Do other vasculitis patients check their own blood pressure?

Because of my cerebral vasculitis the consultant and GP want to keep an eye on my blood pressure. It's usually checked by nurses at the hospital when I'm there each month. But I have white coat syndrome, so don't get a reliable reading when it's taken in such a setting, or in the GP's surgery. So we've agreed that I check it regularly at home. If it goes consistently above 140/90 (either figure too high) I would have to take more pills to bring it down.

I auto email myself a reminder each week to check my blood pressure at home. I have a machine I bought myself, and keep a record in a spreadsheet.

Do others do this? My blood pressure has crept up over the years, mainly due to weight gain from long-term steroid use (14 years and counting). But it's still within acceptable normal range, for now.

6 Replies

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  • Yes I do. It was suggested I take my own blood pressure and record it to take to my clinic visits. I am ANCA positive - WG - have stage 4 kidney failure as a result and my kidneys are leaking protein causing both high blood pressure and high cholesterol levels. At it's highest my BP was157/94.

    Both are coming down now I'm happy to say at 109/78 for blood pressure and 6.2 cholesterol down from a disturbing 18 :-o thanks to two lots of blood pressure tablets and one for cholesterol :-)

    JacquiM

  • I checked my own BP every week when I was on BP meds. Then, when I stopped taking them I stopped measuring after a couple of months when all appeared normal.

    The BP measurements taken when I saw the consultant were doing fine. A GP check in my medication showed that my BP had shot up 190/90. Like Viv they thought it might be white coat syndrome (although I didn't think so because over eight years it hadn't happened before). So for two weeks I checked the pressures at home - 3 times in the morning and 3 at night. It wasn't white coat syndrome. I'm now taking Amlodopine (they also found my cholesterol raised - so Simvastatin to add to the rest).

    BP now at acceptable levels but I check it every week. Better safe than sorry.

    Pat

  • I have cerebral vasculitis, 18 yrs never has my consultant checked my b/p at review clinics.

    my raised b/p was picked up on a visit to the dr, because I was hetting tingling and weakness in my left arm.

    It is high in the right arm and very low in the left. After weird and wonderful tests it was diagnosed that I have a blockage in an atrery in the clavical area that supplies the left arm.

    They told me it was nothing to do with the vasculitis.

    Now I only have the b/p done in the right arm and on medication for it which, is down to normal levels. The dr told me I will be on it for life.

    They say the the operation is too risky to relieve the blockage and at this stage they will leave it but, if it gets worse to get the g/p to refer me back.

    Cor we folk with vasculitis do have many complications to cope with.

  • I too have Cerebral vasculitis and very high blood pressure. My BP is checked weekly at the GP's and i also check daily at home when the readings are very high and keep a record for the GP and specialist. Having spent most of the summer in hospital my BP was checked twice daily . It has only become evident of the high BP issue since i commenced my current flare up. My highest reading being 185/110 and regularly 150's/90's.... Both the consultant and GP agree that they will not currently prescribe any meds for this as ironically other than the CNSV my overall fitness is good thanks to my job and it would just be adding another variable to the equation drugwise. Having said that i have been unable to work since May of this year so not as fit as i would like. Previous to this condition i was always text book BP 120/80.... Guess its just something else to enter on the med report. Oh the joys of CNSV... eh?

  • Hello, I have thought about this question and thought just I'd add my experience with a high BP. Whilst I was recently hospitalised at the QE Birmingham my BP was high (stress I am sure) but it was very variable and at times was very low ie 105/60 so do these modern machines work?? When I was a nurse we had sphygnomonometers (I know I've spelt it wrong) however I am sure with all the drugs we all have to take could cause an issue with BP...so that is a bit scary...however that visit to Hospital reassured me that I don't always have a high BP...maybe its labile...but I do know that it can be consistently high with various organ damage which I don't have at the moment thanks to Cell-Cept (I was in Hosp with copious haemoptysis which the Docs didn't think was linked to my WG/GPA)

  • Thanks everyone for all the replies.

    Sheila, yes the machines are apparently reliable. Both the consultant (a vascular specialist) and my GP have told me they are as good as the methods the hospital use. And it makes keeping an eye on your blood pressure at home very easy. I wrap the cuff/sleeve around my arm, and sit on the sofa while it takes my blood pressure. Easy!

    BooBoo39, interesting that your doctors won't prescribe hypertension meds if needed. I'm very heavy cos of long-term steroid use, so am not what anyone would call healthy. But my consultant says that if my blood pressure goes regularly over a certain level we must treat it, because it would greatly increase the chance of me having more strokes from the cerebral vasculitis. So worth taking the drugs for. And I'm already on 30+ prescribed tablets a day anyway. What difference would a few more make!

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