My Rheumatologist has recommended me for weekly injections of Benepali .
I take salazopyrin with no obvious adverse effects. I could not tolerate methotrexate or leflunomide .
I am mid seventies and my wrists and knuckles are badly damaged ,having had RA for around 45 years. The pain I get is more of an ouch than an ache and my wrists are weak, swollen and tender.
He is concerned that my tendons might rupture. I am exceedingly nervous of taking biologicals as I am concerned of serious infections and illnesses.
I would be grateful for comments on Benepali both good and bad.
I would also be grateful of any surgical treatment or the name of any surgeon or hospital which carry out successful surgery to damaged tendons to restore mobility. I am located in South Buckinghamshire and are prepared to travel.
Thank you for all your support.
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AnnieJ123
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I’ve been on Benepali for the past few years and have had no increase in infections or illnesses, in fact the only illness I’ve had is covid recently. I was reluctant to take it the same as you but gave in eventually as I was going back to the state I was in when first diagnosed and increasing mtx wasn’t working. I don’t think anyone can tell you what your cancer risks are exactly as we are all different but lots of people here take it and are doing well on it. Let us know how you get on, I decided in the end the risks didn’t outweigh the benefits and I don’t dwell on what could happen but probably won’t or I’d never take any med. 🤗
The question could be how long is a piece of string ? lots of other factors so its entirely unpredictable so do you smoke/drink/ stay active/have high blood pressure/ a family history of the conditions you list ? Personally I used it and it worked but did cause more UTI's so was changed to Etanercept which actually isn't as good in my opinion. Its about risk v benefit and it does sound like you already have some damage. I'm lucky as good medications mean I have little damage but I've had other issues related to RA and am very grateful that the medication means that I live an active and fairly normal life. I'm not sure why you're so worried about it as even paracetamol does kill people , penicillin and steroids for example also can do real damage and in my case an ordinary every day medication gave me kidney damage. If I were you and I'm not much younger I'd give it a go ! what have you got to loose at 75 quality of life is really important.
I delayed starting a biologic as was worried about infections. Amd inhindsight this was stupid as I just had an extra year of poorly controlled disease. I was on it for about 4 years with no infections at all - until I picked up a virus but that can’t be blamed on the biologic. I am now on another one, which is also doing fine.
I am sensible about hygiene - so no eating from open buffets, or shared plates - but not obsessive.
The cancer risk is miniscule. Here we have dermatology check-ups once a year, which I don’t think they do in the UK. But just be aware of dramatic changes to moles and stuff.
When considering the slightly increased risk of some cancers, remember that's an increase from an already low starting point.
The biggest factor in whether or not you develop certain cancers is your genes and we can't control them. The things we can control may slightly influence whether we succumb to a genetic risk or not, but we can't protect ourselves 100%. In other words, any risk increase from taking medication probably won't make any difference to outcome at all.
As for infections, I believe the best thing we can do for ourselves to ensure recovery from any illness is to keep our underlying disease under control.
I had cancer before I had RA & had never touched a DMard or a Biologic.It wasn’t the inherited kind either.
Now been on more DMards than I can remember, & have successfully taken a Biologic for six years….with no more cancer….& not even a cold…let alone a serious infection.
I reckon you either get cancer or you don’t….& tbh I’d rather have cancer again than have RA.
Cancer is curable, RA as we all know to our cost…is not.
I would like to say a huge thank you to all who have replied. You have all been a great comfort in offering reassurance. It is like anything you fear, once taking the initial step you question why you worried. So thank you. I would still be interested in success of hand surgery but I might post this as a separate issue.
I have three tendons that snapped in one hand and was going to have them fixed but the recovery time was very long and I spoke to people who had had the same operation and none of them got full movement back and most were not happy with the movement they had, expecting more. So I haven’t had it done yet but may do one day although I have got used to my fingers the way they are now.
If you haven’t got ruptured tendons yet then even more reason to start a biologic to avoid that risk I would think. 🤞🏻
A few years ago I tore a tendon in my forearm that operated my thumb. As it was my right hand I couldnt bear the thought of not being able to cope without the use of my right hand/forearm, so decided to put up without a functioning thumb. You only have a 3month window of opportunity to get it fixed so now too late. I now have trouble opening my purse, retrieving coins….undoing clothes, etc etc. Wish I could turn the clock back😭
Only just seen your post, so a bit of a late reply. With regard to trying a biologic, I can only agree with those who have said to give it a go. I'm 54 and have had RA(JIA) for 40 years. Most joints are badly damaged, and I've had many salvage/repair/ replace ops!! I've been on 2 biologics so far. Infliximab from 2007-2009, and Humira from 2009 until now. I've had no major side effects from either. I'm waiting to switch to Rituximab now, but only because the Humira is not working so well now, which is the same reason I switched from Infliximab. Although biologics came too late for me to prevent much damage, they have definitely helped and have been worthwhile. I take the Humira alongside steroids and 3 other DMARD's. I think from my perspective, any chance you have of preventing any more damage, within reason, take it.
As for the hand surgery, I've had 2 tendon repair ops both many years ago. The first was my first op ever, when I was 16. I felt something snap and suddenly I couldn't bend my left thumb. Bit of a nuisance as I'm left handed! Had an op to split the extensor (I think) tendon on my index finger in 2 and share it with my thumb. I was in plaster for 6 weeks after. It wasn't too awful, and worked well. About 18 months later my middle, ring and little finger in right hand suddenly flopped, and I could no longer hold my fingers out straight. 3 tendons ruptured. Had another op. Thought it would be quite simple as before. It wasn't! It was very painful, and after a couple of weeks in plaster hadto wear this awful splint that tried to suspend the fingers in the air via some elastic contraption. They had taken a piece of bone from my wrist as that had been rubbing on the tendons causing the rupture, and hadto somehow repair the other 3 broken tendons. It did not work very well. I could never hold my hand out straight again (although it was better than before the op), and from then on, my fingers never seemed to move independently again - to stretch one out they all moved. Very strange.
My thumb repair lasted about 30 years, but is now ruptured again. To re-do the repair would require tendon being taken from my leg somewhere and no guarantee of success. The hand surgeon agreed when I decided not to go ahead! The repair on my right hand also ruptured again - that lasted about 20 years. I saw the surgeon about that too, but again, we agreed to leave it as it could end up worse. Plus, as Evie rightly says, there is a "window" for getting these things done, and I was way past it. In recent months my left ring finger has flopped, plus my right index finger. It's a flippin' nuisance as my hands are like little curled up paws!! I saw a hand surgeon again, who didn't even want to entertain the idea of going anywhere near them. Many years ago, they seemed to be very gung-ho about offering different types of hand surgery (knuckle replacements, fusions, synovectomy's, etc). I turned down knuckle replacements and a thumb fusion, but did have a synovectomy to all the fingers on my right hand. That actually worked well. In the last few years, the two hand surgeon's I've seen have both had a much more cautious approach. The first one (who was very nice & specialised in RA hands) said they were less likely to push surgery onto you nowadays - especially if you were "managing" as the results could be unpredictable and you may be worse off. Whether that's true across the board, I don't know. Obviously it was a very long time ago when I had the ops, and things may have improved? Also,these are only my personal experiences. Many people have hand surgery with great results - like I did with the synovectomy. I do think that as Kitty says, it's another pro for trying the biologic as if you can prevent tendons ever rupturing, then that's the best treatment of all. Hope that helps and good luck with your decision. 😊
Thank you so much for your post and I am so sorry you have had so many unsuccessful operations on your hands. Reading your post, I think surgery might be too late for me as I cannot move my little fingers and ring fingers independently . I had naively thought surgery was an easy fix. I suspect too much damage to my fingers have already been done. When I asked my rheumatologist if surgery was an option he just said no, and I never have ultrasound to see what is going on. I did not know there was a window for tendon repair and one tendon in my ring finger has already ruptured. Like you I have had RA for a long time (40 years ) and for most of these years only had treatment with hydroxychloquine , sulfasalazine, methothotrexate, lleflunomide. Sulfazalazine works best but joint damage to my wrists and fingers is getting worse. I now realise that I have no choice . I am mid seventies and the quality of life is important. Your post has helped me considerably . Thank you and I wish you all the best. Take care.
If you have a history of cancer there are some biologics that are still prescribed those that are not anti-tnf. If you have a particular worry about this you should discuss with your consultant. I have history of melanoma and am on secukinumab (COSENTYX). Am being monitored regularly 🤞.
I've been on benepali and 3 JAK inhibitors. The side effects have been minimal, much less so than traditional DMARDs all of which left me feeling quite, quite ill, with some serious side effects.
I had a few minor viral infections with Baricitinib, was changed to Toficinitib, now on Filgotinib with no infections, at all with both of them.
I find them 'clean' medications, easy to take, no side effects, the risk of infection is small, recent research becoming available suggests the risk of infections on these meds may well have been overplayed. Easy to find on line if you wish to follow it up.
I take no extra precautions than I did with any other RA med, but am sensible and make my choices. For example, I don't visit friends who have a heavy cold, but I see my grandchildren when they have colds (they are worth the risk, almost constantly have colds, I would rarely see them if I tried to avoid colds), but I haven't fought a cold from them yet 🤞. If I have a small cut, or whatever I clean and cover it....but then I did that pre RA days 🤣. Pretty much life as normal, just being a wee bit more aware.
Thank you for your reply and naming alternatives . I had a BCC removed a few years ago so will mention this before starting the treatment . Best Wishes . I am now more confident to try them .
I e been on benepali for almost 6yrs. For many of those I worked as a nurse on the frontline, being exposed to far more infections than most would be exposed to. I actually got more infections before biologics. The reason being my body was too busy fighting inflammation that it wasn’t stopping infections getting past. As for cancer the risks are extremely low, with NASS saying there is no evidence of increased risk in the recent studies. Don’t forget that uncontrolled inflammation itself increases your risk of cancer.
I went from struggling to reach my knees to touching the floor in 3 weeks of using it. My quality of life improved dramatically, and I wish I’d been offered it years earlier before damage occurred. I take no precautions with it. It only targets one part of your immune system, in this case the cytokines tnf. It turns the dual down to what would be a normal level for most people. I rarely get infections since being on biologics. You can always stop immediately if you don’t get on with them, you don’t need to taper.
I started on a biological treatment (adalumimab) just over a year ago. It transformed my Rheumatoid Arthritis symptoms and I know when it is wearing off as the stiffness pain and swelling in my metacarpal and first phalangeal joints starts to return about three days before I'm due the next injection.
If anything I have had had fewer infections since being on it, but I think that is partly due to more people being aware of the dangers of spreading their own infections and taking to public place avoidance or mask wearing when they have coughs and colds.
I have pre-cancerous lesions on my skin but they seem much as before and are being removed at about the same rate....just had two more removed. But I'm old with very fair skin, so I'm at extra risk.
Everything is a balance, my life is going to end at some point fairly soon and I would like to be as pain free and mobile as I can manage meanwhile!
hi AnnieJ123, I had a reverse replacement shoulder done in High Wycombe, the consultant was Mr Pendse, a really lovely man. All my follow up treatment has been Stoke Mandeville xxx
Thank you Mary for this. I shall keep a note of the name of your Consultant. So useful to know. Hope you are much better now and good luck in the future.
HI Mary, Hope all good with you. Having my first Benepali injection next week. Have you had hand surgery at High Wycombe, Stoke Mandeville, Oxford or Reading ? These are the nearest hospitals to me. Do you recommend a hand surgeon in this area. I suspect I might need hand surgery in the near future. It is always good to have the name of a recommended surgeon.
hi AnnieJ123 hope you are as ok as you can be. I had a partial wrist replacement in 2017. This was also carried out at Wycombe with all follow up appointments at Stoke. I this the surgeon was cal Mr Chenigari (excuse the spelling). I have really good movement in this wrist but have been getting a lot of pain on the opposite side. Can I ask who your Rheumatology consultant is ?
Hi Annie, I had tried Benapali injections, but they didn't work on me. The day I started the injections, I started getting cramps in both legs. I continued th for about 6 or more months, I felt very weak. All I wanted to do is sleep. Thank God. I am on another one now called Sarilumab injections which I take every fortnight, and these are doing their job. Live all medications there are side effects, but can do a lot more nowadays , don't get tired as I used to. Speak to you Rhumatalgist, he/she might change the injections if required.
I have been on Benepalifo almost 3 year’s and I feel great for at least 2.5 years but no serious problems. I have been on Salazopyrin for 22 years, mtx didn’t work for me Beneali has given me back some resemblance of health that I didn’t have. I will let you make up your own mind but I’m glad I took the risk.
Been on Beni for a year now and it's changed my life for the better. Not had any infections.I had TB as a child (now 76) and limited as to what I can have. I don't think what if and I'm getting on with life.
The question is like how long is a piece of string as so many variables. I had it for over 2 years but it caused a lot of UTI's so changed to Orencia. That is ok but not as good as Benapali, but of course it has not caused any UTI's but has given eczema so there is always something !! Its risk v benefit question and to put into perspective my husband a fit, healthy man with very mild blood pressure and a bit of asthma got prostate cancer. Found early and treated, he is cured so I'm saying its not out the risk but also when caught and how treated. I would also say that a medication gave me an acute kidney injury. It was an everyday prescription drug and without any warning I now have life long ironic kidney disease. But I'd still have taken that medication because the risk was minute and life is about managing risk. I'd just finally say it is monitored and could vastly improve your life and if you don't like it or it doesn't work then it can be changed.
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