I'm in a total funk

[Sophiestree]

And need restraining from writing a snotty letter to my Consultant, who I have still yet to see face to face.

I had the only positive appt on New Year's Eve with Chris Wincup who has since left for a consultancy at King’s College who advised me at the time that my TCZ would be renewed for a further 12 months due to covid etc. and agreed with my DL slow taper.

The renewal happened and Lloyds Homecare confirmed it would expire in January 2023. Lo and behold, my consultant stopped it in August, so an additional 6 months rather than 12. Told me to go to fortnightly injections to stretch out what I had left and that I should be on zero pred by Dec.

Well, ha, that has not happened. After about 3 weeks I went downhill to the point where I felt I was as bad as I was pre diagnosis. I was scared to eat as the discomfort in my breastbone (I guess as my inflammation starts at my Aorta) was so bad, that I just had a liquid diet for 2 days and slowly introduced other food. Since then I just feel general malaise, tension in my head, but not headaches, the same aches in my shoulder blades and as per my post title, I’m in a funk. I don’t even do my usual morning ritual of getting tea and sitting in bed and read all the post on the daily digest, and if I do, even if I have an opinion, I don’t reply.

I am sick of the pressure they put on you, and my appointment, which is next Friday, will be with the nurse, who just tells me off for upping the pred when I had covid, and then told me off for still injecting the TCZ. She doesn't listen, and I just want to cancel it as I think it will tip me over the edge.

Sorry for the rant, I know there is nothing you can do, but just wanted to explain my absence.

This site has kept me going from the very very start. What on earth would I have done had I not found this place at the beginning.

Oh and I am reducing at the moment from 4 to 3.5, and the pain in my right hip/back is at level 7/8 where before it was a steady 3.

[herdysheep]

If I was in your shoes I would be wanting a rant too!

I don't think I would be tapering given how you feel and I would be chasing an appt with someone other than the nurse! Easy to say, and less easy to achieve - but a sense of solidarity😊

[Sophiestree in reply to herdysheep]

Solidarity! Love that and that, thank you so much.

[DorsetLady PMRGCAuk volunteer]

Not good enough, and you need to discuss with consultant not nurse, and as herdysheep says no more reducing....

.. if you do HAVE to see nurse and she complains about you upping Pred, just tell her you wouldn't have to if she didn't keep causing you unnecessary stress - which of course (as she well knows as the expert) affects your illness!

[Sophiestree in reply to DorsetLady]

you know, I think they're all clueless and just go by a script.

wondering whether to try 5mg and see that changes anything.

thanks for the reply

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

Always worth a try - hope so.

Yes they do go by script, but sometimes they do need reminding PMR doesn’t read it! Perhaps not as sarcastically as me though 🤨

[Sophiestree in reply to DorsetLady]

That's a hard one... I'm just good and mad right now and need to calm down a bit.

[ChrisinNam in reply to Sophiestree]

Sounds to me like you need a bit of the old "jump up and down and wave your knickers in the air" on the consultant's desk! Sometimes we have to get mad at them.

[DorsetLady PMRGCAuk volunteer in reply to ChrisinNam]

Well if Sophiestree could do that -they’d definitely reduce her Pred-can’t possibly have PMR! 😳

[Sophiestree in reply to DorsetLady]

Ha ha - so I don't have PMR - rather LVV, but still not sure I have the strength right now to jump up and down at all, sadly.

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

...Sorry my error, but if you could do what is suggested by ChrisinNam there's no way you have any of our illnesses!😀

[Sophiestree in reply to DorsetLady]

I know, hilarious, if only I could.

[Sophiestree]

*if that changes anything*

[Rugger]

I'm sorry to read that you're struggling at the moment. It's worth trying 5mg to see if it helps.

Most of us had to stop TCZ at the end of March this year, as that's when the NHS Covid extension ran out. I don't know how Chris Wincup could have promised you another 12 months. However, it is disappointing when one doctor says one thing and the next one contradicts it. No wonder you are upset.

I stretched out my last few injections, but when my TCZ 'ration' came to an end, Sarah Mackie started me on Methotrexate instead - nearly 6 months in and I'm not as well as I was on TCZ, but it did enable me to get to zero pred by May this year. So I'm on MTX alone and we'll see what happens.....

We've missed you - let us know how you get on. 🌹

[Sophiestree in reply to Rugger]

Thank you... I've been ranting out loud all day. Lucky I live alone!

I'm not a candidate for Methotrexate because of liver issues. Great you're on zero pred....

[PMRpro Ambassador]

Don't blame you for ranting. If I were you I would be seeking a better medical team. And I would write that snotty letter - the state you are in, you need to see a DOCTOR not a nurse. I don't see you could be much worse. I would consider the doctor/patient relationship had broken down and would at least write to PALS. Is the said consultant the head of department? If not, cc the head of department, if so, cc the CEO.

Give her a copy of the Sick Day Rules having highlighted the Covid page. WHY did she tell you off for still injecting the TCZ? Better that than wasting the doses in your fridge. You can't hand them back.

Even with just GCA, half of patients in the clinical trial did not get off pred entirely and GOOD, well-informed healthcare professionals know that. The reason is because there are at least 3 mechanisms causing the inflammation in GCA, TCZ works on only one because biologics only work on one thing, very specific. If you aren't aware of that - you shouldn't be using it on an uninformed basis.

[Sophiestree in reply to PMRpro]

I will compose something and revisit over the next few days.

I think if I attend my appt on Friday with the nurse she'll get a big shock.

I've just take 2mg of pred and your flooding dose of ibuprofen, the pain in hip is exhausting.

TCZ clearly did something now I notice my symptoms so much more since alternating the weeks....

I think a new view on it is the to go as they seem so hell bent on this course of action.

[PMRpro Ambassador in reply to Sophiestree]

I'd be hell bent on leaving them!!!!!!

[Sophiestree in reply to PMRpro]

Ha! Yes...

I just need to make sure I go to right place...

[Nagswoman in reply to Sophiestree]

I moved to "the right place" recently and what a difference...

[Sophiestree in reply to Nagswoman]

That's great to hear, where are you now?

[Nagswoman in reply to Sophiestree]

Luton&Dunstable. Dr Quick.

[Sophiestree in reply to Nagswoman]

oooh... maybe that's a sign after PMRPro mentioning her too.

Could you request her?

Just wondering how you got to see her specifically.

Luton is an hour on the M1 for me so totally doable.

[Nagswoman in reply to Sophiestree]

I discussed it with the GP of the day. He said that I had to write to PALS at the old one and the potential new one. It only took about 3 months to get transferred.

[Sophiestree in reply to Nagswoman]

PALS of both hospitals?

[PMRpro Ambassador in reply to Sophiestree]

Your GP can request a referral to a named consultant - it may work though they will try to dissuade you by saying they can't.

[Sophiestree in reply to PMRpro]

When I asked her early on she said she couldn't write re a named one only Book & Choose and therefore the Hospital Dept.

I need to find something to show her to say can do directly.

[PMRpro Ambassador in reply to Sophiestree]

I'm sure there is something on the websites - and I think the doc can still write to a named doctor asking advice. I'll try and find it

[HeronNS in reply to Sophiestree]

Hard though it will be if you decide to keep that appointment, don't try to make yourself feel much better on Friday. You want her to see what the changes in your doses have been doing to you. Good luck with whatever you decide. 🍀

[Hidden]

I feel angry on your behalf and wonder if there any other Illnesses where patients are told to stretch or ration their medication, take an alternative that doesn’t suit them, stop taking it when still in pain, denied it when it’s proven efficacious and given conflicting advice from every medically trained person they are lucky to be in contact with. 😖😤😡

[Sophiestree in reply to Hidden]

So true.... thank you for the support.

[MamaBeagle in reply to Hidden]

I'd say unlucky to be in contact with 😏!

[Sophiestree in reply to MamaBeagle]

Ha ha

[Hidden in reply to MamaBeagle]

🤣

[Wallysma in reply to Hidden]

Stillsdisease and Sophiestree,yes...pain medication in the US....and I can tell you the results are awful. It is traumatizing. Sophiestree, I am so sorry you are going.through this. It sucks when people who.are paid to take care of others don't do their job and don't care about the results. You have great advice here....5 mg pred....and write the letter. I did that and if nothing else it made ME feel better. And documentation is not a bad thing either. Good luck...take good care. I hope you get some relief...the hip and back pain is all consuming! Be well.

[Sophiestree in reply to Wallysma]

thank you so much, that is really kind

[Sharitone in reply to Hidden]

If someone were to organise a march in support of it, I would hire a scooter and come!

[Sophiestree in reply to Sharitone]

Love it!

[Abbeynan82 in reply to Hidden]

Yes there are other illnesses which are not handled well. My husband recently died of one, of mismanagement. I think you could write to the Practice Manager asking for a review of your case, stating your complaints. Then you could write to your Consultants, all of them , asking for a review and a second opinion. On paper. They then have to deal with you. Your 5mg is probably way too low. Letters can be heated but not snotty. They should be scathing! Don’t leave it too late. Complain mightily and they have to pay attention.

[Jackoh]

Take deep breaths- compose and write the letter, even if you don’t send it - yet! When you see the nurse perhaps suggest that you record in writing / phone all that she has to say as you are in the process of making an official complaint- maybe she will be careful therefore what she says.

After you’ve had time to calm down and reassess I think I would be looking for another medical team.

Unfortunately another awful situation which has been made worse by the stress they have put you under. Xx💐

[Sophiestree in reply to Jackoh]

Yes, thank you, I think I will start it today as I have a few days to revisit it and change anything.

[PMRpro Ambassador in reply to Sophiestree]

And cc their senior - Medical Director or the CEO if the person in question is head of rheumatology

[Sophiestree in reply to PMRpro]

I will ask my cousin who the Head of Rheumatology is, she runs the Outpatients and has been very helpful in the past.

[Kafkaontheshore]

Hi. We have had a similar history (see in my bio). I stopped a year of Tox in February and got off Pred by June doing slow taper. Had a flare in June with high CRP, as rheumy said active vasculitis again. Back on 40mg Pred, then minor stroke after atrial fibrillation. I asked for a second opinion at Imperial (Hammersmith Hospital). Great rheumy who heard my history and issues (I sent a resume ahead of OPA). Am now off Methotrexate and have started Mycophenolate. Must be tricky with liver issues but I think it’s worth seeking another view. My GP was very happy to refer me wherever I wanted. This disease is serious as you well know and we need to access best possible advice/treatment for ourselves. Good luck 🤞🏻

[Sophiestree in reply to Kafkaontheshore]

Wow, I have just read your "walk to the mortuary" line, that is unbelievable. I suspect when he rang again to say go back up to 40 mg you were too ill to remind them of that hideous statement. Who do you see at Hammersmith now Prof Justin Mason is no longer with us?

[Kafkaontheshore in reply to Sophiestree]

hi. Sorry I notice my bio not up to date but I have large vessel vasculitis and am keen to avoid an aneurysm etc!! I saw Dr James Peters who was very good. Planning to scan my blood vessels again in due course which is good. May also try to get me back on Tox if needed as that helped a lot. Take care

[Flivoless]

I think snotty, very snotty, is certainly in order, plus a complaint.

[Sophiestree in reply to Flivoless]

Ha! Yes. I need to write it carefully!!!

[borednow]

Excellent advice on here. Letter to Consultant, your GP and copy to PALS. Take it with you when you visit Nurse - I think she needs reminding she is neither a GP nor a Consultant. Be really nice but very very firm. That should, at least, confuse her. It does work. Good Luck.

[Sophiestree in reply to borednow]

I suddenly realised thinking about it, that the appointments are always on Fridays, so I have seen either a registrar or the nurse (this alternates on each appointment which are every 4 months). The consultant I am under does not work on Fridays, so I will never meet her. She only works Mon-Wed. You couldn't write it really could you.

[PMRpro Ambassador in reply to Sophiestree]

They need to be brought up to speed with their junior staff's abilities - or lack of them!

[Sophiestree in reply to PMRpro]

I think I pasted a previous letter from one of the registrars who stated I said I was fit and well...

[PMRpro Ambassador in reply to Sophiestree]

If you were fit and well - it begs the question as to why you were there!!!!!

[borednow in reply to Sophiestree]

Sadly, I think you could write it. Over and over again. Definitely letters required (and posted). Onwards and upwards ............

[SueMacD]

Sorry to hear you are struggling, I would definitely write a letter to your Consultant. It’s the only way, these days, to be taken seriously. Start with your snotty letter, re read it the next day and maybe take out some of the snotty but definitely make it a strong letter. I am sure you will get a good response. Best of luck.

[Sophiestree in reply to SueMacD]

This is always the advice I give to people at work. Write the letter to yourself, leave it for 24 hours and revisit and take out the anger/emotion and leave it with powerful statements.

thank you

[Viv54]

I know exactly how you feel I was pushed from one Consultant to another , they all had their own take on what I should do , two of them looked bemused and said "Just carry on with what your doing " the other simply looked round the room while I was talking, he acted like I wasn't even there and told me to come back in 6 months ! I told him id had enough and that there was no way id be back to see him. I don't actually believe in going private, but I now know when your desperate because of feeling anonymous and totally disregarded I went for it. Did loads of research went back to My Gp to be fair she has tried in her own way .I got a referral letter off her and then rang for an app.To say I almost cried is putting it mildly !For the first time this wonderful man knew what help I needed and respected my illness, he listened to every thing with genuine concern. This was 5 weeks ago and so happy to say I feel so much better, he's not a miricale worker but he's got me on the right track to getting better again , I was almost giving up hope ! I have not gone into details of my treatment as we are all different. I would say if you can do your homework and find the right person for your needs.It's the best £250 I've ever spent ! Good luck 🌹

[Sophiestree in reply to Viv54]

That is all you need isn't it. Someone who listens to you and gets it. I would happily pay for a private appointment, but unfortunately couldn't necessarily continue on that route as I have had to stop working bar the odd day here and there, and with this recent 'relapse' have cancelled everything I had, albeit only a couple of days a month. It's getting the right one isn't it. I am definitely open to that though, and considering Rod Hughes, just need to find out if he is more PMR than LVV/GCA. Charlotte Wing at Watford General, Max Yates in Norwich, or even Hammersmith, but not sure who is good there. They are all trips for me of up to 2 hours, but more than happy to take them.

[PMRpro Ambassador in reply to Sophiestree]

Rod is just a good doctor whatever - and that is what matters more than PMR/GCA initially. A good GCA option is also Vanessa Quick at Luton & Dunstable (no private) - she wrote the Kirwan and Quick paper, was VERY well trained with him with regard to PMR and is now very into research in GCA.

[Sophiestree in reply to PMRpro]

Oooh, Luton is about the same time, just in a different direction.

I don't want to take up everyone's time on this, but one question before I carry on, I am due to have a parathyroid gland removed and am also under Endocrinology for this at the same hospital. Would this affect anything if I moved away from their Rheumatology department. Or am I better off waiting until after the op. Mind you who knows when that might happen. All I have had is pre-assessments and 24 hr heart monitor. No actual date yet.

[PMRpro Ambassador in reply to Sophiestree]

They are different departments, shouldn't make any difference as long as you keep notes of results and stuff for your benefit.

[Viv54 in reply to Sophiestree]

I hopefully did it as a one off , I then went back to My GP, who wrote me a prescription , I could not sustain it all the time .I've heard good things from people on here that have seen him, sadly where I am in the South ,they are very flaky , finger crossed , mine was over 50 miles away but worth the journey 🌹

[Tiggy70]

Hi Sophiestree, So sorry to hear that you are having additional stress on top of your illness. TCZ was readily available to hospitalised patients who needed it during the height of the Pandemic. You need it now. Being denied just adds to our anxiety and worsens our condition. I do hope you find someone soon who will listen and help you. We are all here for you x🌸

[PMRpro Ambassador in reply to Tiggy70]

Its use in Covid was a single administration - not weekly ongoing. It is available in the UK for RA patients ongoing - but the fundholders haven't approved it for PMR/GCA like that.

[Sophiestree in reply to Tiggy70]

Thank You. That was why I was so confused I was 'told off' for both upping the pred and still injecting the TCZ when I had covid back in April... who knows what goes on in that department.

[Sophiestree]

Pleased to hear that the infusions are working well for you. You definitely deserve positives in your health journey. Many years ago my mother had something called an x-stop which basically cemented her vertebrae. Scary stuff when it is your spine.