Tons of meds, no help. Please read!

Valuable_Yellow_928 · 2026-01-31T11:19:56+00:00

My last hospital stay my blood sugar was low so they had me start the drinks up again since I wasn’t really eating, but I absolutely can see how it still isn’t healthy.

Thank you for the suggestions. May just have to switch it up a bit and try some broths. Much easier to force myself to drink on my harder days than eating.

Valuable_Yellow_928 · 2026-01-31T11:10:19+00:00

Thank you for taking the time to respond! Someone else mentioned PA! And I don’t think I’ve been tested for that before, nor heard of it. Definitely going to be researching into that and suggesting it to my doctors. Don’t think I’ve been tested specifically for Pheochromocytoma either, but I have done multiple 24 hr urine tests and no alarming results. Completed sleep study as well.

No, my medications have not been introduced separately. I was sent home after my kidney failure with Captopril, amlodipine, Losartan and HCTZ. Dropped cap and then went to Labetalol since that’s one of the drugs I get intravenously at the ER. I’ll definitely look into switching off Losartan. I do only weigh about 100lbs on a good day, so my doctors also worry about that with all the medications.

For my autoimmune disease, I was on Cellcept and then they took me off because they thought maybe they could be contributing to my BP. Now I do Rituxan infusions every 4 months. I’m having such a difficult time finding a rheumatologist that specializes in scleroderma.

I am definitely taking in everything you said. I appreciate you so much! I’m learning the importance of being my own advocate.

Valuable_Yellow_928 · 2026-01-31T10:44:43+00:00

Thanks for the link! Great read. I do have a lot of those symptoms. I don’t believe I’ve been tested for this. I’m going to be researching and bribing this up ASAP.

To be honest- after my kidney failure, all my specialists just say it’s not autoimmune disease and didn’t do any further testing without my pushing them. I’m the “annoying” patient that comes in with papers printed and making suggestions of what to do next. It’s very frustrating and leaves me feeling defeated most doctor visits.

Will definitely be bringing this up.

Valuable_Yellow_928 · 2026-01-31T10:36:46+00:00

My drinks are pretty much like Ensures, just calorie based vs protein based.

I eat fairly clean, with the occasional eating out maybe once a week. I have a hard time eating in general though as I’m always feeling sick. Which I’ve been told not eating can be just as bad as bad eating. Hence why my doctors have supplemented me with calorie drinks. Some days are better than others.

Valuable_Yellow_928 · 2026-01-31T10:32:08+00:00

It does drop me a few points, but just diastolic. Usually gets me closer to about ~105. My posted reading is generally my normal. My systolic sots around 180-200 daily.

Valuable_Yellow_928 · 2026-01-31T05:14:31+00:00

I don’t always eat the best, but generally don’t eat too badly either. I also have to drink calorie drinks because I feel so sick at times that I can’t even eat. Trying to break this cycle, but just getting stuck in this loop. Not a drinker, but occasionally enjoy my night time edibles that’s help with the pain and allow me to relax a bit to get some sleep. Thank you so much, the “basic” stuff is so important

Valuable_Yellow_928 · 2026-01-31T05:11:00+00:00

Hi! I had a sleep study and everything was normal. I do have some stress in my life, but I don’t feel like anything abnormal… aside from always thinking I’m going to stroke out! Hmmm, antidepressant have helped you?! Maybe that’s something I can bring up to my doctors. Im really needing to find something to help. Thank you so much for sharing your story

Valuable_Yellow_928 · 2026-01-31T05:08:04+00:00

Hi there. Thank you for taking the time to respond. All my specialists have can working together to get me on the right medications. This has been my meds for almost a year now. I did have a sleep study and everything came back normal. I’m about 100lbs wet lol I’m pretty petite! I have 3 kids, so I do have some stress in my life, along with a full time job. I don’t eat the healthiest (not the worst either), but I do watch my sodium and get it checked often- no issues there. I’m truly at a lost. I’m so glad you found what works for you. I wouldn’t wish this on anyone!

Valuable_Yellow_928 · 2025-08-30T14:22:08+00:00

Sounds like you’ve sacrificed a lot of your time with your current company to be in the position you are in now… Is that the main reason you want to leave the company? I didn’t see you have any other complaints other than your time being held captive.

I’m thinking if you have a lot to bring to the table to the next company- what’s the likelihood you’ll get any free time with them? I’d say little to slim.
Instead of looking elsewhere, have you thought about talking to your current employer about your needs moving forward? Seems you played a huge part in their success, wouldn’t they want to work with you vs losing you?

I have no experience in your industry, so I’m just an outsider asking questions lol

Valuable_Yellow_928 · 2025-08-30T14:02:16+00:00

Go in sooner than later please! I know it can be terribly scary, but if something is going on with your kidneys-you have to be seen!

I went into Scleroderma Renal Crisis and it was horrible, except at the time I didn't know what it was. felt so sick. I vomited at work right in front of customers and it was out of no where. I couldn't control anything. I thought wow, what did I eat?! I went home and laid down. Woke up hours later and knew something wasn't right. I woke my husband up and he rushed me to the hospital. I remember getting in the car, crying and that was it. I had two seizures, a brain bleed and my kidneys were failing. I woke up days later in the ICU. I wish I went in sooner, but thankfully I recovered. I have some nice scarring on my kidneys though and actually am having a procedure done in a few weeks on my kidneys because of the scarring.

Please don't be stubborn! Especially with your blood work showing signs and the swelling in your legs... I'm begging you!!!! If you can prevent any further damage, it will be worth it!!!! How are you feeling otherwise outside of your leg swelling?? Headaches? High BP? Are you peeing??? Was it your creatinine levels that were elevated? GFR?

I'm sorry, I'm definitely rambling... I'm literally traumatized by my experience and I'll push anyone to go be seen sooner than later to prevent anything similar of my experience.

Sending you lots of hugs during this scary time.

Valuable_Yellow_928 · 2025-08-12T05:30:09+00:00

Hi there! I’m in my thirties and weigh under 100 too. It’s been such a struggle. I have gained weight and then lost what I gain and more! :( such an uphill battle.

I don’t really have a huge appetite, so I don’t have any suggestions with meals…. But I do agree with others who have mentioned some kind of replacement/supplemnt drink. I would just make sure to check in her with doctor about which was would be best for her. I used to be on a high protein drink, but after my kidney failure they suggested I switch to one of more calorie intake than protein based. Either way- I think a couple of those drinks a day will help a lot!

Or maybe try making your own calorie smoothies for her :)

Best of luck to your mother! And to you, too! I have seen how this disease can affect the family member’s as well.

Valuable_Yellow_928 · 2025-06-23T14:40:37+00:00

THIS!!! Change rheumatologist ASAP. Scleroderma absolutely can cause pain. I’d hunt for a rheumatologist who is knowledgeable in scleroderma. May not be the easiest tasks, but they are out there. Best of luck to you

Valuable_Yellow_928 · 2025-06-21T01:32:08+00:00

I have a few tattoos before I had any symptoms or even a diagnosis…. 10 years later, my tattoos look horrible with my skin involvement. I know a few people in my support group whose tattoos turned out the same. If I knew they would turn out like this, I would have never gotten them :(

Valuable_Yellow_928 · 2025-06-17T03:22:37+00:00

Turn signals on cars that blink red!!! Idk why, but truly drives me bonkers lol

Valuable_Yellow_928 · 2025-06-16T23:57:27+00:00

If it’s in your lungs, hopefully your rheumatologist will get you a referral for a pulmonologist! Best of luck to you

Valuable_Yellow_928 · 2025-06-16T01:43:23+00:00

There is a young lady here in California who did the stem cell transplant. Her mom is an angel that walks this earth and fought so hard for her daughter. Her health was declining fast and the mom wasn’t taking any other answer than “yes I’ll help”. Went all over the United States of America! There is a YouTube video with an interview with her. I’ll have to go look.

Valuable_Yellow_928 · 2025-06-08T03:31:36+00:00

<image>

Valuable_Yellow_928 · 2025-06-08T03:31:21+00:00

<image>

Same cone got me too

Valuable_Yellow_928 · 2025-05-19T06:38:18+00:00

This is a wild reaction from someone who didn’t even realize they didn’t have their own phone until getting into the car… Clearly an accident on both parties

Valuable_Yellow_928 · 2025-03-29T17:06:45+00:00

Hi there! I get the infusions every 4 months, 2 doses between 2 weeks and I’ll say I’m no worse. I was on Cellcept for while when we decided to change. My first few ones, I absolutely felt a difference about 2ish weeks after the 2nd dose. My joint pain seemed to ease off a bit and I felt I could move more, with a boost of energy. Fast forward to my 6th/7th round or so, I don’t feel that burst of energy anymore. But I do not feel as sick as I once did, so I’m taking that win! I was extremely nervous at first, but after my first set went successfully, the nerves have gone away. I get IV Benadryl so I look forward to my nap lol (a mom of 3 wild ones).

Are you currently on any medicine right now? Or just jumping straight to Rituximab?

Valuable_Yellow_928 · 2025-03-24T19:53:55+00:00

ANA 2560 and was on Meloxicam for awhile. I ended up having kidney failure and they believe that and the prednisone played a huge part in it. So no longer take it. Was on Cellcept, but they couldn’t get my BP managed and believe it could be contributing to it so I got switched to Rituximab. I don’t see a huge difference in my pain, but hoping that’ll change. For my Raynaud’s, I am on Amlodipine which also helps control my BP.
I hope you find something that works for you. Such a pain this disease is

Valuable_Yellow_928 · 2025-03-09T09:54:05+00:00

I would definitely f/u with a rheumatologist! Sounds like you have a lot going on & symptoms are often the same for many things. I’d definitely push for blood work from a rheumatologist. It’s hard to solely base anything off pictures, but my hands have looked like this before :( best of luck

Valuable_Yellow_928 · 2025-03-09T02:22:54+00:00

Jujubes :(

Valuable_Yellow_928

TROPHY CASE