Leflunomide

[allotment-lover]

I am worried about going on to Leflunmide. Anyone had exprience of it?

[DorsetLady PMRGCAuk volunteer]

You asked same question a week ago -

See here -

healthunlocked.com/pmrgcauk...

As suggested look at related posts - either on right hand side of screen or scroll down page if on iPhone -this is just one from 9 months ago - healthunlocked.com/pmrgcauk...

-and if you enter a bit more info on your bio/profile you may get more relevant answers….

[jinasc in reply to DorsetLady]

I tried to answer last week, but as there was no info could not help.

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

😊 just been out for a brisk walk -lovely & sunny but chilly…. Now time for coffee ☕️

[piglette in reply to DorsetLady]

It is a beautiful day today. Went for a swim. Then had TWO coffees and a ciabatta!

[PMRpro Ambassador in reply to piglette]

No wonder they call you piglette ... We had a day like that yesterday - aquafit and a bubble in the outdoor spa pool afterwards until the sun went down behind the mountain. Today it just snowed ...

[piglette in reply to PMRpro]

Yes, I am now back snouting around in the mud for truffles!

[PMRpro Ambassador in reply to piglette]

Oooh - do shout if you find one

[piglette in reply to PMRpro]

I will probably have to give up snuffling and wander along to Fortnum and Mason!

[tempusfugi in reply to piglette]

Have to say, you 'lot' are a scream with your antics! Need a laugh when dealing with PMR, so Carry on Girls! Ha!

[PMRpro Ambassador]

There are also all the Related Posts which have been posted previously.

[winfong]

I've been on it for awhile now. Seems to be working, and doesn't have any side affects as far as I can tell.

[Jackoh]

I can’t remember if I answered before. I have been on it for about 18 months but I found that I developed peripheral neuropathy which my consultant and I felt might be due to this drug so I stopped taking it. I also caught a lot of infections while I was on it so it was counter productive really as I had to keep increasing my pred and never really go further forward in reduction of pred.

[Wallysma]

I'm sorry you are struggling with this I did too. I think you have to try it to know. When I asked the same question, all the replies were positive until they weren't. So it's hard to know. And for those that had issues they were all over the map. I took it and made it only for a few days. On the 3rd day every PMR symptom got so much worse! My muscles were burning. The other issue was I was so shakey I had a hard time walking. I was a mess. So we stopped.

But as I said you can stop the minute something happens.....or you might be.one of those who benefits from it.

Good luck. Be well.

[Alebeau]

I took it for just over a year and went from 10 to 5 mg very successfully without any pain.

However, I had to stop it due to increasing numbness in my hands and feet.

It also caused ongoing diarrhea which I disliked but eventually got used to.

Now that I have stopped leflunomide unfortunately the PMR pains are slowly returning so I am once again increasing the pred to find my safe level which is discouraging for me.

I will tough it out but will never take leflunomide again, that is a definite.

Your decision is not easy, it took much coaxing from my rheumatologist to get me to try it.

Good luck.

[cranberryt]

I read all the information anne side effects and decided against trying it. I tend to react badly to most medications and this one requires an antidote to remove it from your system. So perky, I refused it but it is such a personal decision.

[Flosy]

Hi.i have been on them since August 2022,I've have no problems or side affects.so far so good.

[DaleTravis]

I have been on leflunomide now for almost two years. It permitted me to reduce below 7mg prednisolone, which I had been struggling to do. The side effects I had were diarrhea, which I could manage, and headaches which went away after a while. I found the side effects of prednisolone far worse. So overall a good experience for me. I had previously been on methotrexate which I had to stop almost immediately due to my ALT level skyrocketing.

[Odosmum]

I have been on leflunomide for more than 15 years for RA. It changed my life for the better and has helped me retain my mobility, which was pretty bad and deteriorating fast. Yes, it can be difficult to tolerate in the early days, yes, side effects can be scary and difficult to live with but in my case, leflunomide did and continues to keep me active. It's not working as well as it used to now, so I'm working my way slowly through the biologicals now (adaliamamub at present).

However, it did not stop me developing PMR or GCA or spare the amount of Prednisolone that I have needed over the last 6 years. AND just this year, I have developed a Lupus type rash, which is currently being treated with - yes you've guessed it - more Prednisolone.

After hovering around 1/2 - 1 mg for around 2 years, I'm back on 12.5 mg, which is barely keeping it at bay. As I am cruising around South America at present, proper testing is going to have to wait until I return home but my Rheumatologist has been involved and is happy with the diagnosis/treatment I am receiving.