Frustrated & anxious about meds delivery

Wonkylegs

HI all at helpline towers.

I am having a bad day today mostly due to frustration and anxiety with regard to my MTX medication (i have injections). I would have rung you but I am anticipating receiving a call from the hospital (but it may not materialise :roll: which just makes things worse :roll: )

Due to a dose change 9 weeks ago, the normal delivery dates for my MTX have been different. ON change of dose my normal delivery company were put on suspend and I had to go to the hospital to collect 4 syringes.

After my phoning the rheumy nurses to say that the dose seemed to be working, they arranged a new prescription with the delivery company, who did their best to deliver in time for my injections .... although it was literally at the last minute that I received it, and it was only for 4 syringes not the usual 8 which meant that I used the last one last week.

As I had anticipated, the delivery company had to chase and chase the hospital last week (Easter being in the way) .... culminating in my having to ring the rheumy helpline on Friday and leave a message. Their return message assured me that it was all sorted, but of course it is never as easy as that! :roll:

Today the delivery company have advised me that they cannot deliver my MTX until Friday or Monday (their delivery days in this area) and to await a call from the hospital about what to do this Wednesday.

I am gutted .... only 8 weeks into the raised dose things were getting a little back on course .... but all this anxiety at every delivery time gives me so much stress .... and I often feel it is just me, but I know that I am certainly not the only one who is having to put their life on hold whilst dealing with a system which is creaking and struggling to cope.

I know the rhuemy nurses here are really pressured and have lots of people to support, and I do try to only ring when it is essential for me to do so. But I am also trying to have a life, and with courses of OT and CBT at the moment as well as not feeling that brilliant, I feel as if I am being torn in different directions.

I'm left with three options for this week but none are that exciting.
The thought of missing a dose this week is not good, nor is the thought of the time, energy and expense of my having to go all the way to the hospital tomorrow to collect a dose for the next day.

The third option would be to use on of the lower doses of MTX that I currently hold, which are just in date. This would be the least disruptive to me ... but I'm not sure they'll let me do it, or that the GP surgery nurse will be allowed to give me a different dose.

DO you think there is any way I can reasonably express my concerns with the hospital system for MTX prescriptions & delivery without causing the rheumatology nurses more work or thinking I am ungrateful for the help they do give me?

thanks ... & sorry this is so long-winded. I would have rung but the phone might ring ( or might not!)

thanks for any advice.

WOnky

helpline_team

Hi Wonky
Oh, how frustrating!! Take a deep breath, then scream, then take a deep breath again.
You seem to have 3 options - I would agree with you that missing a dose is not a good idea and I would also agree that the surgery nurse may not be allowed to give you a different dose from that prescribed.
Trailing to the hospital may be your best bet but what a drag!
I've thought of one more possibility. Would your GP prescribe one dose? If so, ring your chemist and say 'if I bring in a prescription for one injection of Methotrexate could you get it for me by Wednesday?' Just a thought.
Of course you can reasonably express your concerns to your rheumy nurses at the situation you now find yourself in. Whilst being very grateful for their care & kindness etc you can say how frustrating you find this failure in delivery system just as you were feeling confident that this current treatment was working well and you were feeling less stressed.
Yes, they do have lots of people to support but this is your health we're talking about and that is important.
Wonky, I do hope this sorts itself out quickly. Of course, the phone might have already rung ............ ?
Best wishes
Val

skezier

Hi Wonky,

Just wondered in and left you a stress busting ((((( ))))) and a hope this can get sorted for you soon. In the mean time Val's one dose suggestion hopefully can be done?

I know why you don't ant to get on to the hospital but could you not just ask them to help get it sorted cus you can't miss a dose and you can't have this every week.

I wish I lived nearer cus I would happily go get it for you from the hospital. Another ((( ))) and a hope it can be sorted. Luv Cris xx

Wonkylegs

helpline_team wrote:

Hi Wonky
Oh, how frustrating!! Take a deep breath, then scream, then take a deep breath again.
You seem to have 3 options - I would agree with you that missing a dose is not a good idea and I would also agree that the surgery nurse may not be allowed to give you a different dose from that prescribed.
Trailing to the hospital may be your best bet but what a drag!
I've thought of one more possibility. Would your GP prescribe one dose? If so, ring your chemist and say 'if I bring in a prescription for one injection of Methotrexate could you get it for me by Wednesday?' Just a thought.
Of course you can reasonably express your concerns to your rheumy nurses at the situation you now find yourself in. Whilst being very grateful for their care & kindness etc you can say how frustrating you find this failure in delivery system just as you were feeling confident that this current treatment was working well and you were feeling less stressed.
Yes, they do have lots of people to support but this is your health we're talking about and that is important.
Wonky, I do hope this sorts itself out quickly. Of course, the phone might have already rung ............ ?
Best wishes
Val

thanks Val ........ the scream really helped although the dog wondered what was going on .............and no the phone hasn't rung :roll:

I hadn't thought about asking if the GP is allowed to prescribe the injections and if the local pharmacy might be able to get it. Even if it isn't possible for this time I will find out for a 'plan B' should this situation happen again.

I'll ring the rheumy nurse helpline number first thing in the morning and hope that someone is in the office to overhear it (they only take the messages off at 12 noon) to get me their advice. Otherwise I am going to be at the mercy of my very helpful GP surgery on Wednesday morning. I just know what the practice nurse will say when I tell her I've no new stock .... she gets more annoyed with this system than I do sometimes and at least my GP is in this week and she is really helpful too.

thanks again - it is so helpful to know you are all there for us when we are in a fix.

take care
WOnky

Wonkylegs

skezier wrote:

Hi Wonky,

Just wondered in and left you a stress busting ((((( ))))) and a hope this can get sorted for you soon. In the mean time Val's one dose suggestion hopefully can be done?

I know why you don't ant to get on to the hospital but could you not just ask them to help get it sorted cus you can't miss a dose and you can't have this every week.

I wish I lived nearer cus I would happily go get it for you from the hospital. Another ((( ))) and a hope it can be sorted. Luv Cris xx

thanks Cris .......... great hugs really helped.

The hospital know that I have no stock ...... but we'll see what the next half hour brings ...... time for the phone to ring yet

It had to be this week ......... bad timing cos busy too ...... but that's maybe arthur playing up too :roll:

hugs
Wonky xx

barbara12

Hi Wonly
I just want to send you some more hugs (((((((()))))) I really hope you get it all sorted very soon, it is the last thing you need right now.
You take care and let us know how you get on.
Love
Barbara xx

annie_mial

Hugs for you too, WOnky..........Arther and anxiety don't sit well together..........hope it is all resolved soon for you!

Annie

Wonkylegs

thanks Barbara & Annie

this forum is a godsend at times like this.

thank you all soooooooooooooo much.

I know what I'm going to say to the hospital tomorrow ..... and I know my GP will support me, so we'll see what happens.

hugs to you all
WOnky

speedalong

What a total nightmare and added stress that you don't need.

Hope you get it sorted.

Speedalong

ritwren

Since my dose was increased at Christmas I've been having problems with supply as well. I wonder how many others are too. Hope you got it all sorted for tomorrow.
rita

Wonkylegs

Update

The delivery company rang this morning and they are delivering on Friday morning between 8am -1pm

I rang the rheumy nurse helpline and left a message this morning saying that I intended to use a lower dose syringe that was still in date rather than to miss my injection altogether.

The phone call I had in response to this left me less than happy, but I guess the nurse had a point but I think I did too & I'm not sure I got mine across as well as I'd like to have.

I apparently worry too much and what does it matter if the injection is two days late - i could have it on Friday. that wasn't a problem as far as they could see. (pity my nurse doesn't work on Fridays and that the delivery might not arrive until my GP had finished for her half day!) And why was I still needing to have the injection done for me rather than doing it myself - was I no nearer being able to restart? (funny but the GP surgery and the nurse and I had all been in agreement that it was fine for me to go each week and it took so much of the stress away - no-one had suggested that I should be working things out so I could take over again!!!)

the really frustrating part is that apparently if there is a problem I should simply make one phone call to the rheumy helpline and then forget about it and let them do the worrying. right .... like that has worked in the past!

Not sure where this fits into having a life and needing to know when I need to be at home to get a delivery, or when to arrange a nurse appointment etc.

the final parting shot from the rheumy nurse ...... I wouldn't notice missing one dose of MTX at all ....... I wonder has she tried it herself?!

sorry I've been a grumpy wonky today :roll: :oops:
tomorrow I'll not be so grumpy I hope.

chris7

Wonky

Poor you. :shock: What an absolute saga of mismanagement and cock ups and a rheumy nurse who appears to have made everything so much worse with her comments. No wonder you were stressed out with it all and have had such a bad day today and this week.
Really hope you do sort something that works for you this week and that they get their act together in the future. You certainly didn't need this performance. Sending warm bestest made and patented Wonky hugs back to you. (((( )))))
Hang in there
Chris xx

helpline_team

Hi Wonky
Well, I suppose things are more or less sorted though your stress levels are probably sky high.
Another deep breath & a scream?
Val

Wonkylegs

helpline_team wrote:

Hi Wonky
Well, I suppose things are more or less sorted though your stress levels are probably sky high.
Another deep breath & a scream?
Val

I am definitely going to have to practice having a scream to help me stay calmer because I think they really do help

I think maybe the nurse was having a bad day too .... and well I have had a jab this week and I am sure it will be fine.

Delivery due tomorrow morning, then an afternoon at the dentist so a really fab day to look forward to

thanks everyone for the support - it was a great help

now .... deep breath ........... and relax ...........

hugs
WOnky xx

madwestie

Wonky, I was sorry to hear about all your troubles.

I get my injections on prescription from the GP's which i take(well i don't actually the chemist's pick them Up) to the chemist who order them for me and i just pick them up from the chemist.

Is this sort of thing available in your area it saves the waiting in and you can control when you put the prescription in to the gp.
i do mine when i have 1 inejcetion left and then by the time i use that the rest are ready to pick up.

Good luck hope the new dose is working for you.

tracey

Wonkylegs

thanks Tracy ...... it is interesting to know that there are other systems out there ... but round here there is the one system with a possible add-in of collecting the stuff from the hospital.

I've cleared up things with the rheumy nurse and we are hoping that things will be ok now.

having said that, when I see the consultant on 5th May we are goign to be asking for the anti-tnf to be added in :roll: so more fun will no doubt ensue with arranging that!