Only 6 weeks since I started Leflunomide and I have to admit it has gone rather well. Pain is very low....swelling very low. I've felt more human the last 6 weeks than I have in a long time. Other than the damage already doneI'm doing rather well as long as I behave and not carry things that will put me 3 steps back ( ie I don't allow myself to carry bags from the car anymore unless they are very, very light ).
I can't close either hand completely and a few fingers and hand are slightly deformed.
Anyway....I usually take Leflunomide with my dinner as I discovered I need to take it with a good amount of food, not just a snack. I suspect that the L dose is interacting with my meds that I take in the evening to help me sleep. So I have changed my dose plan to take L at lunch instead.
I'm wondering if anyone else has any advice or experience with L they can share. Best time of day to take it etc. I also take Plaquenil and am wondering if taking them many hours apart is ok or if it's better to take them within a certain amount of hours from each other ( ie within 5-6 hrs of each other ).
Does the effectiveness change ?
I had been taking them about 9 hrs apart, not sure if that was the best thing to do.
Sorry, I can't answer your questions about the medications but am very happy to read that you are feeling so much better than you have in a long time, that is wonderful news! Hope it continues for you
Good to hear you are seeing an improvement with the Leflunomide.
I have a prescription here, but have yet to fill it out. I'm currently on MTX and Sulfa. I was to drop the Sulfa and add the L, however due to side effects on the MTX I decided not to try that combo. The L seems similar to the MTX and I can't fathom that combo.
I would however drop the MTX and try the L. I've left several messages, but my Rheumy hasn't contacted me so I will stay as is until I see her in January. My GP won't allow any changes with out her consent.
Good luck Dini! Great to hear some positive news :-)
Good news, Dini! But I’m afraid I’m not of much help when it comes down to the finer points of dosing. The person to ask is your phriendly pharmacist.
I’m glad you’re getting some relief. And TaraLynn, I’m so sorry that your rheumy has left you adrift. I do agree with your doc that you shouldn’t change your meds without her involvement.
The leflunomide has a really long half life. The pharmacist will likely tell you that you can take it when you want, but it doesn't hurt to double check. I was actually taking it every other day for a long time, as I was having trouble with diarrhea. The med was working as I had much less inflammation, fatigue, etc. But the side effects were problematic. I also take plaquenil and NSAIDs. I just gulp them both down in the morning, with or without breakfast, and have never seemed to have any trouble with it.
I recently, in the last 2 months, went back up to a full dose of leflunomide. Sad to say, I have not experienced any improvement with it, as I have definitely been experiencing more disease activity in the last few months.
Thanks for all your thoughts and for sharing my good news :)
Taralynn...that is a good idea to check with the doc.
Thanks Stoney...I thankfully haven't had issues with L. I did have a small rash for a short time which is gone now, so that's good. It appears not many of us are taking L but according to the Dr. Gladman at the PsA clinic, she says it's a very good drug for PsA. I guess I'll see just how good it is. Yes, I don't go without my nsaids every day as well.
I'm not crazy about asking the Pharmacist certain types of questions...I really don't think they know much of the time. At least the one at my drug store doesn't seem to, or maybe they just can't be bothered. Sorry if I have offended any pharmacist out there....just my experience of course.
LOL, I’m not a pharmacist. Nor do I play one on the internet. But I know what you mean, Dini: some are helpful, some are not. I go to a particular drugstore in town just because of the pharmacist: he is incredibly knowledgeable, and if asked a question that he doesn’t know the answer to, he will find out and call back. The docs in town call him for drug advice! If you can find yourself a pharmacist like that, you have a really good ally. And with the number (and type) of drugs we take, it’s a big help.
I do the same thing. I switched to a mom and pop small pharmacy simply because the pharmacist/ owner is amazing. Their hours aren’t the best, but I get the best care in relation to my medications that it is more than worth it. You might look for a different pharmacy. My pharmacist actually counsels me each time I bring in a new prescription! He tells me when, how to take it, what to avoid, etc… It’s pretty wonderful.
I am so glad that you are getting some relief. That is too great for words!
Seenie said:
LOL, I’m not a pharmacist. Nor do I play one on the internet. But I know what you mean, Dini: some are helpful, some are not. I go to a particular drugstore in town just because of the pharmacist: he is incredibly knowledgeable, and if asked a question that he doesn’t know the answer to, he will find out and call back. The docs in town call him for drug advice! If you can find yourself a pharmacist like that, you have a really good ally. And with the number (and type) of drugs we take, it’s a big help.
Hi Dini, I'm pleased you are seeing some improvement on the leflunomide. I've been taking it for about 17 months, initially 10mg daily after my evening meal.
It really seemed to agree with me to begin with and I had alot of improvement after 6 - 7 weeks (joints and plaques) but the benefit only lasted three months and then gradually the stiffness and pain came back along with a horrendous rash from chin to groin.
My rheumy didn't think the rash was connected to the leflunomide so he upped my dose to 10mg/20mg alternate days and that is what I'm taking now but it still isn't working .... he left me on it while I tried adalimumab/Humira for twelve weeks but no improvement for me even with the biologic. Although the rash itself has gone I still itch terribly and will finally be stopping the leflunomide in about 3 weeks because it has pushed my blood pressure up dangerously high. My money is on the itching stopping as soon as the leflunomide is out of my system.
I've not had any problems taking it with other drugs but as a rule I do try to space medications out so that I do take them singly.
Like everyone else I've found that my pharmacist is usually the best source of information on this kind of thing.
Hi Jules....thanks for the thoughts. I have had some itching and a small rash that is now gone. I figured it's from the L. Sometimes I get some random itching and then it's gone as quickly as it came. I hope it continues to work but sometime i get that feeling...like when i wake up with swelling for no apparent reason but I know it's early I'll have to wait and see.
I agree....my pharmacist used to have a chat with me every time i was there....not anymore. Maybe I will switch. It is so very convenient though since they are open late
But I know what you mean, Dini: some are helpful, some are not. I go to a particular drugstore in town just because of the pharmacist: he is incredibly knowledgeable, and if asked a question that he doesn’t know the answer to, he will find out and call back. The docs in town call him for drug advice! If you can find yourself a pharmacist like that, you have a really good ally. And with the number (and type) of drugs we take, it’s a big help.
But I know what you mean, Dini: some are helpful, some are not. I go to a particular drugstore in town just because of the pharmacist: he is incredibly knowledgeable, and if asked a question that he doesn’t know the answer to, he will find out and call back. The docs in town call him for drug advice! If you can find yourself a pharmacist like that, you have a really good ally. And with the number (and type) of drugs we take, it’s a big help.