more than slightly miffed

So, off to the local pharmacy to pick up my monthly shipping order of 'moving medicine' (better known as MTX, Hydroxy, Arcoxia and Norotryptoline) to be told that I have everything but my epipens of MTX because they had run out.

I need to inject today I explained, sorry don't have any, can't get hold of any, maybe sometime next week they said. After I suggested that perhaps this wasn't good enough, they decided to 'help out' and rang the local Rheumatology dept who also, wait for it, don't have any because there is an 'issue' at the manufacturers (in Scotland) and supplies should be resumed next week!

I was feeling quite stressed - and stress is so one of my triggers ;( but knew that ranting at the pharmacist wasn't going to help so decided to phone Rheumatology myself.

My consultants secretary informed me that 'they are all very busy' and 'there's nothing we can do' and the top piece of advice from a non medical person 'I suggest you take it easy for a few days'.

Stress levels definitely rising by now as you can imagine, phoned my GP who sounds like he gave them an earful, because within minutes I was phoned back offered steroids in tablet form 'to get me through the weekend', an open appointment anytime next week.

So basically a heads up for anyone else - MTX is in short supply until next week and you ,obviously, need to man up and deal with it.

5 Replies

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  • We've been talking about this recently. The last couple of months my Pharmacist's supplier hasn't been able to fulfil my script so she's contacted Medac direct & got them from there. She suggested I request my script a week early as there's been a few days delay in delivery each time, in fact I ordered 6 items yesterday & was able to collect the rest of my script this morning but the MTX won't be in until Tuesday, I have one for Wednesday which is the day I inject so will have a full month's worth the day before I inject. Could be worth suggesting your Pharmacist tries this until the issue is sorted.

    Try to relax, I only start to notice a difference if I've not injected for 2-3 weeks, though of course you may miss it sooner..... or longer than that!

  • Had weird and wonderful liver test results and was recently knocked down a level of MTX so unfortunately feel the effects by Thursday, the day before I inject. As a consequence, I now have spiking CRP levels which adds to the overall grumpiness, creakiness from pain. I am normally more organised with my meds, but the Bank holiday confused me completely (not a mistake I'll ever make again!)

    I think I've said before to you that my specialist has changed, due to retirement, and really don't get on with the new one at all. The attitude had really changed within the dept., shame because before it felt like they cared.

    Will take my grumpiness and go and have a bath (and possibly stay there until Tuesday)

    Gentle hugs

    Px

  • Oooo no, you'll get ever so wrinkly if you do! Yes, you said some time ago that the team had changed, a Rheumy's approach influences the rest of the team & if there are bad vibes it will show through the staff. I would seriously be thinking about asking for referral somewhere else, even if you've a way to travel, having a Rheumy you have faith in is worth travelling to. Meanwhile don't fret over the weekend & risk flaring, try to keep yourself occupied so you've no time to sit thinking & worrying & waiting for something to happen. x

  • Oh well. I had my first methotrexate injection yesterday delivered via an epipen. Excecpt I had to go to the day cancer care unit and wait for the very sweet but clearly overworked nurses to inject me. Consultant says my part of barts trust is still negotiating with health care at home who are so stretched that they refuse to take any one new. I can't be trained and can't get deliveries at home....sorry that didn't really help your problem.

  • Mary, I as so sorry for complaining. I, too, loathe causing anyone extra work. Just thought my 'care' was sorted and its always frustrating to find its not. I haven't been offered deliveries to my home and have always collected all my stuff from the local pharmacy, who are extremely good. This situation isn't their fault and I shall go back to them today to apologise for being a stressy cow.

    I do wish that this could all be simplified and the stress avoided. The treatment programme really seems to vary dependent on postcode.

    Take care and gentle hugs

    Px

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