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Vasculitis UK
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Thirst, metallic taste, and dry mouth

So this has been happening to me off and on for the past year or so. I have an odd metallic taste in my mouth, I also get a dry mouth and throat. I'm very thirsty and have a craving for specifically tap water. I was fatigued really bad the other day but I'm not sure if that's a symptom or if I was just sick/tired. Does anyone know if this is an iron deficiency or anemia etc?

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I used to get really thirsty & a dry mouth as a side effect of some of the tablets I was on. Amitryptiline in particular causes that.

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I'm on Zoloft and some allergy medication so I'll check the side effects

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Have you been checked for diabetes? That can also cause those symptoms.

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I haven't but my cousin has it so it could be in the family. But as far as I know I haven't experienced any of the other symptoms so I think I'm clear of that

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I have had this problem (bad taste is rancid rather than metallic) plus burning lips and numb face for years now - mine is related to small fibre neuropathy of Sjögren's Syndrome. Maybe ask the dentist to rule out oral thrush and lack of saliva?

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And do u take any treatment for sjogren syndrome

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Yes I have 2 kinds of eye drops, 2 eye gels and mouth spray and oralieve gel plus Salivex pastels.

I'm also on the maximum dose of Mycophenolate - but most are only offered Hydroxichloraquine or sometimes Methotrexate. This is because there are no targeted systemic treatments for the sicca. But if you have a very multi system presentation as I do then immunesuppression is sometimes used. There is a increased risk of non Hodgkins Lymphoma for those with Sjogrens antibodies so they are wary of immune suppression for this reason. However I was diagnosed by positive ANA and very decisive lip biopsy result so my risk of Lymphoma is not as high.

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My doctor still has doughts that i have sjogren but i have positive antibodies for them

Meanwhile i have churg strauss syndrome and he wants to give me immunosuppressants and iam afraid of them and still refusing to take them

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I can understand your reticence but I think you should trust your doctor to balance out the risks of the disease versus the drugs for you.

Both diseases can be pretty serious and the drugs can significantly help - especially with Vasculitis. For what it's worth I have tried 3 other immunesuppressants - but Mycophenolate has been the first I've tolerated well.

Ps and the risks of Lymphoma are still extremely low compared to the risks of leaving your disease untreated.

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