UPDATE ON HOSPITAL VISIT WITH THE FUNK

[Sophiestree]

Not sure how I feel about this, other than total frustration.

This appt was with the nurse (they alternate every 4 months I think with a registrar)

I told her about all the symptoms returning since administering TCZ fortnightly, albeit in a milder form, and then told her I had increased my pred from 3.5 to 5. She said no, you mustn’t do that blah blah blah

I just looked at her and asked what she wanted me to do ?

She then proceeded to examine my shoulders and hands? Not sure what that was about as that has never been an issue for me. And kept mentioning GCA. I then said to her – you do know I don’t have GCA, rather LVV which starts from my Aorta, hence the awful pain and not being able to eat. Yes, yes, she said, it was just easier to say GCA!

She left the room and came back with a different story. Told me to go to 10mg for 10 days, 7.5mg for 10 days and then 5mg by which time I would have another appointment. That she would refer me to a panel to see if I can get the further 6 months of TCZ, but to warn me that they did this with another patient and it was declined.

I am now on day 8 of 10mg and certain things have slightly improved, but the tension and stabbing pain in my head not so much, nausea much the same and neck issues remain.

I saw a physio at my GPs surgery who thinks my back issues are because I twist my right hip forward. I don’t know, but the pain is pretty awful. Not sure how I have suddenly done this any more than I did before. She has referred me to physio at the local hospital, so let’s hope this will be in person, as the ones I had 18 months ago were on the phone. Not sure how you can tell on the phone, but hey.

Here is what I think I will do, so would appreciate any thoughts on this. I will wait to see if I am indeed approved for a further 6 months of TCZ and accept that and stay where I am doing my own thing re tapering the pred and then revisit after the 6 months. If I am declined then I will either make a private appointment with Rod Hughes in the hope he would take me on through the NHS or somehow try and find a way to get to see Vanessa Quick at Luton and Dunstable, which would be my preference, but as I mentioned before, my GP didn’t seem to think they could specify consultants.

Oh, and I had to have a TB blood test, again….. it is particularly prevalent in the area of this hospital so I am guessing they have to tick boxes along the way…. sigh

[PMRpro Ambassador]

Interesting - Christian hasn't bothered about the TB risk for me. He was going to as OH had TB in the 1980 (we discovered a few years ago!) so I could have latent TB.

Yes - I get the hands being poked at for pain which seems pointless as I have never had any joint pain as such - my hands hurt like hell but they hurt all over when I use them, not a particular joint.

So does she tell the GCA patients the same - only half are going to ever be off TCZ entirely. If patients have LVV, why isn't TCZ approved - patients with Takayasu's get it, I assume because of the risk to other organs and you'd think that was the case with LVV.

Too early for us - Christian reckons the cost of TCZ will fall dramatically soon as it comes out of patent. Humira was the same price as TCZ until fairly recently, down to 800 euros a year now. I said, I'd pay that out of my own pocket.

[Sophiestree in reply to PMRpro]

Well as you say, if it was 800 euros or pounds I'd definitely buy it, but £12,000 is beyond me unless I take it from my pension....

Not sure how quickly I'll hear which is frustrating. Even if it didn't get me off pred it certainly helped me get to 3.5. I looked at my excel document. The last time I was on 10mg was 14 months ago...

[123-go]

When the consultant rheumatologist came in to see you did he check the bruising caused when you banged your head against the wall? 🤦🏻‍♂️

[Sophiestree in reply to 123-go]

Brilliant. That made me laugh out loud!

[tempusfugi in reply to 123-go]

When I read about the bruising on the head, my immediate thought was 'What? She's banged her head as well. Poor woman.' Then realised what I'd just said and lol, as they say😂

[123-go in reply to tempusfugi]

Stranger things have happened 😂😂.

[Sophiestree]

Oh sounds like my conversation... I have never had a problem with my hands that I remember. A doctor checked my fingernails pre diagnosis, but that's standard and I totally get that.

I didn't have the luxury of seeing a consultant... never have since diagnosis.

[123-go]

Hi, Sophiestree. Apologies! Thought I'd actually replied to your post!

If I were you and had enough Pred I would be guided in how I taper depending on my symptoms.

If you can get to see Rod Hughes that would be great. You need a specialist rheumatologist's input with LVV.

In my opinion a telephone consultation with a physiotherapist may be acceptable only when a firm in-person diagnosis has been made.

If you are dissatisfied with the way in which you are being treated you have the absolute right to complain. This is best done in writing to the surgery/clinic through the practice manager/PALS at the hospital.

Good luck!💐

[PMRpro Ambassador in reply to 123-go]

"In my opinion a telephone consultation with a physiotherapist may be acceptable only when a firm in-person diagnosis has been made."

My physio here is horrified at the idea of telephone consultations! So is my GP if it comes to that - and she has started prioritising the patients who turn up to the surgery, it is still turn up and wait here. She is as fed up as I am of our conversation being constantly interrupted by people ringing to demand a prescription for something - including antibiotics for a self-diagnosed illness. Hilarious one yesterday - someone's cholesterol was 330 so even I would consider accepting a statin there, this dear person was taking some "tincture" from heathcare style shop and was sure it was her thyroid that was causing the problem despite all the bloods being normal (there is a link between thyroid and cholesterol) and wouldn't listen to the GP, just wanted the script ...

[Sophiestree in reply to PMRpro]

I fail to see how any physio can tell what is wrong by a phone call. This is more than just throwing my hip out as it goes down both legs but is not consistent.

Right now I am in a quandary as to what to do with the pressure in my head. I am on day 9 out of 10 of 10mg but the pressure seems to be increasing rather than easing up.

I know that if I go anywhere (my local eye hospital is closed at the weekend along with ambulatory care) they are only going to tell me to increase the pred, so am debating whether to just do that and not bother with talking to anyone or go to A&E or Moorfields. It's whether to take an extra 5mg or more?

[Seacat30 in reply to Sophiestree]

My Physio phonecall was only a first 45 minute session to try to work out whether there was any hope that he could help me if he called me in for a physical check. I got a proper examination 2 weeks later.

[Miserere in reply to Seacat30]

I had telephone appointments with a physio after knee damage - probably about 10 of them and he emailed exercises. Later on I asked to see the physio as I knew he visited the surgery every week. The GP did everything to discourage this and took ages over doing it so other patients had to wait. However, I did see him and he referred me to the physio department at the hospital. You get there in the end ... it just takes patience.

[marionofnorwich in reply to Seacat30]

It was a physo phone call during lockdown that diagnosed my PMR - an astute physio it turns out (or good descriptions

[PMRpro Ambassador in reply to Sophiestree]

You know the answer don't you!!!!

[Sophiestree in reply to PMRpro]

You mean regarding the pressure in my head? I have decided to go to A&E. Purely so that it is on my notes more than anything else, otherwise i would just up the pred

[PMRpro Ambassador in reply to Sophiestree]

Take 2 or 3 books with you! Actually - I'd try more pred first to see if it works - then go ...

[Sophiestree in reply to PMRpro]

Ah interesting, I was only thinking of going so that it is in my notes to add to why on earth can't I have TCZ!

If I'm on 10 now would you do an extra 5 or an extra 10.... things seem to be getting worse today more than any other day.

[PMRpro Ambassador in reply to Sophiestree]

You don't have to tell them you raised it off your own bat! Try it and then go to get permission if it helps. And try both, if 5mg doesn't work enough, try 10mg and then turn up with the problem.

[Sophiestree in reply to PMRpro]

Yes, I have just had an extra 5mg, if still bad this evening I'll try another 5 and assess tomorrow

Would rather wait until Monday if I can and go to Ambulatory Care rather than A&E, they are the best place for efficiency

[PMRpro Ambassador in reply to Sophiestree]

Weekends in A&E aren't ideal - especially these days ...

[Sophiestree in reply to PMRpro]

Yes, that's what swayed me to try an extra 5mg... not that much improvement so far... but will see how it goes. If I can go to Monday it will be easier....

[marionofnorwich in reply to Sophiestree]

I would go to A&E as you get fast tracked expert examination. Recently my OH had dizzy spells and within 24 hours he had had full tests, a CT scan and a consultation with a neurologist, all of which were fine but he was reassured and if anything had been wrong it would have been caught immediately. I had acute and unbearable knee pain in May (think hammer blow and I am not a woos), got referred for an Xray on May 11th and it happened in September and now know I have osteo-chondral damage. I am against skipping the queue and overloading A&E but honestly, it is working much better than primary care atm

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

ditto to PMRpro’s reply😊

[123-go in reply to PMRpro]

Does your surgery not have designated telephone extensions for appointments, prescriptions, test results, etc? I, too, would be fed up with constant interruptions while speaking to my GP (have I misunderstood?).

Oh for a cure-all tincture!😂😂

[PMRpro Ambassador in reply to 123-go]

No - it is the GP and no other staff. It actually works extremely well - or did until Covid and lockdown! I have access to results - she is a medic, nothing else, all tests are referred to the hospital and we are encouraged to pick up our printed results from the department or download blood tests ourselves if we want them before seeing the doctor. All rural practices are like that unless a spouse works with the GP to do the boring admin stuff when they are the Community Doctor who does the testing for driving licences, Blue Badges and so on. But we are supposed to call after open surgery is finished and to be fair, I was there the other day after 11am. But she is there and available until the last person leaves, then she may lock the door to do admin. But when I call, it is her I speak to, no fighting with a receptionist, and if I need to see her all I have to do is turn up and wait, seen same day. That has actually improved since lockdown - they will always try by phone first in the hope so the waits tend to be shorter.

[123-go in reply to PMRpro]

The benefits of being a patient with a small practice! Mine has well over 6,000 on the list with two GPs. There is a nurse practitioner for vaccinations and healthcare assistants for ear syringes and routine health checks, etc but still a hefty load.

[PMRpro Ambassador in reply to 123-go]

It is - legally they are assigned 1600 patients max I think but for a while the guy in this village had 2500 because there was no choice. Then they had a new position - but he wouldn't give up his excess patients so the new one was undersubscribed. It's balancing out now as he gets no new patients as they move in. And he has lost a few hundred in the last few years - anyone over 75 who dies was under his practice! My GP is in the next village and it means using the car - there is a bus but it would take you all day to get up there and back! But she and the second practice in my village share computer access to each other's patients so if desperate I can go to the one down here.

[123-go in reply to PMRpro]

What an organised system! Benefits everyone.

[PMRpro Ambassador in reply to 123-go]

I like it - and I know I can see a GP same say without a fight. There is an OOH service at weekends, one doctor is on duty and most of the time they are good. There is one disaster amongst them but hey ho! He shouldn't be a GP at all ...

[Miserere in reply to PMRpro]

Lucky you!!!!

[Rottsuzi]

hi , you sound exactly like me it’s all my neck feel nauseous and pain back of my head they sent me for a neck X-ray and they said early wear and tear at a number of levels, what does that even mean 🤷‍♀️

It’s a terrible rollercoaster ride up and down medicine all the time and trying to figure it out on our own , my last rheumatologist nurse said I pulled a muscle definitely not she sending me to physio on Monday so we shall see

Hope you feel better x

[PMRpro Ambassador in reply to Rottsuzi]

"they said early wear and tear at a number of levels, what does that even mean"

At a guess your discs - several of them - are a bit "run down", normal with aging, but not yet severe. They talk about "at the level of ..." and insert the letter and number for the relevant vertebra/e

[Rottsuzi in reply to PMRpro]

this letter came from the nurse with 30 yrs experience , I think she’s looking for a neck problem to say I don’t have pmr but this pain is not a pulled muscle or slept wrong, they just don’t listen , like I told her I have lumps behind both knees and the X-ray proved no damage to my knee like I told her I haven’t done anything to damage my knee so now waiting on mri

Thank you for your info x

[marionofnorwich in reply to Rottsuzi]

When you say lumps behind both knees, do you mean like fatty/issue pads? I have those, especially bad on one side and GP said it was muscle but I don't think so. It has dissipated a bit now as the steroids have reduced but assume it is like moonface but behind the knees. I have also had extreme knee pain over the last few months and very stiff legs. Hard to tell what is PMR and what is mechanical. However a recent Xray has shown that I have osteo-chondral damage, which I am pretty sure is caused by stiff muscles in my legs

[Rottsuzi in reply to marionofnorwich]

they think it may be bakers cyst but I have it on both knees and it can be sore I’m waiting on mri

[Sophiestree in reply to Rottsuzi]

Well I am glad they didn't go down that road with me.... I am more than able to tell the difference between when I have neck pain to when I have pain in my neck from the inflammation.....

[Rottsuzi in reply to Sophiestree]

exactly I think I know the difference and when I do get the headache is a terrible pain and I’m violently sick with it but they don’t want to listen so she just keeps sending me for all these tests

[Sharitone]

How can they refuse treatment that is keeping your aorta healthy? If your rheumy amended you diagnosis to Takayasu's, it wouldn't be the first time.

[Sophiestree in reply to Sharitone]

Yes, unfortunately they class Takayasu as a younger persons diagnosis, not someone of my age, even though I come between the two - Takayasu and GCA..... very frustrating

[Sharitone in reply to Sophiestree]

But the rheumy could be a bit creative, couldn't he?