Tastebuds still gone

[Ranjmcl]

Still no tastebuds. Any advice?

[mariagomez]

Try eating a tablespoon of extra virgin coconut oil . Look up its benefits

[Musedave]

I couldn't taste anything for the first 10 months with GPA, but taste has now returned. I believe it's down to nerve damage, which is repaired once Vasculitis is under control. I also had numbness in various bits of my body (nothing too important though!!) and sensation has returned in most of those areas.

[Ranjmcl in reply to Musedave]

Thank you. I heartened by this. It's been 5 weeks and it's annoying more than anything. Everything tastes like sawdust (must taste : I haven't had many sawdust meals!). Thanks again.

[medway-lady]

Is this the Leflodomide poster who stopped taking it because of this reason? If so it takes a while to get out of the system but I though you had it washed out if so that would indicate its not the Leuflodamide but something else. I have a dry mouth all the time as RA in its auto immune form has done in my Saliva so now use a spray. Its no problem at all so I'd suggest you discuss this with your consultant and see what he/she says especially if you've stopped a medication that may have been blamed for something it did not do.

[Ranjmcl]

Yes I am her. I've have been on washout for 7 days. A little better but j only took the lefludomide for 8 days. I'm going to talk to the RA nurse tomorrow to see if it could be something else. The rest of the problems have cleared. Just this one.

[medway-lady]

I've read washout is quick, but more importantly that Leuflodamide does take time to get into the system thus work for at least a couple of weeks. I'd strongly urge you to talk to the Consultant, as the taste issue can resolve itself along with the other side effects if you give it time. I'm really surprised that they did a washout so quick but assume you had more serious side effects and I hope that they have been resolved for you.

[Ranjmcl in reply to medway-lady]

I had a really bad reaction to it. My blood pressure went sky high, I pulled a tendon, was very sick and finally lost my appetite. I went to my own GP. She put lefludomide in the system they have (it automatically highlights any contradictions) and found it wasn't suitable. She phoned the nurse but got no reply. She then had a word with the internal doctor who deals with inflammation and he told her what to do. My BP is back to normal, the sickness gone but the tendon is still sore and of course the tastebuds. I'm hoping to catch the rheumy nurse tomorrow

[medway-lady in reply to Ranjmcl]

I'm sorry to read that but would wonder if it was bit premature as it takes so long to get into the system. My sympathies are with you because in may case its great but what suits one etc. I'd not worry about taste if I was pain free as it is temporary I think, and I cook !

But MTX caused me huge hair loss and so I'm pleased with the Leflodomide which has me feel 100% normal. No aches etc but it is trial and error so stay positive and I hope you RA nurse is helpful.

[popsmith1874]

My dry mouth is really annoying the morning I was putting down t the annytriptolyne but maybe it's a washout I need , there are so many side affects with this disease

[Ranjmcl in reply to popsmith1874]

I know. Every time I get a new med my first thoughts are 'what are the side effects'. Check with the doctor first. The washout is brutal and annoying. You can get a dry mouth gel which helps. The pharmacist sold it to me. Check with them and remember to tell them what meds your on. Good luck.

[nomoreheels in reply to popsmith1874]

Because it stays in the body a long time a wash out is only necessary for leflunomide popsmith. Your dry mouth is something I can empathise with & could be due to your amitriptyline but also tramadol & other pain relief/meds can cause dry mouth & constipation as well. I'd ask your GP what he'd recommend, mine prescribed me salivex pastilles which didn't really help me but the Biotène gel she replaced them with has.

[medway-lady]

A dry mouth in my case is down to the RA itself and my GP gave me a spray it works well. I believe sometimes medications are assumed to have specific side effects when in actual fact it isn't its a progressive disease and we still get other stuff. The problem for me is the saliva glands, nothing to do with any medication and its worth asking for the spray it comes in 3 flavours.

I hope you find something that works, but please do not read the medical info leaflet or at least remember that if its a 1 in 10 chance that you get something then the chances are you'll be in the 9 who doesn't. RA is not pleasant and medications are trial and error. The spray us called Glandosane.