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

[Darciedoodles in reply to medway-lady]

Morning

I am on day 3 of Leflunomide and last night was a night from hell I only got to sleep at 7.30 to 9.30 this morning

From my fingers to shoulders it felt like they were twisting. Like when you wring a towel out after swimming excruciating pain

I iced both arms all night no respite.

As I had steroid injection ( they said would last to Christmas and had I 2 x 500 naproxen paracetamol don’t work what else can I take for the pain. ?

Any advice would be appreciated thank you

[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.

[Darciedoodles in reply to RAGuy]

Thanks for your response. 😊 After 20 mg per day of prednisone not working I had to have injection in the end as pain so bad a flare up in hands , wrists elbows etc meant I couldn’t use my arms .

They still haven’t given me the prescription for leflunomide which has been promised to replace the methotrexate so without the RA meds almost 9 weeks now and apt 3rd Dec to see Rheumatologist . Can’t survive on the steroids until then as I’m also taking naproxen and Vit D as calcium is low

Thanks

Darcey doodles

[RAGuy in reply to Darciedoodles]

I am sorry to hear that and angry that you are being left like that. I find that unacceptable. Use your annoyance to push them for help. Contact the phone help line. See your GP for pain relief. Call 111. Email your MP. Write to Buckingham Palace!. OK, I got a bit carried away there but you get my point.

Go get them!

[Darciedoodles in reply to RAGuy]

thanks. You’re right though.

[cpt13]

I am sorry I have not come back to you sooner. I have not taken Methotrexate for several months but now I am experiencing a lot of pain.

Because I am taking another drug for my Lungs prescribed by Oncology. I now feel I am going to have to take Methotrexate again to ease the pain.

As I am not seeing my RA Consultant till early November, I think I will stop the other drug for a day or two and inject Methotrexate.

I recommend regular lung check-ups. Preferably get referred at the same Hospital.