I wrote recently about my emergency hospital treatment due to VERY high blood pressure. Since then, my BP averages 140/76 - which is still more than previously, even with the addition of a second BP tablet - but the doctor isn't concerned. However, I still don't feel "right" and am getting worried. I appreciate that I'm now at a level where there could be problems with adrenal glands because I'm now at 7mg after a very slow taper from 40mg over two years ago. I think the possible adrenal problem could due to having been left on 40mg for seven months - I won't even start to explain!! Anyway, my concern now is that I have the feeling as if I'm burning from having been in the sun too long - very weird, I know - and nothing seems to help. I put cold towels on my legs, which are the worst, but it doesn't help. Then, last night, I woke in a kind of panic with my head pounding and my legs on fire. This is nothing like a "hot flush" and I don't perspire. I didn't check my BP because I would have been even more worried if it was raised but, perhaps in hindsight, I should have done?
I'm sorry this all sounds so vague but my doctor just looked at me as if I was talking rubbish so I'm just hoping this may make sense to someone here.
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Janann25
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This all sounds like Pred side effects to me. I remember that prickly heat burning at the higher doses. Raised blood pressure is also a side effect. Mine is always on the high side of normal. At home and in the doctor’s surgery. I am on 50 mgs of Atenolol. The other day my reading was 177 /90 a little while later it was 148/90. I am only on 4 mgs. I get daily headaches so I have been wondering too. You have to be very proactive with my GP surgery, nothing is ever followed up. It used to be so good. I only ever see students now.
I wonder if your symptoms have been compounded by being left on 40 mgs for a long time. Can you ask to see your Rheumatologist? You need a doctor with a more enquiring mind.
Thank you so much for your reply - it's so reassuring to know there's someone else with similar issues!! Yes, I often wonder just how much of my problems are as a result of the total amount of Pred I've taken over the last couple of years. I'm going to contact my very knowledgeable rheumatologist (not the one who kept me on high doses of Pred for such a long time!) this week and see if he can help. I'll let you know........
If the doctor can't cope with accepting a patient's symptoms they need a bit of a kick!!! Admitting you haven't a clue about what might be causing them would be perfectly acceptable though! Needs some homework on your part maybe!
might help you get your brain in gear. It could be neuropathy - I get small burning patches of skin very occasionally that are tender to touch after but it hasn't been a problem yet - and that is an unusal effect with pred.
But have you changed any of your medication recently i.e. before it started? And that includes same drug, different manufacturer. Or washing stuff - or anything "new improved" on the part of the manufacturer.
And of course - HAVE you been out in the sun? Pred does make skin more likely to burn.
Once again, thanks for your comments and advice. First of all, I definitely haven't been out in the sun. If you could see the state of my poor skin as a result of all the Pred, you'd understand why my arms and legs never see the light of day!! My medication hasn't been changed but I can't comment on any possible change of manufacturer- they seem to change with monotonous regularity.
I found the link which you gave me very interesting - I must admit the reference to neuropathy seems quite pertinent to what's happening to me. I plan on contacting my helpful rheumatologist in Chertsey this week and hope he can help in some way.
Have you considered that it might be one of your blood pressure tablets that is making you ill. I was recently given brinzolamide eye drops to try to further reduce my glaucoma pressure. What I was not told is that they are a kind of Ace Inhibitor which i had been given following a heart attack some years ago. Within days I was unable to breathe had a pounding headache and too dizzy to stand, it took 5 days to recover from them. I was also given Bisoprolal for my blood pressure I take 1.25 mg to keep Doc happy, but anything over 2.5mg and I feel terrible. They just don't suit me. In the end I had a strong conversation with the Dr.'s about blood pressure and said I was going to manage it with diet and exercise because BP meds make me feel horrible.
However, this is just me and they put in my notes I was taking a risk and it was my own decision. I am not recommending anyone stop their medication but just wanted to say that its not always pred, my experience with BP meds was worse than anything Pred has done to me.
Thank you for reply. I don't think it's my BP medication as I've been on it a long time - it also helps to regulate my heartbeat. But of course, the ingredients in any tablet are not necessarily consistent so there's always that possibility. I'm starting off by hopefully seeing my rheumatologist quite soon and will take it from there. Thanks again for sharing your own experience.
I had bisoprolol and losartan combined, both at very low doses. It worked well and no side effects. Now I'm just on bisoprolol. And yes - the fillers from various manufacturers do vary a lot in their effects.
I had very bad 'burning legs' especially at night when I was on higher doses of pred. Now I'm down to 7 mg it's much diminished, though I still get some prickly heat sensations especially behind my knees. I find Aveeno products body wash and moisturiser help to ease it. The nasty sensations don't go completely but they definitely lose the worst of their sting.
Your post leaves me wondering if you have been in the sun too long, or if you feel like you have been in the sun too long? If on average your BP has been averaging 140/76, as a retired RN, I wouldn't be too concerned either. It would be normal for it to be high while in hospital, a very anxiety producing place.
Sounds like you may be having anxiety attacks. However, if you can find a way to comfort yourself, reading, music, a good movie, or doing an activity you enjoy, you may find a way out of the attack. Failing that, ask for a short term of tranquilizers.
The burning feeling of skin is something else. My mother went through skin problems like what you are describing and she had a rare allergy to Benedryl. Benedryl stopped, problem gone. It sounds like you are thinking a little too much about numbers of your BP, your Prednisone taper dose. Blood pressure fluctuates all day long. Stop taking your blood pressure is the first thing I would do and try to forget about it.
If the burning skin problem persists, see a dermatologist if you can to see if there is an allergy or if it has to do with something else. You need to find a way to calm yourself. If you read the brilliant post on Chronic Illness , it actually mentions the perception of body temperature . I don't mean to offend, and I wish I could give you a hug, but you're creating a tempest in a teapot.💐💐💜💚💙 Maybe this is a little too much tough love. ??
No, I’m definitely not offended!! Any advice to help me cope with the vagaries of this illness are very much appreciated. And yes, I agree that checking my BP constantly is not good - I think the reason I become so concerned about it is because my father had very high BP which caused too horrendous strokes and meant that he passed away very young.
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