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Lupus Meds question

Autoimmune Diseases | Last Active: Sep 27, 2023 | Replies (26)

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@jerrysgirl3

@flamingal Thank you for your response. Makes sense to drink slowly. Only problem is I dehydrate very fast! It's very bizarre. I had 9 tubes taken this am. I drank almost 8 cups of water prior to going. My mouth inside felt like it was puckered!! I always note the color of my urine -it's been light yellow which is good. Not dark or clear so obviously I am well hydrated. In July I had a car accident due to confusion caused by critical low blood sodium!!!! I almost died. Needed blood transfusion overnight! I was also diagnosed with ehrlichia (tick disease) while in hospital (taken by primary) which can cause that issue. Hospital wanted me to cut back to 4-1/2 cups of water /day. I drink that before 10 am!! Another doc told me to take LMNT electrolyte powder which has 1000mg sodium, 200mg potsssium, 60mg of magnesium. At ONE TIME!! I sprinkle some, certainly not the whole packet which usually lasts me a few days, in a cup and add water. I suffer from high blood pressure -can't have so much salt 😳😳. Lupus doc is actually the best one around and super stressed since his front desk person/assistant left a few months ago. She always had him ready and informed on every patient. Women there now, while great, don't understand what he needs. I was an office mgr for 25 yrs and was excellent at what I did, that's why I note office issues when they occur. I bring my own copies of labs as well as sometimes fax them. Now I just got my petscan results back and they are perfect, if anything better than Dec 2022 😳😳. I am suffering so much with the nodes expanding in my neck and throat area you can't imagine. I am constantly fighting aspirating food because my swallowing has gotten so bad. My spleen and liver swell - they noted perfect. I trust that radiology group so not an issue there I don't think. I am fatigued yet can't sleep. I wonder if everything is related to deficiencies in my diet. I was also on hydroxychloroquine (lupus) and Zanubrutinib (leukemia) at the same time and I had increased the dose to 2 each which both doctors wanted. They actually wanted 4/day each but I refused. When I looked up side effects they had 98% of the same! So it was like I was taking the double dose anyway. My issues started upon lupus diagnosis. And dairy, soy, wheat, and egg allergy diagnosis at the same time!! So learning how and what to eat has been very intense!! I know I probably need vitamin intervention but I can't find a nutritionist as crazy as that sounds. Docs not helping. I finally found an online therapist and started last week!! A Godsend so far! I know I should be happy and dancing for joy that my petscan was even better than the last one 😳, and didn't show any bone marrow infiltration which is fabulous! But why am I having all these issues? Had perfect MRI (checking for another stroke) but EEG was bizarre. My young fabulous primary noted it as did I. Neuro says everything is great even tho it clearly says "abnormal" with a follow up of wearing a monitor(!) I feel like screaming. I sound like a hypochondriac but I can assure you that what I am living with is a nightmare. A nightmare. Primary had me start folate today which I did after labs were drawn. I have anemia. Maybe that's causing everything. And THAT appears in my recent labs as per lupus doc. I'll be interested to see what labs show. And I'm also afraid they will be perfect as well because that means docs won't help me, although my rbc #'s have been extremely low as well as platelets and hemoglobin. I'm throwing my hands up because there is no answer here. 😢😢. Maybe there never was for me.

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Replies to "@flamingal Thank you for your response. Makes sense to drink slowly. Only problem is I dehydrate..."

@jerrysgirl3 When you are dealing with seemingly unrelated health concerns, it can be so frustrating to both you and your medical team. This is when you need to advocate for yourself. You are the center hub of the wheel. Your medical team are the spokes of that wheel, and everyone cannot work singly without working together. Ask/insist your doctors work together on your case, the meds and treatments. That's what I had to do.
Ginger

@jerrysgirl3 You are really having a tough time, aren’t you? Are you being seen at a community hospital or a major medical/university hospital. At these larger hospitals, doctors usually do work together on problem patients. You should be able to find one in you city or state. There are also the Mayo Clinic network hospitals which work along with the Mayo Clinic. Use this website to locate one: https://mayoclinic.org/about-mayo-clinic-care-network/members
Also, I found this website that helps you find a registered dietician-RD-not a nutritionist.
https://www.eatright.org/find-a-nutrition-expert?_ga=2.7671799.434232786.1695417809-2027734427.1695417808&type=telehealth
See if you can find one. You can also call the local hospitals and ask if they have dietitians on staff who will meet with outpatients.
Please don’t throw your hands up and give up. You are worth all the trouble that you may cause. You’ve received good advice from @gingerw , one of the strongest women I know.
Will you do some research this weekend and make some calls Monday? YOU are worth it!