High Blood Pressure Now: One thing I... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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High Blood Pressure Now


One thing I gota say is my BP thru both of my heart surgeries always perfect! Maybe once or twice Borderline! My nasty doc can back from vacation and was very nice! I got the migraine the day I had cyst removed from my eye! He said that eyes r very sensitive, my eyes anyway to surgery! Maybe it was a blessing in disguise because now I know, like my sister Lynn (Nanny 23) I have hi BP as did both of out parents! I wonder if hi BP has anything to do with APS, being in Sjogrens bad flare! Can't swallow, sores on roof of my throats and the like! Is it bad if u miss a dose of the Lovenox shots here n there? Sometimes I miss them! I forget if I took or not! My memory seems to be getting very poorly! I may do something to tell me if I tuk shot! They don't hurt me at all cuz my stomach numb from 6 stomach surgeries! Therefore I cant tell if I tuk or not! I look forward to March 12th wen I see Rheumatologist! My doc told me to tell all my autoimmune docs that I have hi BP! He said may have something to do with that! Do u think it does? I wish Y'all the best of health and happiness in your lives and Y'all get a break from what we go through everyday!!! GODSPEED

17 Replies

Hiya, not saying we are the same however my APS was originally investigated due to high blood pressure. Despite being medicated for years it remained still remained borderline high. I had CAPS 6 years ago & this led to further kidney damage (already had some from original APS some 18 years prior) my kidney function had improved massively although again my BP didn’t really change. A GP picked this up, suggested on advice from kidney consultant that I try a new med & bingo my BP has been brilliant since then. I will add I’ve always been fit & healthy as much as possible throughout. I’ve kept my weight down, ate well & worked hard to get/keep fit & strong. Consultant agreed recently there’s nothing I could do personally to improve my BP as it’s cause is medical. Sorry bit long!

Debbweb01 in reply to lloydyuk

You never need to apologize to me for anything! I just love long posts! I take care of my hubby with cancer (cured), but has Alzheimer's! I also have a mentally challenged stepson that I take care of! I lost my left leg to APS and after 15 years of being under a Hemotologist care for another rare blood disease called Polycythemia Vera, they found out I had APS! My Hemotologist blew me off today which is very unusual for him! He said he didn't think hi BP had anything to do with APS, but I know much more in my little pinky than he knows in his whole body about APS!!! I plan on telling him that too! He welcomes information and I must be nice! My son use to take me for blood letting for My Polycythemia! A thick blood disease! The nurses couldn't understand why my blood looked like sludge! Well I was lucky to have 2 thick rare blood diseases! Polycythemia is a form of cancer and Thank God I'm in remission! My son passed 12 years ago at the age of 24 and he came to the hospital Christmas week to visit me and pay respects for the loss of my Jesse! I'll never forget that! He passed 3 weeks b4 Christmas and on Christmas Day I got very sick! My older sister made me go go to Hosp Igor Emergency stomach surgery! In five years I had five stomach surgeries! Then one more last one 3 years ago! I guess people with APS, Sjogrens, and RA get tummy problems! I had Juvenile RA as a young child! My Hemotologist said I had APS MY whole life! My first Pulmonary Embolism was at age 24! Before Aps was even discovered and many leg clots thereafter! Phlebitis! So my whole life I've live with doctors telling me it was all in my head!!! Fun fun fun! I've adjusted very well to my leg! I run I dance and I go to concerts at big stadiums! I'm a fighter and a positive attitude! Not akwaytho I learned to be as I aged! Now I'm sorry this is so long! It's just I've never met you and wanted to say hi!!!

lloydyuk in reply to Debbweb01

That’s a great post. Brilliant to hear your attitude is so positive despite your difficulties. I truly believe life is as good as you decide it to be regardless of our personal situation. We’re all capable of something better no matter where we start from. I could easily of died, I didn’t & im very grateful for that. I suffered a brain injury & I’m now Addisonian...I love my lide more now as these things taught me what really matters & therefore what doesn’t. It’s all a choice and down to our perspective of how we choose to see the world...either a survivor or a victim essentially.

KellyInTexasAdministrator in reply to lloydyuk

We don’t hear enough from you on here!


Why thank you ma’am. I do look in & read a fair bit.

KellyInTexasAdministrator in reply to lloydyuk

I’d like your help... may I pm you?

Yes sure...not sure how much I can help? I’ll do my best tho

Hi there Debbweb01 .I don't have high blood pressure but memory rubbish at times.One trick I have is to put everything on my calendar and that includes ages of grandchildren else I forget. Write the day you inject Lovenox and give a red tick when taken .This will help you😊

Hi Debbie!

This is a strange illness in many ways that will hide away. For some of us I think the high bloodpressure is a result of APS, me included. Erratic it has been even after some bp-drugs but now with drugs and a rather stable INR of 4.0 my Cardiolog is satisfied. I have also heart-lung/issues (due to APS) so therefor he is careful to keep my bloodpressure down.

Have you drops for your dry eyes? Here they cost a fortune that is bad. Also you can try oil for dry mouth but guess you know that already. My Rheumatologist suggested that and I guess she meant usual olive-oil. I have not got a diagnose of Sjögrens (not yet and perhaps never will). Here in Stockholm it is windy today but the sun is shining and spring is soon here from remarks about springflowers in the nature.

Good luck on March 12 and try to get your bloodpressure down! Here it is windy today but soon spring


Hang in there Debb! I have had embarassingly often times when I don't remember if I did or did not take my warfarin. So, I purchased one of those "day-of-week" labeled pill holder. I fill all 8 slots when empty. I wish there was some container-thingee which you could use for injections. But, maybe just ticks on a calandar would help. It is embarassingly how our disease effecte memory!


Ray46 in reply to GinaD

8 slots? Now you got me worried, could have sworn there were 7 days in a week.

KellyInTexasAdministrator in reply to Ray46

Look at Anabox for example. “ as required.”

The 8th slot is labeled " 8th day" That way the kit is symmetrical and it saves me from loading it as often.


Can you also see your GP for some advice so you can have this more regularly monitored? MaryF

I went yesterday and he said to call allny autoimmune docs and let them know cuz there cud b a correlation between the hi BP and APS or one of my diseases! Just I bad flare with Sjogrens!!! Now hi BP! I'm afraid if I keep up at pace I'm going at with my Husband and Keith and me having one leg is taking its toll on me! Stan is getting worse everyday! I may have to make important decisions soon based on my health! I can't even think of it, but b4 he was bad, he told me when it's time he want to b with his Marine Buddies! I definitely will honor that Promise! I will go on waiting list, but Stan was in Marines with this guy Tom, and his son is the Director of VA(Veterans Affairs) here in Ling Usland, New York! It's always good to know someone in high places!!! I just don't understand why headache won't go away! Is there a time limit I shud put in place for a brain MRI??? I feel like I have something in there! I feel weird, NIT DEBBIE! A fumbling old fool who says weird words and is way off balance! Being off balance can come from Sjogrens! The only docs that have helped me thru this flat are my Dentist and Oral Surgeon! They seem to know and understand it the most! Most other doctors either don't believe it's a real disease or just know so little about it that they really just blow me off like my Hemotologist did Uesterday! Thx for ur replies and well informed input!!! Godspeed

Deb, use your phone, thats what i do. For instance, tonight, being , weds.... i will take my shot, then go straight to my phone and text myself: weds 9p shot done left side... always use a or p if dosing every twelve hours and which side until you get in a habit of one side or the other in the am and pm: i always inject my rt side in the am and left side in the pm....it works you just have to get in the habit of doing it. That way if you cant remember you just look at your texts, best regards, Cindy

KellyInTexasAdministrator in reply to Wittycjt

That’s a good idea, Cindy.

Another thought:

You can always use the , notes “ function also. It’s a default app. On an iPhone it looks like a yellow legal tablet. That way you can have a running list and see every day at a glance, or throw away.

That way you can pull it up very easily to show a doctor. All one place, just like writing in a piece of note book paper.

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