When will MXT kick in

[Mmafox]

Happy new year everyone. I wonder if I could have advice on methotrexate. I was started on MXT 15mg in March last year. I was weaned off prednisolone in July and in October started having a flare. Consultant decided to increase MXT to 25mg. He wants me to take steroids again but I’m not too keen because the reason he insisted on putting me on MXT in the first place was to take me off steroids (he told me all the cons about being on steroids so why would I go back). I am just wondering how long the new dose takes to kick in because it’s been over 3 weeks since I started the new dose and all it’s doing is preventing swelling. My body hurts, I have rash on my face and blisters in my mouth and chest pain with exhaustion.

[PMRpro]

I don't know about lupus and MTX - but the only option for management of my a/i disorder is long term steroids. We experience rheumies who are scared of pred and want us to "switch" to MTX as it is so much safer all the time. However - it does NOT replace pred, certainly not for us, it MAY allow someone to get to a lower dose of pred though even that moderate improvement isn't guaranteed. In RA the effect is said to take up to 6 months,to set in and it is certainly not immediate.

Why would you go back? If MTX isn't working why take it and accrue the risks there are with it? I've been on pred for 11 and a half years - I haven't self-destructed yet, I live a fairly normal life with no unpleasant symptoms. I have no identifiable adverse effects, no sign of osteoporosis, diabetes, gained weight and lost it again despite pred etc etc.

I would rather NOT be on pred, we are all the same, but I'm not taking a drug that achieves nothing for me. I tried MTX - the fatigue was overwhelming and all the MTX achieved was some pred effects I had never experienced before! I felt worse than I had with the unmanaged illness. So I said no thanks.

[Mmafox in reply to PMRpro]

Prednisolone works like a charm for me the only side effect is weight gain, the opposite is true when I’m on MXT. I was made to believe steroids were from the devil, but after reading your reply I have half a mind of going back on them. I have 3 young kids and I need the energy to get through this lockdown.

[PMRpro in reply to Mmafox]

Weight gain can be mitigated by cutting carbs drastically, especially processed ones and added sugar. Doesn't have to be keto necessarily although some of us don't get away with as much carbs as others (me, at least if I want to lose weight), Low carb - not no carb.

I really like this site as an introduction to what is OK and what is less so:

dietdoctor.com/low-carb/keto

The pictures make it easy to get the idea of what to avoid or limit - like fruit and root veg.

We have a couple of people on our forum who still try to preach pred is the devil's tictacs - but many of the adverse effects can be found in patients who can't live because of their illness - I had PMR for 5 years without pred and I gained weight because I was immobile, was depressed and moody/bad-tempered because of constant pain and isolation, immobility is also a risk factor for loss of bone density, my hair went mad because of the illness. Any inflammation that isn't being controlled and is causing symptoms is causing some damage. It isn't as simple as pred bad, no pred good as so many doctors would have you believe. Of course dose also is significant but with low to moderate doses the adverse affects are nothing like as bad as they claim.

At the sort of doses that are used for my illness the same adverse effects are seen at similar rates amongst an age-matched population not on pred. You are obviously a lot younger than me - but I imagine you are in greater need of a life than an older retired person like me who can look at the cleaning and say sod it ...

[Littleandperfect in reply to PMRpro]

Hi .. I’m new to this site .. it’s a lifeline! The only meds that have cleared my subacute cutaneous lupus, diagnosed 18 months ago is 30 mls prednisone!! As soon as I wean down under 10 mls back it comes.. I currently look like I’ve had acid thrown over my back, chest and arms 😞however, my dermatologist refused to prescribe steroids and I’m currently taking mepaprin, hydroxy, painkillers, amitriptaline to try and sleep and topical mometasone and dermal 500 .. I have till April !!! To see an improvement, if none then metatrsxate is his answer 😏..I was a reasonably fit ..survived breast cancer and radiation 3 years ago .. 72 year old before this hit me ... can I push for the steroids do you advise ?? Thanks for any advice 🤦‍♀️

[PMRpro in reply to Littleandperfect]

I don't know enough to say. But I would say that 10mg pred is a not unreasonable dose for long term use - there are several illnesses where patients require that for life because there is no alternative - and some are dermatological. I've been on pred for well over 11 years, much of it at above 10mg, and I haven't self-destructed!

I would be looking for another opinion if it were me - especially if 10mg pred removes the need for even some of that catalogue of drugs. One of the biggest problem in the older patient is polypharmacy. More than 5 medications is regarded as a risk factor for all sorts of things including falls. With the best will in the world, at the age of 70+ we aren't going to be on pred for 30 years are we? I am a jam today person I admit - but currently being a sole carer I am not about to mess about with any different medication that is not guaranteed to give me the same QOL as my pred does at present and which might have some unpleasant adverse effects - like the diarrhoea that is very common with leflunomide which is next on the list.

[Littleandperfect in reply to Littleandperfect]

Thank you for that! I will try?? To get my dermatologist to prescribe steroids ASAP 💪🤞

[Littleandperfect in reply to Mmafox]

Yes!! I’ve just managed to get a new prescription from my dermatologist for prednisone!! Only for 6 weeks tho .. think he must have taken me seriously when I told him I’d had enough !! 😟🤦‍♀️