Benepali symptoms

[evie04]

I was diagnosed with ra 17 years ago and been on daily 2mg steroid and 15mg mtx the last 10 years and felt OK for much of that but my consultant wanted to get me off steriods so eventually in October I was put on the benepali with mtx being weaned off steroid. Initially was looking good and although my hands and feet arent inflamed or stiff, my legs feel like lead weights, have frequent indigestion , feel oddest twinges in my breasts like pins and needles and have pain in my lower right back and side and tummy . Is anyone else experiencing these odd symptoms with benepali?

[Neverending63]

I’m on Benepali and like you swelling has gone but still get very stiff and painful joints also legs feeling like lead. I have periodical lower back pain anyway which Benepali doesn’t seem to do anything for. I do get pins and needles but they are mainly in my hands. You need to discuss these things with your rheumy. You could also contact the help line/nurse attached to your rheumy as they may be able to advice you.

[evie04 in reply to Neverending63]

Thank you for reply. I see consultant in 10 days and will discuss with her but was interested if anyone had similar symptoms.

[Matilda_1922]

Hi eve 104

I’ve been on Benepali since November started on 25mg initially increased to 50mg end of January.

Yesterday on waking my right hip and thigh were very stiff and heavy with some pain. It did improve over the day but today woke the same.

I have also had some breast pain too.

My wrists swelling has reduced but remain stiff and if I knock my wrists I get shooting pain.

I have an appointment with consultant neit week so will ask if what I’m experiencing is side effect of benepali.

[evie04 in reply to Matilda_1922]

Thank you for reply yes I too will be discussing these symptoms with my consultant when I see her in a few days. Although underlying ra symptoms seem in check these 'other' ones are not nice.

[andy9131]

Hi I’ve been on this new drug for 4 weeks now after 2 years on enbrel, which was great but now I’m not feeling good like you back pain but also hands shoulders legs hips knees and feet are really sore now having to take painkillers now not had to use them for ages will be contacting consultant about it.

[evie04 in reply to andy9131]

Sorry to hear you're suffering. I ve never been on enbrel so can't comment about the differences but I think I might ask if I can try it on my next visit. I bet they won't get the funding for it. It took 6 months for then to get benepali funded go me!

[andy9131 in reply to evie04]

Thanks eve enbrel was and is really good did wonders for me it’s not good when decisions are made without discussion with you it’s just your going on this due to cost but not in so many words

[helenlw7 in reply to andy9131]

I was on Enbrel for about twelve years and it worked for me. I wasn’t symptom free, but much better than I was before. Three weeks ago I changed to Benepali. The first week was ok, but now I have a more pain in my shoulders and wrists. I’m keeping a bit of a diary to show my consultant in July.