It seems that there is no end to the trouble that keeps popping up for me since I got PMR 2 1/2 to 3 years ago. Now after 2 years of fairly low dose prednisone (mostly around 5 mg), my normally well behaved blood pressure is skyrocketing out of control. 6 months ago I had a few readings above 140/90, but usually well below. I noticed that, but no big concern. Now, starting about 8 weeks ago, I’ve had many readings above that, and in spite of my doctor prescribing beta blocker and yesterday adding lisinopril, I’m having consistently very high readings in the 170/100 range. If this was due to the usual aging process, I would expect a more gradual increase over time (I’m 63). I’m wondering what is going wrong with my body now that would cause this. Could it be worsening vasculitis?
About the time I first got PMR symptoms, I developed parasthesias in my hands and feet, that spread to legs, arms, and torso along with other signs of neuropathy, including symptoms of autonomic neuropathy. My migraine headaches came back after a 7 year hiatus. I’ve had several months long episodes of extreme insomnia...less than 2-3 hours sleep per night (even before taking prednisone). When I drop below a certain level of prednisone, 5.5 mg currently, I have severe bladder pain and urgency. The steroids have given me various types of gastritis and GERD, and I’ve put on 10 pounds in spite of my best efforts to avoid it. I’ve also had episodes of arrhythmia, though lately, thankfully that’s calmed down.
PMRpro has mentioned that there are different varieties of PMR. I seem to have the one that’s aging me on fast-forward, making me take handfuls of drugs daily, and generally destroying my health. This latest blood pressure issue is really a bummer! Has anyone else experience it?
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That is a big heap of trouble, does your doctor lay it all at Prednisalone ‘s door. I have hypertension treated with Atenolol, it still remains on the high side. Odd about the bladder thing, I thought Pred caused that, plus calcium supplements. Is the doctor keen for you to take Methotrexate. I am getting pressure for less side effects.
It could be associated with the use of steroids but you would hope the BP medication would lower it.
I have also had this spike in BP , but also a spike in heart rate to 120+, especially on moving positions of late , and my Specialist referred me straight away to Cardiology for testing despite a unremarkable ECG , to investigate if the cause is Pots , hypertension or something else.
Did you GP tell you what your heart rate was at these tests as well?
They are often not as concerned by these spikes as we are unless it involves a high heart rate too , over 100bpm , this is non as inappropriate sinus tachycardia , until they find the cause.
I have been to Cardiology , and I now have a Echocardiogram and 72 hour BP test to do , and possibly a tilt table test to come to find out the cause.
Your GP cannot be sure that your results are totally caused by PMR or Pred use , especially as you have had arythmias in the past.
If you are concerned yourself my opinion is that you should return to the GP , have it checked again , and politely but firmly request that they refer you to Cardiology because you are concerned about these changes after your previous history , especially with your increase in headaches. This definitely seems to be something that deserves further investigation.
Sorry for your experience so far , some of us seem to get it all in Spades , but let's hope that it will just make us stronger in the end.
Sorry you’re have heart type issues. So far I’ve not had tachycardia, just faster than normal sometimes during the arrhythmia. Had normal ekg. We think those may have been a side effect from a drug. I haven’t had that for a few months, hope it stays away. Hope I don’t need referral, but I guess it’s possible.
Don't think if a referral as a a bad thing , getting one is a good thing , that why it's worth asking.
You get to see a specialist who knows more about the issue than your standard GP does , and if they believe tests are required , it's good because it can just as easily rule out problems as find them , so it will put your mind at rest.
If they believe it is just drug induced they can also work with you and your GP to work out changes in drugs or lifestyle / diet changes that will reduce your issues.
It could just mean that you need a different type of beta blocker or an increased does that a Specialist is more able to assess and suggest quickly. Some of the morexreluable drugs unfortunately can only before prescribed with consultant approval.
I hope things go better for you soon , and that you can find a way to relax and find the triggers that promote your increased BP , take care , Bee xx
Thanks, Bee. Probably a good idea, but the way things have been going for for me lately, I’ve had some rotten luck. Not even all health related. My beautiful cat who was only 7 got cancer and died last September, and other sad stuff like that. I’m not thinking they’d be telling me anything good. I’m just all doctored out, but it’s likely I’ll be on to the specialist.
In the last few months after GCA Diagnosis and starting prednisone, I have had high blood pressure 160/90 and higher heart rate 85 to 95. Had lots of cardio tests. All look normal. For the last 10 days, My naturopath path has me drinking 3 cups of hibiscus tea per day Plus taking coq10 and magnesium. My bp today was 120/70. Heart rate still over 85. Every doctor blames it on prednisone. My resting heart rate pre GCA was in the high 60s. So a big change.
No harm in drinking hibiscus tea, and pleasant, too. Will try that. Trying to remember my mg/ca. Have to squeeze it between doses of drugs. Fortunately I haven’t had GCA. I would probably keel right over if I had to take that much prednisone. I really feel for all you you have GCA.
You and I have communicated about neuropathy in the past. Is this still an issue for you? I have progressive neuropathy with some autonomic symptoms, though nothing heart-related. Erratic blood pressure can be related to autonomic issues, I think. I also think I remember that you are in a location where it is difficult to get specialist care. It does seem like you need someone, either a good gp, or several specialists including a cardiologist and neurologist, to help you address your individual symptoms one by one and in an overall context. Sorry I can't be more specific. It is clear you are very frustrated and I feel for you. I'm in my 3rd year of getting to the bottom of the cause of my neuropathy, but finally getting some answers. Good luck.
Yes, we sure do have that in common. It is hard to get specialists here. I’ve searched for blood pressure and autonomic neuropathy and found stuff on erratic blood pressure, but all of it involved low pressure. I haven’t noticed having low pressure at all. I’ll be curious to know how you pieced together this puzzle and what answers you find.
Hi, I will write you something tomorrow. I need to go to sleep, am on the East Coast. I finally have a probing neurologist, after many failures. More soon.
Yes my bp got up and I starte be meds. It still up a bit even now I am back on 1 mg, and 0.5 the last three days. The prednisone probably still in my body. Yes and gained about seven kilo s... never mi d, PMR does
Not kill us, it could have been a lot worse. It feels amazing to be on0.5, I can t say that I feel great, but I can manage the pain and S far as I am concerned the less prednisone the better..😉Alida
Are they sure it isn't associated with the arrythmia? Or something entirely separate? Just because you are on a low dose of pred doesn't excuse other problems. One lady in the charity developed very high BP after stopping pred - they never have worked out what it is but it is possibly related to renal problems. And I would want at least a cardiology opinion and not have it left to a GP. And a one-off ECG is useless, as are one-off BP checks - at least 24 hour recordings are needed.
Oh dear. Sounds like I’m in for a lot more testing. I don’t think they have put any of my issues into a cohesive diagnosis. I did take home one of those long term heart monitors last fall. I got an allergic reaction to the adhesive on the electrodes within a day or two and didn’t leave it on long enough. My doc says she doesn’t know what to make of all my issues, and she’s just watching to see if it becomes more apparent over time. She’s a very good GP, and she does send me off to specialists, although she’s not the best for PMR. Still pushing hard for me to get off prednisone.
I got a little blood pressure machine, and I’m testing frequently. The readings seem random, I’m all over the place. Hope my new BP drug starts working.
If you have another longterm ECG monitor tell them you reacted to the adhesive - other forms of electrode are available. At least, they are in the state-funded system here so if they have them anyone should! But it really does need investigation as it could be related to the vascultis.
I will be sure to tell them, I hope they have an adhesive I don’t react to. After years of working in clinical and research labs, I have latex allergy...don’t know why non-latex adhesives can also do it. None of my docs have ever mentioned vasculitis...not sure if they know PMR is vasculitis even.
Is there a difference between the BP in both arms, many of us always use the same arm!
Are your radial pulses ( in your wrist ) equal in both arms? If there is arterial Involvement then it can affect BP readings. PMR Pro is right, you need a 24 hr BP recorder.
Have you ever had a referral to a Rheumatologist given the neuropathy?
Interesting idea. Will make sure to offer other side. Just checked pulses and they are equal. Did go to a rheumatologist for a year in 2017. He was terrible...decrease 1 mg per month no matter what, any PMR flare symptom was due to osteoarthritis or anything else. I got so sick that I quit going. There’s a rheumatologist shortage regionally here, so unlikely to get another, but maybe will try again in time.
"Autonomic neuropathy occurs when the nerves that control involuntary bodily functions are damaged. It can affect blood pressure, temperature control, digestion, bladder function and even sexual function..........................................
Seek medical care promptly if you begin having any of the signs and symptoms of autonomic neuropathy, particularly if you have diabetes that's poorly controlled.
If you have type 2 diabetes, the American Diabetes Association recommends annual autonomic neuropathy screening beginning when you receive your diagnosis. For people with type 1 diabetes, the association advises annual screening beginning five years after diagnosis."
Yes, when the neuropathy symptoms started I worried I would test positive for diabetes. But my A1C was well within good range last July. At least I don’t have that! (Yet) I do have most of the issues associated with autonomic neuropathy.
Yes! My BP spiked a few months ago. I could feel it pounding in my head. My readings were all coming in around 180/120. Fast pulse too, 95. The lowest reading they got at the doctor’s office was 178/100. I’m on 3mg pred after 3 years of PMR.
I was put on a calcium channel blocker. No referral to cardio, just being checked by the nurse practitioner. She also had me cut back on caffeine and restrict salt to see if that helped. My readings have been around 140/90 now. She just increased my BP med to see if I can get lower and has told me to lose weight of course. I
have a good at-home BP monitor now, which she had me bring to one of my appointments to make sure it got readings similar to hers.
My brother had the same issue. One day his BP just went sky high and stayed that way until he was put on a combination BP med that has worked well.
It seems so odd that seemingly all of a sudden blood pressure just goes haywire. Hearing these stories does help me feel better...at least I’m not the only one. I hate to say that though. Thanks, Susan.
I have had perfect blood pressure all my life. In this last year my BP has steadily gone up. I was having a back procedure the other day and during it my BP went to 224/99. They wanted me to go to the emergency room. Usually at home mine is 140/69. I am afraid, like you, they will put me on a bunch of meds. that may not work because of the prednisone.
I am 2year 2 months and 8 days into PMR and all the misery of pred. I am currently on 12 mg. and can't seem to get any lower. This illness and treatment sure does try ones patience.
I guess all we can do is take one day at a time and deal with whatever happens as it happens.
Your story is so similar to mine, fortunately I didn’t spike as high. I do hate taking more drugs, but so far I’m taking 2 new ones and hoping that will be enough to control this. Yesterday I had BP readings from 100/58 to 170/110. Seems so random that I wonder if the little machine I bought actually works. Yes, it’s really tiresome, and onward one day at a time!
You could take your machine in with you the next time you see your dr. That way you can check the readings against his. I have done that a few times and my machine has always been correct.
It’s just the pits, one thing after another, l don’t mention things to my friends anymore, l’m too embarrassed 😳 it’s kind of ‘What’s Wrong With You Now?’ I Chat on here with my friends & buddies as we are all in a similar situation, with one thing or another!
My Blood Pressure went up but it was the Steroids that caused it, l’m on now on Losarton25mg/Indapamide5mg it took some sorting out to find ones that suited me!
My plan is to start monitoring my BP daily & see if it’s something l can stop taking 🙏🏼 l have a very high pulse rate that sends the Nurses into overdrive when they take it, Resting Pulse 100
I hope it settles for you soon, do you have a monitor at home in case it rises more when you’re in a Medical Setting?
Me too. I don’t tell people about anything anymore...it’s embarrassing just like you said. I’m now on a beta blocker, which slows your heart, so who knows...without it I might have a rate like yours. Hope you can stop that drug, MrsN!
I’ve suffered with high BP for many years prior to GCA/PMR - take spironolactone and bendrofluazide. Since being on pred (5years) have been okay until lately. BP constantly over 150+/90+ - was given an extra beta blocker but can’t take those as it exacerbated psoriasis. Tried Half Securon and it causes dizziness - came off it for a week and BP rose - 160+/98+. GP took BP and rose five points just from sitting to standing - going to take Half Securon for another week (it helps control it) to see if it is the cause of dizziness and see GP for an alternate one if so.
I too want to know why this is happening - rheumy rang me to ensure I’d followed their instruction to see GP re this -reminding me I could have a stroke! Makes me feel even better!
If you get to know anything would be interested to hear. I’ll do the same. Wonder if it’s an age thing as well or is there an underlying cause?
Now seem to have an ear infection - hoping that's the cause of the dizziness as the half securon helps reduce the BP. Also got an eye infection in the new cataract eye - happy days. Best wishes.
Before my dx of PMR, I managed to go off bp medication completely through diet and exercise (I think it was that). Then when I started on prednisone, my BP went dangerously high (diastolic was 120!) so I had to go back on BP medication.
I was on prednisone for 2 years plus some of that time, I was on mtx and Actemra. I currently not taking any prescription medication and have had to stop bp meds as well because BP was getting too low and I had symptoms of positional orthoststic hypotension.
I'm still in the midst of getting a new diagnosis but I can say that in my case, prednisone did cause high blood pressure....but it was well controlled by... sartan
and when there was that call back on one of those meds, I switched to a diuretic (hydrochloriatizide) which also worked liked magic for the neuropathic pain I have at night caused by carpal tunnel.
It must be terribly worrisom when two bp meds aren't working to lower your BP. Hope you find a way soon.🤞
It’s good to know BP trouble can be reversed. Well done! I definitely need to lose weight, I’m having trouble getting started. I was doing well until a year ago when I upped my prednisone...flipped from losing .5 lb per month to gaining 1 lb per month. Not good.
I’m still very new to BP medication, maybe my doc will switch to another that works better. I haven’t tried a diuretic but interesting about the neuropathic pain...I have some of that, too.
I’ve been reading your posts about getting a new diagnosis, I hope you solve that soon, and that the answer is not too bad!
I receny found out that itching can also be caused by trapped nerves and diuretics are prescribed for carpal tunnel (at least in the US). It does work and taking a diuretic for me was like killing two birds with one stone. Also, it was the only BP med that didn't cause me a cough.
I managed to not gain weight during the time I was on pred, early on I went on a low carb diet,, motivated by PMRpro who lost a lot of weight while on pred. In my case, I didn't lose any but my appetite has decreased a lot now since going off the pred, maybe that and being able to exercise more is what normalized the BP.
There are so many types of BP lowering agents, you just need to keep trying till you find the one that works.
Sigh, yes the low carb. I’ve managed to lose decent amounts of weigh many times, but my will power for low carb always gives out before I get very far. Will have to do something about this before it gets way out of hand.
hi, I have had all those symptoms over many years before the pred (which I started in Dec 16) and after. I've Hashimoto's as well as PMR. I' had migraines for decades but they abated after menopause (they were cycle related..3 to 10 days towards the end of the cycle when oestrogen is low(probably too low in my case) but progesterone drops suddenly. I could replicate a milder version of the migraines with HRT if I did the same). They would put me in bed for those days of the months barely able to move and bright light painful etc. I guess progesterone does break down to same pathways as Prednisone partly.so you can see how headaches are caused when one's body is prone to act this way. I have asked for a brain MRI over the years. In the end last year I found out that I could pay for one privately(I'm in Australia) and my head hurt too much (I suspected GCA) but was told no.
In the end, a neurologist finally saw how determined I was to find the cause of my strange symptoms., so I didn't end up paying after all. That said, I have been diagnosed with moyamoya syndrome (on top of the PMR and Hashimoto's ). It does explain the severe fatigue I get as well... not a great diagnosis. It also explains why my body was so prone to those headaches...and the many symptoms I had. maybe you should rule this out with an MRI. Moyamoya is a narrowing of the circle of Willis in the brain which restricts blood flow..causing the headaches at times when you may get some swelling..like a pred withdrawal causing an increase in inflammation (or a progesterone drop doing the same thing when oestrogen is a bit low). BTW I got an endo to prescribe oestrogen with the progesterone for while tapering the prednisone. I couldn't get down past 12.5mg and I had severe osteoporosis (Z-3.8). It increased my Z score to _3.2or -3 in different areas and the endo wanted to increase the oestrogen but I did stop it as I was down and didn't "feel" like my body was desperate for it anymore. My body seemed to be screaming to me it needed it... with the seats and anxiety sever and a bit of depression(all lifted on a half patch of the smaller patch size..I forget 25mcg?) changed daily as I would "dump", I was so low I guess my body ate it up. When my body felt normal I could taper again..as well as the anxiety etc all gone. sorry off track..just saying things that helped stop some of those symptoms..the oestrogen even helped the dropping things, though not completely and really I do not know what caused or helps what anymore OK I'm now of track OH yes, the moymoya narrowing caused my brain not to get adequate blood..hence a few more of the symptoms explained.. but nota great answer..but something that is VERY RARE .but maybe as you do have all those symptoms and no diabetes(I don't have that also), maybe you should pay privately for an MRI. I didn't have the gadolinium contrast as I hate putting that stuff in my body..though I have to have one soon for a different neurologist. I also have some plaque in that narrowing in my brain causing it to be almost shut off..hence the inflammation on reduction of pred causing so many symptoms. I'm now stuck around 4mg..with a load of fatigue. Sorry, everyone, this is it for a while, I love reading on this forum. some very helpful and knowledgeable folk here. I found this forum a short whileago..so hello everyone and thanks for letting me join.
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OK I'm now of track OH yes, the moymoya narrowing caused my brain not to get adequate blood..hence a few more of the symptoms explained.. but nota great answer..but something that is VERY RARE .but maybe as you do have all those symptoms and no diabetes(I don't have that also), maybe you should pay privately for an MRI. I didn't have the gadolinium contrast as I hate putting that stuff in my body..though I have to have one soon for a different neurologist. I also have some plaque in that narrowing in my brain causing it to be almost shut off..hence the inflammation on reduction of pred causing so many symptoms. I'm now stuck around 4mg..with a load of fatigue. Sorry, everyone, this is it for a while, I love reading on this forum. some very helpful and knowledgeable folk here. I found this forum a short whileago..so hello everyone and thanks for letting me join. 
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