Hi
I have Rheumatoid arthritis for 46 years. I have had many joint replacements and too numerous treatments to mention, I was on Methotrexate for 20 years, but it damaged my liver, then Azathioprine for 5 years, which was no longer effective.
Been on Prednisolone for last 6 months due to Covid lockdown and have just started Biological Therapy Entarcept (Benepalli). I would like to hear from anyone on this as to how quickly I should see some results
I am on this drug at the moment and initially things improved quite quickly within 4 weeks really good results but 9 months down the line it’s no longer working. This is me .. there are many it has been successful for. Some saw improvement immediately others it was much slower
Thank you, very helpful info, I know everyone is different, but is encouraging to hear from others
I've been taking it now for 4 months with AZA too. It made me so sick and I got a UTI so it was stopped it affected my sinuses and had antibiotics and a spray to clear that up. And I thought I'll give it another go (cleared by RA consultant ) so a month ago I restarted and felt sick for a couple of weeks but that has now gone and I feel really well. I think I may have started it at a particularly low point, and am now glad I preserved. I did have the pen but found it hard to use and a bit painful so swapped to the syringe delivery. Its much easier and totally painless.
That is encouraging. I am using pen and find it quite painful and not easy to use due to my swollen weak hands, so I may ask to change to syringe
I have an old neck injury and a weak right hand so for me it was so hard to push the pen down but even my husband found it hard and he is very fit and well. I've Fragamin injections in the past so wasn't to worried about using a syringe but my goodness it's totally different to use. It doesn't sting at all the needle is small (compared with Fragamin) and I've never even felt it go in. Disappointedly easy to use. Healthcare at Home did contact me to ask if I needed tuition and I said no it was fine.
My rheumy told me it could work overnight....I waited 11 weeks and nothing! Then the next week, just as I was about to phone rheumy, it started working. And that was nearly two years ago and it’s been very good.
That's a long time to wait I hope you were on other medication in the meantime, but good to hear it eventually worked.
I was without any treatment during Covid, which was dire, but better now with steroids, hope I don't have to wait that long for some improvement
I stayed on previous 3 drugs which were sort of working, but not completely, plus steroids. Was also taking 2 drugs for latent TB, so my body ’t really know which way was up! I sort of feel that with all the other drugs in my system the biologic had a hard job to do....
I’m pleased to hear you’ve started on Benepali and I do hope it works for you.
To have battled RA for 46 years is quite a journey. I understand the majority develop it after age 50. So I wonder if you are in a special group of long sufferers?
I agree ot many people seemed to be diagnosed in their 20's. It would be good to hear from other long term sufferers as to how they have dealt with the many trials over the years and how it has impacted their life, especially now in my 70's with Osteoporosis and Osteoarthritis to contend with also
I’ll let you know in 40 years 🕺
Haha - it will be here before you know it!😉
I’m on benepali and it was more of a gradual improvement for me over a few months. You could be one of those who experience quick improvements, 🤞 for you.
I certainly hope so, even a gradual improvement would be good. I am running out of options been on so many medications over 46 years, most having either severe side effects or after time just not working.
Benepali has been the most effective of everything I’ve tried over the years so here’s hoping it is for you too. I haven’t managed to come off other meds but never mind 😁
Hi!
Just wanted to say hello and welcome from one 'long-termer' to another. You are a bit ahead of me though, as I've only had JIA/RA for 38 years!😊 Were you diagnosed in childhood or as an adult? I was diagnosed just after turning 14, but had symptoms for a few months beforehand.
Like you, I've had many operations and treatments including MTX for the last 30 years. Had Azathioprine for a bit too, but it didn't do anything for me so I was switched to Cyclosporin (which I still take). I imagine it must have been a pretty difficult few months for you on Prednisolone alone! Don't envy you that one!😳
I'm afraid I can't speak for Benepali as I've never had it, but I've had Humira for 11 years and that took 3/4 weeks to kick in. Prior to that I had Infliximab infusions for just over 2 years before they stopped working. At first they were great and initially I started to feel the benefits about 4 days after the first one, which was amazing!
I hope the Benepali works well (and soon) for you!🤞🤞
Best Wishes
Hello
I was diagnosed aged 27, but had symptoms for at least three years earlier.
Must have been a shock to be diagnosed at 14, hope the treatment worked for you at that early stage, it impacts so much on your life.
I had two young children, but found a positive attitude and trying to keep everything moving was my mantra, I carried on sewing and knitting, I have only just, at age 73 sadly had to give them up, but now teaching ladies to knit socks on 4 needles, I still enjoy pottering about in the garden.
Perhaps once Benepali kicks in I may be able to do more. I was just exploring textile art, which I would love to return to.
With very best wishes
Your story is very inspiring. All those years of pain and challenges and bringing up two children. A positive attitude as you say is very important and I’m sure your love of gardening also helps to keep you positive. I hope Benepali works for you , you so deserve that.
Hi
Thank you for your kind words, it's so good to hear from others who are dealing with the same problems, wish I had contacted the site sooner.
👍😄😁
Hi again Myra!
Thanks for your kind reply. I cannot imagine what it must have been like having two small children and dealing with RA. It must have been very difficult and tiring to say the least!
I'm very happy for you that you were able to keep doing your sewing and knitting for so long. Also, that you were able to start teaching instead once you were no longer able to continue. I think part of learning how to cope is finding different ways to carry on doing things we enjoy which you've clearly done! I definitely think it helps to keep interests going and look for new ones too as I believe that being able to distract yourself from it all (when possible of course), is very important and helpful.
No being diagnosed at 14 wasn't very nice, but to be honest, that can be said of all ages can't it? In some ways, I think it was easier (if that doesn't sound too perverse), as I suppose I grew up with it and my life developed accordingly. I really feel for all those people I read about on the site who are newly diagnosed and might have children, possibly elderly parents, busy demanding jobs and possibly very active hobbies. The disruption and shock to their lives must be devastating.
Unfortunately, the treatments back then - Gold, Penicillamine & Salazopyrin didn't really work for me. I had my first op at 16 and a further 23 since then (including several eye ops). I hadto have both hips replaced at 19, and thankfully that gave me some youth back. I lost the sight in one eye through complications of eye inflammation related to the RA and secondary sjogrens, but so far the other is holding up! Thankfully though, no heart or lung problems as so many others have had. Like you I've been on steroids for a very long time (27 years), and have the obvious side effects of thinner skin, puffy face (grrr), easy bruising and a number of stress fractures due to bone weakness. I also take Humira, Methotrexate, Cyclosporin and Hydroxychloroquine (for discoid lupus).
I hope all that doesn't sound too negative or anything - it's not meant to! Like you I've just tried to keep going and getting on with life as best I can. I worked for as long as I could, but hadto retire a number of years ago. I missed a lot of school through spending periods in hospital etc, but somehow got 5 O levels! I did A levels in my spare time in my early early 20's (once being given a few hours release from the eye hospital to sit an English exam) and then went on to do a part-time English degree at Warwick. What else can you say but life has to go on! It's not as we might have wanted, and some times are harder than others but we seem to muddle through, I think!
I never had children as I'd never been in a position to reduce drugs etc and to be honest, I didn't think I would do a very good job as I'm a bit useless around kids!😄 I take my hat off to anyone who has kids - RA or not!!
Anyway, that's a little of my background, and like you, I'm particularly interested in other long-termers and their experiences over the years.
Hope you are feeling OK today😊
I agree it is easier if you are diagnosed at a young age as you just get on with things. It was very interesting to hear about your history, you did very well gaining so many qualifications, what work did you do? Must have been difficult with your sight loss.
I am so lucky I have a wonderful husband of 53 years who helped me with the children, who when they were younger, soon were able to do things for themselves, they both helped with cooking and cleaning which has benefitted them today.
I was a bookkeeper to a very understanding family church restoration company, who allowed me to work from home at times, I had so much time off for joint operations/replacements, mainly feet, hands and shoulders, but stayed for 20 years before setting up my own company, so I could reduce my workload if I needed to.
I too had been on many of the drugs you mentioned but had forgotten about them, I have very thin sensitive skin and being a redhead (fading fast) bruise at the slightest touch I also have lung problems and just recently heart also. Just something else to deal with.
We do have a lot in common, the best being our positive attitude
👍😁😄
hi Myra
Thanks for your response. I enjoyed reading a little more about your experiences. It's certainly interesting to see how others have fared over many years.
Regarding work, mainly I worked for a Welfare Rights Organisation. I did a mixture of office work and visiting elderly clients to help them with any appropriate benefit claims. I enjoyed it very much and liked the idea that I might actually be doing something useful for someone. Unfortunately, my last boss wasn't particularly understanding and got fed up with my time off for operations and appointments. She felt I was an 'emotional and financial drain on the Organisation and my colleagues.' I can't deny that hurt. Cutting a long boring story short, that's when I decided on ill-health retirement. I knew it would happen at some point, it was just a bit sooner than I'd have liked.
I'm glad your employer was so understanding. That is invaluable. Your job sounded interesting too. What business did you set up?
I'm really pleased your husband is so supportive. It must be so hard on partner's when someone is diagnosed. Apart from having to watch their loved one in pain, their whole lives have to change. I've been married 20 years and my hubby is great. He has health issues too, so we sort of understand each other. I wasn't sure I would ever get married though. I left home at 23 and rented a house with a close friend for a year (great time). Then, mid 90's, prices had dropped drastically so I bought my own little house and lived alone for nearly 4 years until I met hubby at University. So glad I did that by myself.
Sounds like your children have grown up well. I think it would definitely have stood them in good stead to have helped out when younger - for lots of reasons.
Isn't it funny you'd forgotten those drugs from way back when! Penicillamine will be forever etched on me as it used to make me so nauseous every morning!
I'm sorry you've developed heart and lung problems. I'm assuming they are RA related? Hope they are being managed and are under control. As you say, one more thing to deal with.
Anyway, hope I haven't gone on too much again! I seem to find it very difficult to do a short, neat summary. I blame all those long English essays!😉😄
I have been on benepali for 2 years and 6 months..... it has turned my life around I can honestly say. I am now working and feel almost normal... I still have to pace myself and remind myself I still have RA, because otherwise I push too much and then flare.. so just need to be mindful. I think the biggest thing I really appreciate is the reduced fatigue..... now when I rest to pace myself I actually feel re-energised, for such a long time it was a struggle that never eased off which was draining... I just hope it stays good for me a while yet as it would be hard to go back to that fatigue and pain all the time. I noticed benefits almost immediately too, it was like I had been swooped over in the night 😊😂 I was on MTX and sulfasalazine and now just 10mg MTX and benepali and no pain killers. Side effects mainly sinus issues but well worth it for the gains.... I also opted for syringes, much easier to use.
Hope it works for you
That's encouraging to hear, I am still waiting for it to take effect.
I'm the same, always try to do too much, would have thought I would have learned after so many years, but now my age dictates when to slow down.
Good Morning, myranicholls,
I am interested that you have had RA for 46 years; you started it at a very young age which must have been devastating.
I was 32 in 1967 when I was diagnosed, and the damage done before the advent of DMARDs can't be undone but I think I've been quite lucky. Currently I'm taking methotrexate in combination with a biologic, Remsima, and going through the initial stages of the biologic. Methotrexate has been good for me for 22 years, but after a recent aggressive flare the biologic was prescribed. It is being administered by infusion at the moment but I'm in the throes of changing to injections (they are "on order").
I take the methotrexate by "pen" which I find simple and painless, but it's interesting that you find the syringe better. I don't know what method I will use for the Remsima. Nobody has mentioned whether it will be pen or syringe. The Remsima was started in March this year; it hasn't had much effect as yet - apart from causing a nasty outbreak of eczema - but I've been told that because I've had the disease for 53 years I can't expect much improvement in such a short time.
Well, I hope your biologic is quicker acting! Good Luck.
bienassis
Interesting that you had a bad eczema flare up after starting biologic. I had similar, itching all over, but my rheumatologist said it wasn't a side effect. I'm still waiting for it to take effect after 4 weeks. I hope I don't have to wait as long as you. I'm not taking any other drugs with it.
Hope you get some improvements soon
I am on my 5th treatment this year so far. Every one of them makes my skin break out. My rheummy spoke to pharmacy, they think I am allergic to the hydrochloric acid which is in a lot of our drugs. Some of them make me look like a 57 year old with bad acne,not a good look and stresses me out more. Even this one I’m on is giving me spots
What do you use medication for your skin outbreaks?
I haven't found any that help, I didn't realise hydrochloric acid was in drugs, that may be reason, my skin is so thin and sensitive being on long term steroids
I haven’t found anything that works. Like you I have had RA for over 20 years. Last 2 years has been the worst, my skin is terrible, and for someone who barely had a spot growing up. I can no longer stand to be in the sun as the biologics put paid to that as I became sun sensitive. I really hate this disease. The steroids don’t help our skin either x
I got incredibly bad skin from a combo of the steroids/MTX. I use to suffer from it when I was young and cut out dairy products which helped so did that again and it’s definitely improved. It’s a side effect that isn’t taken as seriously as the others but still has a pretty bad effect on you emotionally.
Hi. Like you I have suffered with RA for a long time, 37 years. I have been through every drug out there for the disease with varying success. But not until 13 years ago, after failing on Methotrexate, was I offered Enbrel.
For me this has been the wonder drug. It started to work within two weeks of injecting and made me feel alive again and enabled me to go to Mexico for my 50th Birthday and do things I didn’t think possible before having this drug.
I’m not saying I haven’t had some ups and downs and some joint replacements, but I have not had the massive flare ups I had prior to Enbrel.
Hoping this will work for you.
Best of luck fellow warrior. X
I will keep Enbrel in mind as still waiting for Benepali to work.
Good that you went to Mexico for your 50th. Just been watching Sue Perkins programme, looks amazing .
We had to postpone our plans for retirement trip, but made it 5 years ago, just, was in hospital for 3 weeks prior with gout in my knee, only got all clear 3 days before flying to Shanghai (13 hours) cruise around Japan, onto Canada then Rocky Mountaineer. 35 days in all, a holiday of a lifetime, not done much since, so pleased we made it as it's been all downhill since
There is a professional golfer - Phil Mickelson who was diagnosed with PSA and had to stop playing. He was given Enbrel and is now competing at the highest level again. Despite what some people think it is a physically demanding sport so it’s nice to see it worked so well for him too.
I was on it for 10 weeks it did nothing. Now on Tocilizumab. Hope it works for you x
Helpful to know, I will wait a bit longer then as I've only been on it 4 weeks, I'm so impatient, need to get on with life
I was diagnosed in 2001 at the age of 38 - after a miserable year trying other drugs I was prescribed Etanercept (Enbrel). For me it was a miracle that lasted for 14 years. Within 48 hours I felt so much better
I then had some side effects to my kidneys and had to stop taking it and Cyclosporin.
That was terrible and I then had a rollercoaster 3 years with various drugs not controlling the RA.
I've been back on an Anti TNF (Humira) for about 2 years after pushing hard for it - and I feel great again.
As we always say on here - everyone is different and needs an individual care plan. One size will never fit all.
I really hope that Benepalli is a miracle for you
Michele x
Fingers crossed
It's good to hear you are feeling great again, that what I'm looking forward to. 14 years is a good stretch on Etanercept, you have to believe it will work, it seems all the drugs I have had over the years work for a time, then cause problems in one way or another.
x
I take methotrexate 25mgs by injection once a week and Benepali by pen once a week.
I found that using the pen on my thigh was extremely painful but into my “flabby’ belly no problem at all! But the pen does take extra strength if you are having problems with your hands. The biggest problem I found with Benepali was opening the strong cardboard packaging.
My RA now appears very well controlled on both medications,no side effects, only thing I can complain of is very stiff ankles when I come down the stairs first thing in the morning.
I do hope you benefit as much as I have with the Benepali.
NRAS were looking into the packaging and problems opening it but I don’t know what came of it. I brought this up a while ago on here as it’s infuriating that they make it so difficult to undo. It’s not just difficult, I can’t undo it I have to get someone else to. I tried contacting the manufacturer but got no where with that either. Maybe someone from NRAS could update us.
I agree re packaging, I can't open mine either, I will contact NRAS , perhaps if enough of us do, they MAY do something.
My best tool for most things are small spring loaded pliers, I have them everywhere
They did ask us about this a while ago. I’ll see if I can find it and message the poster for an update 😊
Hi,
I was on benepalli for a few months but had to come off it due to 3 UTI a ( but I'm very susceptable to UTI s) but I did experience chronic stomach pain and back pain. Changed to Humiri which was fab few side effects but u fortunately it stopped working. But as I'm always being told we all unique and the same drugs do not benefit everyone. Good luck.
Hi: I am now 76 and had symptoms of swollen fingers when I was 21. I was started on the meds all were put on including methotrexate. I was on methotrexate until this year when I was diagnosed with Pulmonary Fibrosis secondary to the RA. I am on 30 mg Prednisone now as I have inflamed lungs. my Pulmonologist will taper me off the Prednisone and will start Me on another med which she hasn’t made me aware of yet. I see her on the 16 th so I hope to know more. Has anyone else had lung conditions from RA? Personally I wonder about the methotrexate side effects but told it was the RA causing the PF.
It might be better to start a new post asking this question as you will get more replies 😊
To biological or not to biologic
Biologics
Biologics?
Biologics
