Sorry but I need to rant! Saw Rheumy 2 months ago and there were problems with my BP and High blood Calcium level. l will get your GP to keep an eye on that he said.
I have been seeing GP every 2/3 weeks since. Because the first set of bloods she ran showed
High Calcium
High WBC
High Cholesterol
So this together with the high BP and High pulse rate needed checking
The High WBC she said was an infection and gave me Antibiotics (sweat rash under boobs)
High Cholesterol she gave me a diet sheet of what not to eat
High Calcium - stop taking the Ad-Cal
And booked in for ECG 24 hour monitor
High BP - 10mg Amlodipine (Rhuemy had put me on 5mg)
Today I returned to her and she said the ECR results showed nothing wrong. I asked her if I needed an Aorta ECG, she looked blank and said no. I said I do have GCA in the Aorta and I am worried. Talk to your Rhuemy was her answer
I handed her my home BP readings.... Cursory glance... As they are down to about normal. Do I need to lower Amlodipine to 5mg? No
What's my CRP? 14 a bit high. That's about normal for me as I am also sero positive RA..... Talk to your Rhuemy..
What's my calcium level? normal . Shall I start taking the Ad-cal again ...Talk to you Rhuemy. Do I need another Dexa scan to check what's going on with Calcium? You had one 18 months ago we only do them every 5 years. Not for people on Pred surely we are at high risk? .... Talk to your Rhuemy.
I still have the rash... The antibiotics didn't clear it... I will look at that later.
What is my WBC? Ask your Rheumy.
What dose of Pred are you on now? 9mg I tapered last Friday. Do you need more? Yes please 5mg and lots of 1mg... She starts printing Script. Can I also have more Amlodipine, Alendronic and Omeprazole? She prints off all the Scrips.
I then went to ask another question and she said " that's it, you've had your 10 minutes, I have other people to see"
I was absolutely stunned and walked out feeling shameful I had wasted her time. She didn't even look at my rash or take my BP!!
Am I feeling a bit of Pred Rage or am I right to feel very angry?
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Caro12line
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Thanks DorsetLady. I thought her attitude was bad, but didn't know if I am being over sensitive (I do get mood swings ) My local practice is one with several GP so I can ask to see another GP. But I have to say in her defence in the past she has been fab, so maybe she was having a bad day. She is the GP I saw when I started to get the head pains. She suspected GCA and put me on Pred (and accompanying protectors) that day and phoned Prof Dasgupta, who saw me in two days. So bravo to her for that. also on previous visits she told me she had been on Pred for Asthma, whilst in medical school and knows exactly what it's like. She also said as medical student she thought she knew best and stopped taking the Pred and made herself ill. So I really thought I had struck gold with an understanding GP. Also she has not long returned from maternity leave so is probably struggling with sleepless nights!! Maybe it is 6 of one half a dozen if the other. Her having an off day and me, armed with my list of questions and being over sensitive. Thanks again.
As you say could just be a bad day for her. But that's not very professional. However if you feel generally happy with her then maybe see how she is next time. We all deserve a second chance!
Thanks DorsetLady. Maybe I will put it down to "baby blues" and see her again. I know people have been kind and forgiving of me when I have a bit of a meltdown! 💊😱💊
Strange to give you an antibiotic for a sweat rash under the breasts which she hadn't even seen. That's more likely to be a fungal rash (I know - it happens to me too) which would respond to an anti-fungal cream (ask your pharmacist) and a cotton bra would be ideal.
Yes I thought it strange too. I had been using Sudocreme and baby talc, it wasn't really a worry. But because my WBC was high she was asking if I had any infections. Cough, sniffs, Etc. that's the only reason I mentioned the rash, because it was the only thing I could think of. She took a look and said ah probably an infection there and gave me the antibiotics. I will try an anti fungal powder, I bet that will clear it. Thank you
Hi. My GP gave me Fluconazole 150mg capsules for the rash as it was one of my first annoying side effects of the steroids. I take just one tablet about once a month and it is much more effective ŵithin 24 hours than any of the creams. It's worth a try.
How disgusting, I thought mine was bad enough. I would see another doctor! I do feel for you, doctors can make you feel a complete waste of their precious time. What should be pointed out to them is that they are there to help us when we are ill and if they need to spend a little extra time with one or two patients, then so be it. Good luck and I am sure I am not alone in wishing you better luck next time.
Thanks for your support. But it just got a whole lot worse!! I turned up for my Rheumy appointment this morning and was told it has been cancelled and I should have got a letter. I asked if someone could see me anyway as I have concerns and was told no, we don't do a drop in clinic. I burst into tears! (Part Pred part anger I think) A nurse came out to speak to me. I explained about the GP yesterday and she just repeated ......this is not a drop in centre (I was still clutching onto my appointment letter for today) if you have concerns go to A&E. I said and what are they going to do? Do they understand GCA? Do you go to A&E to discuss test results? She just keep saying, there is nothing we can do. I am so so angry and upset. I feel as though I have just been given a bag full of drugs and left to flounder.
Lordy, Lordy, what a complete shambles! I really feel sorry for you. You really need to get some answers pronto to put your own mind at rest. I think you need to go back to your surgery and insist that you see somebody who can give you the results of your tests. They should be able to access them from the so called joined up IT system!
I'm afraid you may have to be strong and insistent, and preferably loud so other patients can hear you! If you can take someone with you and don't take no for an answer. Try not to get cross, but get your point across that you need some answers from someone, and if you don't you are going to make a complaint to the health authority. You don't have to, but they don't know that! Good luck!
Thank you. I am a complete mess! I can't stop crying! I have to go to work tomorrow. I took Wednesday off to see GP and today off for the hospital. I commute to work a 3 hour round trip so I can't do appointments and work on the same day. So I guess I just have to put up with not knowing and keep taking the meds.
Hi again. Can you speak to surgery on phone and ask for a GP to call you back outside of surgery time explaining results etc. if you explain your working situation and last couple of days problems I should think it's the least they can do! Hope so.
I've given you a detailed response on the other post - but here I want to say that I think you need some time off work. Above all since 3 hours commuting a day when you have a serious illness is really not a good idea and when you are taking pred even less of a good idea.
Much of your response is almost certainly to being overwrought because of all those factors - plus fear. Your GP probably was having a bad day - and frankly given the pressure dear Mr Hunt has put the entire NHS under it is hardly surprising - and while that is also not right you have probably reacted because of the lot put together. That the occasional patients needs 15min rather than 10 is fair enough - but maybe you were the 4th in a row who needed/wanted that extra 5 minutes. What would you have been saying if you had been the next patient and having to wait - maybe they had a bus to catch to get home and if they missed it there would be an hour to wait? There are many many unknowns in our NHS life and both sides of a consultation can feel upset as a result.
But please read my other response - and tell me if I missed anything!
Thank you PMRpro you are so right. Mentally I had worked myself up to meltdown. The GP did talk to me about this and offered sleeping pills. I was a bit reluctant. She sai you don't have to take then every night just when things get too much and a good night sleep will help you. Well I took one last night and slept 11 hours! That's a normal 3 or 4 days worth of sleep for me. And I woke up refreshed and feeling much more able to fight this illness. Thank you for your support.
Thank you PMRpro, yes feeling much better thanks. I took my husband along to GP, it is hard on him to, he sees me falling apart and feels helpless. I have found some great podcasts for us both to listen to. They help him understand what I am going through and help me to know how I feel is " normal" and I am not losing my mind. I have also joined the PMRGCAUK charity and look forward to their newsletters. So in a much better state of mind now,
The northeast of England PMRGCAUK charity has a booklet with info for their members but it is also available for purchase by non-members. They also have a DVD called "You are not alone", made by patients, physios and doctors, which is to explain to you and friends and family (and GPs) how PMR and GCA affect us. Details can be found on their website.
Don't fall into the trap of thinking you can "fight" PMR. The happiest PMR sufferers are the ones who accept this is the way it is and learn to work round it until it goes away. Being angry or fighting to continue a "normal" way of life uses energy you can use much more profitably elsewhere by adjusting things a bit.
A simple example is stairs or the lift? Yes, the stairs were better pre-PMR - now the lift is preferable because that leaves you more to walk around the art gallery, museum or shop you are visiting. Using online shopping saves you the hassle of traipsing around the supermarket - so you can go for a walk along the seafront/canal/cliff path.
Wallow away, you are very justified in feeling angry and upset! Just remember we are all thinking of you and are on your side - wish we could all turn up together with you, that would give them a shock!
Not good enough. Some of these GPs have a huge cheek, don't they? They like taking the substantial amounts of taxpayers money which they receive for you and all their other patients, but some of them just don't understand that their job is to provide a SERVICE for ALL their patients. If, by so doing, they need to spend one, three or five minutes more with you, then so be it.
I think you should report your GP to the Head of Practice or Practice Manager or, if she is the Head of Practice, to the British Medical Association. And do it soon. If she spoke to you in that way, the likelihood is that she does it to others too and she'll have upset them as well. We are all trying hard to get better, aren't we? The doctor is supposed to help in that process. But of course English people don't like complaining! Take someone strong with you if you need to, and above all don't be timid.
And yes, most of us now suffer with not being able to get an appointment with the GP easily. That, too, is disgraceful.
It only takes a little kindness and concern from your GP and the nurse who would not listen to you. Some medical people just don't seem to have the compassion to be caring for ill patients.
You are not blowing this up. You feel poorly, and need help and guidance in a very difficult time.
I am a retired RN of 37 years and have recently been diagnosed with GCA/PMR. It is very upsetting to me. It doesn't matter if I've had years of nursing and caring for others. We are professionally there to help our patients.
However, as a patient, I expect to receive good care when I am ill. Believe me, I have not always had that experience.
Whatever you can do with a support person at your side will benefit you as well as all the other patents under these doctors care.
You are in my thoughts. We need all the advocates possible with these illnesses that affect our lives so dramatically.
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