Hi everyone.
Just after a bit of advise.
Does anyone have a high pulse?
I have had it taken a few times recently and each time it's over 120bpm.
I have an ecg tomorrow.
I am on rituximab and prednisilone 7.5mg.
I'm worried encase it's lupus causing it.
Recently had a chest infection but a lot better now and pulse still high 😔
Hi Joanne
I think we spoke before about our heart rates !!
I put a lot of it down to the meds and anxiety
Reading your posts you are very similar to me
I got that fed up with my high heart rate I begged Drs for beta blockers they really do work
I worry a lot of the effect of taking them on my heart in the future but then again I worry about everything!!
I read your posts you have rixtamub ?
I have just been informed I may this as the myco is causing bloods to go too low
Interesting reading ur posts
Best thing to do is stop counting ur pulse it makes it faster believe me!! and talk about ur concerns with your Drs
You are not alone
Sending hugs xxxx
Just to let u know my ecg showed my pulse at 160
That was pure nerves!!! So relax as much as you can
Thank you for your reply.
I keep thinking that as soon as I know they are going to take it it makes me more anxious and it goes up! Will see what the ecg says tomorrow, will try and stay calm.
Rituximab has worked really well for me with regards to the lupus but had a lot of infections this past year. Just had my last infusion.
All these meds are so worrying 😢 So many side effects.
Hugs back to you. Xx
Let us know how u get on
It takes minutes and is painless
I feel exactly the same about the meds they just as bad as the illness at times
What can we do but hope for the best and have trust in Drs
It's good to know we are all in the same boat on here because unless u go through a illness like this it's so hard to understand
Xx
I will do, thank you.
I have decided to have a little break from it all to see how it goes. Rituximab is meant to do something after the 6th infusion which I have had. Just been as ill with infections rather than the lupus. It's all a big juggling act isn't it?
Yeah it's a comfort to know we are not alone and have people to talk to.
Jo xx
Hi Joanne
A younger and vvvv dear friend of mine has early onset lupus & is treated at my university hospital where she is on ritux I believe
She has had cardiac issues, all year, at least I think...including, I believe, high pulse. So her gp & eventually cardiology have been investigating this...and I think the treatments are similar to poodlegal's
Sorry to be a bit vague, but your post & poodlegal's reply are ringing bells for me
😘🍀😘🍀😘 coco
Hi Barnclown.
Thank you for your reply.
I do wonder if it's the rituximab having an effect. Will call the hospital for some advice.
Jo
Yep mine is high. It gets written off as FATPPLGONNAFAT and I don't get treatment. I have found in deficient in magnesium which can contribute to blood pressure. Also, if you're in pain, blood pressure will go up. Consider getting magnesium tested and work on pain management.
That's interesting about the magnesium, will look into that. Thank you
Jo
oh my, I am so glad you posted this! early on, when I knew something wasn't right with me one of the first things I noticed was a constantly elevated pulse. I was very athletic at time, so that's the reverse of what should be happening. Even when fully relaxed and almost asleep, I was clocking in at 85-88. I also noticed that my cardio and lung function wasn't as good as before. My pulse still won't drop below 79 (I'm used to being around 60 or lower), but seems to be holding steady now that I am being treated. I would DEFINITELY mention this to your doc. Especially if you have a history of a lower pulse.
It's such a worry isn't it? I had my pulse taken at the hospital today before I had some dentist work done and the nurse said you need to see a doctor about your pulse being so high, she said even if I am anxious it shouldn't be that high. I'm young and relatively fit, have a good low blood pressure, just don't get it!
Starting to think it's either the lupus itself or one of the medicines.
Will see what the ecg says then contact my consultant.
I'm glad yours has settled down again.
Jo
Interesting, b/c I was always a low blood pressure person too. It drove me nuts for months, as I was in the middle of training for a race and ended up cancelling b/c mu pulse just wouldn't "recover". That was also exactly the time I developed my first face rash and fatigue. A few other symptoms popped up during this time.
Hopefully your docs are coordinating and you can see both a Rheum and a Cardiologist, even if just for a quick consult. I tracked all my stuff with a Fit Bit and once I showed them the cardio stuff + pics of the rash, it stopped everyone in their tracks. For some reason, docs LOVE their graphs.
Also (and I know this is terrible, but I couldn't not test it out), I took some anti-anxiety medicine and monitored my HR for a day. I relaxed and took it easy. The rate didn't drop at all and that's when I knew something about my cardio had changed.
DM if you'd like. I'm always interested in chatting with people who were into sports or really active and the got "whopped" by weird symptoms. Big life change and lots of questions!
What a great idea tracking it with the fit bit!
Going to call my consultant after I've had the ecg and get an appointment with him.
Mine doesn't seem to go down either. Just come up to bed so was going to try again in a bit when I'm sleepy but I bet it doesn't change!
Thank you so much.
Jo
Just to add I'm sick of medical professionals making flippent comments about people's pulse rates!!!
They are not trained cardiologists
I've had all that !! And it made me ten times worse
A nurse couldn't believe how fast my pulse was once and made a stupid comment I said to her you really should think about your patients state of mind before saying such things
When they say it can't be nerves remember that programme with Vernon Kay ? A 1000 heart beats ?? The game show where people wore heart monitors !!
There hearts went crazy when under pressure so that to me hearts can beat very fast when nervous
A cardiologist said to me instantly ur heart is 160 because u are nervous
I repeated the test it dropped to 118 after reassurance from her xx
Yeah i know. Makes you really worry something is really wrong.
I never take my own pulse but I thought I would tonight when I got back from the hospital and see if it would be lower when I'm just relaxing at home. I'm sure I could feel it getting faster coz I was thinking about it 😂🙈 it was still 100 whilst resting!
have your ecg tell the person doing it how nervous u feel try getting there early so u can sit for a bit before it
Then maybe talk to ur gp about ur fears and ask for a 24 hr holter
That gives a true reading of your heart rate throughout the day and night
But most of all try not to obsess about the rate and what Google or nurses say is the normal rate!!!!! Xx
Does your pulse become more elevated when you stand up? It's just that POTS Syndrome is linked to Lupus, as is IST (inappropriate sinus tachycardia). Lots of my family have primary Lupus and secondary POTS or IST. Both are treated well with lifestyle changes and a small dose of bisoprolol beta blocker. Just a thought.
I don't know if it gets higher when I stand up, will test it myself at home and see.
I've never heard of that, thank you, will read up on it.
Jo
I have always had a really high pulse but not that high. Did your Dr have any concerns?
The gp sent me to hospital because of it two weeks ago and because I had chest pain they thought it was a blood clot, hospital said it was the chest infection and pleurisy that I had at the time. Went back to the gp for something else last week and she took it again and still high so she made an appointment for another ecg for today. Going to contact my consultant after I get the results today.
Jo
Hi Joanne
Just want to wish you luck for your ECG . Hope you get sorted soon. X
Thank you so much misty14
Jo
Keep us posted Joanne. X
I discovered my high resting rate and also an occasional absent pulse during a well woman clinic. After an ECG and a trip to the cardiologist, it was diagnosed as atrial fibrillation and sinus arrythmia, but the medics decided not to treat it with drugs as they said that sometimes this can throw up other things! The cardio also said that hydroxychloroquine can cause heart problems...nice to know! I also take methotrexate, but so long as they keep an eye on me, I have decided not to worry about it. My normal resting pulse is always 100 or above.... Heigh Ho, isn't life fun!! X
Hi Musicteach
As long as they will keep an eye on you as my Dad's been diagnosed with atrial fribulation and high blood pressure albeit mildly thank goodness. He now finds himself on five different tablets one of which is warfarin and treatment has improved him !.. I am surprised cardiology decided not to treat you and hope you continue to make good progress. X
I would hate to have to take more medication for it 😔
I think at the time they put it down to the chest infection and pleurisy but now that's better it's still high. 😢
His somewhat disconcerting response was that they were mostly nocturnal and that sometimes the medication can lead to the need for a pacemaker. I wasn't too aware of it...I know I had ectopics in the past, so have just lived with it and was unaware that they had increased. I have a list of symptoms to keep an eye out for and the GP will monitor it, so I think it's all ok....I sometimes feel that I am a missing piece in a jigsaw and await being found! My daughter is on warfarin, but has had a few issues with it....hoping your health is stable, and that you are enjoying your work with the CAB? Xxxx
I have just read about hydrodroxy can cause a high pulse, have been on it for years now!
Will see what happens today at the ecg, definitely going to get an appointment with my consultant to see what he thinks.
Thank you for your reply
Jo x
I have always had a fast pulse, but drugs seem to make it far worse so don't take any.
Had the ecg, pulse still high today. Saw the gp who is thinking about giving me a beta blocker, he's taken various blood tests and I have to go back Friday. Waiting for my consultant to call me back also. Feeling lousy, exhausted, head ache and dizzy which the doctor said would be normal as my heart is racing 😢 So worried and upset.
Jo
Your Dr didn't say anything about the prednisolone?
I had to stop steroids last December because of fast heart rate, even on beta blockers. But that's my crazy heart...
I hope your test comes fine 
breathe deep, stay away from coffee and caffeinated drinks... oh I sound like a grandmother sorry LOL
Hello Jo,
My heart rate has always been on the high side, but when I first developed autoimmune problems, it went to over 100bpm at rest. After a trial of B blockers and ACE inhibitors, I then was diagnosed with UCTD and was started on hydroxycholoroquine and prednisolone.
At present, the cardiology opinion on side of my illness is still vague. For what it is worth, my suspicion is that my raised heart rate was due to lung inflammation (I have a diagnosis of Interstitial Lung Disease secondary to the UCTD).
The plus side is that I am now on B blockers and although my heart rate is still elevated, my cardiologist is happy that nothing sinister is going on. More importantly, I seem to have come through the period of feeling unwell with it, and my body seems to have adjusted so that I don't get the particularly unpleasant postural tachycardia that I first presented with.
As you say, it's a worrying thing to have, but I guess it doesn't have to turn out badly. Hope things work out well for you
X
The more you worry the more your pulse will be high - try and relax hun. 😁😁
I have the very high heart rate (just resting it's around 100 bpm). I did see a cardiologist and it all checked out ok for me. She calls it IST, which is the "good" kind. It can be due to your thyroid or Lupus. Mine is likely both.
Keep ur chin up Jo xxxx
Just thought I'd ask as I had the same issue and it was just luck my heart consultant said to just have my thyroid tested by GP for hyperthyroidism which causes very high heart rate , sweating and feeling hot all the time and eventually weight loss etc.
I was also going through a flare attacking lots of organs at the time.
Just thought it was worth mentioning.
A GP can arrange this test easily yet my GP fobbed me off at first putting it down to stress even though my cardio consultant said get your gp to check it just in case. It was eventually done whilst I was admitted in hospital in the end by a different consultant.
I had very high levels of hyperthyroidism and was treated with thyroid drugs until it seemed to calm down again. They think it could of been my lupus flare causing a type of thyroiditis as it stopped after a few months and all levels back to normal after treatment started , felt amazing , heart rate normal within hrs after first tablet.
Never know so thought Id mention it .
Good luck x
Hi, thank you so much for your reply. I have been tested for that, get the results tomorrow. They have put me on beta blockers until Friday and was going to do a cardiac referral after seeing the test results. Beta blockers have helped so much.
Will keep you posted on the results.
Jo
They keep you on betablockers anyway with the thyroid drugs if it is hyperthyroid . Then take you off them once the drugs start working. so thats good your already on them wether its that problem or not as its a no win situation as hyperthyroid hormones causes fast heartrate and anxiety and the anxiety makes heartrate worse.
Like a vicious circle. I never realised how many organs lupus can get too.
Good luck let me know if it was your thyroid id be interested.
Mellisa 🙂
Thank you.
I will let you know what the results say. The beta blockers have helped so much! Feel a lot better. 😁
Admitted to hospital for suspected AAA 
High cholesterol 
High potassium level and lupus nephritis
High risk letter
