Lefludomide was out, loss of taste

[Ranjmcl]

Apart from the tiredness, muscle weakness and general feeling of yukkiness, I've had a total loss of taste with lefludomide. I'm on a wash out now. Anyone else had the same? How long did it take to get the taste back in my mouth? Finding it all quite depressing

[Hidden]

Sorry you've been through this with Leflunomide. It's one of the few DMARDs I didn't try but I believe the wash out usually works well so hopefully your taste buds will be restored soon.

My taste buds all but disappeared while I was on MTX and have never returned. Looking back I don't believe it was the MTX that caused this problem although it gave me an awful rotten taste. But when my RA symptoms first started I had a terrible bitter taste and many strong meds make it worse.

I still have a bad taste often. I think for me that the bad taste is part of some autonomic problem (ie part of my autoimmunity) because of my other neurological symptoms. I only mention this just in case you find yourself in same boat and blame Leflunomide as I did with MTX and before that, Sulfasalazine. I had allergic reactions to Hydroxy and Azathioprine too so not on anything now. Nothing to blame horrible taste (I think it's called Dysguisa) on anymore!

[Ranjmcl in reply to Hidden]

Thanks Twitchytoes. I'm only on day two of the washout so I am hoping it comes back. Hate not able to taste anything.

[medway-lady]

I had this but it only lasted for about a week along with severe pain in the tendons. Then like a miracle the pain disappeared, taste came back as it used to feel I had a mouth full of metal. And I felt great and still do many months on.

How long did you take it ?

[Ranjmcl in reply to medway-lady]

I took it for 8 days. Same here tendons killing taste disappeared overnight. Fatigued and tired I stopped taken them. It's now been two weeks. Weakness gone but mouth still feels like it's coated with metal.

[medway-lady]

Same happened to me but I was asked to keep going for a 6 to 8 weeks and believe me it really hurt so much I rang the NRAS helpline. And I felt awful but I'm so glad I did after about 8 weeks the cloud lifted, taste came back and tendon pain went. I feel great in fact if I did not know I have RA and used to have a score of 140 I would not know I had it. I so wished you had been given same advice as my hair fell out on MTX and my choices are limited. I feel so much better that I've booked a trip to Russia shortly and am back rambling my advice to you is go back and talk to the consultant and if its not affected your liver (as it can do I've been advised) give it a longer go. It seems so bad that you've been taken off a very affective medication (for me at least but it may not be for all, obviously. This is a medication worth preserving with, I was not sick and took it a night unlike MTX it left my hair alone and my nails and skin also feel a lot better too. A win win situation for me.

[medway-lady]

I forget to add I also through the RA I have no working saliva glands now so use a spray from the GP its not a problem at all. In fact it tastes rather nice, my gp asked me what flavour ? I opted for strawberry which is nicer than banana, next time going to try peppermint.lol

It might be your tats buds are affected by a lack of saliva its worth asking about.