Benepali-night pain

[Ouchyjenna]

Hi all. I'm on my 3rd week of Benepali injections which are AMAZING for the first time I've been able to.half my steriods. I'm experiencing no swelling and I've been able to stop using my walking stick on walking short distances. It's great. But I'm having a return of pain at night. It's every evening and it's quite severe pain in my back, knees and feet, Sometimes my fingers. There is no swelling but warm joints.I don't know if it's because I'm over doing it in the day but it's affecting my sleep because the pain is not relieved with pain meds. Is this normal with benepali. I'm scared to mention it when I see the consultant In case he stops the Benepali. The little relief I'm getting in the day is so nice I don't want him to take it away. Does anyone still experience pain whilst taking this? I really don't want to increase the steriods because I'm so desperate to give my body a break from them. I'm so grateful to be on the medication I feel bad for moaning 😞

[Yogi-bear123]

Ive been on benepali for six months and although so much better than I was still have pain in all the joints u mentioned but with no big visible swelling. ( tendons and soft tissue pain I think)

I've been trying to come Down off the steroids and do wonder if it's that is making pain? I upped them yesterday as was really not feeling good and voila,felt fantastic. I can only think that is what is contributing to the pain?? Anybody with answers most appreciated!!

Good luck with the benepali,it's early days yet....

[Hessie5 in reply to Yogi-bear123]

Hi Yogi, the frustrating thing with the steroid is it masks the pain, but does reduce the inflammation, so weaning off them is ideal. What steroid do you take? Also have you changed your diet too? As I often think did I eat something to trigger the pain. Wishing you well. 😊

[Yogi-bear123 in reply to Hessie5]

Hi,yeh am pretty good with my diet...no night shades etc. Limit dairy and sugar.. Like Mandalou says,moving helps ( most of the time( what is that?) maybe the blood pumping faster around your body helps dispapate the inflamation?

3 years of lots of steroid jabs and 20 mg -10 prednisolone down to 5 mg for a few weeks ,really pretty good then wham had a fall taking the puppy out and stirred it all up again. Have just had a dexa scan which looked pretty good and only on 7.5 pred now ...so manageable I think,will go down to 6.5 tomorrow.

Sounds like we are all pretty much in the same boat...not perfect!

Didn't realise that at my hospital ,if u come off a biologic to see if another works better ,u can't go back on to the one that worked a bit....so puts the patient ( and doctor) in a pretty bad place really...😔 Having said that,my consultant said if you go back to a drug it never works as well ,so changing drugs is definitely a risk.

I do however wonder if a different drug would alleviate more pain? But like you all,fearful of losing the position I am in now ,as it's far better than a year ago.

Bit of an essay...apologies...good to talk to people with similar stories.

[Hessie5]

Hi - I am on Entanercept I think it is the same. I had my fourth injection last Wednesday. It has been good thus far, alleviated a lot of the pain but it is in waves. I had a terrible flare about 2 weeks ago, relaxed and healed after 2 days or so. I didn’t know if it was something I ate or the injection, gosh RA can make one paranoid! I take the injection solely, as pray I don’t need to double up with other meds. I have been careful with what I eat and drink too. I really don’t want to go back to tablets. So overall my pain fluctuates, so far, touch wood and pray, it’s been positive 🙏, I take each day as it comes to be honest and make the most of it 😊. Hope this helps, it’s okay to vent. Stay strong.

[Mandalou]

Hi Guys

Im just 2 years in on Etanercept, Enbrel first then switched to Benepali.

I take 400mg of Hydroxychloroquine a day as well.

My liver couldn't tolerate Methotrexate, or Leflunomide and I was badly allergic to Sulfasalazine. In a way Im so grateful for failing on the traditional DMARDS as this fast tracked me within a couple of months of diagnosis onto Biologics.

I had the initial horror 5 /6 months that most of us go through. Too boring to list here and got steroid induced Diabetes to boot just to really add to the agony.

I am happy to report I am now steroid free after being on 40mg of Pred daily, with the Etanercept I was able to taper off completely.

In my exprience Benepali is great and I was able to go back to work in a very demanding physical job but there is never a day that RA doesn't rear its ugly head.

If I slow down for one minute be that in the car driving, or as a passenger having a coffee while out shopping.etc etc I could go on I stand up as if I was 85 years old.

Never mind 'morning stifness' its as if I petrify if I keep still.

I feel Benepali stops the swelling and most of the joint tenderness but I still feel waves or flashes of that bone searing deep internal pain ( for example in my fingers or my feet) thats nothing to do with inflammation but what I have come to realise is obviously the underlying disease doing its merry thing.

Very hard to tell the Rheumy nurses even the specialists and explain what you are feeling especially if your blood markers are showing low inflammatory levels.

I think to be fair Ouchyjenna ( good name)

You are only a few weeks in. Everything will take time to settle.

Steroids are the devils sweeties as someone once so brilliantly described them on here.

I hope the pain you are suffering eases off and as you rightly mention maybe its a result of you being more active in the daytime.

Remember we are made up of many different symptoms and rampant inflammation leaves all sorts of damage in its wake which will take time to repair.

Not sure my knees and feet will ever be the same.

Good luck to you and like you I am grateful everyday to be receiving this treatment.

Mx

[dbestdeb in reply to Mandalou]

The devil’s sweeties, that’s a good name for steroids. My rheumatologist took them away from me as soon as I started seeing her. Now I’m grateful, then not so much. She said they make you feel better but they don’t make you better and they do take a toll on your body. I’m now on Enbrel, which I believe is the same as benepali and I have no night pain specifically. I do have some pain though, that seems to come and go. I too am doing more because I’m feeling better, so I figured that was it or maybe it hasn’t taken total effect yet. I’m on it for 6 weeks. I too am afraid to tell the dr that I still have some pain in fear that she’ll take it away, but she did tell me in the beginning that it takes a couple of months to get the full effect

I hope you get better the longer your on it. Best wishes.

[Yogi-bear123 in reply to Mandalou]

How long have you been off steroids? Your pain sounds like mine. Same thing,no swelling,blood markers fine. But proper deep pain and yes,moving definitely helps!

[Mandalou in reply to Yogi-bear123]

Hi Yogi

Aproximately 21 months with no steroids. Give or take. I started to taper off very soon after starting Enbrel but tapering was a long process and I was lucky my Diabetes resolved after I was steroid free.

I try and walk on the running machine as often as poss. I never know what part of my body is going to work or give up on me from day to day though.

Interesting about your pain too, its a really odd sensation and the reason I know it is the Rheumatoid disease itself is that its exactly the same pain in my two fingers on my left hand that I had for about four years before the rest of my joints exploded!

The original poster Ouchyjenna has positive news in that he/she has halved their dose of steroids but it might actually be too fast a taper perhaps hence the night time pain?

Mx

[Yogi-bear123 in reply to Mandalou]

Have u never been tempted to try a newer biologic to see if u can get rid of more pain. So difficult to know what to do,whether one should just be thankful for at least having some sort of life back?

[Darth_tuck]

1. Don’t feel bad for moaning it’s good to share!

2. Benapali wont reach its optimum until 8-12 weeks so the pain as previously mentioned may be to reducing the steroids please stick with the benapali for a little while yet it can be amazing but it’s a slow burner ie takes a while to be fully effective

[Creakywrists]

That’s good to know - I’m also in my 3rd week of Benepali which has already had quite an effect. Still have wandering pains though particularly at night. I thought they might be due to being more active and/or my osteo making itself felt now that the rheumatoid pain is less. I’ve not been on steroids but had cut anti inflammatories, probably should keep on taking them for a bit longer !

[Titch55]

I am on week 11 of Benepali. I started to get pain at night in both feet/lower legs at week 8. It feels like I am standing in water that is VERY hot and I can’t get out. Putting them out of the duvet doesn’t work. I take Co codamol and read for a bit then I can get back to sleep. Rheumatology nurse said to mention it to Consultant when I go in March.

[Ouchyjenna in reply to Titch55]

I also have this burning feet / legs but only at night since this medication

[Yogi-bear123]

It is interesting these wierd pains that u can get on the drugs. Last week I was not great, pain in in all joints,this week really pretty bloody good! Hopefully it is just a re-wiring of some sort? Maybe even some of the pains are memory pains and they will go in time? Or is it just a fluctuating process of switching the inflammation off? Somepain maybe sub clinical damage that has already been done...

Who knows... but I do think the more we communicate the more we can learn from each other....

and maybe one day they will find a way of switching the disease off for good.

That would be nice hey!

[Ouchyjenna]

Thanks for your messages. I'm plodding on through it and hoping things will settle at night. Its certainly easing my daily pain and thats a bonus. I also take risedronate for osteoporosis so im wondering of the pain of the RA has eased i can now feel that pain of that ? Every thing is a guessing game.I've decided to stop reducing my steriods because I'm just about coping now and if i reduce it anymore im going to end struggling too much