Yes there will at least two emergency room doctors. That’s what my Granddaughter and her new husband are and I assume probably a few more. We have read the side effects over again and with my history of side effects from other autoimmune medication and more we have decided just to go and be as Careful as we can without this additional fear of side effects. If the next booster is available before the event do you suggest having it? Thank you!
@dancing1 Sounds like you have a good plan, so go and enjoy! As for another booster, I wouldn’t want to say one way or the other. It all depends on how you did with the first two boosters. If you did OK, then go for it. If not, then skip it until you are home.
Just be very careful and wear your mask! Will you do that?
I am so sorry. Yes the pain everywhere from the dryness is incredible. I am not able to take any of these meds so I’m handling it all the best I can. This newer dry horrible tasting mouth and throat are making things worse I was coping with the dryness as best as I could and swallowing issues but having to Cope with awful constant taste and burnout mouth is so much to handle for me . I have two coming up appointments to see if they can find the reason. Over the years I have dealt with migraines for years that miraculously disappeared in my sixties, IBS hysterectomy, bladder surgery, Ostomy surgery as positive as possible but now with this scleroderma and sjogrens in old age I think this is the worst. I appreciate being a part of this group where we can vent and discuss our issues. I feel after reading some of your awful issues and fears I know I am not alone in this struggle. Thank you! And I appreciate all of you! Trying so hard to fight all these difficulties and live as positivity as possible! Please forgive my errors and poor typing with my swollen hands. I wanted to say I thank you!
@dancing1 Sounds like you have a good plan, so go and enjoy! As for another booster, I wouldn’t want to say one way or the other. It all depends on how you did with the first two boosters. If you did OK, then go for it. If not, then skip it until you are home.
Just be very careful and wear your mask! Will you do that?
It’s been three weeks now and I’ve been to dentist and had a deep cleaning. I am wAiting for my appointment with GI unless there is a cancellation it’s on Aug 29th. I call my Mayo Clinic rheumatologist and he said he was sorry I would have to see my GI get help. I’m having the same awful taste nothing is helping it sometimes burning in my mouth and throat. Eating very small meals but between dryness and awful taste very difficult. Drinking orgain drinks for mute nutrition but going very quickly through my system and ileostomy. Hard to maintain weight and strength. Need to find more liguid drinks to maintain weight and be able to swallow. So frustrating!
I've given up omeprazole, famotidine, Tums, Rolaids, Coca-Cola syrup and all of the other stuff, including Emetrol when necessary, that I was taking to tame stomach stuff by going all the way back to my grandmother's "cure" of a teaspoon of baking soda in 8 ounces of water at night.
It seems to work fine. I don't have high blood pressure so that might be a concern for those who do. But it's a relief to stop taking all of that as those meds invariably triggered constipation and/or gas. Which then required other over-the-counter stuff. It was like being on a GI tract merry-go-round!
For what it's worth, things got better within the first 48 hours so it might be worth a try.
My one suggestion is to start small. I've seen online suggestions of adding a tablespoon of baking soda to 8 oz. of warm water and that seems way to much to me. And unpalatable so maybe gag-worthy. Try a few pinches of baking soda in a half-glass of cold water. Stir and drink. You can try more an hour or so later if necessary. Or mix a glasses of water and some baking soda and sip throughout the day if needed. But, again, if you have high blood pressure, ask doctor first because of the sodium in the baking soda. Hope it helps!
I’m still struggling with terrible taste in mouth now going on for three months back to GI doctor in one week. Have appointment with dental college specialist next month. Nothing has gotten rid of this awful taste is constantly there. Tryin suggested olive oil rinse from a sjogrens dental specialist? Just can’t get rid of awful taste.
Thank you so much. I do have our bed elicited and sleeping with more pillows which raises me more also. I had overcome the acid reflux for over a year with my very careful eating methods. I’m only able to eat very small meals but this acid reflux had just changed and come back with the awful mouth taste in the evenings. Thank you for this reminder. I will check by bed again to see if it is correctly raised. Maybe I’ll half to cut my already small meals to even smaller. Sometimes lately even the small orgain protein drink is too much for me to consume. Thanks again! I have had this issue of GI problems for over twenty years maybe more but have had to cut my eating back extremely over the past two years. But this terrible taste is the worst and nausea it brings.
I've had GERD for more than twenty years, managing it with minimal meds, but it has taken a turn for the worse recently. Raised bed, small portions, wedge pillow, restricted diet--nothing seems to work. So I am thinking of an adjustable bed, but would like to know more as it is a big investment. And my former PCP said it's really not necessary. So, I am looking for answers. My heart goes out to all who are in this situation. Keeping fingers crossed for all of us.
I’m still struggling with terrible taste in mouth now going on for three months back to GI doctor in one week. Have appointment with dental college specialist next month. Nothing has gotten rid of this awful taste is constantly there. Tryin suggested olive oil rinse from a sjogrens dental specialist? Just can’t get rid of awful taste.
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@dancing1 Sounds like you have a good plan, so go and enjoy! As for another booster, I wouldn’t want to say one way or the other. It all depends on how you did with the first two boosters. If you did OK, then go for it. If not, then skip it until you are home.
Just be very careful and wear your mask! Will you do that?
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1 ReactionI do agree. It pain is so stressful and doctors I’ve found have no way help us it seems except the heavy duty drugs we don’t want to take. 😢
I am so sorry. Yes the pain everywhere from the dryness is incredible. I am not able to take any of these meds so I’m handling it all the best I can. This newer dry horrible tasting mouth and throat are making things worse I was coping with the dryness as best as I could and swallowing issues but having to Cope with awful constant taste and burnout mouth is so much to handle for me . I have two coming up appointments to see if they can find the reason. Over the years I have dealt with migraines for years that miraculously disappeared in my sixties, IBS hysterectomy, bladder surgery, Ostomy surgery as positive as possible but now with this scleroderma and sjogrens in old age I think this is the worst. I appreciate being a part of this group where we can vent and discuss our issues. I feel after reading some of your awful issues and fears I know I am not alone in this struggle. Thank you! And I appreciate all of you! Trying so hard to fight all these difficulties and live as positivity as possible! Please forgive my errors and poor typing with my swollen hands. I wanted to say I thank you!
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Hug
1 ReactionIt’s been three weeks now and I’ve been to dentist and had a deep cleaning. I am wAiting for my appointment with GI unless there is a cancellation it’s on Aug 29th. I call my Mayo Clinic rheumatologist and he said he was sorry I would have to see my GI get help. I’m having the same awful taste nothing is helping it sometimes burning in my mouth and throat. Eating very small meals but between dryness and awful taste very difficult. Drinking orgain drinks for mute nutrition but going very quickly through my system and ileostomy. Hard to maintain weight and strength. Need to find more liguid drinks to maintain weight and be able to swallow. So frustrating!
I’ll try this. Thank you. Nothing has changed so I will try this.
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1 ReactionMy one suggestion is to start small. I've seen online suggestions of adding a tablespoon of baking soda to 8 oz. of warm water and that seems way to much to me. And unpalatable so maybe gag-worthy. Try a few pinches of baking soda in a half-glass of cold water. Stir and drink. You can try more an hour or so later if necessary. Or mix a glasses of water and some baking soda and sip throughout the day if needed. But, again, if you have high blood pressure, ask doctor first because of the sodium in the baking soda. Hope it helps!
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1 ReactionI’m still struggling with terrible taste in mouth now going on for three months back to GI doctor in one week. Have appointment with dental college specialist next month. Nothing has gotten rid of this awful taste is constantly there. Tryin suggested olive oil rinse from a sjogrens dental specialist? Just can’t get rid of awful taste.
Have you researched Burning Mouth Syndrome? I have this.
I've had GERD for more than twenty years, managing it with minimal meds, but it has taken a turn for the worse recently. Raised bed, small portions, wedge pillow, restricted diet--nothing seems to work. So I am thinking of an adjustable bed, but would like to know more as it is a big investment. And my former PCP said it's really not necessary. So, I am looking for answers. My heart goes out to all who are in this situation. Keeping fingers crossed for all of us.
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1 Reaction@dancing1 Were you able to see the specialist at the dental college? Die they recommend anything new?