Lupus Meds question

It's so hard when you are dealing with different specialties, some of which have treatments that conflict. I do not know the answer here but I know that as a cancer survivor (so far) with a lupus diagnosis (but mild) my docs have been reluctant to prescribe a bone med that affects the immune system. Is the SLE affecting your organs?

@windyshores Dont know. Doc seemed to be having long appts with people yesterday. I was happy. I get in and he's like "ask your questions but quickly I have another patient waiting" 😳😳. Really?? So of course I get flustered but I ask my questions and his answers did nothing for me. Couldn't take labs cos he was short staffed but gave me a script and handed me printouts on the meds. I think the meds will kill me! I am not feeling at all well this am. I feel so dehydrated but have already had 4 glasses of water and it's only 7:30 am!! I haven't even had a bone marrow biopsy!! I need my doctors to talk to each other!!! I literally feel like I'm dying....and I'm afraid.

Rehydrate slowly - have seen recommendation of one cup everyy2 hours for normal situations. Too much water in too short a time not advised - small amounts are better absorbed, Try eating "juicy" fruits, canned are best - peaches/pears, fresh grapes, watermelon, etc and drink the juice with, also getting the nutrition & will provide hydration. Electrolyte solutions - like Pedialyte (also generic) - taken slowly per bottle directions, may help. When we are put on rehydration "drips" in hospital or ER, is a solution that literally drips the fluid in at a measured drip/dose to insure the body will absorb and not be overwhelmed. Are you "putting out" as well as taking in - does not need to be equal, just to keep kidneys from stress. I can appreciate your angst with your doctor - that alone can be so distressing; perhaps a 2nd or 3rd opinion may give you more answers. I have used MY time to leave the room - they have to earn my repeat business. But (I) don't just "jump ship". Do not hesitate to get whatever help you need anywhere you find it - loyalty to a medical individual, unless they are "the one/s)" may need to be questioned. I don't mind having my place in line, but i am quick to exit the wrong lines. Your thirst may have meaning - please do not hesitate to go somewhere ASAP if you continue to feel this way, being as calm, cool, and collected as you can manage to get the best outcome. As you DIY your thirst at home, start a written record of what you are doing for this, may prove useful, does for me. Wish you had my PCP - they have set the standard of providing care in todays's medical maze.

@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.

@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

@gingerw
Believe me I've tried. They just won't work together to help me and it doesn't help that they're in different medical "groups". Can't we all play nicely together ??? The more I open my mouth the more they retreat. Except my favorite young primary who is truly gifted and thinks outside the box!! He's the only one who thought to test for tick borne disease and found positive to a really bad one!!

@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!

@becsbuddy
Thank you for the link. The one to Mayo network hospitals did not work. I think I was there already during my Mayo travels online. People don't understand what it's like where I live. Playground of the stars and wealthy people. Horrid, and hardly any, doctors. The local hospital is so bad I can't believe it's allowed to operate!! That's a serious comment, not one said to be funny. The closest larger hospital - I was very unimpressed with the thyroid cancer endocrinologist specialist. They are associated with my local hospital now 😳😳. My do nothing leukemia doctor, who let me get to where I am now (labs just came back-they are sooooo bad im freaking out. Going to fax them to new leukemia doc and maybe he'll see me earlier.) is from a major NYC hospital 😳😳😳. Mayo would be a good fit but for the fact I am on the east coast. I have insurance that will cover everything, just will be away from all family and friends during fall and winter and not sure I'd be able to handle it. And that's if they approve me! Local Hospital nutritionist actually told me with my severe wheat allergy I could eat gluten free buns! She was wrong. Bad hives outbreak!! They don't even have a special diet for those people with food allergies!! I have called, been given old lists, left messages, for nutritionists to no avail. I'm living in a true hell.
I've placed calls to RDs on a good website. One just got back to me that she was surprised I called as she hadn't seen or heard from anyone in a few years 😳
I'm the living version of Murphy's Law. Big storm coming in tomorrow for two days. I'll wait til Monday to make more calls. Haptoglobin is 2.9 ( range is 63-273!!) Platelets down 20 to 134 (in 2 wks) Blood sodium is down to 132. This is serious as I almost died in July when it went to 122!!! And I ate high protein (which is 6.6!) high sodium diet the night before!! RBC is 2.66. Hemoglobin is 10. Hematocrit is 29.8. They might not seem super low but I have severe anemia that leukemia doc in big city hospital refuses to treat. I send all my labs to him taken locally and I'll bet he never looks at them. I'm going downhill faster then a sled on an ice hill. And I've got a 5 yr old grandson who I love more than anything...I'm not ready to leave this life. 😢🙁

@jerrysgirl3 Oh, my gosh, I tall sounds just terrible! You must have a comprehensive medical center somewhere near you! Do you? There is also Mayo Clinic, Jacksonville, Fl. I know you could be away from home but…. You can always call and ask if they have a Mayo-trained doctor in your area. May I ask what state you live in?
As for nutritionists versus dietitians: you want a dietitian. We just had a class on the difference which is education and on-the-job training. Very important.
I just don’t know what I can say to help you. You’ve got to find a competent, caring doctor.
Have you checked with the American Cancer Society?

@becsbuddy Yes. The calls I've been making have been to RD's just by happenstance lol. I didn't realize what it meant until yesterday. I live in NY State on eastern Long Island. The few good doctors we have (I can count on one hand) are totally swamped and overwhelmed and are into March 2024 with their appts!! People can't afford to live out here-even doctors. Not like this when I moved out here 37 years ago. We have NYU Langone and NY Presbyterian centers however they just gobbled up regular doctors out here. They are not trained NYU Langone doctors! They're the same crummy doctors whether they're with the facility or not. The facility name does NOT make the doctor 😳. I will not set foot in FL nowadays, even if it would save my life! Calling for a Mayo trained doctor is a good idea. Thank you!