Any advice for coming off mtx against m

[Frankie63]

I have been on mtx since October 2016. My consultant wants to increase the dosage to 25mg by injection but has not given me the prescription. I have called his secretary every day but still nothing. I have run out of mtx and don't have any to take on Tuesday. I haven't actually been diagnosed with anything particular and this has been going on for 11 months. Don't know what to do 😞 I'm on morphine patches, oxycodone, gabapentin, cyclizine and of methotrexate but still in dreadful pain most of the time..any advice?

[Ali_H]

Hi,

I would get in touch with my GP on Monday re the med situation and if nothing happens and you're left with no MTX for Tuesday I would go to A&E and explain the pain levels plus med situation - take someone with you because the sad fact is people are more ready to do something if there is a 'witness'. You (and witness) could rock up at consultants clinic on Monday and ask for your missing script at the front desk.

All the best

Ali

[Frankie63 in reply to Ali_H]

Thank you so much! I was along the A&E route as I'm at the end of my tether being fobbed off and ignored when it's so important to get these meds! My inflammatory markers are off the radar as well!! I will let you know what happens but thank you in the meantime!

[cathie in reply to Ali_H]

Phone call would be good

[Frankie63 in reply to Ali_H]

I contacted GP and Consultant secretary on Monday as I still hadn't received my scrip for mtx. The GP called back and said because I haven't been diagnosed with anything as yet, he can't prescribe mtx as I'm not on a stabilised dosage so therefore cannot be part of the sharecare set up, which allows the GP to prescribe it when required! The Consultant's secretary said, once again, that she had posted the prescription! It's still not here. I was meant to take my weekly dosage yesterday!! I don't know if it will arrive today..if it does am I safe to take it one or two days later than normal?? By the way..thanks for your advice..it helps mentally to have support from someone who knows what they're talking about! Frankie 63

[helixhelix]

Missing one week of MTX is unlikely to make a huge difference. It's a long term drug that builds up slowly in your system, and the effects also wear off slowly. So although missing it is not the best thing to do it's not a disaster.

More important is getting a treatment that works for you. Where you on a low dose before as you should be starting to feel some improvement after 5 months on it?

And I presume by "not diagnosed with anything in particular" you mean that you're under the heading of undifferentiated connective tissue disease? It would be highly irresponsible to prescribe MTX unless the doctor was sure you had a disease it could help!

Keep nagging your consultant....

[Frankie63 in reply to helixhelix]

The consultant thinks it's an auto inflammatory disease. I was on 15mg a week until I was admitted to hospital in November with pneumonia. The mtx was stopped immediately but the consultant put me back on it 2 weeks later on 12.5mg. This time he wants to increase the dosage to 25mg by injection but hasn't prescribed it. Thank you for your advice. I have been calling his office every day and his secretary promises to see him and sort it out but nothing since. I will try again tomorrow as I'm due to take the mtx Tuesday!!

[Frankie63 in reply to helixhelix]

Hi HelixHelix! I posted some of my problems to you lovely people a month ago. I still have not been diagnosed with anything but am now taking mtx 15mg tablets per week with 5mg folic once a week. My pains are literally all over my body but not in the joints. I had to stop mtx last week as I was having a PET scan and had to be mtx free! My pains have been shocking! I have morphine patches 20mcg per hour, gabapentin 1800mg per with paracetamol and also Oxycodone 10mg when required..apparently a very strong cocktail of painkillers! Yesterday I had a temporal arterial biopsy as well as having had the PET scan 2 days before. My inflammatory markers are still really high..ESR 58 & CRP 69. Has anyone had these sort of tests and still really high inflammatory markers whilst being on mtx and strong painkillers? If so, what was the diagnosis? I know the consultant has mentioned vasculitis! I also had a bone marrow biopsy which was borderline for lymphoma! My headache, funnily enough, have not been as bad since I stopped mtx for the last 2 weeks but the pains have been much worse since stopping it! Sorry to go on about it but I thought that this would be the best place to share symptoms and problems?? I have been ill without a diagnosis since last April and I can't work or socialise any!! Any advice would help??😢 Frankie 63 xx

[Mall]

My Gp completes my prescriptions for methotrexate, 25 msg by injection. This followed an up date letter from my Rhuemy. Maybe you could request an urgent tel call from your Rhuemy dept to GP so that Gp could issue prescription. It will take time to build up in your system so won't be an instant answer. Hope it resolves your in flammation.

Mall

[Frankie63 in reply to Mall]

That's a good idea to get the Rheumy to call the GP..if anyone can get through to the department!! Will try that tomorrow..thank you so much for the advice, Frankie 63

[Mall in reply to Frankie63]

If not emailing a letter to your GP.

[cathie]

It's not good to come off Meds suddenly I know from experience. I'd get in touch with GP to get an urgent prescription

[Frankie63 in reply to cathie]

Yes I know..that's why I have been desperately trying to get this prescription! It shouldn't be left to me chase the consultant but in this case I have no choice! Thanks for your advice Cathie..will let you know what happens. Frankie63

[cathie in reply to Frankie63]

I remembered what a previous reply said that mtx does build up so you shouldnt have adverse effects for a while. But they shouldnt keep you suspended like this! Hope you can catch someone effective tomorrrow

[janmary]

I don't know how things work in your area (assuming they DO work!) but in ours, once you go onto MTX injections they have to be sourced from the hospital pharmacy and the prescriptions are managed by the specialist nurses, who have to check blood tests have been done and are OK. Do you have access to a specialist nurse - have you checked whether she can sort it out?

Good luck - a few days won't make much difference as MTX lurks in the system

[Frankie63 in reply to janmary]

I haven't even been given blood test forms as I have in the past. They no longer provide a specialist nurse system and yes, the injections have to be sourced from the hospital pharmacy!! I will ask my GP to try to sort it out tomorrow. Thanks for your advice..it's really helpful.

[janmary]

Our hospital pharmacy won't supply unless they can see that blood tests have been done recently.

[Frankie63]

I eventually received my prescription one day after my usual mtx day so had to take them a day late. I spoke to the consultant and he told me that my ESR was 54 and CRP 68..hence the pain! I am on morphine patches, gabapentin, paracetamol and Oxycodone for the pain which in turn makes me feel very sick. I'm having a nuclear bone scan on 21st March. Have any of you gone 11 months without a diagnosis and if so, what was the eventual diagnosis? My mtx has only been increased by 2.5mg to 15mg per week. This is apparently because he doesn't know exactly what he is treating! I just want a normal life again and I'm at the end of my tether having test after test, loads of medication and nothing being diagnosed!! HELP!!!

[Simba1992 in reply to Frankie63]

Like HH said, the problem seems to be that mtx is really not working as it should and it may be necessary to add other meds. I have understood that it's very unusual to keep perscribing mtx alone for such a long time without seeing any results. I also am a little baffeled that you have no diagnosis and still being perscribed mtx.🤔

[Frankie63 in reply to Simba1992]

My thoughts entirely Simba! I know that when mtx is given in a bigger dosage it can be used as chemotherapy and because my inflammatory markers only came down when I was on high dosage of steroids ( 60mg per day), my Rheumy referred me to haemotology, thinking it was lymphoma? Even then, I was on mtx since October and lymphoma was only questioned in December!! So what did he think I had in October to put me on mtx without a proper diagnosis?? I don't know..I'm so confused and in so much pain...I just thought that maybe someone in this group may have been through a similar investigation?? Sorry to bother you all but it seems like you have all had differing experiences with mtx and Rheumies?? Frankie 63