Was diagnosed with PMR on first presentation to my GP, and following blood tests was started on 15mg Prednisilone which gave me full mobility back and about 80% relief from pain. Brilliant! However, from the day I started Pred my resting heart rate started to drop and I had other heart-related symptoms, so was referred to the Cardiology Unit as well as Rheumatology.
I did 6 weeks at 15mg Pred, 6 weeks at 12.5mg, and am now on my second week of 10mg. As the Pred reduced I felt no change in the relief it gave me, and my heart rate/symptoms recovered. Excellent! My Rheumy says the aim from 10mg downwards is a very slow reduction of no more than 1mg every two months, symptoms permitting; she has prescribed me ADCAL D3; and she has said we will decide on Alendronic Acid once she has the results of my DEXA scan. Wonderful!
All was going well. Too well, obviously…
Now, I have a urinary tract infection. Antibiotics are definitely helping, but it’s a stress my body could do without.
Yesterday, I got a call from the Cardiology Unit. They said they have not analysed my 24 hour Holter monitor results yet; and my CT scan was normal with zero calcium in arteries; but my Echocardiogram showed my heart function was ‘not completely normal’ and I now need further tests (MRI scan and stress test on a treadmill). At any other time in my life the thought of exercising on a treadmill to the point of exhaustion would hold no horrors (I’m a UK Athletics Coach and have run seven marathons) but how I’m meant to do that now I do not know.
Meanwhile, I am trying to stay strong but feel an emotional wreck as my daughter’s epilepsy has taken a dramatic turn for the worse and she is back in hospital, having multiple seizures a day, and has needed emergency ‘rescue medication’ four times in the last 24 hours. (And I know it’s a minor issue in the great scheme of things, but there is a very long steep slope from the car park to the hospital which I’m really struggling with every day… and don’t get me started on hospital parking charges!!! )
I feel exhausted and guess I’m just feeling sorry for myself as I’m missing my husband who is working abroad. If anyone is still reading this, sorry for the rant, but it has helped me to ‘unload’.
x
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JanetRosslyn
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Feel free to rant as much as you like! We all have in the past, and as I said to someone yesterday just writing a post helps you to clear things in your own mind, and alleviates some of the bottled up stress.
You have a lot going on so no wonder you're stressed, and it's always the way that one problem follows another, and another ..... think it's called "sod's law"!
My hubby, who spent a lot of time in hospital, as an in, and out-patient, always used to say "they're not designed for people who are ill" - and he was right!
I think you are allowed to feel sorry for yourself - and I not surprised given that catalogue. And if you can't rant here - where can you!
But to business: contact cardiology and point out to them that your notes will have informed them you have PMR, exercising on a treadmill to exhaustion isn't going to happen because you can't and will they please consider the pharmcological version of a stress test. One of the questions they are meant to ask is are you capable of doing the physical version. Obviously PMR is a get-out clause! They tried a cycle test with me here (no treadmills praise the lord!) and I simply couldn't do enough so was sent off for the pharma-mediated one. I wouldn't recommend it to anyone - it was OK really apart from the dry mouth for the next few hours - but I wouldn't complain about another if needed.
I'm so sorry to hear your worries. I don't know anything about heart issues but I think you need to ask your community of friends and family for some help. Is there someone who can drop you off and pick you up at the hospital so you don't have to manage the slope? Also, once in awhile can someone take a turn at the hospital so that you can take a nap/meditate/ rest? Fingers crossed things get better quickly.
Thank you for your responses ladies, they really helped, I was feeling so alone. I’ve had a couple of days where I’ve not been coping too well, which is why I haven’t responded earlier, but I’m fighting back now. And hubby’s home 😊.
I’m the eleventh of twelve children, known as the ‘sensible one’ … (the title of the ‘pretty one’ was fought over and won long before I was born, or obviously I would have claimed that– ha ha)… and I’m the one that friends and family turn to whenever they have problems. I can’t always help them, but I’ve always been there to listen. Unfortunately, whenever I call them they start telling me all their woes, so I don’t feel I can really add my worries to theirs. Life can be a pain at times, but as it’s better than the alternative I’ve decided I’m going to smile and be positive and make the most of it.
My daughter discharged herself from the local hospital yesterday as their care left a lot to be desired! Luckily I was there to prevent someone from administering a drug by injection when it was supposed to be dripped slowly into the space between the gums and cheek; and on another occasion it did not instil confidence to see two nurses panicking and trying to restrain my daughter when she was having a seizure (you never do this!). She is now staying with me until a bed becomes available in the Epilepsy Centre under the care of her own consultant. It’s hard work having her at home, but less stressful on both of us, and thankfully we can always call 999.
This morning I’ve had two letters from the Hospital. One, from Cardiology, gives the results of my heart tests and states that I have heart failure – I’m to have further tests and in the meantime I’m to see my GP who will start me on medication. (I have an appointment with my GP next week). I’m really surprised by this as I’ve lived a very healthy lifestyle… no smoking, no alcohol, sensible diet, lots of exercise… and I wonder if heart failure can be caused by PMR or Prednisilone?
(PMRPro,I will take your advice and contact Cardiology about an alternative to the treadmill stress test. Thank you for that information.)
The other letter was from Rheumatology, telling me that my Vitamin D level was insufficient at 54 (dropped from 75 in December). The letter states that I need to continue on 1000IU a day (although I’m currently only prescribed 400IU a day through Adcal D3). Does anyone know what ‘normal’ levels would be, and if 1000IU a day sounds sensible? A DEXA scan is being arranged.
Today, my daughter and I are going to sit out in the garden in the sunshine with our canvases and do some creative painting… her artwork is quite good, and I’m hopeless, but we have a laugh and it’s very relaxing.
"I don’t feel I can really add my worries to theirs" - possibly not, but in the great scheme of things, how do their woes compare to yours? They don't need to add THEIRS to YOURS - it's a 2-way street. Be up front with - and see what happens! It's your turn now.
The vit D3 - when I was on AdCal it was 2x daily of a 400IU dose, which is a bit better. 75 is probably about the bottom of what they describe the optimal range (difficult to say without knowing the exact units it was measured in, there are 2 but that would be right for the usual UK one). 54 is insufficient yes - but a few years ago you would have been told it was fine! My husband's recently was 7 - he didn't feel ill... The best thing to do would be nip to H&B or your chemist and pick up some vit D tablets - H&B in particular are cheap and good. Boots is usually grossly overpriced for everything - but reliable sources I suppose. An extra 1000IU sounds fine. Here where I live the osteoporosis guru recommends 2000 IU/day all through the winter - and that is in northern Italy where theoretically we can make vit D all year. It seems we don't since 80% of the population is reckoned to be deficient (that is worse than insufficient).
PMR or pred? It depends on the cause of the heart failure - there are plenty of underlying causes and that will be what the tests are for. I have atrial fibrillation which is almost certainly due to the autoimmune part of the PMR - and it could cause heart failure. It hasn't yet and is well managed now. Pred? Don't think so but don't quote me! Perhaps you should have lived a less healthy lifestyle
Hmmm - sounds as if you were providing some of the teaching in said hospital. I hope you have flagged up the confusion with the i.v. injection versus buccal administration? That's how people get killed in hospitals.
Daughter now in Epilepsy Unit, still very poorly but receiving excellent care. 40 mile round trip every day, but I'm managing - the bonus being their car park is on level ground and there are no parking charges! I asked friends and family for help with visiting, and although they all sent their 'best wishes' and posted Facebook messages that's as far as it went. Well, apart from them sharing more of their woes with me... everything from one friend waiting for a lung biopsy and another being diagnosed with Multiple Sclerosis... (which makes me realise things could be worse for me really,, so I shouldn't complain)... right through to one sister crying about her dog having a bad limp. (Is there such a thing as a good limp?)
Good news: the urine infection cleared up quickly with antibiotics. Bad news: I've now got cold sores on my lip and, very strangely, a large black spot has appeared on my tongue! I haven't bitten my tongue, so what on earth is all that about??? If it doesn't go soon then I'll get my dentist to check it out.
What worries me more is that tomorrow is my first appointment with the Heart Failure Nurse. My husband was meant to be coming with me, but he's had to fly out to Luxembourg this afternoon for work, so I'm feeling very alone. I really am feeling pathetic at the moment, which is so unlike me! I know Cardiology have asked my GP to start me on 'heart failure medication' as I received a copy of the letter they wrote to him. Unfortunately, my brilliant GP has left the practice and I'm not too confident in his replacement who phoned me and told me he wasn't sure what medication he was supposed to start me on. He then said he 'usually' gave two drugs ... (I made a note of their names, but can't find my note)... one of which would reduce my blood pressure and one of which would reduce my heart rate. ??? Erm... my blood pressure has always been 'good' (low, actually), and it was concern about my low resting heart rate that started all the heart investigations in the first place! I told the doctor I wouldn't be taking up his offer of these drugs until after I had spoken to the Heart Failure Nurse and had the MRI and stress test done.
I'm feeling scared and confused, so right now I'm going to switch off from everything by watching 'Vera' on television and then going to bed with a good book!
I understand the "feeling pathetic" feeling - I spent 3 weeks in hospital a few years ago, my PMR had previously been well managed until they put me on Medrol (the usual corticosteroid here, yuk, horrible!) and then things progressively got worse until my back sized up totally and I was admitted for treatment of that - and it all spiralled downhill from there! But until we got this sorted out I felt so vulnerable I couldn't even express how I felt.
I was lucky though - you don't get sent home here until they have sorted out your medication. Just as well really as the ACE inhibitor turned me scarlet and VERY itchy - big red sign on hospital notes: Do Not Use!. The junior doctors just dismissed my complaints of this spreading evil - but the senior one jumped quick enough when I told him during the ward round. The cardiologist had specified 3 alternatives so if I "failed" the first they knew what to do. What on earth - "heart failure medication" is just SO specific and informative!
Hum - no, if you have bradycardia I doubt you need anything that will slow down the heart rate any further! The American Heart Association says:
"Research studies of heart failure have shown that several classes of drugs (medications) have shown to be the best for the treatment of heart failure. Heart failure patients may need multiple medications. Each one treats a different symptom or contributing factor. Each medication comes with its own instructions and rules. They can't do their job if you don't take them correctly. You and your caregivers should work with your healthcare team to understand the medications and how they should be taken; when, how often and in what amounts. It's important to discuss all of the drugs you take with your doctor (or other healthcare provider) and understand their desired effects and possible side effects. Remember that your healthcare provider and pharmacist are your best sources of information. Don't hesitate to ask them questions about your medicines. "
I imagine the cardiologist meant something to improve the strength of contraction - but who knows! I'm with you on the decision to "wait and see". Good luck.
Pleased to hear your daughter is at least in good hands - always a good start - and it sounds as if you have similar "friends" to the ones I had when my husband had cancer. "Do say if I can help..." they said but I was looked at as if the cat had dragged me in when I made a concrete request for someone to do something. And I drove from rural Angus to Edinburgh every day when he was there for surgery - nobody asked if they could drive me and I wasn't asking again. "But you were coping so well!"
Thank you so much for your reply PMRPro, you will never know how much I appreciate your wisdom and kind words. Bless you. And you've really been through the mill yourself, haven't you!
Yes, I so agree... once I've had to force myself to ask someone for help there's no way I'm asking again.
Anyway... an update on my visit to the Heart Failure Nurse this morning: She was a lovely lady who seemed to listen to everything I had to say and she took copious notes which she then read back to me to make sure she had got everything right. She explained to me that I have ‘moderate’ heart failure - as opposed to minor or major - but as I am currently having no symptoms, no fluid retention, and my blood pressure and resting heart rate are good (BP 110/60 and RHR 54) she has agreed to hold back on any medication until she gets the results of my MRI and stress test. She wasn't able to give me dates for the tests but said I would receive an appointment letter in due course and she would have the results about ten days later. In the meantime, she has given me lots of leaflets and her phone number in case I have any problems... and a chart on which to record my weight every morning! On a positive note I guess that might give me the incentive to stop stuffing my face with chocolates and toasted teacakes and chunks of cheese and so on and so forth
Oh... one more thing... the black spot on my tongue has completely disappeared! It was there, exactly the same, when I brushed my teeth this morning, but when I went to rinse my mouth after lunch it had gone! Counting my blessings
Nurse Practitioners are often far more use and empathetic than a doctor - mostly female and practically trained so they put their brains in gear before opening their mouth and then speak patient-speak which also helps!
Update for anyone interested: Three months later... I'm back at work full-time, coping okay and staying positive, all things considered. Employer being very accommodating and allowing me as much rest as and when I need it.
Bad news: Daughter staying with me, still having daily seizures and needing constant supervision and we're fighting a long battle with the benefits system. Grrrrr. I don't mind a fight though. Quite like it sometimes! Bring it on!!
Good news: Pred reduction going well, currently in the process of dropping from 8mg to 7mg . Rheumy says to take 12 weeks to drop 1mg as "You're likely to have PMR for 3 to 5 years so there's no rush." I'm okay with that.
Amazing news: After months of the Heart Failure Nurse and my GP telling me I was in denial and that I really ought to be taking heart failure medication (which I refused), I've had a phone call today with the results of my MRI, taken at Harefield Hospital (which I believe is one of the leading heart/lung hospitals in the UK). They report that I DO NOT have heart failure at all, and that my heart is in very good shape with no problems. PMR or not, I danced around the room! I feel very annoyed that I've had months of unnecessary worry, all because someone misinterpreted an echocardiogram, but I'm so relieved I've cried with relief.
"someone misinterpreted an echocardiogram" - nothing new there then!!!! I think I might take Harefield's word for it!
And where did you find that rheumy?
Do hope you can sort your daughter out.
We watch Sky News, generally acceptable and with some very good points. However - they do a "what the papers say" in the morning and the other day they had Michele Dewberry on (she won the 2nd Apprentice and calls herself an entrepreneur. Anyway, they were talking about the strain carers are under with often no respite in 5 years - and the stupid woman announced that looking after family members was not a job! I didn't think much of her before - think even less of her now...
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