Has this happened to you?

[Doughnut61]

I was diagnosed with RA 16 months ago anti ccp positive. MTX on and off all this time but liver is not liking it!! Doc and Rheumy have said I need to stop and just take HYDROX - Has this happened to you? I have slight aches in both ankles . I am frightened it will all get really bad again ☹️

[AbbeyRoad]

Do you take MTX by pills or injections? I can't take pills because it create havoc with my liver; the sub cutaneous injections work very well for me. I can even drink a bit of alcohol without it bothering my liver. [I am not recommending this, but my Rheumy is OK with me having a bit of wine now and then.] Ask for injections if pills don't work for you. And...with injections, more of the medication helps you because it goes directly into your blood stream.

[Selbel in reply to AbbeyRoad]

Hi they have to try you out on the pills first to see if you can take them, no elegiac reaction, as if you have the injection it's directly in your blood stream just read that above 🙃xx

[Doughnut61 in reply to AbbeyRoad]

Hi Abbeyroad thank you for your reply . My concern is they want me to just stay on HYDROX only ?

[Valdun]

You always can try something new! If I had liver issues, I would definitely try every thing I could! Major problem when you have multible issues! I don't know if you can take predizone, but my Dr. writes me a script for desperate times! Always ask your Dr. for alternatives!

[Bon1]

I guess they want to experiment with whether the hydroxy can hold everything at bay without the MTX. But if it doesn't there are other options like sulphasalazine which may well be fine for your liver.

From your previous posts it does seem as though they are keeping a fairly good eye on you so one would hope they would not just leave you in the lurch.

However I think you should share your concerns with your medical team and be reassured about the plan for next steps if the hydroxy alone proves insufficient.

Best of luck

Bon

[nomoreheels]

My experience is slightly different but I have had my liver object to MTX, this is my tale. I'm seropositive too & started on HCQ but it became less effective so I also started MTX 15mg (double therapy). When after a few months it was clear HCQ was no longer working & I was on 400mg so there wasn't the option of increasing the dose it was stopped & MTX was increased to 20mg but my ALT & ALK phos rose so back to 15mg I went. Liver results returned to normal but disease activity was apparent so I tried 20mg again. The same happened so I changed to 20mg injections, same again. Down to 15mg I went & eureka! Both liver & disease happy. Over the years since I've tried going up to 20mg twice but unsurprisingly my liver objected so I tried 17.5mg which seems to be the magic amount both are ok with. Because it's clear I can't go higher than 17.5mg other DMARDs have been added over the years for disease activity to be kept in check, first sulfasalazine & currently leflunomide but I've been able to remain on MTX for 7 years by injection now. The difference is changing the route means that MTX is more effective as less of the med is lost. It goes directly into the blood stream rather than the long way round, a short cut if you like, so often even though there's a reduction in dose by subcut it's equally effective than a slightly higher dose taken orally.

It may be that as you had need for double therapy HCQ/MTX that your concern is realised & things may start on a downward turn now MTX has been withdrawn. So, if this does happen & if your Rheumy is open to it, maybe you could either try a different DMARD or MTX by injection with a reduction in dose.

I hope my tale helps & gives some help.

[Doughnut61 in reply to nomoreheels]

Thank you so much, your reply has helped me a lot X I really appreciate you taking the time. I have aches in both feet and wrists at times, but fortunately not enough to take pain killers. I just worry so much about deformities and getting the crippling pain I once had a year ago . I couldn't even walk!! So I was blasted with 20 mg MTX 400mg HYDROX and prednisolone 15mg. This was a shock to the system. But after 6 months it did the trick . Just scared as I don't know what to expect? Doc and Rheumy nurse said to ring help line if anything changes. Love to you and thank you for caring. Xx

[nomoreheels in reply to Doughnut61]

Bless you, hang in there, I know it can be frightening when you think back to how you were when you were diagnosed but I shouldn't think it will ever be as bad, it hasn't been for me & I could barely walk before diagnosis. Niggles will happen, it shows you responded to MTX & now you've stopped it you've maybe some disease activity. I have this at times, in my feet too, they're my gauge as to how I'm doing but my erosion hasn't progressed in a while so try not to worry, just do as your team has said & call them if things become too painful before you're due to be seen again.

Have you been prescribed an NSAID at all? I'm wondering if your Rheumy or GP would think it an option whilst this to'ing & fro'ing is going on. It would keep your inflammation more in check. Meantime try not to fret, that's not going to help any & hopefully next time you're seen there's a plan in place whether it's trying injections or a new med. Take care. x

[Doughnut61 in reply to nomoreheels]

I think that is the HYDROX I am on 200mg a day X enjoying a glass of red tonight 😀 Haven't done that for a year X