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I have some methotrexate left from before - the date on the bottle is 5/10/2015, so maybe out of date, but I know this medication will fix it.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

I know exactly that place and its a horrible place to be.
I've had RA for 20years now as I was diagnosed as a teenager and am currently off MTX as I'm breastfeeding. I am 'lucky' this time as I've got Humira and prednisolone to help (first child I did it without the Humira) but I do miss the MTX and need to get back on it as some days the pain is awful.
This week sleeping is difficult because my feet, knees and hips are incredibly painful, the duvet felt too heavy on them as they hurt so much.
Easy I should just stop breastfeeding I was helpfully told. However that comes with its own challenges, when baby wakes in the middle of the night and DH is on nights, it takes all the effort in the world to just pick baby up out of the cot and stick him on a boob. There is no way I could make it downstairs and get a bottle (he won't take formula only cows milk or mummy's)
Same goes for first thing in the morning.
So for now I'm making the compromise of 'coping as well as I can' and weaning him off as quickly as possible so I can get back to the MTX.
My consultant has added it to my notes that I only need to phone up to sort out restarting and all the monitoring etc so I don't need to try and get an appointment in the hectic clinic schedule although she's squeeze me in if I need to see her.
Coming off MTX to try for kids was one of the hardest things I have ever done (and also the reason my kids have an 8yr age gap) so I know the struggle first hand and will not be doing it again.
There are other options that you can try when TTC instead of MTX which is a big no no, they might not work as well for you but may take the edge off enough to try. I would chat to your consultant about it.
Good luck, hope you get sorted

So pleased for you op

So glad to see things looking brighter!

Wonkylegs... 20 years...wow! I only developed RA after having my LO and I had to stop BF after 6.5 months because I couldn't take the pain anymore. I too struggle with the night feeds but fortunately DH doesn't work nights so can send him downstairs for bottles

I've come off everything to get pregnant. I'm hoping it'll go into remission but I'm concerned about post delivery and bfing etc

Glad you're feeling more positive OP Roll on next Thursday! I found steroid injections very effective although for me they didn't last more than a week. Most people get 4-6 weeks of relief from them though

Wonky and Cake - I know it's not possible to have kids on MTX but I feel so disabled that I would probably not cope with a baby. DP is coming to my consultant's appointment though and we are talking through options. We are both 31 and would like a family, but may have to put if off for this. It's a tough decision as we both have ageing parents though.

Wonky, I am so sorry, that sounds awful. I hope he weans soon and you can go back on the medicine to protect your joints.

but it's such a trade off isn't it? I would love to BF if we have a child, but may not be able to. So many things to think of, so far in the future (or not?)

Thank you all x

If your consultant is helpful (some are better than others) they may be able to explore alternatives to MTX that can control the RA and still allow you to TTC. Not all DMARDs are a no no with pregnancy and the same goes for the newer anti-TNF options.
I coped with (not enjoyed) two pregnancies with active RA and two active babies - you work out ways to manage, and may do things differently - hydrotherapy during my last pregnancy was heaven and a real relief that made the last months bearable.
I don't know if you've been on it but the Arthritis Care online discussion forum had a great pregnancy support board with people who really understand. It really helped me when we were TTC & had DS1.

I would ask your consultant about the biological drugs that are available. That's what I went on to eventually. Safe to conceive and I'm told I can continue to take them during pregnancy although I've chosen not to.
Mine is a fortnightly injection which is manageable :)