5th Anniversary

[Marijo1951]

I just thought I'd put on record that exactly 5 years ago today, 31st July 2017, I saw my rheumatologist who told me that I had GCA and PMR. I well remember the relief of actually receiving a diagnosis after 4 months of unexplained pain, stiffness and deadly fatigue. I also remember how magnificent the NHS was as long as I counted as a emergency. But, once I was clearly responding to treatment and starting to be on the mend, I was more or less left to my own devices. And that's how it's been ever since. I managed to get an appointment last December after months of waiting, but that was cancelled and replaced with an appointment in May, which in turn was cancelled! My next appointment now is in April 2023, and I wonder if it will actually take place. I self-diagnose, having got myself down to 2.5 mg of pred daily and 10 mg of MTX weekly, my GP being too clueless to offer any useful advice. I'm inclined to stick to these dosages until I finally manage to see a rheumatologist, and hope I'm not told off for not getting even lower.

I'm having a similar experience with my more recent medical emergency in April - haemorrhaging from tumours on my left kidney which required a procedure to embolise the artery, done successfully the day after I was taken to hospital. I was looked after very well in hospital for 4 days and then discharged. I was supposed to have a follow-up appointment after 6 weeks. I rang after 8 weeks and was told that "after 6 weeks" was the ideal but normally it took longer than that. I'm still waiting to hear...

[PMRpro Ambassador]

You are being monitored properly with the MTX I trust?

Did you see the survey I posted about recently?

healthunlocked.com/pmrgcauk...

Do please complete it - the situation for GCA and PMR patients is appalling anyway but what you have been subjected to is practically negligence IMHO.

[Marijo1951 in reply to PMRpro]

Thanks for the links to the survey. I have completed and submitted it.

I do have regular blood tests, although they were rather sporadic for some time while the hospital was completely at sixes and sevens thanks to covid. I had to ring up the rheumatology department to remind them that I was supposed to have a regular blood test! I did this when my GP indicated that he wouldn't prescribe any more without satisfactory blood test results. Since May the hospital has got back into their old habit of sending me a reminder to make an appointment every month. I'm not really happy to continue with the MTX, but my GP won't take the responsibility to tell me I'm okay to stop taking it. I took the arbitrary decision to cut from 15 mg to 10 mg per week without any nasty effects.

"Practically negligence" - I tend to agree. I'm sure that, in circumstances like these, some people simply drop out and stop treatment that they need.

[DorsetLady PMRGCAuk volunteer in reply to Marijo1951]

I'm sure your last sentence is spot on! Unfortunately...

[PMRpro Ambassador in reply to Marijo1951]

Ditto to DL's comment.

[Heron82 in reply to Marijo1951]

Does your GP surgery not do the blood tests on behalf of the hospital? That is the case where I live and I make the appts as needed. Every 3 months now for Mtx. I do hope you get a better response going forwards.

[Marijo1951 in reply to Heron82]

It's complicated! If I was being treated by my local hospital, the Whittington, the situation would be as you describe it. However I'm treated by another hospital, a couple of miles further, the Royal Free, and it isn't so straightforward. I have to deal directly with the rheumatology department and they email the blood test results to my G.P. I think this is one of the numerous results of the failure of the great 1990s attempt to create a universal integrated IT system for the NHS. When my G.P. first decided that I needed to see a rheumatologist, the next appointment at the Royal Free was weeks before the next appointment at the Whittington, hence the situation.

[Sophiestree in reply to Marijo1951]

Just a thought but you are entitled to a second opinion, so could you asked to be referred to the Whittington?

[Marijo1951 in reply to Sophiestree]

Thanks, I hadn't thought of that, though I think the waiting list there is probably at least as bad as the Royal Free. I might look into it.

[SheffieldJane]

Happy anniversary! I hope it’s the last. Your treatment or lack of it, is a sad indictment on the state of primary care. I said to a new GP at our surgery that I feel as if I don’t have a doctor to call upon. She has been very attentive since . I feel pathetically grateful. Maybe we have to shout up more. Mind you, if they are not very good, then it’s a waste of time. Well done for your self care so far. I do wonder if Methotrexate is doing anything anymore?

[Marijo1951 in reply to SheffieldJane]

I wonder that too. I'd really prefer not to take it, but I suppose I'm not brave enough to give it up completely without the approval of a doctor. If I understand correctly, Methotrexate is always prescribed and monitored by a specialist, never by a GP, although the GP issues follow-up prescriptions. This is why my GP can't advise me to discontinue taking it. I also once asked him if we could transfer my care from the hospital to him, but he said the protocol is that the initiative to release a patient from hospital to GP care always comes from the hospital, which is fair enough when the hospital is functioning as it should...

[PMRpro Ambassador in reply to Marijo1951]

I suspect a patient can also initiate it with the hospital ...

[SheffieldJane in reply to Marijo1951]

I expect you’ve contacted the consultant to discuss this? Mine delegates the care to a Methotrexate team, who presumably inform her of issues where decisions are needed. I don’t know because I baulked at the last minute and declined it. I wasn’t due a Rheumatologist appointment until November, so that would have been 5 months on it. I kind of know at gut level that it is not for me.

[MrsNails]

Marijo - do you have the Rheumy Helpline Number as the Nurses can advise & can ask the Consultant for advice re doses etc Have you been having your Routine MTX Bloods taken?

You may think the MTX isn’t doing anything until you stop it but it only starts to be apparent after 8-12weeks…….

Re Methotrexate it’s classed as an Amber Drug - ie can only be prescribed by a Consultant but the GP can issue repeat prescriptions as long as your bloods are OK

Hope that helps

MrsN

PS Your GP signs a Contract with the Hospital for your joint care.

[Marijo1951 in reply to MrsNails]

Yes, I have the helpline number. It was the one I had to ring to remind them I needed a blood test - that's all sorted now thank goodness. as they' ve recommenced their old practice of sending me a reminder to book a test. I've had 3 since May.

I have called them occasionally for advice and a doctor once called me back but was quite hostile to the idea of stopping the MTX . For the time being I'm content just ticking over, but I'll call them if I get really worried about anything.

[MrsNails in reply to Marijo1951]

They really are very good - l’ll be ringing mine this week once l’ve had an extra blood test to see if my Inflammation Markers are Up ⬆️ I suspect they are! I have bloods done every two months now unless l feel a ‘bit off’

One of our ladies stopped her MTX as she didn’t think it was doing anything but discovered a few weeks down the road it was & hastily returned to it! 😉

During Lockdown l wasn’t too good but managed to get my bloods done so l wrote to my Consultant, he then rang me & we made a plan…..

So you can get things done if you’re a already a patient, not so easy if you are on a waiting list!….,,

[Sharitone in reply to Marijo1951]

Would it worth calling them again, in the hope that you get a different doctor? I was allowed to stop MTX when the pharmacist made a mistake, and missing a dose didn't make any difference. Or perhaps you could ask them if you could miss one dose and see if anything happens.Or just simply move to another area. It might be easier.

[Marijo1951 in reply to Sharitone]

I might try calling again, maybe after my next Covid jab when we're advised to stop MTX for two weeks. Not sure about moving - it seems a bit drastic, and I'd be just as likely to end up somewhere worse as somewhere better. I rather like my flat despite still having scaffolding up after the damage caused by Storm Eunice in February!

[Broseley]

I'm not on MTX just pred but as I understand it I should have blood tests every 3 months. My last one was in January at my last rheumy appointment. I was meant to see him again in July but no appointment; when I phoned I was told there was a backlog and that I'm on the list. Also my last blood test ( the first one since starting pred) didn't check HBa1c and when I queried it rheumy nurse said there's no need as any diabetes from pred is only temporary.I asked my GP surgery for a blood test and was told I didn't need one.

It's fine us managing our own tapering, but we can't do our own blood tests!

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

“It's fine us managing our own tapering, but we can't do our own blood tests”

.. it may we’ll come to that! 😳

GP surgeries seem to be reticent to approve blood tests nowadays -cost and Covid hangover! But some DO need approving.

[Marijo1951 in reply to Broseley]

Gosh, your situation is worse than mine! My hospital has gone back to the system of calling me in for a blood test every month, although the rheumy nurse told me that every 3 months was fine at this stage. I don't argue - better to have too many blood tests than not enough.

[borednow in reply to Broseley]

I too am just on pred and haven't had any follow up blood tests since I was diagnosed in 2017. I think I have made my feelings regarding my GP perfectly clear in past posts!

[Marijo1951 in reply to borednow]

I suppose I'm required to have blood tests mainly because they need to check for MTX side effects and also because I have GCA as well as PMR. But I can't believe that your doctor hasn't wanted to check your blood at all in 5 years, however straighforward your case is. Wait - maybe it isn't that difficult to believe these days with the state the NHS is in at present...

[borednow in reply to Marijo1951]

Indeed.

[Broseley in reply to Marijo1951]

I have GCA and PMR too. I'm lucky so far in that my tapering is going well 🙏🤞

[Broseley in reply to borednow]

😲🤬 that's awful.

[Sophiestree in reply to Broseley]

I was at the hospital on Friday for a pointless Rheumy appt and all I heard were nurses talking about leaving, checking what their pension would be etc, and then when I went for blood tests, the Senior Phlebotomist said she has lost 4 members of staff due to over work and low pay and they were really struggling to the point where she cancelled her holiday for the following week.. The stress in the room was tangible.

[Marijo1951 in reply to Sophiestree]

In 2005 when I needed knee surgery, I was offered an operation 3 days after my first appointment and had great follow-up treatment. There was a great sense of camaraderie amongst the staff and it really felt like a system that was working. 3 people I knew who needed treatment around the same time also had first class experiences.

How times have changed! We're not supposed to get political on this forum, so this comment might be removed. but sadly years of underfunding, plus B***** gave a huge body blow to the NHS, followed of course by the ravages caused by Covid.

[DorsetLady PMRGCAuk volunteer in reply to Marijo1951]

Maybe political? But unfortunately a fact of life…

[Sharitone in reply to DorsetLady]

It used to be political, but now it's ok, it's just a good swear word.

[DorsetLady PMRGCAuk volunteer in reply to Sharitone]

So true!

[Tiredofpmr555]

Free health care for all is something people here in America are wanting but it obviously has it's drawbacks. People on Methotrexate should be under supervision and have tests run regularly. I was on it for two weeks, had blood drawn and was taken off because of negative effects on kidneys.

[dancersize2]

I stopped 10mg MTX for two weeks when I had my fourth covid vaccine. A week and a half later I ached everywhere. Two days of 5mg pred fixed the problem. Otherwise I'd stopped pred since January 22. I also wondered if the MTX was doing anything but now think maybe it still is. Rheumy visit on Friday so I'll see what she says.

[Singr]

So sorry to hear all this. Sadly it is all too common. Mirrors my own experience and I really feel the growing anger and resentment towards the NHS. I now have no Rheumy and no future appointments, no monitoring. It's absolutely exhausting isn't it?

[PMRpro Ambassador in reply to Singr]

It isn't the NHS that is to blame - there is a worldwide shortage of all healthcare workers. And I won't get into the politics ...