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  • Loss of smell/taste?

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    Old 10-24-2005, 11:21 AM   #1
    Sun_Shine
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    Loss of smell/taste?

    Anyone lost their smell/taste with Lupus? It's been many months now and I've yet to get it back. My doctor put me on a short course of Prednisone & a daily nasal spray - for a few weeks hoping that will work. In the grand scheme of things it's pretty small compared to all the aches/pains/migranes/insomina but, it would be so nice to actually enjoy food! If anyone else has had this happen to them or heard of this - what worked to get it back or I'm pretty much stuck with this?
    At first it was kind of nice as I wasn't interested in food but, now I'm finding I'm eating too much as I'm not really realizing how much I'm eating! And I don't know about you but, this gal sure doesn't need to add anything more to the hips - haha. Tips?
    :

    Last edited by Sun_Shine; 10-24-2005 at 11:22 AM.

     
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    Old 10-24-2005, 05:54 PM   #2
    goldenwings
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    Re: Loss of smell/taste?

    Hello SunShine,

    I have lost my sense of taste on a number of occasions, but I have never attributed it to lupus. It normally happens if you have a cold, or sinus problems or if you eat stong flavoured foods i.e. garlic or chillies or this type of thing, which then tend to linger on and on and mask the taste of other foods. Also, are you a smoker?

    I can't comment on the loss of smell sensation, as this is something that I haven't had. In my case, it is exactly the opposite.

    The thing to do I feel is to perhaps read up on all of your medications and make sure that these problems are not being caused because of side effects. Any OTC preparations need to be looked at too.

    Hope this is of some help. Sorry I couldn't be more specific.

    Take care.

    goldenwings
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    Last edited by goldenwings; 10-24-2005 at 05:56 PM.

     
    Old 10-30-2005, 07:48 PM   #3
    LMHART
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    Re: Loss of smell/taste?

    Hi Sun Shine,
    I have also lost my sense of smell and taste 100%. I went to an ENT who said it was the Methotrexate causing it. I stopped taking it and went on Arava. (I also have RA with the Lupus). Since going off it, I have gotten about 30% of my smell back, but it is distorted. Like evrything smells like coffee to me. I have been on steroids for over one year and they do not help at all with my smell and taste. I am beginning to wonder if it is just the Lupus itself causing the loss. Please let me know if you have any other information about this and I will do the same. I see my rheumy on Wednesday.
    How long have you had Lupus?
    Leslie

    p.s. Try chocolate ice cream and let me know if you can taste it...

    Last edited by LMHART; 10-30-2005 at 07:50 PM.

     
    Old 10-31-2005, 07:54 AM   #4
    Sun_Shine
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    Re: Loss of smell/taste?

    I'm so glad you wrote! I found out the hard way that loss of smell/taste is sometimes a symptom of SLE. It's uncommon but, can occur. There is some information on American Family Physician about it. It can also be caused by medications & or sinius issues - in my case we were able to rule these out.

    After the short course of Prednisone I've gotten a little smell back - not much! To be able to taste chocolate would be wonderful! I can kind of taste milk in plain ice cream - but, it's pretty vague.

    Right now I can taste extreme things like a high cinnamon levels & sugar vs. bitter but, I can't tell the difference in tastes. I can't really smell - I caught a whiff of Pine-sol yesterday but, that's it. I open magazines and try to smell those perfume ads and get nothing. At one point I though maybe it wasn't me & the ad just didn't have a "smell" so I handed the perfume ad to the hubby and before I could even give it to him he said it was horrible smelling. He was pretty shocked I couldn't smell it.

    I have a follow-up appointment with my ENT doctor this week & the Rheume Dr. the day before. I'll keep you posted. You'll have to keep us posted on what you're doctor says as well. Maybe he/she can add some more insight.

     
    Old 11-01-2005, 10:44 PM   #5
    LMHART
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    Re: Loss of smell/taste?

    Hi again!
    Going to my rheumy in the morning, will write asap with any news. This is my last visit with him, he is moving out of the country for good. I have been fortunate to have him for the past year. I am nervous about his replacement doc! Talk to you soon...
    Leslie

     
    Old 11-03-2005, 03:36 PM   #6
    LMHART
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    Re: Loss of smell/taste?

    Hi Sun Shine,
    Went to the rheumy's yesterday and he thinks it could possibly be just from the Lupus and maybe not the Methotrexate - he just isn't sure. I have noticed a gradual loss through the years, then total during my last flare. I think I may go back to the ENT and see if his opinion has changed. I have to start Enbrel tomorrow for the RA - what an insurance mess. It costs so much for the injections. I have costochondritis and feel horrible. Can't wait until things are under control with the RA and SLE. It's been a rough year....
    Let me know how you are doing - if it is from the Lupus they said it is a rare thing to happen. It's neat to hear that someone else is having the same thing!
    Leslie

     
    Old 11-03-2005, 05:58 PM   #7
    Sun_Shine
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    Re: Loss of smell/taste?

    Hi Leslie, sorry to hear you're feeling badly - do take it easy & take care of yourself. Dealing with insurance & all the other insane stuff certainly doesn't help. I wish it was easier!

    I went to the Rheume and he was pretty puzzled by the loss. You're right it is such a weird Lupus symptom that very few get - it's nice to be able to have someone else to talk about it with. Although I really hope it will come back for us both - soon!

    I thought my ENT appointment was tomorrow but, it's not until the end of next week . Last appointment he said there were a couple of things we could try if the prednisone didn't work (he also said they weren't easy) but, I have to wait until next week to find out what they were. I'll keep you posted. Maybe you're ENT will have something to add. We can hope! Take care of yourself & don't let the roller coaster get you down.

    Ani

    Last edited by Sun_Shine; 11-03-2005 at 06:00 PM.

     
    Old 11-28-2005, 07:37 AM   #8
    LMHART
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    Re: Loss of smell/taste?

    Hi there,
    How are things going for you? Any updates with your sense of smell and taste? Mine is completely gone again. I take Arava and started Enbrel...still not sure what has happened.
    Did you have an MRI done of the brain? I did and it was fine. My ENT says that a lesion in your cribiform can cause these symptoms...important to get it done. It's propbably fine, but just to be safe.
    Talk to you soon,
    Leslie

     
    Old 11-29-2005, 12:56 PM   #9
    Sun_Shine
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    Re: Loss of smell/taste?

    Hi Leslie! Hope all is going better for you. Yep MRI of the brain twice. (Doctor didn't think the magnet at the first place was big enough). Nothing unusual on either though. Plus a XRAY of the head - which showed sinus inflammation but, nothing as to why the lack of smell & taste. I've been on Prednisone (now at 55mg) for about 3 weeks now which amazingly I've gotten about 10% more of my smell/taste back! I could actually slightly taste some of the Thanksgiving dinner which was awesome!! Pumpkin Pie yum.

    Overall though it's just been ruled as a rare symptom of Lupus (since they've ruled everything else out). ENT Dr. said there was nothing more they can do but, felt optimistic I could continue to "possibly" see improvement since it's returned somewhat.

    So I'll keep hanging in there & sticking my face into flowers hopefully for a whif. Hopefully I won't have to be on this high of steriods for too long but, for now it's one day at a time.

    Keep us posted on how you're doing too!

    Happy Holidays!
    Suni

    Last edited by Sun_Shine; 11-29-2005 at 12:57 PM.

     
    Old 12-01-2005, 06:07 PM   #10
    LMHART
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    Re: Loss of smell/taste?

    Hi,
    I am so glad to hear that you had the MRI. It's good to know what it's not, if you know what I mean. I have zero smell/tatse still. I quit the Arava and hope for better results in the upcoming weeks. I pray that the steroids work more and more for you. Keep me informed!!! Keep in touch!
    Leslie

     
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