change of drug

[Darciedoodles]

hi everyone

I have been on methotrexate for 18 mth but my platelets have dropped dramatically over the last few months so I have been told to stop immediately

I haven’t had any meds for 5 weeks and have now had a really bad flare up in my hands , wrists they have given me prednisone now for 2weeks but that’s not the answer to solve the problem.

I have had severe chest infection and cough whilst on methotrexate and my hair has thinned beyond recognition

They now want to put me on leflunomide which I am nervous about ?

I have sjorens syndrome and bronchiatis

any positive feedback re lefunomide ? I’m so nervous about taking it ( hair loss etc )

thanks in advance

DeenDeen

[medway-lady]

I’ve got those two RA and Bronchectasis plus CKD and thyroid too and MTX was stopped due to hair loss and feeling like I’d been set on fire. LEF was brilliant, at first it made the pain worse then after a few days I woke up and the RA had gone into remission. I had no more side effects and the RA was no more than 2 pills at night every day. Hair returned to normal and I’d take it again tomorrow if it was allowed, sadly due to an unrelated toRA kidney injury I can’t take it anymore but no medication since has worked as well. They’ve all worked just not as well. It doesn’t work for everyone but is all you can do is try it. It was defiantly better than biologics for me. Be warned the pain at first in my hands was much worse so get some paracetamol in, and fingers crossed it’ll work for you.

[Darciedoodles in reply to medway-lady]

Thanks for the info much appreciated .

I’ve woke up this morning to both wrists elbows and knees in agony.

I’ll try anything today but was told I couldn’t take ibuprofen whilst on prednisone? Paracetamol and gels not working

Hopefully after my blood test tomorrow they will have a better idea.

So debilitating I live on my own so this is the first morning I feel I can’t do anything for myself with my hands and wrists in pain .

Regards

Deendeen

[RAGuy]

You needed to stop MTX. I had to stop suddenly because of different side effects, but that can happen. I have progressed through 8 treatments over 38 years, but at around five years each, I am happy with that.

So, my point is that if you worry too much about side effects, you will not take anything. The most important thing to do is get control of your RA to protect your joints and also to stop all the other things associated with RA, such as heart damage.

Be aware of side effects, especially those that may cause issues with any other conditions you have, but keep in mind your need for treatment.

The bottom line for me is deciding that there are only two types of side effects. The ones you can cope with and the ones you can't cope with.

There is so much information to absorb that it can be challenging to focus on the essentials. I hope I have helped.

Good luck and best wishes.