New here - Methotrexate question

I have a temporary diagnosis of undifferentiated mixed connective tissue disorder as my tests confuse all the drs I see and don't define any one particular condition. The rheumatologist expects RA will be the final diagnosis.

I have scleritis (inflammation in the eyes)
Symptoms of IBD and some tests say possible but visual inspection says not
Joint/tendon swelling & pain
And lots of fatigue.

Im under the care of rheumatology and opthamology.

Ive lived with it all reasonably well until one dr realised it wasn't normal and since then I've been on high doses of steroids for about 18months with a max of 12 weeks off broken up over that time. I couldnt go below 20 without flaring and being put back up to 60 for longer each time. It averages about 35mg prednisolone a day which isn't good and I'm starting to get long term problems from that. (Osteopenia, hair loss, thin skin, moonface & buffalo hump, moustache, huge weight gain, teeth problems, tapering pains & problems, the list is endless)

I then started immunosuppressants alongside the pred, MMF at first but I didn't tolerate them and came off them after 6 weeks and multiple infections.

5 weeks ago they then started me on Methotrexate 7.5mg. The first four weeks were great! No side effects at all and more energy than I've had in a very very long time, i still had slightly sore joints but i had energy for the first time in years. At the weekend my dose went up by 2.5mg to 10mg and I've to stay on that for 4 weeks before upping again.

The only problem is 24 hours after the first higher dose I've been floored with headaches, fatigue and nausea. I have no appetite. I feel horrible, like everything is tingling in my blood.

I don't know if this is a coincidence as I've not been sleeping much or if it is the raised dose. I don't understand why introducing the medicine to my system in the first place made me feel fine with absolutely no nausea or other side effects (in fact i felt great!) but another 2.5mg makes me feel like death.

I stupidly assumed i would be ok as i was at the start, and made plans for the first time in ages.

Is it normal to be fine at first but get worse with a tiny increase? Will these side effects wear off? Can a dose of 7.5mg of methotrexate be considered therapeutic or is it too low to do anything? I know they said it would take 3 months for it to work but the energy was lovely, not normal levels by any stretch but i could fill a washing machine, you know? I wonder if 7.5could be my optimal dose???

I dont see a rheumatologist again until september (yay nhs waiting lists)

Im so depressed today with this. Im in my mid 30s with a young family. I feel they're missing out on a good mum because all i can do is lie down and feel ill :(

Thankyou - your kind words were most welcome.

Thank you chartreaux! Yes i take folic acid everyday except the methotrexate day. I think its 5mg a day i take so quite a lot.

Im not sure the side effects are bad enough to qualify for injection. Im in the UK so while i have fantastic doctors and access to medicine i couldnt afford elsewhere, i dont get a say in how it is prescribed to me. I was told only if side effects were unbearable i'd get the injection.

I just wish the headaches would go. Cocodamol isnt helping at all. I shall look up biotin and see if that would help. Thanks again :)

Make sure to drink plenty of water. Especially on the mtx days. Water very important!