I wrote before about my difficulties in getting a hospital appointment. My last telephone appointment was in May but nobody called me. It was only a month later after I had contacted the hospital PALS that my consultant rang. A couple of weeks ago I finally managed to call the rheumatology department and was given a face-to-face appointment for 22nd December which seemed pretty satisfactory. I was pleased that the department was evidently getting back to normal.
Today I learn that they have had to cancel that appointment and have given me one for 18th May next year. I know that I'm ticking over nicely and not in need of urgent medical attention, but I still need advice and reassurance. In particular I want to try coming off Methotrexate, at least for an experimental period to see if I really need it. I've been taking it for nearly 4 years and don't want to continue if it isn't necessary. I've a strong feeling that my GP won't be willing to advise me as the hospital prescribed it in the first place. A couple of times recently I haven't taken it, once because I forgot and once because I'd just had my third Covid jab. Those weeks I noticed an improvement both in my mental acuity and my physical stamina and, rightly or wrongly, I can't help making the connection. Also I didn't have any alarming symptoms.
More generally, I wonder how people manage about getting appointments when they're not confident about fighting their corner, maybe don't have English as their first language or just feel too bloody ill to persist. It's disgraceful and not what my grandparents expected when they campaigned to establish the NHS. I feel I'm being forced into making a private appointment with a rheumatologist which shouldn't be the case.
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Marijo1951
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You could inform your Rheumatology Department by letter that you are intending to come off Methotrexate as an experiment for all the afore mentioned reasons. End with a question such as “ Is there any reason why I should not do this and what might I expect”? I think you will get an answer.
In the FAQ section, right hand side of the page, there is a wealth of information in relation to Methotextrate. Take the time out and read up on it all. I am fairly sure that somewhere in there it a piece on coming off metho...............
I will stop taking it without advice if necessary, but I know we're not supposed to stop taking medication without the agreement of our doctors. If we can't see a doctor, how are we meant to manage?
All I can say is that we have to try at present which you are doing by coming here and then reading up on Metho.
During the last 4 weeks my brother contracted covid (81). I finally had to call an ambulance after 2 days as his breathing went down hill. The wait was over 2 hours, off to hospital - sorted out and returned home after 8 hours, 2 of which were waiting for transport.
All the professionals in the medical, social services, care homes are under extreme pressure and some (my friends are coming home in bits after 18 hour shifts). One of my closest friends works in Social Care for the Council, for the past 18 months she has done and continuing to do double shifts every day and has had four weeks off.
Has been isolated twice due to testing positive - they are tested every week (PCR) and a lateral flow whenever the people they are caring for develop Covid. This all before flu hits.
People are walking around without masks, going into crowded places, just carrying on as though Covid does not exist. A form of complete denial that a pandemic exists. The care home my 94 year old cousin is in - has lost 5 staff today.
So we have to try and rely on ourselves. Today it is 11 November and memories of my childhood come flooding back.
Yes I know how stressful it can be - but needs must when the devil drives and we just do not have a magic wand.
I hope you take this all into consideration and not take offence and take time out to count your blessings which I am sure are many at present.
I recognise the world you describe and know I'm relatively lucky - no offence taken, why should I?
I live in London where mask wearing on public transport is mandated. Yesterday on the Tube a quarter of the people in my carriage were wearing masks! I'm going to Manchester for a week soon, cat-sitting for my daughter. I spoke to her yesterday (daughter, not cat!) and she said that mask-wearing has almost disappeared there, despite also being mandated on public transport. She felt like an eccentric when she wore hers on the tram.
It’s patchy here as well- went for booster yesterday- obviously everyone wearing masks - but then went to garden centre for coffee. Sign to say “we appreciate if you wear a mask “ - bit wishy- washy, but about 50/50 - customers and staff! Fortunately I’m no longer on Pred, but wecstill need to look after ourselves - whether we are in minority or not!
In your situation I’d be inclined to write to hospital and say as they can’t give you appointments, you want to be referred back to GP.
Another good idea which I might take up. I did ask my GP about being discharged back to his care, but he said that the protocol is that the initiative has to come from the hospital. If I request it from them, maybe they'll oblige.
I think if the various agencies work together instead of pulling up their own drawbridge it would be so much better. Instead some depts are royally dumped on while others are twiddling their thumbs.Also, if we do have to look after ourselves and make more of our own decisions, docs need to accept that and stop telling people off when they have been put in an impossible and possibly unsafe situation.
Re mask wearing, its depressing but the attitude i keep coming across is, “I'm double vaccinated” therefore I’m immune and incapable of passing it on to anybody”. It is how it was sold without the caveat in large print that immune response is variable and you can still give somebody Covid even if you are asymptomatic yourself which is more likely the case.
Not immune - breakthrough infections show THAT, but they are milder, probably mild enough to missed more often than not, and with the delta variant it still can be passed on. But those studies aren't being mentioned in the UK press.
I doubt the GP can make autonomous decisions about MTX - that is a consultant-initiated drug that the GP just writes the precription for. You, on the other hand, can.
The effect of MTX persists for several weeks so missing a few doses may not show anything, I realised within 4 weeks that MTX was improving things, I felt worse than with untreated PMR which wasn't the idea. I just couldn't face sticking with feeling so unwell and fatigued so stopped (as previously agreed with the rheumy for a science meeting in S Korea) and never started again as I slowly began to feel so much better without it.
As for things improving - don't hold your breath. We all need advice and reassurance - but they are luxuries at present.
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Follow up appointment
Update: Cancelled NHS Appointment
Not coping to well today!!!!!
NHS Physio appointment
