To Take Unprescribed Medication (I am desperate)

[travellinghopefully12]

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I have some methotrexate left from before - the date on the bottle is 5/10/2015, so maybe out of date, but I know this medication will fix it.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.

Thank you all

from this thread and your suggestions I have some practical steps to take, and I will take them but will still look at the pill packet and remember that it's there. Just knowing it is there is somehow helpful even if I don't take it...does that make sense? I am not normally irresponsible and would tell a friend not to take it, but this pain and inability to move is horrible. I even had to employ a cleaner! (employing someone to clean for me is not natural to me.)

Anyway, thank you.

I will contact my MP, find the rheumatology cancellation line and call them and say I am happy to have any appointment and contact the nurse led service again. Are steroid injections that different to prednisone?

GP told me to go and float around in the swimming pool, so I might try that this afternoon.

Blue - I have diclofenac which is better than Ibuprofen I think?

You're ill. You need to try stop feeling guilty about work, housework, all the other things you would do if you weren't. None of those things 'need' doing and even if they did, you aren't well enough to do them. I know it's really hard, but listen to your DH. He's right.

Having to wait to see the specialist is incredibly frustrating but out of your control. In the meantime, please, please, please don't take that medicine. Get your DH to return it to a pharmacy for safe disposal so that you can't be tempted.

YWBU, sorry. Plus, deep down you must know that a few odd doses won't make any difference. Methotrexate doesn't work like paracetamol. It must be out of date too. I was always, always told not to take it out of date. It's a cytotoxic, even in small autoimmune doses.

I'm sorry there's a long wait, these clinics are just so overbooked. Can you phone for a cancellation? Is there a nurse helpline?

What dose of pred are you on btw? There may be other issues at play. Pred will dampen down any inflammation, so if it's not working, you do need that review.

Morphene methotrexate is a specialist initiated medication only. once someone is stable on it so bloods all normal no reactions then under what is called a shared care it can be transferred for GP prescribing if the practice is happy to take it on and the patient is happy to continue monitoring. If in inj form stays under the consultant for prescribing.

Unfortunately there is little the GP can do in this instance it is the consultant that needs to see OP and prednisolone can often help. some practices will be happy to give an injection of steroid to help in the meantime locally these are normally done by the rheumatology nurses whilst people are awaiting an appointment. Seems odd that OP seems not to be under regular follow up.

Hope you get somewhere soon op

OP you need a warm swimming pool

I'm sorry to hear you're in so much pain, OP I have rheumatoid arthritis and I know how completely crap it can be. I have to urge that you don't take the methotrexate though. I took it for years and it's amazing but it's strong and realistically fairly nasty so I wouldn't want to combine it with the other drugs you're taking as you can't know what side affects you might get. Also, you would need a blood test before starting it again.

Do you have a contact number for your rheumy nurses? I find mine to be really helpful.

Do you have any naproxen? I find that takes the edge off nicely. Otherwise, hot bath, heat pads and get yourself on the sofa with a blanket and a mug of tea. Screw productivity

Something else that helped me was a far infra red sauna. Our local spa has one. Not cheap but it gave me some relief from the pain and stiffness. Definitely worth looking into

No, firstly it's out of date and secondly methotrexate is a powerful, toxic drug and you have to usually have monthly blood tests to ensure it's not damaging your liver and kidneys. I think you need to take folic acid as well.

Travelling- yep, Diplofenac is better! I like the swimming suggestion too. (If you can get to a pool!)

Please don't look at the pill packet and I urge you to arrange for them to be disposed by the pharmacy.

Disclaimer: I am a scientist, not a clinician; my background (BSc and Masters) is in the field of biomedical sciences. Methotrexate (MTX) must only be used under close supervision as it is a highly toxic drug. As others have said, regular blood tests need to be done in order to monitor liver and kidney function. In addition, drug-drug interactions between MTX and NSAIDs, of which diclofenac is one, are well documented. This specific interaction results in a decrease in renal excretion of MTX; the presence of MTX in the body for longer increases adverse reactions and deaths have also been reported.

When I went on methotrexate for RA, I had to have a blood test every month - so obviously it is regarded as something that must be closely monitored. After a couple of years with no problems, it's now every three months. So, just taking it without supervision might cause problems.

on the phone to rheumatology nurse specialist! thanks all

Dd has Ankylosing Spondylitis and our GP prescribed morphine and oramorph to help with the pain even before rheumatologist confirmed diagnosis. Can't your GP prescribe morphine? FWIW it eases dd's pain but doesn't get rid of it. She is prescribed Humira as an immunosuppressant that isn't working just yet but it's early days.

They are calling back as they have a queue but at least I spoke to someone.

I was in remission so only being seen once a year. When I was onMTX originally I had monitoring but there were never any problems with it.

Humira does sound miraculous, I will ask about that when I next see dr gray. Are you in the city with a close called 'fleshmarket close?' I am too, we might be under same hospital

Please get the methotrexate taken back to the pharmacy. Trust me, I understand exactly how you feel, but you need to remove the temptation. It would be a really really bad idea, plus if you are arranging a consultant appointment, it could mask vital symptoms that you will need to be able to tell them about.

Agree with all PP saying don't take this. It is slow to work and needs regular blood monitoring plus folic acid regardless of whether being 2 years out of date is a factor.
Diclofenac is stronger than ibuprofen but if you are on it regularly you ma need something like omperazole to protect your stomach.
Definitely pester the rheumatology CNS's to try to be seen earlier. Depending on your diagnosis they may consider antiTNF drugs - often used in conjunction with methotrexate but work more quickly
Good luck

Travelling, no it's from an Ian Rankin novel but I know where you are though .
We are waiting for great things from Humira but dd had either a reaction or an infection after the first injection. They couldn't decide which was the reason her face swelled tbh as her blood tests didn't indicate either really even though her face was teice the size. Dr at A&E said he had seen some awful infections in patients on Humira so think everything comes with a price to pay unfortunately. She has her next dose on Friday in hospital in case it was a reaction though so a little bit anxious

Just to add to the consensus - please don't take the methotrexate. It's a cytotoxic drug even when IN date, let alone almost 2 years expired! I know you've had it before but it won't really help (not quickly anyway) and may well cause some serious problems.

I'm on it, as well as shedloads of other stuff including Humira. I understand your pain and desperation, but you need to see a specialist nurse and/or the rheumatologist.

Hope things improve for you soon

Methotrexate has to 9 build up in your system, and you have to regular monitor your liver funtion (by blood tests) while you are on it. You know own this, if you've been on it before.
It's effective, but not something you play around with.

please don't. contact rheumatologist. insist insist insist. I am so sorry to hear this i lnow the pain myself. but don't take unprescribed medicine especially if it could be out of date.

Hey, thanks all. Original post came from a place of desperation, and I am feeling a lot (psychologically) better this evening and more equipped to cope. I followed a lot of the advice on here and got through to a nurse consultant and I have an appointment on Thursday 20th. It is an incredible relief. I have also spoken with my line manager about a phased return and am generally feeling more positive.

I may well go back on MTX but I will do so properly, and I will get DP to take the old packet away. I just wanted to make it stop, anything to make it stop, I felt like tiny horses with burning hooves were running through my joints, but I feel so much happier/calmer now.

I'm glad you're feeling better now. Pain can drive us to the brink of insanity.

Mornings with these hideous rheumatological diseases always feel the worst. That, and, the small hours of the morning.

I'm so pleased to hear you're being seen next week, that's great news. Fingers (metaphorically) crossed that they can get you on a treatment plan fast.