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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To Take Unprescribed Medication (I am desperate)

58 replies

travellinghopefully12 · 12/07/2017 10:09

I have several autoimmune diseases, rheumatological. I was so much better for a long time, but for the past three months I have had completely frozen joints. I keep waiting for them to unfreeze and it doesn't happen. I've been to GP repeatedly and been referred to rheumy as 'urgent' but this means I can't be seen until 23rd August. I am in so much pain and on co codamol, diclofenac sodium and prednisone but they are not working.

I have some methotrexate left from before - the date on the bottle is 5/10/2015, so maybe out of date, but I know this medication will fix it. I know it will. I've begged the GP and they can't prescribe it, and just keep giving me more Prednisone.

I can't walk, I can't get into work, I can't do stairs and I can't lift my arms. I called rheumatology and left a desperate answer phone message and got no reply.

Methotrexate has helped me before, shall I just take it? Is this OK? I know it's irresponsible, but I feel driven to it.

OP posts:
e1y1 · 12/07/2017 10:15

Sorry, you're going through such a hard time Flowers.

Anybody here would be unethical to say yes take it (unless they are medically qualified).

As far as I know, out of date medication never normally becomes "dangerous", but it just becomes less effective/may not work at all.

If you call the Dr/Pharmacist, it is almost 100% they're going to say no, don't take (to cover their own backs if nothing else).

I know this maybe futile (and I'm sure you have already done it), but is it not worth going to Dr and explaining your current treatment plan isn't working right now and is there anything they will do, they surely can't leave you in so much discomfort and barely not functioning?

All the best

MrsHathaway · 12/07/2017 10:17

I'm sorry you're having such an awful time of it.

I am not a pharmacologist and I don't know about Methotrexate, so I googled. It appears to have an awful lot of interactions with other drugs and the potential to do you damage on its own including organ failure. Did the doctor explain why s/he can't/won't prescribe it? Is it possible s/he is worried about interactions or side-effects rather than dismissing your symptoms?

Could you call NHS 111 for advice?

MrsHathaway · 12/07/2017 10:18

As far as I know, out of date medication never normally becomes "dangerous", but it just becomes less effective/may not work at all.

Some denature and become toxic. Those of us not pharmacologists can't decide that it's probably ok.

travellinghopefully12 · 12/07/2017 10:20

thank you ely - I have been to the GP so many times in the past few weeks (even getting two emergency appointments in one week.) I had a telephone consultation yesterday too as I couldn't get to surgery and GP just said for DP to collect more steroids for me.

I did ask my GP about the methotrexate, and he said 'well I could tell you to take it but I wouldn't have a job next week.' Helpful.

I want to try to go to work this afternoon but even if I get in I think I will get sent home. DP says to accept the illness not fight it. I work in public sector though and we are horribly understaffed and I am so guilty and unhappy

And I have this old medicine which might just fix it.

OP posts:
Splodgeinc · 12/07/2017 10:21

As a junior doctor I am not allowed to prescribe methotrexate as it is too dangerous, only the consultants can. Maybe GPs cant prescribe it either. Can you ask the GP to call the hospital consultant to get some urgent advice on the telephone? they may then be able to give the go-ahead?

Morphene · 12/07/2017 10:21

The problem with going it alone is you won't have the monitoring or the checks on drug interactions.

eg. It looks like it is used in abortions, so pregnancy is probably a no go.....it interacts badly with penecillin derivatives etc.

I don't understand why the GP can't prescribe if you have had it before? Can you try a different GP or a walk in clinic?

travellinghopefully12 · 12/07/2017 10:21

What does denature mean? GP says that only a rheumatologist can presribe it x

OP posts:
Morphene · 12/07/2017 10:22

is a private consultant level appointment something that might work?

endofthelinefinally · 12/07/2017 10:23

Ring the hospital again until you get a reply. Tell them you will take a cancellation at short notice.
Email your MP.
I needed an urgent appointment and was fobbed off for weeks by the appointment department.
My MP got me sorted very quickly.
Does your employer or union have any scheme to help you go for a private consultation?

Morphene · 12/07/2017 10:24

denature means taking on a form that isn't the original drug form.

Many complex molecules react slowly over time to become other complex molecules, so the longer its on the shelf the less likely it is to be the original molecule. What it turns into could be anything from inert, to toxic.

MrsHathaway · 12/07/2017 10:25

Denature means "go off" - like when wine starts to smell funny or milk sours. Some chemicals are more stable than others.

e1y1 · 12/07/2017 10:25

Some denature and become toxic. Those of us not pharmacologists can't decide that it's probably ok

Yes agree, hence why I was careful to say as far as I knew, and normally don't become toxic.

Ineverpromisedyouarosegarden · 12/07/2017 10:25

Haven't read the full thread but No please don't take Methotrexate unless prescribed and monitored you need regular blood tests to ensure your white blood cell count doesn't drop too low. You could become really ill from immunosuppression.

travellinghopefully12 · 12/07/2017 10:25

Splodgenic, thanks I might try that. I did ask them to write to rheumatology and try to hurry up the appointment and they did but it's made no difference.

Local Rheumatology has an answerphone but the window for being called back has passed. I was clinging onto getting a call from the specialist nurse between 7.30 - 10.00. I know they are horribly overstretched though.

I need to do so much. I want to clean my flat. I want to go to work, I want to be able to walk. I know other people are sicker and fighting it like this is making it worse but I feel like abeast prowling behind the bars of my illness. Doing nothing is not in my nature.

OP posts:
MrsHathaway · 12/07/2017 10:27

Sorry e1y1 - that was a bit subtle Grin and I was worried OP would infer "it's probably fine".

endofthelinefinally · 12/07/2017 10:27

Have you seen a rheumatologist before? If you are already "on their books" you could contact the nurse led service. The people on the generic appointments number cannot help at all. Only the consultant's secretary or nurse specialist will be able to get you an earlier appointment.

Ineverpromisedyouarosegarden · 12/07/2017 10:27

Sorry I should have said I understand how desperate you are and it's a really difficult situation. Flowers

travellinghopefully12 · 12/07/2017 10:27

Endofline, thanks I will email MP now. I would phone but I keep thinking rheumatology speciialist might phone back even now and I want to keep the line free.

I was on Methotrextate for three years before and stopped because DP and I were discussing children, but I couldn't even pick up a baby when I am like this, or go to it or whatever, so I am putting that on hold.

OP posts:
seventhgonickname · 12/07/2017 10:28

If you can find out which your consultant at the hospital is the call the secretary for cancelled appointments or any early availability.

e1y1 · 12/07/2017 10:28

I'm never usually known for being subtle Grin.

endofthelinefinally · 12/07/2017 10:29

Stress will make your symptoms worse.
If you are signed off please just go to bed and rest.
I know it is hard but autoimmune conditions need rest.

Mulberry72 · 12/07/2017 10:31

I'm on Methotrexate (injections). I wouldn't take the tablets, definitely not. IME Methotrexate doesn't have an instant effect anyway, it has to build up.

Your hospital should have a Rheumatology helpline that you can phone if you need steroid injections etc, try phoning them for advice.

QuestionableMouse · 12/07/2017 10:33

Prescribed methotrexate put my mum in hospital. Please don't take it, it has the potential to make you seriously ill.

Keep phoning the consultant and ask for an appointment. There are other similar drugs that can help.

BlueThesaurusRex · 12/07/2017 10:36

I take methotrexate and as Mulberry72 said you will need to build up the dosage before you see any effects.

It's also a high risk drug so needs frequent blood/liver function testing. Please don't take it - I understand you're hurting and as a fellow sufferer my heart really goes out to you.

Contact the rheumatology department and explain your desperation- in the meantime, can you take ibuprofen?

BahHumbygge · 12/07/2017 10:41

My mum used to take methotrexate for RA... it's a hardcore, serious drug, that as a PP said, has to be prescribed by a consultant. Think it's also used in cancer treatment as chemotherapy. My mum had to have regular blood tests to monitor her. It's deffo not a drug you can take casually like a bit of surplus co-codamol or whatever. Get back to your GP/rheumatology and get an appointment for a review.

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