks- and it took a couple weeks for the rash to go away once I discontinued. Now waiting to restart a new Med.....

Laura Kurtz 3 years

I was only on it for a very short time and had to cut off it as is raised my liver numbers drastically wish I could go back in time I would have refused it

Trish Morris
T

I’ve been on it for 7 years, no issues

Elizabeth Davies
E

It was just one of many I tried...

DaveyLynn Vann
D

How long have you been on plaquenil, and how does it make you feel? I’m supposed to be on it and have been afraid to start it.

Ally Ladner
A

I was in this for 4 weeks and caused a skin reaction, my face was red and swollen and I felt very sick! Might be fine for you but worth a try, just be cautious.

Alison Robertson
A

I was on leflunomide 20 mg. It worked for me, my pain had gone down significantly but it raised my blood pressure.. I stopped it n started plaquenil.. But plaquenil had given me skin rash n my pain condition is not improved at all. So I stopped that too. Now I am back to leflunomide 10 mg. My Rheumy will do blood test today n will decide whether I will continue it or not after the seeing the blood reports. Best of luck to you. Hope it helps.

Abira Carlson
A

I tried it. No side effects for me. But it also did nothing for me either.

Figueroa Guzman
F

Game changer for me! I couldn't walk upstairs or drive until this med. Works great, no side effects.

Tiffany Snider
T

I was on this for approximately 6 months. I had a great deal of hair loss (I was taking folic acid as prescribed for about a year at that point), I also had diarrhea often. Towards the end I had severe abdominal cramping and that’s when I took myself off. I’ve stopped all meds because the side effects were starting to make me bedridden. With two children under 5 that is not okay.
I have heard people have success with the drug but it did not work for me. Best of luck to you

Veronica Donahue
V

Has worked great for me.

Laurel Glass
L

Hair loss and blood pressure

Emma Driver
E

I started with Leflunomide and stopped for something 'stronger' and is now on Plaquinil 200mg one or two a day. Good luck.

Tina Rudd
T

I loved this drug!!! Complete remission! Was able to walk pain free and able to use hands without pain. Felt better and was able to coach a soccer team!! Only downside, got pregnant unplanned, birth control failed, had to go off of it. Baby died in pregnancy, don’t know if it was related to this, but stayed off meds for over a year, then was beyond only this. Back on it now with simponi.

Jennifer Phelps
J