Flare up while on Benpali

[Gjbrose]

Has anyone else suffered with a flare up and increased pain in joint’s while taking Benpali, really worried about still continuing with it !

Have had swollen hands which hasn’t happened since the year I was diagnosed 2021

[Jackie1947]

No I haven't . How long have you been on it? Also do you have osteoarthritis in the hand,?

[Gjbrose]

Hi Jackie started it on August 31rst my hands have always been painful but not swollen like this for a long time, I’m diagnosed with RA & Fibromyalgia

[KittyJ in reply to Gjbrose]

If you’ve only been taking it 6 weeks it could be it’s not fully working yet so you can get increased symptoms, it took a while for it to work for me and was a gradual reduction in symptoms. I do still get flares though from time to time but nothing like before it. Don’t stop taking it, give it time to work.

[Jackie1947 in reply to Gjbrose]

Give it time as it takes time to start working. Too early to judge

[Runrig01]

I’ve been on benepali 6.5yrs, I still get occasional flare ups but no where near as bad as before. I have AS and find it helps my spinal symptoms better, and need MTX for my peripheral symptoms. Is it possible you have osteoarthritis on top of RA. I have severe OA of my knee which flared resulting in inflammatory OA. I’m going for a steroid injection on Wednesday to hopefully settle that as well as tendonitis and enthesitis of the same knee. Despite the severe pain my AS is under control, having had an mri to ensure my benepali is still working.

[AgedCrone in reply to Runrig01]

I have had RA since the late 1990’s…..before then around 1994….way before any signs of RA had appeared I was a passenger in a car that was rear ended…resulting in serious damage at C4/5. I had surgery where a bone graft was taken from my hip & a fantastic young surgeon repaired my neck.On being discharged he very apologetically told me, I would probably “get a touch of osteoarthritis” as I got older. Now that OA is giving me more darn pain than I remember any RA joints ever did.Also got OA in both hands & orthopaedic surgeon has advised that is best “left alone” . ..& as I’m not revisiting any more RA drugs….it’s just hope for a few days respite now & then.

I can’t take steroid injections & Rtx of course does not help OA…I have tried all sorts of analgesics including opiate patches…the results of the side effects of all of them…were more distressing than the pain of the OA!

So yes you really can develop OA on top of RA!

[Runrig01 in reply to AgedCrone]

Yes, unfortunately any injury that alters the contours of the joint, even slightly, will expedite the wear and tear process. My current knee pain that has me housebound, is both inflammatory OA, as well as inflammation of the patella tendon and the lateral ligament of the knee. Because all my tendons are calcifying and shortening, they are more prone to injury too. As an orthopaedic ruse, we used to warn all our patients, even the young sporty ones, that OA was almost a given unfortunately.

[AgedCrone in reply to Runrig01]

The vertebrae weren’t just altered…they were cracked in half…I was the luckiest person in the world …the vertebrae didn’t go out of alignment & snap.

I wasn’t a youngster either I was in my mid 50’s…as I say luck was really on my side.

Your knee sounds really excruciating..does the steroid injection really help?

Before I had a bad reaction I found Depomedrone hit the spot.

[Runrig01 in reply to AgedCrone]

I’ve not had the steroid injection yet, hopefully Wednesday. It is excruciating and has been frustrating. My knee initially started buckling, then a few days later fell in the shower and gashed my leg open. That wound took 10 weeks to heal. A week after the fall I attended UTC, where it happened to be my gp on call. As soon as I mentioned the fall, she insisted on A&E to rule out spinal or pelvic fractures due to my AS. I said but it’s my knee I’m concerned about, she reassured me they’d check that too, which they didn’t. Then I tried to push through the pain till late August when I would have happily let someone amputate. My gp had done an X-ray, which showed an effusion, so she palmed me off to my rheumatologist saying the knee problem was coming from the spine. Rheumy disagreed and ordered an mri of spine and pelvis, which showed my biologic is still keeping inflammation down. So he ordered an mri of my knee. Shortly after seeing him, the pain & mobility got much worse, so gp arranged ambulance to see if we were missing something in the knee. Laughable as she has never examined my knee. A&E dr said it looked like the lateral ligament was damaged and ordered an urgent mri for the morning, so I tried to sleep on the trolley in the A&E corridor as there was no beds. She came in the morning to say it would be 2-3 days, so I could go home and wait, then return immediately to A&E for a treatment plan. Ended up being 9 days I waited, ortho dr at A&E said it showed severe OA, but needed to speak to rheumy re inflammation. It has taken getting pals involved as 5 weeks later the report had still not been done, and my rheumy understandably wouldn’t inject till he knew if tendons or ligaments were damaged. It is now 15 weeks since the injury, and still have received no treatment. I’ve now been told of the severe OA, and that the patella tendon is inflamed, which I’ve been saying since day 1, and where the lateral ligament attaches is inflamed. Thankfully I know what exercises to do due to working as an orthopaedic nurse, as private physio won’t see me without seeing the report. If you managed to read this long reply, well done 😂😂. I should say my other knee has been injected twice with wonderful results, so hoping for the same this time. You couldn’t make it up. 🤞

[AgedCrone in reply to Runrig01]

What a saga..,but sadly I’m not surprised. I have zero faith in GPs these days…when I fell & fractured vertebrae atTll/12..I knew I had done something serious & actually managed to see a GP on the day….never seen him before & never would again….he refused an X-ray & made a big fuss about a huge bruise developing between my shoulder & elbow..,which was just a xxxx bruise nothing that needed attention.

I kept telling him how I had wrenched my spine at waist level & he just would not listen…it took 5 weeks to get an X-ray..by which time I had consulted my rheumy…who was disgusted….especially when the GP got the wrong vertebrae on the letter to the rheumy…it turned out apparently if I’d had an injection within a couple of weeks things would be a helluva lot better than they are now.

Fingers crossed for Wednesday!

[Jackie1947 in reply to AgedCrone]

My RA is in remission but the pain of OA in the hands is really painful.

[AgedCrone]

Do you wear a splint at night? I find the pain is worse at night…I used to wear a splint.l.used to but found lately it makes things worse.

I now now tape 1st & 2nd finger + 3rd & 4th fingers together at night…& it does seem to help.

I have already had a carpal tunnel decompression on the right hand, but that has now gone pear-shaped, so I’m off to get more nerve tests to see if more nerves need decompressing.

[HappykindaGal]

I have and it lasted for 18 months. Just easing now. It was down to huge stress over the last 18 months though. Knee totally collapsed and was unable to walk for a while. Improving now thankfully but it’s a slow old process. My blood test score increased to over 30 and stuck there. It’s now back in normal range.

[Blackberrywine]

Yes unfortunately. Sometimes neds don't work, or suddenly stop working. I know some people have had issues with meds not working after Covid jabs for some reason. This wasn't the case for me, Benepali just didn't work.

Maybe check with your doc.

[Evie3]

Poor you. With all my previous meds I knew when they had stopped working and in the case of Humira I stuck it for a year and it never worked. We r all different but think u need a conversation with your RA team.

[Salamanca21]

No I haven't. It's been wonderful. Take it up with your rheumatologist, it appears it doesn't suit you. You may need to try another treatment. Good luck!

[EarthRock]

Morning, I was forced from Enbrel which worked like a dream to Benapali due to nhs trying to cut down on costs. Benepali never worked for me from day 1 till a year later when I was finally put on Jaks. The Jaks work brilliantly.For me the lesson is we are all different and what works for me may not work for someone else.

Suggest contacting your rheumy team to give them an update but like most of our meds they can take a good 3 months to kick in. Discuss options of additional pain relief alongside benapali whilst your waiting.

It's tough when our meds arnt working as well as they could be. Keep I touch with your rheumy team so they are well aware it's not quite right.

Good luck.....

[medway-lady]

I get the occasional tiny shadow swelling over right hand knuckles but it works a lot better than Abatercept which hardly worked and caused skin problems. I’m sure that it’s very early days for you so give it time. I’ve been taking it for a for a few years and in two goes as asked to go back on it. Don’t forget now the limit on medications so it’s worth not giving up until your sure it hasn’t worked which could be six months or more although you should get an effect in about three months.

[Bethany02]

Hi I've been on it a few years and had four flares within a very short period of time had to get a steroid injection. Now going on to tociluzumab but couldn't start a few weeks ago had bad chest infection.🤷qué sera