Absolutely Fed up!

[Coffeebeans]

Hi all

I'm so fed up with my lack of medical care. I've worked at home, shielded, since lockdown. I've had to do things differently, it's been hard but we've managed. I support schools in my role so you can imagine it's been busy.

So why can't either my GP or rheumatology do the same? I appreciate it will be different but none existent?

I've had no contact from my GP other than flu Jab since March and one phonecall from rheumatology. I then received a a letter as some of you know to put me on methotrexate - no discussion. That was in July. I've called the helpline 2 weeks ago and had an really unpleasant call with the nurse - I'm not tapering fast enough, I need to take methotrexate. I stood my ground and said no, not without a further discussion. Not heard a thing since. Left another message today ...

I've completely lost all trust in both GP and rheumatology. Thinking of asking for a second opinion in Leeds.. thoughts on this anyone? Was thinking since I'm 47 and pretty atypical it's not so outrageous an ask. Sadly I'm stuck with GP. They're not a great practice and I've had shocking experiences in the last 2 years.

[SheffieldJane]

If Leeds is reachable for you, I can highly recommend my Rheumatologist, Sarah Mackie who divides her time between Wharfdale Hospital and Chapel Allerton Hospital. She is a leader in the field of our conditions and is lovely to deal with. I have no idea if she is taking on new patients or doing much face to face. I have always found her really accessible. Send me a Private Message if you want her direct contact details.

[Coffeebeans in reply to SheffieldJane]

Thankyou, I will do x

[tangocharlie]

Not surprising you're fed up. If I remember right you're in West Yorks? I don't know what the process is but try and get yourself transferred to Dr Sarah Mackie at Leeds, on the basis she is a specialist in PMR and in particular younger people with it. Very few other rheumatologists know anything at all about PMR, includiing some others at Leeds, so say you want her. Their ignorance does us more harm than good. You will probably have a bit of a wait as she's popular.

[Coffeebeans in reply to tangocharlie]

That's right, I'm west yorks. Missed the last catch up but hopefully see you next time

Since my earlier rant I've had a call back and whilst had a really useful call, the main jist is 'be on your head is it' if I have side affects from the pred. 😒

[piglette]

I actually last saw my GP face to face in April 2016, so you are doing well. Thank goodness they have not contacted me to go onto Methotrexate although my GP is all for Alendronic acid so I have the occasional argument about that. The surgery hardly ever contact me until recently when they received a letter from my recent stay in hospital and my GP actually phoned me and seems to have leapt into action. I normally have to contact them and arrange my own blood tests etc. As the others say if you can get transferred to Sarah Mackie that would be great for you. I gave up on my rheumies after the fourth one.

[Coffeebeans in reply to piglette]

Oh that sounds even worse! Why is it such a disappointment every time!

[piglette in reply to Coffeebeans]

Each year I give up doctors as my New Year’s resolution!

[PMRpro Ambassador]

Sorry to put a damper on things but I suspect a re-referral now may take a very long time to get through the system. Sarah Mackie is not a full-time clinician which adds to the time as well.

Which hospital are you under?

[Coffeebeans in reply to PMRpro]

I think you're right unfortunately. I'm at Dewsbury Hospital which is out of area apparently. That was just where I got referred to!

[PMRpro Ambassador in reply to Coffeebeans]

You can choose where you go first in England - officially that is. At present? Who knows.

[tangocharlie]

Re them saying you aren't tapering fast enough - what dose are you currently on and what did you start on and when? How has the tapering gone so far? It might well be that the cause of your problems is being made to taper too fast or too soon

[Coffeebeans in reply to tangocharlie]

Oh I've told them to back off on that one' I'll go at my pace. Currently aiming at 1mg every 4 weeks IF well. Started on 15mg. Tapered off for scan. Had to go to 20mg after that flare. That was in March this year.

I am on 15mg now dropping to 14mg tomorrow. I worked out I couldnt do 2.5mg drops whilst ratings carbs. Now low carb and dropping slowly and steadily but it's not fast enough for them!

[PMRpro Ambassador in reply to Coffeebeans]

They got you to taper off for the scan. Why isn't clear to me at all but a lot of us struggle to get things under control again after doing that for any reason. It isn't just one or two - it's a lot.

[Coffeebeans in reply to PMRpro]

I agree, that flare was a pain to get under control. 15mg was doing a grand job up until that point.

I remember you having to do the same thing.

[PMRpro Ambassador in reply to Coffeebeans]

Yes - but there is so much going on at the same time! However - I think it had a role to play.

[HeronNS in reply to Coffeebeans]

Have you used the dead slow taper plan? Usually not needed until 10 mg or below but it is very helpful. If you use four day start it takes a month, the six day version (recommended at lower doses) takes six weeks.

healthunlocked.com/pmrgcauk...

Also, I note you are working. If you haven't already, let some things go (the dust, for example, will wait) and make sure you get sufficient down time.

[Coffeebeans in reply to HeronNS]

Thank you, I have seen this and and am planning using it. Was hoping to get a couple more 1mg drops first and see how I feel.

You're right re letting things go. I am pacing myself far better lately!

[HeronNS in reply to Coffeebeans]

As you see, the shorter version gets you to the same place per month as dropping a mg overnight, which is why I mentioned it. Of course if you are finding your 1 mg per month to be working, then carry on!

[Coffeebeans in reply to HeronNS]

I get you. Same end point but maybe easier to get there. I'll look at it seriously, thanks again.

[Rugger in reply to Coffeebeans]

I was going to say the same - the DSNS taper still gets you a 1mg drop, but more gently.

Also, I waited at least 6 months to see Sarah Mackie and that was several years ago, before Covid 19. Now all my 'appointments' with her are by phone. However, it is worth asking for a referral, as she is worth waiting for!

[Coffeebeans in reply to Rugger]

Another good recommendation for Sarah. I'm trying to get a referral but can't get a GP appointment 🤯.

Going to do DSNS from today 😄

[Coffeebeans]

Update. I have called Sarah Mackies office and she is taking new patients.

Next step GP for referral only to be told no appointments. Ring back next week and see if we have any to offer. I can't find the emoji for banging my head repeatedly off a brick wall.

[herdysheep]

Perhaps write to GP? They seem to have reading time. You could stress how difficult an appt is to get with Dr Mackie. Given that you have done the work to establish it's possible, there is not a lot for GP to do - that should appeal!!

[Coffeebeans in reply to herdysheep]

Yes good point. I have enlisted my other half to argue on my behalf so will remind him of this. I'm out of energy..

[Arflane97G]

Really feel for you - have had no contact from my gp for months and months now, took myself off to the pharmacy to get a flu jab and after an appalling appt with a locus rheumatologist the week before last I wrote a long - factual and not too emotional - letters of complaint to the hospital. So, have appt today with head of the clinic and armed with list of questions really hope to have a more productive session

[Coffeebeans in reply to Arflane97G]

Oh well done on that one. I really hope you get the outcome you need.

My wonderful partner has obtained a GP call back today so that's progress. Got to keep plugging away.n