Update on dizziness/shortness of breath ...
Posted , 8 users are following.
Having had some "episodes" of nearly fainting with rapid heartbeat/dizziness/odd balance/blurred vision etc...had many blood tests....ECG this morning......nurse was very direct, nothing wrong (but will see doc in 2 weeks) bloods were ok, not aneamic, or diabetic, ceoliac, or other things......when I asked if vit D was tested....wait for it....no, that`s too expensive.....oh I came out of there feeling quite worthless, but before I left, she lectured me on my high cholesterol...6.8 (didn`t starve for the test) went through everything especially diet, and came to the conclusion it`s steroids that are raising it, and then said...you will have to go on statins. if you stay on pred....to which I replied, I won`t have to do anything if I don`t want to!
?Do many of you have raised cholesterol?
?Had MRI for lower back pelvis hip pain...came back ankolysing(spelling?) deteriation....what ever that means??...and so it goes on....
?Am seeing a rheumatologist in 2 weeks so hopefully he can make some suggestions....but fear it will be DMARDS to help lower pred (10.5mg)
?Thanks for any suggestions....
0 likes, 27 replies
jan21306 linda17563
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I have had many episodes of dizziness, blurred vision, rapid heartbeat, balance bad etc. My doctor and the Rheumy have said it is my 'exquisite sensitivity' to Prednisolone which causes all my problems. At the moment I am withdrawing from 7.25mg to 7mg and having irregular heartbeats esp at night, increased anxiety and restlessness and trying to keep calm !
I also have raised cholesterol level of 6.6. My good cholesterol (HDL) is over 3, so my doc isnt too worried about it. I told him there is no way I am going on statins. He agrees that I have enough side effects from the Pred, Betablockers and acid suppressants, without adding to them !! If your good cholesterol is quite high I am told it is not such a worry. Ask your Nurse/Doctor what your HDL is. I always get copies of my blood results so I can keep a record at home.
philoso4 linda17563
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If HDL is high and/or total is only somewhat elevated, my MDs have said Do NOT take statins. There is a link of statins to back pain and PMR. But be sure to check it out with a couple of doctors.
My HDL is extremely high and I've been at a medrol level of 8mg (=10mg prednisone) for a couple of months. Into my second year on medrol.
EileenH linda17563
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I think I might go back and inform her that privately a vit D test costs a whole £25 from the lab in the Midlands that does testing for the NHS. I don't imagine they do it cheaper for you, the NHS buys in bulk. Google it! A friend was told it was £200 for a vit D test - er, rubbish. and when she told them - they did it, admittedly with rather poor grace.
Were you having a faint/dizzy/rapid heart beat etc episode while she was actually doing the ECG? Unless you were, she CANNOT say there is nothing wrong. I'd be doubtful a practice nurse can read an ECG that well anyway. Even experienced doctors sometimes struggle. Overall, how patronising...
I have raised cholesterol due to the pred - I refused to take them until I was in hospital after a drug-reaction severe atrial fibrillation episode. I took a low dose every other day for less than 10 days and was nearly in a wheelchair - I stopped them and started to feel better quite quickly but it was months before I got back to where I had been before. The cardiologist was fine about - it was the non-cardiologists who had dished it out on the basis of raised cholesterol. My HDL cholesterol is very high - which takes up the total level obviously. However, there is no good evidence that, for a woman who has not yet had a cardiovascular event (heart attack or stroke), taking statins will prevent one happening. It does appear to reduce the risk of a repeat though. Statins would be fine - if it were not that they are slowly being sussed out: new German research shows they can now be linked to the development of dementias including Alzheimers (there is a reason for older people having raised cholesterol - probably to protect neural function), poor memory is a common side effect and one of the adverse reactions listed on at least one data sheet is PMR, they certainly cause muscle and joint pain. Thanks but no thanks!
However - if your MRI shows ankylosing spondylitis you may be off the pred sooner than you think! PMR and ankylosing spondylitis can present very similarly, but AS is an inflammatory arthritis and responds much better to other medications. As you are seeing a rheumy soon - I suspect there may be some discussion about your medication. There is a lady on the HealthUnlocked forum who has been a mystery patient although almost certainly had undiagnosed GCA for some time. She happened to mention to her new rheumy she has a lot of pain at night - and was sent for an MRI. The result was AS was diagnosed, she has been put onto an NSAID (meloxicam I think) which has already helped the stiffness and pain and she will go onto an anti-TNF biologic drug in the New Year - one of a choice of five.
So, looking forward to the next installment.
linda17563 EileenH
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Thank you so much for all this info....
?Yes, the nurse (a relief) was very patronising....when I said I`m not taking statins I have enough muscle and joint pain now...she said they don`t cause that, only pins and needles! She did say that the "bad" part of the cholesterol was the highest....but I have read many conflicting articles about statins.....and if the medics can`t agree about them....well....
?No, I didn`t have an"episode" while having the ECG....so watch this space....will discuss all of this when I see a different rheumie in a couple of weeks, who hopefully will let me at least ask questions.......which the last one wouldn`t....and perhaps I will have some answers! Interesting about the lady on HealthUnlockedforum.....sounds somewhat familiar to me....
?Thanks very much again, and when I have been to hospital in a couple of weeks, will post with results.....
?Hope it`s not too cold where you are Eileen, like here!.(Uk Norfolk)..bet it`s pretty though
EileenH linda17563
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It was -8C yesterday morning and crawled up to about +2C. This morning it was -5C - and we walked down to OBI (Germanic B&Q) for himself to get new xmas lights (bah humbug!). We came out and the sun was shining and it felt so warm we stopped at their cafe for a "beer and a Birdy" (Aperol spritz) sitting outside! It reached 10C this afernoon - we hung the lights on the balcony and I sat out there to drink my tea! Some places in the region were warmer - further up the valley was over 13C and over on the west side it made 15C but with strong wind, we had little wind. But no snow (hardly at that temperature) except what they are making up the mountain
linda17563 EileenH
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ptolemy linda17563
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EileenH ptolemy
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linda17563 ptolemy
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Yes, always a battle!.... the last rheumie I saw wanted me to take mtx, becuse she said three & half years was too long to be on pred!....when I said no (I`ve seen the results on my sister...very ill) she really didn`t like that....and said, come back to me when you are down to 5mg!.(i`m on 10.5)....that was eighteen months ago.....(many flares etc) She also wanted me to have AA (refused)....why don`t they like to be challenged, it`s our bodies! I`m sure you know more than them!
ptolemy EileenH
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ptolemy linda17563
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EileenH ptolemy
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Not kind at all - it is true. I sometimes get the impression the average GP slept through their pharmacology lectures! They definitely slept through their physiology classes!
Yes - I occasionally have aspirin or paracetamol in the cupboard but not for me! Paracetamol is one of the biggest con-tricks out there - and the Aussies have cottoned on to that and looked more closely: placebo effect. GPs in the UK were furious that the advice was given it was useless for low back pain "we haven't got anything left to prescribe now" and it was reinstated. No wonder the NHS is in such a mess! I wish I knew how people get onto the NICE committees!
I do find some younger doctors are rather less elitist - but remember the shredding I got on the HU forum? "I'm a GP - and the rest of you are not..."
ptolemy EileenH
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I must admit when I had one of my fights with the male GP, he did say "I am just a mear GP!" I must be getting to him.
linda17563 ptolemy
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Too right....my mother-in-law who died aged 93, 4 years ago, thought doctors were absolute gods.....but that generation did....
?I have never been able to tolerate meds.....because I think of having fibromyalgia as well, which makes a person VERY sensitive to lots of things....especially noise/light/smells etc.....even have to be careful with aneasthetics(spelling?) for ops/dentist.....
?What then may I ask do you take if pain is too much and need something....we can`t have anti-inflammatories, so......what`s left I ask myself....
?Think most people like myself (not connected to Pharmaceuticals in any way) are suspicious of "trials" etc, they are mostly paid for by them anyway.....it`s such a shame that we have to feel like this and not trust the "powers that be"
EileenH linda17563
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I went to medical school - twice. Once to start medicine, once to finish a physiology degree. I have many medically qualified friends and have worked amongst them most of my life. Really - they are no different from any other graduate - and they mostly have big black holes in their knowledge. The good ones know - the dangerous ones don't.
I was told I couldn't really use any pain-relief medication when I asked re bursitis - pred and an anticoagulant rule out NSAIDs - so I do get a bit more help in terms of dealing with underlying causes here. I wonder if that is why they make less fuss about the pred dose????????
linda17563 EileenH
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Apparently according to statistics (don`t we love them!) I have a 10% chance of heart attack in 10 years.......wait for it, mainly because of my age (65) well, I can`t do anything about that I told her!!
Have been to Bowen, physio..acupunture recently, to help with pain, but waiting to see what a different rheumie suggests in a couple of weeks....
EileenH linda17563
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Certainly when we moved to Durham I went to the GP and, not knowing any better, took the first appointment I was offered. He never looked up from his computer while telling me very brusquely he wasn't going to deal with what I had gone for until I had had my overdue smear done! I duly had it done and the nurse said she'd now fetch the doctor so I asked if it HAD to be him. She looked sympathetic but said sorry, no, had to be him. He arrived - and greeted me like an old friend! The difference? He'd seen me at the hospital educational lunchtime lecture in white coat and NHS label. I was disgusted. He had his uses though - if we wanted a quick appointment we went to him as he ALWAYS had spaces! I have no idea why he was a GP - he was generally brilliant but his clinical skills were poor and he would always ask what WE thought it might be. He should have been a pathologist - they don't have to talk to their patients.
But yes - I would take exception at a morbidly obese nurse telling me about cardiac risk!
ptolemy EileenH
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We had a GP like that who has now retired. He was known in the village as Dr Death (or De'ath by some people!) because of his cock ups. On the other hand he was very interested in non human animals and people used to take injured ones to him. He should have been a vet perhaps.
EileenH ptolemy
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Don't think he cocked up too much - but he just didn't have people skills. Which, I suppose, when you think about it, is a major cause of cock ups...
ptolemy EileenH
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In fact he was very likeable. BUT Two people died as he misdiagnosed meningitis, he said they had flu. He did make the front page of the local press. My brother broke his arm and he said he was fine and could just carry on and failed to realise there was a problem, my next door neighbour's son had a perforated ear drum he did not spot. He told a lady to wear compression stockings who had a thrombosis. A teenager nearly died with an allergy to broad beans, but luckily he saw someone else. He diagnosed one guy with asthma when he had heart problems. When he died at night a few days later at home the police had to be brought in as he had not been diagnosed. He told someone's husband to take an aspirin who then died that night. In fact Dr Death was a good name.
EileenH ptolemy
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Yeeesss! See your point!
My MIL had a doctor like that - while I'm not sure he killed anyone he certainly didn't help them defer their deaths! He misdiagnosed MIL - scared her to death by telling her she had a heart condition and sticking her on digitoxin without monitoring the dose - when actually she was desperately anaemic. Which we got identified when she visited us in Germany. He'd been looking at her eyes - obviously hadn't heard of the haematology lab! He couldn't recognise thrush on a baby's bum - nor on her mother's lips.
To add insult to injury my MIL had named him in her will - until I told her in no uncertain terms just what he'd already managed to do to her family, never mind any others! The cat's home would have been fine - not him!
linda17563 ptolemy
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We know they aren`t gods (although some think they are!) but that is frightening....