APS and BP

[Salstar]

I have been placed on two medications for bp. However, when it is high and I rest, elevate feet, it can go up within the hour. If I walk my dog slowly, it goes down. I have been told bp goes up with exercise so should rest, could it be thick blood st that time as movement makes it go down? I told Doctor and she said that is strange. This has happened several times though. Anyone else had this experience please?

[MaryF Administrator]

Have you been investigated for POTs? MaryF

[GinaD]

Are you still having high calcium issues? Ca deposits in blood vessels can raise BP. Diet can sometimes treat Ca as well as magnesium or potassium , ie, electrolyte, deficiencies which can result in erratic BP. BUT it is crucial to know what your nutition numbers are as taking a supplement that raises or lowers one, can cause others to rise or fall to unhealthy levels. As Mary asked, POTs can be associated with your symptoms and often is result of nutrient/electrolyte imbalance. But when you read “ imbalance” again do not assume you should self treat with electrolyte supplements! You must consult with a doctor who knows what to test for and how to treat!

[Ray46]

BP typically goes up when you exercise, but if you don't exercise it eventually goes up a lot more.

Labile (doctor speak for variable) BP is common in APS, as is high BP. I am on four BP meds, three at max dose. My BP can vary by 50mm (on the systolic) while the doctor is measuring it (the old way with watch and stethoscope) - doctor actually asked "what are you doing" (nothing actually).

When taking BP yourself make sure you use consistent protocol so your results are comparable, usual recommendation is seated at rest for a few mins, and also take several readings - kidney consultant told me to use "best of 3".

Arrange with your doctor to try some of the different BP meds and different classes to see if anything helps with the variability - I have found that one of the calcium channel blockers reduced the variability a lot (another CCB just gave me awful side effects though). As one consultant told me:

* there are six standard classes of BP meds and multiple drugs in each class

* you need to find the combination that works right for _you_

* change one thing at a time and give each change a few months to work (or not)

* this is a long term project

[Lure2]

Hi Salstar,

Have you got a diagnose of APS? Not other autoimmun illnesses like SLE so far?

As Ray says high bloodpressure goes with APS.

Before I was anticoagulated with Warfarin my BP was exstremely high even on 3 different thinners. I am still on those BP-thinners but now when I am properly anticoagulated my BP is ok. My Cardiologist wants me on an INR of 4.0.

With this sticky blood we need exercise and as Ray says, it is dangerous for our lung- and heart if we do not exercise every day.

I wonder if you have got a Specialist of your APS who could give you a referral to a Endocrinoligist who usually are good on things like BP. I understand that you also have a machine to test your BP. Make notes every time you do.

Are you on Warfarin for your APS? How old are you?

Best wishes from Kerstin in Stockholm

[Salstar in reply to Lure2]

Hello Kerstin, Thank you for replying. Was told I had APS I have had two TIA's and I am on Clodipregel as cannot take warfarin. I am 56 my first INR test was a few weeks ago and was 0.4, if Inremember correctly. Best wishes Sally

[Wittycjt in reply to Salstar]

can you take fragmin/ lovenox? Cindy

[Lure2 in reply to Salstar]

Hi Salstar,

Who told you you had APS? Ask for a copy of the bloodtests they have done.

May i ask why you can not take Warfarin?

Kerstin

[Lure2 in reply to Lure2]

The INR is always around 1.0 when you are not on Warfarin.

Can you tell me why you can not take Warfarin? Who took the bloodtests and told you that you had a diagnose of HS/APS?

Kerstin

[Lure2 in reply to Lure2]

I now read that 2 years ago APsnotFab suggested that you should ask your GP for a referral to Guys Lupus Clinic. How did that go?

Kerstin

[Wittycjt in reply to Lure2]

I’ve not ever had a BP issue even with my strokes BP was always perfect, good to know, thanks