Hi, I am new to this disease.my RA is starting me on leflunomide. Can anyone tell me your experiences with this drug? I have plantar faciitis and , bursitis, bad pain in my hands and elbows, no psoriasis just the pain. Also I had pitted finger nails on two fingers for over a year but now its gone Ty for letting me join
Hi hoybabe, and welcome. Idk anything about leflunomide, but I do know about plantar faciitis. I had it when I was around 40 (I'm 61 now). At that time, even though I had moderate psoriasis since my early 20s, nobody mentioned PsA. And, I don't know if it was PsA starting then because off and on through the years before I was diagnosed when I was 55, I did have some weird spells of aches and pains, neck trouble, back trouble, and even heart trouble! Anyway, back to the plantar faciitis...
If you are having trouble getting rid of it, I can tell you how mine went away. My doctor told me to get good, sturdy athletic shoes and wear them 24/7. Yes, I wore shoes to bed at night! I also got orthotics for in my shoes. I took Relafen 500 (I can't remember how many a day) and a p.t. massaged my feet with steroid cream. It's so many years ago I don't remember how long it took before my feet felt better--probably 2 to 3 months. Just wanted to share that with you in case your current treatment isn't helping. :-)
Also, I went on Enbrel 10 months ago and it helped my PsA a lot--especially my hands and shoulders.
Hey there, Hoybabe! Pleased to meet you, and I hope that you will find the support and information that you need here.
Leflunomide is one of the DMARDs that many of us have tried. Like everything else that can be used to treat PsA, it works for some people. If it doesn’t start working in three or four months, you just move on to the next medication. The long time that it takes to respond to medications is one of the frustrations of trying to treat this disease.
Do have a look at our NEWBIES’ GUIDE: you will find information about the DMARDs in there, as well as an article called “Please Mind the Gap”. The Gap article is near the end of the section.
Another thing that you might do is try the search bar at the very top right of this page. (It’s small, and inconspicuous but it works.) Key in “leflunomide” and I think you will be busy reading for a while.
Again, welcome.
Seenie
PS – after writing this, I noticed that you’d already discovered the Newbies’ Guide.
Welcome. I would say I am new here, but it's been a year since I was officially diagnosed. Time flies when you are in pain!! :)
Mind The Gap is a great article to read. I am still in the gap, and you can go in and out as your treatment progresses. Good luck!
Thank you both. I will be reading lots for sure. My biggest fear is the side affects of meds. Hope everyone is having a good day
Hello hoybabe, a warm, welcome to LWPsA.
When you're starting out on the treatment journey and you start reading all the patient information sheets for the drugs they are pretty daunting, often terrifying. What I have come to understand is this:
* everything that happens to anyone during a clinical trial has to be reported even if it is not necessarily attributable to the drug .... so I always remind myself that if someone got hit by a truck and they had to report that on the list of adverse effects how I wouldn't really consider that a risk to me at all
* following on from the above, there will be events reported that would have happened to that individual anyway and is just one of the things that may or may not happen to me anyway regardless of whether I take this medication
* the most common side-effects to the DMARDS actually reported here in this community seem to be headaches and nausea, both of these can be mitigated by drinking lots and lots of water ... I testify to this
* potential liver damage is always a worry but I am monitored by regular blood tests so as soon as there is a sign of a changing enzyme/function level the medication dose can be reduced or stopped; the liver is also the only organ which can regenerate itself and minor issues are, therefore, reversible ... my liver enzymes always run slightly above the normal range but don't change so there is nothing to worry about, it's if they started to go up that action is needed
* other side effects if they become intolerable again usually resolve once the treatment is stopped, vigilance on my part and reporting back to my doc takes care of this
* and ultimately I consider what my life and future would be like if I don't take the treatment being proposed ..... that has me reaching for a pen to sign the treatment authorisation form
For me, leflunomide worked quite well for a while. I had no side-effects and efficacy at 10mg daily, the dose was put up after eight months to 10/20mg alternate days and I carried on for another ten months before stopping because my already raised blood pressure was increasing, I developed migraines, a rash and some neuropathy/parathesia on my forearm .... but it's all resolved once I stopped.
We also have a saying here 'fear the disease; not the treatments'. When you understand what the PsA could do to you ......
Hope that helps you to make your own decision for yourself. Glad to have you with us :)
Not to put to fine a point on it, Hoybabe, but it’s important for you to heed what Jules says about the “fear the disease, not the treatment” mantra. You are not in a position where you are choosing between normal life and a life with medication side effects. You have PsA. The choice is now between side effects of treatment and all of the things that PsA can potentially bring:
fatigue,
depression (and all of the things that happen as a result),
loss of livelihood,
joint damage (and major surgery)
and disabiliity.
OK, sorry, I’ve been pretty pointed. But that is the reality for us. I was diagnosed very late in the game, and I received aggressive treatment even later. The result, in my case, was all of the above.
There’s a way around side effects, as Jules said. And strange as it may seem, the most aggressive treatments (while they do carry risks) tend to have the fewest side effects. Go figure!
Hi Hoybabe
I’ve been on Leflunomide for 8 weeks. It’s has helped about 50% so far. I was on MTX injections for 9 months prior to starting this med. It took about 12 weeks for the MTX to work for me so I’m giving the Leflunomide a couple more months to reach full potential. I had a lot of SEs with MTX but not many with Leflunomide. No headaches, no days of feeling wiped out after taking the med, no nausea, just a bit of sensitivity with my tummy, a minor rash on my forearms.
I hope that this drug works for you. I know how hard it is to be patient. I’m still “in the gap” myself and this forum has been a great source of information, comfort and reassurance.
The one thing that Leflunomide has not helped is my feet. I have an apt with a podiatrist next week.
I have learned to slow down, rest when I need it and I have learned to say no. No I can’t make it, no I can’t help this weekend. I felt really bad at first but I’ve learned to listen to my body.
Hi again, Hoybabe. I saw you mentioned your fear of the meds. Nobody could be more fearful than I was--Seenie can vouch for that. Like Jules said, the patient info sheets are daunting! That information stopped me from taking DMARDs and biologics--my rheumatologist could not convince me they were safe. Finally, after being diagnosed for 6 years (and having had psoriasis for 35 years) I found this support group, who talked some sense into me! My doctor was able to bypass the Nsaids and DMARDS and put me on Enbrel. It has been the best decision I've ever made! I not only feel at least 80% better, but I have no side effects, and Enbrel and the other biologics are really safe. I have some yearly blood tests, but I'm pretty sure the biologics are some of the safest meds available. So, if you get to the point of going on a biologic-don't delay like I did. There is damage happening with all that inflammation--I will always have some pain in my feet, back and hands from the damage. Good luck!