Hi Yet Another Update

[Wonderfullifeandmore]

Good morning, yes another update quick recap, awaiting blood and X-ray results before staring MTX. Yesterday the rheumy’s secretary emailed me as follows. Bloods ok. X-rays ok to start MTX chest X-ray clear showed no lesions. WHAT I didn’t have a chest X-ray I even asked the radiologist a chest X-ray hadn’t been requested. I have me mailed her and requested copies of my blood results and X-rays for my records.

I then rang hospital to see when my appointment in respiratory clinic, was told around December as long waiting list unless my GP has fast tracked it. Back on phone to GP surgery by this time I am exhausted and tearful. After much ado the GP has asked for a CT lung scan just see how long I have to wait for that.

I am not going to start the MTX until I find out what my lungs are like as I’m still breathless.

The Methylpredisolone injection of 120mg is keeping things at bay at the moment. I have lost the hair of my arms and my skin is peeling on one arm, I’m hoping this is one of the side effects.

I am still feeling very low in my mood and my euphoria in finding my new Rheumie who happens to be a professor has somewhat fizzled out since the X-ray saga.

Your feedback would be much appreciated.

[PMRpro Ambassador]

That is very naughty and suggests they may be mixing up patient's notes, It requires a formal complaint really - because it needs investigating. I KNOW the NHS is under stress - that isn't acceptable though, A call to PALS sounds on the menu ...

[Wonderfullifeandmore in reply to PMRpro]

Hi PMRpro, Even more shocking this was a private rheumatologist I paid a lot of money to see. His secretary is the only way I can get to him and she doesn’t come back to me promptly or answer all of the questions I put forward. Quite honestly I am at my wits end with it all. He is the second private rheumie I’ve seen as the previous one was no better. They also are working for the NHS. How can I trust him? This is why I have requested my blood and XRay results sent to me. I really am at the lowest with my mental state as I feel as though I’m climbing mountains and getting nowhere. Thank you for listening.

[PMRpro Ambassador in reply to Wonderfullifeandmore]

Not good enough, I suppose the GMC comes in there. We do say, check here about a possible private option, You might as well pay for someone competent.

Where are you?

[Wonderfullifeandmore in reply to PMRpro]

hi. I have just emailed his secretary quite sternly and said this is unacceptable I want all of my results asap sent to me. I also want an explanation from Prof El-Miedany.

I am based in Gravesend. Kent.

[PMRpro Ambassador in reply to Wonderfullifeandmore]

Kent really is hopeless!

[Wonderfullifeandmore]

yes after my experiences I agree.

[SheffieldJane]

Good for you standing your ground!

[RachelJDH]

I really sympathise- it is surprisingly stressful. I have not had one letter from my rheumatologist that hasn't had an error in it E.g. dated 2 months previous, I receive all the copies instead of one going to my GP etc.. A bit more care and checking I think in the admin depth. 🤦‍♀️ good luck.

[Missus835 in reply to RachelJDH]

Never had a letter ftom my Rheumatologist. Even in her office there is no feedback. You give her the new symptoms if any. She types them into her computer and that's it. No talk no feedback unless I need a new Rx. She writes it. Finally got a recent ct scan as debilitating muscle spasms have kept me down for over 2 months when it began with low back pain. Need a MRI but she opted for ct scan. We shall see. Of course it will be a month before I hear.

[Wonderfullifeandmore in reply to Missus835]

whatever happens these days it makes you feel just like another cog in the wheel no personal touch at all is there.

[Missus835 in reply to Wonderfullifeandmore]

Sometimed I feel she just doesn't have the answers.

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

Perhaps she doesn’t…. bodies are very complex -the answer isn’t always simple.

But her tardiness could be improved.

[Missus835 in reply to DorsetLady]

She has been late for every visit by at least half hour, so not surprised. Yes...complex issues going on right now. Also made sure ortho surgeon was copied on the report from this ct as he was comparing to older ones.

[RachelJDH in reply to Missus835]

Awful - very little support - this is very depressing but to be honest I have found more support on this web site than from the NHS. I cannot understand what is going on with them it cannot all be the governments fault. You are doing well to keep it all together.

[PMRpro Ambassador in reply to RachelJDH]

It is a mixture of factors but above all it is because in the UK it isn't widely known about amongst HCPs (healthcare professionals) other than rheumatology staff and unless they are in a PMR specialist group like the one in Leeds they tend to be very RA orientated which they perceive as far worse than PMR which they think is managed as soon as you start the patient on pred and then they are back to normal and all there is to be done is taper off the pred slowly to zero and everything is fine. The experts know that PMR isn't a benign and short lived problem - but they are few and far between,

In relation to the NHS, it is the government's fault in terms of austerity. They have had next to no pay rises for the last 10 years and many have left to find better paid jobs - who wouldn't? But unlike business, they can't find a better paid job outside the NHS which is where their skill sets are used. As a result, they are short staffed and so they concentrate on putting out the fires rather than helping the others who aren't on fire, Instead of ongoing and regular care to monitor how you are doing, you are at the bottom of the list for appointments, a review appt is cancelled because there isn't a doctor available and it will be months before one is reinistated. So there is pressure to get rid of patients who they consider don't really need specialist care - PMR isn't life-threatening, doesn't cause longterm damage, just get off pred as it is a problematic drug that they are afraid of.

And so it goes on ...

[Missus835 in reply to PMRpro]

Sadly yes.

[SheffieldJane in reply to PMRpro]

Upon reading this it struck me that you really did me the most massive favour in putting me in touch with Dr Sarah Mackie ( Leeds) My experience has been utterly different and has transformed my experience of PMR and GCA/LVV. She is accessible, patient centred and above all really understands our conditions. If she can manage to shine under current NHS constraints, why on earth can’t others? I just want to reiterate my heart felt thanks for your dedication , knowledge and help in this difficult journey. I know this is an old thread but I was feeling so sorry for “It’s a Wonderful Life’s “ dismal experience and subsequent depression and going back across posts. But for the grace of god and you go I. Thank you. !!

[PMRpro Ambassador in reply to SheffieldJane]

Same here with Christian. I did suggest to them that a sort of virtual specialist panel for medics to access when unsure would be good but it would have to be sold the right way! That it was a desirable thing to be part of because they do tend to be rather "I know it all ..."

[SheffieldJane in reply to PMRpro]

More power to you always! 🌹

[PMRpro Ambassador in reply to SheffieldJane]

She is horrified at some of the tales of woe ...