Feeling rough

[sanje48]

I have recently upped my dose of leflunomide to 20 mgs instead of the 10mg I've been on for 2 years. It was a week ago and I've been feeling awful ever since. So tired and my head feels like I'm swimming thru mud. Plus joints if anything feel worse. I dont remember feeling like this when I started this drug. Anyone else have a similar experience?

[Hidden]

I had the same experience with Sulphasalazine when it was doubled and i had to stop taking it as my neck and ears swelled up. I haven't tried Lef but had reactions with MTX when my dose was doubled too fast at the start and also find that just going up one dose can tip me over the edge. Perhaps you should come back down until you can speak to your rheumy or a nurse about it. Then maybe it would be better if another DMARD was brought in at low dose so you don't need to go as high with the Leflunomide? Tilda x

[sanje48 in reply to Hidden]

Thanks for that Tilda. I spoke to the rheumy nurse today and she told me to try 10mg one day and 20 the next to see how I tolerate that till I get used to it. So will try that

[Hidden]

Good luck. TTx

[Dogrose]

I noticed the difference between 10mg and 20 mg, 10 mg gave me hardly any side effects but didn't touch the RA symptoms. 20mg left me feeling rough, upset my insides (really bad diarrhoea) and sent my blood pressure way too high. And still didn't really touch the RA. I did plug on with it for a few months but in the end my rheumy told me to stop.x

[sanje48]

yes, I think I'll persevere for a few weeks / couple of months and give the Lef a chance to work and for me to get used to it. They've told me at the clinic that if this doesn't work that they'll apply for permission for me to receive the anti TNFs. Thats encouraging as from what I've been reading the benefits from those drugs are enormous and can also promote healing in joints that are already damaged. I have already damage in my ankles and last year had to have a triple arthrodesis that left me unable to walk for 3 months. Pity you have to be practically at death's door to get these drugs here. We are second worst globally for availability after N. Zealand apparently! Thank you NHS.