Having been seen privately by an eminent rheumatologist.......a leading authority in the field of PMR/GCA, since my diagnosis in May 2019, I decided to change to NHS care, as weirdly there is much more support available in between appointments when you're under the NHS than as a private patient!
I had my first telephone appointment this morning and although it wasn't with the 'big man' himself, it was with another consultant rheumatologist from the 'big man's NHS team. What a revelation!
I spent a good 40mins discussing all my issues and concerns (usually I've been lucky to get 15mins!) and this rheumy clearly was listening and 'hearing' what I said as he asked me lots of questions in return and then explained that he felt my current arm and leg pains were not a re-emergence of my PMR, but fibromyalgia! Obviously I still have PMR but he felt certain from my description of symptoms etc that PMR was not the cause of the problem in this instance. He recommended amitriptyline but fully understood my hesitancy to go back on them (that's another story!) and said there were several other alternative medications I could try IF I wanted to.
It would seem I have the full support of this rheumy, who agreed fully with my decision to increase my steroids independently at Christmas after a flare, and also agreed that my original tapering regime (given to me by my original rheumatologist) was too quick and by too much.......and should only have been by no more than 10% of previous dose.....as we all know!! He assured me that I'd be 'managed' through the lower doses to aid any adrenal issues and went to great length explaining his reasoning.
I felt confident that his recommendations were the right ones for me and I trusted his advice because he backed it all up with comprehensive and informative explanations that made complete sense to me. He also allowed me time to ask him questions when I needed to.
So, if any of you out there are feeling apprehensive or unhappy with the care you're receiving, my experience today has shown that sometimes a different pair of eyes (or ears in this case!😄) can put a whole new perspective on things. So.....onwards and upwards!
😀😀😀😀😀😀😀😀😀😀😀😀😀😀
Yes!..... what a difference a day makes!
Written by
Kendrew
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There's little information I can locate about him too, and he doesn't appear to be on the list of consultants who see private patients. Maybe he's relatively new?? He certainly has a better understanding and attitude than certain others!
No benhemp there is no link to it at all, it is held on my computer.
I compiled it over the years but only use it when some one asks if anyone knows a decent consultant and has their location in their profile. The info is shared by PM's.
It would be totally unfair, in my eyes to publish such a list.
The same Consultant could be good with someone and not so good with another. Relationships can be difficult as we all know.
Like Jinsac, I also would like a name. I am currently with 'the big man' and have felt confident under his care, but I know he will be retiring from his NHS clinic at some time.Pleased to hear you are happy.
I agree. I had a much better experience with Dr. Hughes on the NHS than I had with the previous 3 private Rheumy’s. Even appointments were longer and just as easy to arrange.After all, they are the same people- private or NHS!
Delighted to hear your news, I am beginning to understand just how critical it can be to our journey in finding someone who listens.My rheumy pushed me down from 10 to 7.5 resulting in an almighty flare two months ago, still in pain and not sure what I have,( systemic inflammatory disease she tells me ???? ) but on Friday I get the same instruction again 10 to 7.5 mg ............ would she listen ? No.
If you have found someone who hears your voice then I am delighted for you,bit like rocking horse poo really. Good luck,you more than deserve it.
Wow yes it is great if you can find a rheumie who actually knows what they are doing when it comes to PMR, but they seem few and far between and for most people it's the luck of the draw. So pleased for you and thanks for sharing
Hi Kendrew— So glad to hear that you had a chance to meet with an eminent rheumatologist and get your questions answered satisfactorily. When I was diagnosed with PMR/GCA nine months ago, I also sought a second opinion with two other rheumys who subspecialized in the disease. For one thing, their communication styles differed from my own rheumatologist—and from each other. The composite view I got from these meetings made me feel more confident that my care was what it should be. To tell you the truth, I’ve learned more from our support group than any doctor I’ve talked to. So grateful for the sharing of information on this website— including your post. Good luck!
I think the support and information I've received from this fotum has allowed me to know and recognise when I'm receiving reliable advice from a rheumatologist. I'm forever grateful to this forum too....and continue to be so. Thankyou for your response.
How good to hear, well done. im having problems with Amitripyline atm, im shock as this is a new problem for me, i didnt think you could get side affects or not many , would you mind if i asked if this was the a problem for you. Many thanks .
Hi Viv54.I was prescribed amitriptyline originally to improve quality of my sleep which in turn was supposed to improve occipital head pain I was experiencing with each reduction of steroid.
Rheumatologist at the time advised that better sleep would equate with diminished head pain.
This unfortunately didn't happen! The amitriptyline left me feeling completely 'spaced out' each morning, (even though I took it as recommended.....several hours before bedtime) as if I was in a thick fog watching the rest of life go on around whilst I tried to 'wake up' properly. I also developed even stronger head aches and constantly felt sluggish and 'out of sorts'. Its side effects were far worse for me than the symptoms it had been prescribed to remediate!!
When rheumatologist suggested I go back on it (allegedly to improve my sleep again ......even though there was nothing wrong with my sleep at this point)......I simply refused, and in doing so witnessed an angry and almost petulant response. I stuck to my guns though and glad I did as I didn't require them.
It's important to say that every medication can produce side effects but not everyone will experience them. Different people may experience some, all or none of any potential side effects of a drug but until you start taking them, you won't really know.
Depending on what you've been prescribed amitriptyline for, my new rheumatologist did say there were other alternatives I could try. Maybe you could have that chat with your GP or specialist too?
Its for my PMR pain, i find its not helping anymore, just making things worse. Thanks for your help, i will talk to my GP etc i have an appointment soon .
It isn't appropriate in PMR, it isn't nerve pain. It won't get you to a lower dose of pred - and for management of PMR, you need enough pred, there is no getting away from that.
As PMRPro said.....prednisolone is the only thing that will ease the PMR discomfort by reducing the inflammation that causes it. Amitriptyline is effective in easing nerve pain and was suggested to me by new rheumatologist because he now believes my discomfort is fibromyalgia and therefore will respond to that...or similar. It was previously prescribed for sleep issues and pain dysregulation.
What a brilliant tale to read this morning! And over the phone not face to face which is so much harder. Obviously not all reumys are on the same wavelength but I’m sure the knowledge you gained from this forum helped you. 40 minutes-wow! Clearly the NHS at its best.
Sorry though to hear about the fibromyalgia. I recall my gp saying on dx I was fortunate that I had PMR as it was treatable whereas fibro far less so.
Hi there. Yes.....I'm not particularly overjoyed at having fibromyalgia too, but I could have been diagnosed with something far worse and at the moment, it's not too bad. My step sister has had fibromyalgia for over 5years so I have an expert to call upon if needs be. 🙂
What a difference it makes when you have the time to discuss fully your symptoms and listen to treatment options which are both considered and fully explained. Well done that doctor ! I’m so pleased for you, I hope the fibro remains manageable for you too. X
I cannot fault the care I have had under the NHS since my diagnosis in January 2020 we all know it is not a good time to be ill during this pandemic but they have done there utmost to protect us as we are classed as extremely vulnerable my only complaint strangley is with my GP waiting 3 weeks to get an appointment and not being able to have my bloods done at the health centre strange they did them all last year this year I have to drive to a centre where as my doctors is just across the road from where I live just a little niggle.
Care to share his name. I am constantly changing my mind about going somewhere else, but am looking for recommendations. I am guessing you are talking about Southend which is doable for me. I don't have PMR though, rather LVV.
I think you have been very lucky. I had no support between appointments from the rheumys at my local hospital, other than being told to take paracetamol and being warned how dangerous my high dose of Prednisolone was going to be. I changed to another hospital, still NHS, promised appointments have not materialised and I have now not heard from the team there since last July!
I'm so sorry that's been your experience. Sadly I think that scenario happens much more frequently than it should. I've literally been lucky and stumbled across this more positive turn of events but it's still early days yet so I haven't taken my guard down completely yet!
I joined this group for my husband who has PMR, he was diagnosed two years ago at the age of 61, and to be honest this has been our main source of help, along with PMRGCAuk. He has never been referred to a rheumatologist, and although the doctor diagnosed him, she did initially send him to the hospital to have this confirmed. Within weeks my husband knew more about the condition than her, and she said she was happy for him to reduce his meds when he was happy to himself. This he has done, he had a bone scan and makes sure he regularly has bloods. Like most of you on here, he has had many ups and downs. He started on 15mg of prednisolone and is now down to 3mg, but what he would give to be able to have what you have, so happy for you. He has many symptoms he has to deal with from this disease, and being able to talk with a professional that really understands would be a great benefit. Treasure that support, I only wish all sufferers could get this, wishing you all the best.
The trouble is, they often DON'T understand never having had it or taken pred. One lady says her rheumy had been on pred medium term at one point - totally different attitude to pred. Haven't come across one who's had PMR yet - but I have met one who developed an inflammatory arthritis and she told me she sees her patients' problems from a totally different perspective now. Like the girl with a curl - either very very good or horrid ...
Yes, to be honest I think you have hit the nail on the head there. From talking to other sufferers at our local group, everyone’s experience has been different. My husband was so ill over Christmas, he had no pain but all the other symptoms of Adrenal Fatigue. Without going into a very long story, he eventually managed to get through to our surgery and convinced a GP that he should have a test. Thankfully the test showed all was good and they put it down to gastroenteritis!! Not fully convinced it was that, but after nearly five weeks of severe illness and over a stone loss in weight he is now almost back to his normal. I feel whatever he had was considerably worse because of his condition, just thank goodness for this site and the charity, they have been our go to places for all of our help.
I had a similar experience a few years ago. Although my GP was generally very good with my treatment, it was a locum one summer month who actually has multiple sclerosis and, as we briefly discussed, a clear understanding of living with chronic disease, who helped me deal with my first real flare (doctor-induced by encouragement to taper from 1.5 to zero and then stop, and didn't renew my prescription). She got me back on track, gave me an adequate prescription for pred, and left copious notes for the GP who always after that was definitely on the side of encouraging me to take enough pred to control my symptoms, sometimes more than I was myself....
It so interesting reading your post. The 'Big Man' you are referencing diagnosed my father 2 years ago with GCA and I can't thank him enough for his support in this. However whilst the symptoms of GCA appear to have been managed during this time my father's health has never returned to what it was pre diagnosis and we have very much now been subject to virtual quick calls where i don't feel like anyone is listening or following up. its very much been down to my GP. Maybe requesting an alternative appointment with this member of the team may prove more beneficial.Thank you.
I am also interested if anyone can recommend at good Rheumatologist experienced in GCA/PMR in the London Area/Surrey Area?
Rod Hughes, Chertsey, does NHS and private - even f2f when you saw him privately all through Covid!! He is also a delightful guy (well, I think so) and treats patients as participants in their care.
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