Morning everyone. Does anyone else have low blood pressure and is it connected to Lupus or Sjogrens? I often wake in the night feeling very dizzy and I'll. So today I took my BP soon after waking and it was 89/53.
As it's taken 4 years to be diagnosed, with an extremely uninterested GP, my low blood pressure has always been just one of the many strange symptoms that the GP has shrugged her shoulders at. The lowest it's ever been is 87/44.
I'd really appreciate knowing if anyone else has this issue.
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HRW2017
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I have always had low blood pressure, and it runs in my family. I can't think of any reason to connect it to any of my auto immune problems. Whenever the pressure is taken there is usually a muttered "good" or I have to tell them low is normal for me. The only problem it causes at the moment is that none of the meds available for my Raynaud's can be used.
Me Too. I've learned to self manage a similar version of relatively low BP over the years. Usually my stats are just within the low end of "normal" range, but I can dip below range easily with the least provocation any old time
There are many causes of low BP. My understanding is that the main underlying cause in my case is ehlers danlos vascular type hypermobility... we have collagen issues affecting everything including our blood vessels, causing laxity which makes maintaining more normal blood pressure levels a challenge
Like lupiknits, I respond badly to meds for raynauds, but this is partly because my raynauds is simultaneous with the burning condition erythromelalgia (both are vascular peripheral disorders) which complicates treatment as much as my relatively low BP does 😏. My impression is that this raynauds & erythromelalgia are due to my infant onset lupus. As is my small vessel vasculitis. All these conditions inevitably influence my blood pressure function
I'm 63 and it's taken decades for medics to figure this much out about my case. Meanwhile I've tried to self help as conscientiously as I can 😉 while encouraging my medics to explain my health stuff
Hope something in there is useful...keep asking questions: your medics need to be aware of these BP signs & symptoms...they should help you understand what's underlying these
Thank you Lupiknits and Barnclown. I've always had a low-ish BP but since being ill 4 years ago, it tends to get very low when I'm having a flare up. Once I'm on the steroids it goes up to my normal levels again.
I've only recently had the Lupus/Sjogrens diagnosis and so have been put on hydroxychloroquin and taken off the steroids (which I was being given by GP despite no diagnosis). But my BP is just getting lower and lower again. I just worry how low it has to go before it becomes dangerous.
You know your body better than anyone else. You're logging your BP readings. I think you'll do best to take your log to both your gp & rheumatologist asap
When I was wondering pretty much the same thing, I talked to my gp right away. She said my BP levels are "normal" for me, but she did a 14 or 48 hour ambulatory ECG (I think it was called) and told me only "normal" abnormalities appeared in the results. 😏. So I studied BP info on various official websites. And learned more about how my version of immune dysfunction & connective tissue disorder affects my BP. Now I just keep a watch on it...like you, I think my daily combined therapy meds are helping even my BP out
Hydroxychloroquine can cause low blood pressure for some people it's happened to me I tried taking it for Whipples disease and it caused me to have low blood pressure and electrical conduction issues with my heart as well. It's not a very common side effect but does and can happen. I was only taking 100mgs it's assumed that this infection has done extensive damage to all my organs including my heart. It's also given me dysautonomia which is why I have the extreme hypersensitivity to adrenergic agonists like epi, robinul, lidocaine, novicane, benadryl, and any caffeine in general. On a side note it has subsided some of my horrible anxiety even though a side effect is nervousness and anxiety. Hope this helps you. I was a respiratory therapist for 10yrs until getting severely ill from this rare bacterial infection.
I've just checked on the NHS site for info about low blood pressure. True enough, under 90/60 is classed as low. There are tips there about how to self help . It's interesting that the NHS don't treat low BP much, unless you are bleeding out in and emergency. I understand that other countries will offer treatment for people with a BP above 90/60. I'd say it's worth getting back to your GO about it.
i was going to say you need to be a bit more insistent. Yes, low BP is perceived to be "a good thing" but as we age it isn't! If it is too low the brain may not be getting a good enough blood supply and that, long term, leads to problems. A recent study found that elderly patients who had dizzy spells when they stood up were more likely to later go on to develop dementia of some sort. They think it is due to repeated episodes of poor blood flow in the brain.
It's true, the UK seems awfully blasee about low BP - they realise just how risky it can be everywhere else! I had very low BP after baby no 2 was born - my German GP told me to have a glass of prosecco rather than a cup of tea in the afternoons, said it was better than any pills he could offer. Worked for me!
Perfect, I'm very happy with a prescription for Prosecco every day 😃.
I also read about the link with dementia and low BP - which didn't make for good reading as I get dizzy on standing all the time and at 50 I'm not exactly a spring chicken!
So, I think I'll start recording readings a bit more efficiently for my next visit to the rheumy or GP (and enjoy a little tipple in the meantime).
I also have low blood pressure. When I went to the pain clinic. I saw a brilliant doctor who also had a autoimmune disease. She had looked into it and lots of people who have autoimmune diseases have low blood pressure and slightly high heart rate. It would seem to go
As for recording yes I have just finished recording everything temp, blood pressure, heart rate, how I'm feeling that day and what I eat. It has helped me to find patterns and change some things I eat and do. So it's well worth the trouble. At least you can go with information on how you are doing everyday
My meds for raynaulds Nifedipine, were direct link from being someone with slightly high blood pressure to one with slightly low blood pressure. Cardiology recognise this and are not at all concerened.
I'm only on hydroxychloroquin and only very recently diagnosed. I woke feeling very dizzy this morning and my BP was 81/47 - my lowest ever.
I'm reluctant to go to the GP as after 4 years of many symptoms, the low BP being just 1 of them, I've been made to feel very much like a hypochondriac.
I went privately to the rheumatologist who diagnosed SLE/Sjogrens. I'm now on NHS waiting list to see him again in June.
Do you have an email address for your consultant or a telephone number for a rheumatology/lupus nurse in their clinic? It may be best to try to contact them and ask them about it. They may have some advice or bring forward your appointment if they feel it is important that you are seen earlier.
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I'll do some more researching too. 
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