Metallic taste

[CC66]

Hey folks...

After starting Leflunomide 6 weeks or so ago, last monday, i noticed my sense of taste was diminishing.. a few days later, it has all but gone and replaced with a metallic taste. 
after charting my bloods (bi-weekly), my Urea count is up each test and currently at 10 as well as a bit of kidney ache. 

Since last Friday, i have upped my water intake to 4 litres (not easy) to try to help flush my system a bit.

I called my rheumy specialist nurse this morning but she wasn't available, so left a message and am awaiting a call back.

Looks like Leflunomide isn't for me, as was Sulphasalazine... i don't know if they'll swap me to Methotrexate next or maybe try Bioligics ?

the joys of PsA

[jiml]

Hi  CC that's a shame that you are getting these side effects, I haven't been on any of the Psoriatic arthritis drugs, but from your description it does sound as if Leflunomide isn't for you, if I were you I would push for a biological drug like Stelara or cosentyx.
I wish you luck and hope you get your taste back and whatever you get next works without unpleasant side effects
Do let us know what you get and how it works for you  

[CC66]

Cheers Jim.

Well, they called back and said see how it goes and maybe see my GP if i'm worried... WTF ?? 

i told her that if it gets worse i'll call her back !

[jiml]

Cheers Jim.

Well, they called back and said see how it goes and maybe see my GP if i'm worried... WTF ?? 

i told her that if it gets worse i'll call her back !

What a response you wouldn't have phoned if you weren't worried in the first place    they are supposed to be looking after you and your concerns ....
don't leave it too long before you phone back.... don't let them off the hook  

[CC66]

Cheers Jim.. 
the older i get the less tolerant i get 

[jiml]

Cheers Jim.. 
the older i get the less tolerant i get 

I think you are being more tolerant than I would be .....I would have shot them down for their lack of concern when I explained the urea and kidney ache,... ....good luck ..

[mataribot]

That's a common side effect - not sure why'd they even argue with it.

[CC66]

Well... after reducing my protein intake to minimal and upping my water intake to 3 litres a day, the metallic taste has gone, but of the 5 taste senses, all i have is salty... i can put sugar on my tongue and taste nothing, but everything i eat just leaves a salty taste.
i started on Zinc supplements 2 days ago and today i have a slight improvement in tastes, fingers crossed it keeps improving.

on a side note.... called rheumy back and left another voice message. 2 weeks later, still no reply
I made an appointment with GP and had a 3 week wait, the appointment is this friday! 

I'm sure that GP's hate it when their patients self diagnose, but in all honesty, what the hell are we meant to do?  i have come off Leflunomide until it's eliminated from possible causes, as the symptoms i am having are indications that my kidneys aren't happy.

[Turnedlight]

GPs don't like us when we rock the boat, they want us to take the pills and leave them alone.
I wonder what they do when they get side effects on tablets?

[jiml]

It's not good is it CC all you want is to feel right, and nobody knows your body better than you ...to then make you wait so long for an appointment is just wrong

We have a system at our surgery you book online ...but then the appointments are weeks away, you phone and again it's around a week to get one......but turn up at the surgery and tell them it's urgent and they will see you the same day

So now I just turn up and ask is there someone I can see and get in the same day

I hope you get a change as it seems leflunomide is not agreeing with you ...good luck