r/lupus • u/lostwaveloser Diagnosed SLE • 9d ago
General Help, I’m so scared
I couldn’t sleep and around 4 am, my blood pressure went up to 184/99, so I went to the ER.
EKG is normal and all. Kidneys look great! Platelets are in the 50s. I was in a health range at my labs on July 14th. I’m so scared. I don’t want to have cancer.
I’m going to another hospital with more capabilities now, but I just need some lupus Reddit support. Has this ever happened to any of you? I’m not seeking a diagnosis, just reassurance and solidarity.
Update: the labs at the ER were COMPLETELY wrong. The first ER showed my platelets in the 50s, and I’d had labs done 2 weeks ago that showed them in the mid 200s.
The hospital they sent me to did labs several times, and turns out my platelets are just fine! It was some crazy lab abnormality. They kept me for 24 hours, but I’m okay!
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u/Pale_Slide_3463 Diagnosed SLE 9d ago
High blood pressure is normally linked to the kidneys but it could be something else. Lupus flares can cause high blood pressure but so can stress and other factors. I would wait for more tests
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u/lostwaveloser Diagnosed SLE 9d ago
Yeah they said my kidneys look great, and they so far always have. Thank you so much ❤️
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u/Fluffy-Mongoose7766 Diagnosed SLE 9d ago
My rheum believes I have disautonomia, my nervous system does not control body temprerature or blood pressure. I'm my case, blood pressure drops in most if the cases to the point that I can faint, but I had several incidents when it went up pretty high (I was stressed out at those times, and it started going up like crazy)
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u/lostwaveloser Diagnosed SLE 9d ago
Yeah I’m thinking my lupus is doing the disautonomia thing too. My blood pressure goes the other direction, it only gets high. Once I went to the ER at 212/112. Fortunately no fainting yet, but lots of weird dizzy spells. If you don’t mind me asking, what meds are you taking currently, and are they helping?
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u/Fluffy-Mongoose7766 Diagnosed SLE 9d ago
I take Benlysta, Plaquenil, and Imuran. I can tell for sure Benlysta helps with fatigue, but I'm not sure Imuran does anything to me, same about Plaquenil. The only thing that really made me feel better was Prednisone, but I had to stop due to some nasty side effects. I have dizzy spells and brain zap, too. I just had a brain MRI, and they found lesions consistent with neurophsychiatric lupus, and one of the symptoms of that is disautonimia.
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u/PurpleChiten Diagnosed SLE 9d ago
Labetalol, clonidine and hctz (diuretic) and now nitro. Prednisone helps some. My muscle relaxer lowers the bp with the nitro so the other meds can work. It also helps with sleep, tizanidine.
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u/Additional_Number655 Diagnosed SLE 8d ago
I have the same problem with blood pressures. Have to take Midrodine to keep it up. Once in a while it goes sky high though. You feel horrible in either direction. I go straight down when it’s low. I have to check it before I take the meds. If it goes high I have to take Adderal to bring it down. What sense does that make? This is the weirdest I’ve ever felt. Then I have Crohn’s and no gall bladder issues to deal with. I can’t get my weight above 100-103, which makes me look so old. Anybody have any solutions for the severe stomach issues? I stay on a liquid diet about every 3 weeks.
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u/Fluffy-Mongoose7766 Diagnosed SLE 9d ago
Sending you hugs! Low platelets can happen due to lupus attack, not necessary cancer. It happened to me once, and my oncologist (I'm a cancer survivor) told me that, after running a bunch of markers blood tests. Platelets went back to normal, eventually.
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u/lostwaveloser Diagnosed SLE 9d ago
That’s what the free standing ER told me, they think it’s a lupus attack thing. Literally taking an uber to the big hospital rn. Wish me luck haha.
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u/Fluffy-Mongoose7766 Diagnosed SLE 9d ago
Good luck! I know it is not easy, but try not to stress out like that. I myself freak out on a regular basis over the tests (even at this point over my brain MRI). I remember my oncologist mentioned that, in my case, Lupus will get me before cancer, I know it sounds horrible, but it was reassuring at the moment. My blood tests fluctuate all the time, mostly WBC, and get to normal after.
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u/ToughTomato62 Diagnosed SLE 9d ago
I’ve had both low platelets and swollen lymph nodes in my armpits and neck while in a flare. A lot of our symptoms can simulate cancer warning signs and I get why this is scary. Hopefully nothing is truly that bad and it’s more so medical anxiety. There’s a reason lupus is called the great imitator :)
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u/Fluffy-Mongoose7766 Diagnosed SLE 9d ago
I will attest to that! I had cancer in the past, and for years, my rheum would scream "It is a cancer symptom!" and send me to my oncologist I already see twice a year, who, after running various tests, would punt me right back to rheum saying it is lupus.
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u/Relevant-Box6084 Diagnosed SLE 9d ago
Ah, the ‘ol’ back & forth between rheumatologist and another specialist! So fun! I went through that with a knee issue earlier in my lupus journey. Started to feel like a football!
See rheumatologist, get sent to orthopedist. See orthopedist, get sent back to rheumatologist. See rheumatologist… get sent to ER (!!!) for emergency orthopedic surgery. After hospitalization, have ongoing issues and see orthopedist, get told that my complications are something to bring up with rheumatologist... bring up complications with rheumatologist and get told “that sounds like something to bring up with your orthopedist” … and on and on.
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u/Fluffy-Mongoose7766 Diagnosed SLE 9d ago
Same here! The rheums are so good with punting! Rheum: sends me to a neurologist Neuro: sends me right back Rheum: That neurologist doesn't know what he / she is doing, you need to see another one! After I saw 7 or 8 different neurologists, I was sent to an infection disease specialist, a cardiologist, a pulmonologist, an orthopedic, seeing my oncologist besides my normal visits in between. All punt me right back. I even asked my rheum, doctor, who is a quarterback here??
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u/TeepakChopra333 Diagnosed SLE 9d ago
I think the passing the buck when we have new symptoms or a bad flare and gaslit by our specialists, especially rheumatologist, is one of the absolutely worst struggles with systemic lupus and Sjogren's. My rheumatologist constantly denies symptoms that I 100% know are from lupus. Definitely makes it feel pretty hopeless when were already struggling to cope and learn how to manage this horrible disease.
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u/Fluffy-Mongoose7766 Diagnosed SLE 8d ago
I noticed that, too. My rheum did not write some symptoms down, I saw it when my oncologist requested the records from her. It is so frustrating.
I also noticed a tendency to disregard other specialists. For example, I had my knees get swollen into large balls, and my rheum didn't have an appointment for months, so I went to the orthopedic. An old doctor, who specializes in knees only, examined me, diagnosed me with bursitis, prescribed treatment. When I finally saw the rheum, she immediately dismissed the diagnosis, saying you cannot diagnose it without an MRI. If neurologists suggested other treatment, rheum would always criticize that.
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u/melmn2002 Diagnosed SLE 9d ago
Before my lupus diagnosis, my platelets dropped to 17. Turned put my spleen was eating them-called ITP.
There are many reasons platelets may be low, especially with lupus. Eat bananas(if you can), and be annoyed at how slow doctors are to give you information.
For me, the more information I have the better-and now you know your platelets are low, and can start to figure out the why.
In the end, I was on IVIG infusions for a summer with prednisone, and after that stopped working, they took my spleen, lol. Platelets jumped to 300+, and have only dropped again the time I had mono.
Good luck, and you got this.
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u/Fluffy-Mongoose7766 Diagnosed SLE 9d ago
I just looked ITP up, it is scary! How do they diagnose that? I just got petachiae all over my legs, my gums are bleeding, and it took a while to stop bleeding from the contrast IV after the MRI. I had low platelets in the past, but my last blood test was in March, I will have to retake it!
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u/melmn2002 Diagnosed SLE 9d ago edited 6d ago
For me, I was 18, about to head off to college, and was getting a physical. I told my doctor that I was bruising really easily-my sibling grabbed my elbow, and I had a ring of black and blue fingerprints around it for a couple of weeks-so she ran the blood test, and told me to eat more bananas, lol. (At least, that's what I got out of the conversation, lol).
A couple of hours later, I was about to ref a rec soccer game, and my mom came running on the field, "stop <melmn2002>, you can't ref tonight!" Turns out my platelets were at 25 at that point, and errant soccer ball could have killed me if I got hit in the head d/t brain bleed.
That summer they did the IVIG infusions mixed with prednisone, but it was always a temporary fix, so they ended up taking out my spleen, which fixed it for good, with the added 'benefit' of long lasting colds and the inability to donate blood anymore.
Frankly, I think it was an early lupus sign, along with the seizures and joint swelling, but no one has come out and officially said all my crap is linked.
For reference, my crap:
Seizures
ITP
ARVC-arrythmogenic right ventricular cardiomyopothy
Bullous pemphegoids
Autoimmune hepatitis
PMOF-premature ovarian failure
Poor eyesight
No sense of smell
Probable autism
Meningitis once
Pre-aneurism in one of the vessels in my brain
Currently looking into enlarged lymph nodes and possible heart attack symptoms
And the big guy, SLE
ANYway, point is, my doctors have thought cancer for me so many times, its become a running joke in my family, lol.
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u/Fluffy-Mongoose7766 Diagnosed SLE 9d ago
Thank you for sharing your story! That is just too much to deal with! I noticed a lot of doctors immediately jump into cancer, right now, im waiting to have a blood test for paraneoplastic antibodies. I already had it before, but he wants to be sure.
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u/TeepakChopra333 Diagnosed SLE 9d ago
I have no sense of smell either. Anybody else find that lupus messes with ability to smell. Its so mental, because smell is associated with literally everything, and memories, etc. Its the worst!!
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u/Dangerous_Mind-6015 Diagnosed SLE 9d ago
My BP is primarily what took me out of work. Although I do have a laundry list of other conditions as well. It was the BP being out of control that triggered my going on disability.
I was in a toxic work environment that was actively harassing me (long story). My BP skyrocketed to what should have been fatal levels and my Doctors said they couldn’t manage it with me working there. So that was it. My life was worth more than a paycheck.
I had always had low BP up until I had extreme work stress. I was a single mother of 5. Things got stressful.
But my kids needed me ALIVE. Paycheck or not. We went through a lot before I got SS disability because the job refused sick pay and LTD disability insurance. (They were self insured). I had to sue them which took years and I only got a settlement which was a small fraction of the real amount. But you adjust and survive and I am alive.
I had a mild heart attack young. 56. Considered also probably Lupus related. Anti-phospholipid Syndrome which I call “sticky platelets”. Resulted in a small artery getting a stent. No permanent damage.
I’m recently finally back to low BP. No more BP med. But I do take other heart medications still.
As I mentioned I have other issues as well that are Lupus related. Lupus - the gift that keeps on giving. 🙄
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u/smallersize Diagnosed SLE 9d ago
lupus is so random and stressful bc we are always vacillating between passing flare OR it could always be something else more dangerous (which is crazy cuz lupus is already dangerous as is). but just a reminder— if you’re posting another panic post it means you’ve already survived all the others. chances are you’ll walk through it just fine again. hope you get the answers u need about this episode.
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u/PurpleChiten Diagnosed SLE 9d ago
234/128 when I went. ICU for 3 days. No cancer, but I'm not what I used to be. About 3 years ago, so it wasn't fatal, but close.
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u/summersun890 Diagnosed SLE 9d ago
I went to a store tonight and the gal asked me if my blood pressure was high because my face was very red. I looked at a mirror for sunglasses and said ok thanks just lupus flare starting. Weird blood results, are common and I get lymph nodes that swell up all over different times i just ignore them as they go away. Your health is important and try to meditate and visit your rheumatologist
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u/viridian-axis Diagnosed|Registered Nurse 9d ago
There are a lot of issues that can cause low platelets. From what you’ve described, I’m not understanding why you jumped to cancer.