Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 Dear . My nme is Cindi Hein, i was diagnosed a yar and half ago. I am on methotrexate shots and prednisone too. I noticed food tasted funny for a while but that gradually went away, now i over season everything so I can taste it. i haven't lost too much have yet, I'm 44 years old and my hair is real long, it's gotten brittle and broken and falls out some. Keep up the vitamins, this has really helped me and my blood panels. I think your taste will come back, don't worry. I actually did so bad on all doses of steroids, that I went off them slowly and never told my doctor. DO NOT DO THIS! I am going to go back on them no matter how bad i feel because I am getting so much inflammation and extra pain. My meds only give me about 25% relief. It is so easy to get depressed, you can't do what you used to do without even thinking about it, you don't know what the future will bring, you don't know how you will re-invent yourself.... all these things I am struggling with and I do not have the answers. But, I just joined this group today and I am so glad I did. Together we can all help each other. This is going to be a long journey for us and we have to fight to keep up mentally, because then we are better physically. You can do it ! Mail me day or night. Tell me more about yourself. It will be okay, you have a support system now. Thanks and take care of yourself. - Cndi Hein, heinscsf@... rachel brandenburg <rbbrand2@...> wrote: Hello, My name is . I was recently diagnosed with rheumatoid and scleroderma. Just had my first chemo (methotrexate treatment) this week. Have lost probably 90% of my taste and cannot feel any hot foods in my mouth. Has anyone else had this happen? The only thing I can taste real good is raw lemon. I am trying to restart the taste buds. Is there anything else I can do? I am on pharmaceutical grade vitamins and keeping up the calcium, folic acid and the like. How long has anyone else been on methotrexate before going to the shots twice a week? What other symptoms have y'all had and when did your hair fall out? I am also on steriods twice a day. My muscles paralyze off the steriods. Mine is in the muscles...bypassed the joints already....intermediate stage.... Any imput and chatting is wanted and needed. I'm depressed....rachel _________________________________________________________________ Limited-time offer: Fast, reliable MSN 9 Dial-up Internet access FREE for 2 months! http://join.msn.com/?page=dept/dialup & pgmarket=en-us & ST=1/go/onm00200361ave/dire\ ct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 Hi Cindi, Thank you for responding. How long before you noticed the taste coming back? Would you say that you have most of it back by now? Being physically active has always been a challenge, because I have under active thyroid disease and am morbidly obese. I do pretty good tho and do the best I can, unaided. I have other health problems that complicate things...asthma, chronic depression, high blood pressure...stuff like that.... Did you ever lose the ability to sense hot foods? I can still sense cool foods and drinks, but not hot.... Hanging in there... rachel P.S. I have the opportunity to go to Pigeon Forge with a neighbor tomorrow thru this Thursday. I spoke to my husband and he is ok with it, so I'll be gone a few days to get away from it all and breath mountain air. If you don't hear from me that is why.... Re: [ ] Hi from cindi hein Dear . My nme is Cindi Hein, i was diagnosed a yar and half ago. I am on methotrexate shots and prednisone too. I noticed food tasted funny for a while but that gradually went away, now i over season everything so I can taste it. i haven't lost too much have yet, I'm 44 years old and my hair is real long, it's gotten brittle and broken and falls out some. Keep up the vitamins, this has really helped me and my blood panels. I think your taste will come back, don't worry. I actually did so bad on all doses of steroids, that I went off them slowly and never told my doctor. DO NOT DO THIS! I am going to go back on them no matter how bad i feel because I am getting so much inflammation and extra pain. My meds only give me about 25% relief. It is so easy to get depressed, you can't do what you used to do without even thinking about it, you don't know what the future will bring, you don't know how you will re-invent yourself.... all these things I am struggling with and I do not have the answers. But, I just joined this group today and I am so glad I did. Together we can all help each other. This is going to be a long journey for us and we have to fight to keep up mentally, because then we are better physically. You can do it ! Mail me day or night. Tell me more about yourself. It will be okay, you have a support system now. Thanks and take care of yourself. - Cndi Hein, heinscsf@... rachel brandenburg <rbbrand2@...> wrote: Hello, My name is . I was recently diagnosed with rheumatoid and scleroderma. Just had my first chemo (methotrexate treatment) this week. Have lost probably 90% of my taste and cannot feel any hot foods in my mouth. Has anyone else had this happen? The only thing I can taste real good is raw lemon. I am trying to restart the taste buds. Is there anything else I can do? I am on pharmaceutical grade vitamins and keeping up the calcium, folic acid and the like. How long has anyone else been on methotrexate before going to the shots twice a week? What other symptoms have y'all had and when did your hair fall out? I am also on steriods twice a day. My muscles paralyze off the steriods. Mine is in the muscles...bypassed the joints already....intermediate stage.... Any imput and chatting is wanted and needed. I'm depressed....rachel _________________________________________________________________ Limited-time offer: Fast, reliable MSN 9 Dial-up Internet access FREE for 2 months! http://join.msn.com/?page=dept/dialup & pgmarket=en-us & ST=1/go/onm00200361ave/dire\ ct/01/<http://join.msn.com/?page=dept/dialup & pgmarket=en-us & ST=1/go/onm00200361a\ ve/direct/01/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Welcome, Cindi! Sorry that you're having such a hard time. Do you have RA? Do you have a rheumatologist? I urge you to confess that you weaned yourself off your prednisone. Without full disclosure, it's more difficult for your physician to help you. I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org Re: [ ] Hi from cindi hein > Dear . My nme is Cindi Hein, i was diagnosed a yar and half ago. I am on methotrexate shots and prednisone too. I noticed food tasted funny for a while but that gradually went away, now i over season everything so I can taste it. i haven't lost too much have yet, I'm 44 years old and my hair is real long, it's gotten brittle and broken and falls out some. Keep up the vitamins, this has really helped me and my blood panels. I think your taste will come back, don't worry. I actually did so bad on all doses of steroids, that I went off them slowly and never told my doctor. DO NOT DO THIS! I am going to go back on them no matter how bad i feel because I am getting so much inflammation and extra pain. My meds only give me about 25% relief. It is so easy to get depressed, you can't do what you used to do without even thinking about it, you don't know what the future will bring, you don't know how you will re-invent yourself.... all these things I am struggling with and I > do not have the answers. But, I just joined this group today and I am so glad I did. Together we can all help each other. This is going to be a long journey for us and we have to fight to keep up mentally, because then we are better physically. You can do it ! Mail me day or night. Tell me more about yourself. It will be okay, you have a support system now. Thanks and take care of yourself. - Cndi Hein, heinscsf@... Quote Link to comment Share on other sites More sharing options...
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