benepali: Hi everyone, can anyone tell me how long it... - NRAS

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benepali

Rockky profile image

Hi everyone, can anyone tell me how long it took for them to feel a difference in their RA after taking Benepali injections. My husband has not been controlled well with his RA since diagnosis really in 2019. He has been worse than ever lately, currently on Hydroxychloroquine and Prednisolone and on week 4 of Benepali injection. Feels no difference whatsoever. Still swollen fingers, wrists walking like he is 80 years old (he's 62). Can't even work. Awful and feel that no one cares on checking with him, hard to get hold of Rheumy nurse and the whole situation is just soul destroying for him, and me watching him like this.

Anyway any answers about how long it took to make a difference would be great.We were hoping by now to have noticed something!

Thanks again.

27 Replies

It can take up to 12 weeks. Hang on in there. Hope it works

Rockky profile image
Rockky in reply to vonniesims

How long did it take to work for you? thanks

vonniesims profile image
vonniesims in reply to Rockky

About a month I think

It took longer than four weeks for me, around a couple of months I started to notice a gradual improvement and it got better and better as time went on. He will have to be patient as four weeks is no time at all, I know the wait is hard but 🤞🏻 for him it’s not too long now for him to start feeling better.

Rockky profile image
Rockky in reply to KittyJ

Thanks. How long have you been on it for and are you still well? thanks again

KittyJ profile image
KittyJ in reply to Rockky

I’ve been on it about 4 years now and take methotrexate too, it is still working for me 😊

Rockky profile image
Rockky in reply to KittyJ

My husband was taken off Methotrexate because of liver readings.Still on Hydroxychloroquine though. Thanks for the reply.

We (me and my rheumatologist) were about to throw in the towel with Benepali when I got to week 11 with no change. It started to work at the end of that week, literally a day before I had an appointment with her to discuss changing it!!!

Rockky profile image
Rockky in reply to helixhelix

Thank you for the reply.

I have been on Benepali for about 4 years.It did take a while for it to work approximately 3 months) and I was also going to try something else

Then it kicked in and my oh my what a difference it’s made

I am virtually pain free apart from occasional flares but still doing well

Hang on in there

Regards

Brian

B

Rockky profile image
Rockky in reply to Brikel

Thank you.

RA2002 profile image
RA2002 in reply to Brikel

I am very happy with Benepali, I have been taking it for years with no serious side effects and like you, am virtually pain-free. I had to cease the injections for two weeks prior to some surgery and I developed a lumpy, itchy rash on my neck and chest. The practice nurse at my GP's surgery had no idea what it was but advised me to "get some calamine gel and antihistamines at Savers" (!). This 'treatment' was useless and it was only when I resumed Benepali that the rash disappeared.

Hi Rocky, glad you got replies from people happy with Benapali. I was on Adilamumab but after 3/4 months had to stop . I had repeated UTIs and diverticulitis whilst in it. For 6 months I was on nothing . I have not seen the consultant for over 2 years.

My GP will not discuss these drugs.

In March I started weekly injections of Benapali.

I started nose bleeds and scary acid reflux at night. ( scary because I have persistent AF). I repeatedly left messages for the rheumatology nurse about my concerns.

I also had increased joint pain the day after injecting. I really want these drugs to work but they don’t seem to work on me. I have Ankylosis Spondilitis and Psoriatic Arthritis

supposedly . On latest phone appointment with the nurse I was told to immediately stop Benapali. That was it, nothing else. Still no contact with the consultant. Six weeks after stopping the drug my hair is still falling out , my feet are really painful and very very painfully cracked.

Makes me quite miserable.

Hope your husband soon has consultation and drugs which help!

Rockky profile image
Rockky in reply to Luludean

Thank you.

I have ankylosing spondylitis, and for me Benepali started working from the first dose, reducing stiffness initially. That is very unusual though, they say it can take 12 weeks to see improvement. 5.5yr on it is still working along with methotrexate. 4 weeks isn’t long, and unfortunately will need to be patient. It may be worth asking his rheumatologist if he can increase his prednisolone dose whilst he waits for it to kick in. Does he take regular nsaids, if not that might be an option for now. Fingers crossed he sees some improvement soon. 🤞🤗

Hi it took from several months to two and a half years for me to notice anything, but as I didn't have any side effects (losing hair etc.) I stuck to it. Total game changer. Can walk again without a stick! Wonderful

Rockky profile image
Rockky in reply to Salamanca21

Brilliant, thanks

Hi ya I've been on benepali or etanercept as started on enbrel for 11 years now, went through alot of the DMARDS but nothing worked , had my first injection and worked within 3 days for me and has done ever since, even after the change from enbrel to benepali which is what I was worried about! 😊

Rockky profile image
Rockky in reply to Dave74

Great, thanks

Hello Rocky.

I agree with others that your husband will need to give Benepali up to 12 weeks for it to work but it may work sooner than that and I do hope so.

You don’t say what dose of Prednisolone he is taking so he could ask his Rheumatologist to approve an increase for a few weeks to help him cope. Do get your husband to contact his Rheumatology nurse or Patient Advice and Information Line at the hospital to let them know how he is suffering. I do the latter by email and send photos of problem areas (it was hands for me recently) and got a quick response.

Unfortunately our Rheumatology departments are so overwhelmed at the moment they don’t have the manpower to keep checking up on patients regularly and rely on us to let them know when we are struggling.

Rockky profile image
Rockky in reply to Lolabridge

Thank you. He spoke with them today and they said to stick with it but didn't offer any other advice. He also asked them to check his bloods which he had done yesterday. Thanks for your reply.

Hi Rockky, so sorry to hear what you and your husband are going through. I was started on Benapali in 2018 when combination of methotrexate and Hydroxychloroquine was nolonger effective. I was started on Benapali and methotrexate 20mg. It took approximately 10 weeks for this to kick in and until recently this worked very well for me and allowed me to be active in all areas and was a great relief as I nolonger experienced flares ups and pain..

RA is so different for each person and some drugs and combinations work for some people but not others. Hang in there and hopefully your husband will see improvement. If not please insist on different medications and combinations. When I have experienced flare up whilst waiting for new dose or combinations to kick in - I have asked for a steriod injection to get me through particularly difficult period and it has helped. Difficult decision due to bone thinning but I could not cope with the pain and risk of erosion. I have found homeopathy really useful too so check this out if possible. In addition blood tests showed vit D deficiency so I now take high dose.

There is the progress element of RA and I now suspect the whilst Benapali had worked well for me, I am now possibly experiencing the next progression for a number of reasons ie long covid, stress etc. So time to talk with consultant about further tests and what options are going forward including if there are any trails.

I hope things improve soon. Take care 🙂

Rockky profile image
Rockky in reply to Beanyynwa

Thanks for your reply. They wouldn't give him a steroid injection.

Hi Roccky

I felt the same way as you, I didn't think it was working but then all of a sudden it kicked in, I think about 10 weeks for me but since then not looked back.

I have had to come off it a couple of times for dental work and started with a few aches and pains but within a couple of weeks of taking it sorted the issues back out.

Stick with it and sending best wishes and hope that it kicks in for you soon.

Rockky profile image
Rockky in reply to netball7

Thanks a lot for replying ...we will wait for it to kick in ... hopefully!

I was diagnosed in 2019 and am in my 60s. I went through many of the drugs your husband has and am now on Benepali and 15g of Methotrexate. Together after 3 months they work fine. It does take time. Good luck 🤞

Hi there I am on benepali and it took 6 weeks to work I am on hdry and lefluomid and they seem to work well together. Every now and then I have flares. I have noticed my hands and fingers are very swollen on this drug but overall am good. Good luck.

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