I had to stop my biologics for a planned surgical procedure and am now having a terrible flare. I have been given a 4 week tapering course of steroids but the surgeon has now cancelled the operation until I have been off them for at least a week. The pain and joint swelling is getting worse each day and I can't even dress myself today.
Has anyone had this happen to them and does anyone have any advice on how to cope with it. My operation will not go ahead until at least the beginning of June.
Thank you very much.
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Vandf
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Only one week? I was told to be off my Humira for 6 weeks before and after surgery!. I took this seriously following my emergency operation back in 2012 that became infected so suffered a repeat of my skull-surgery which was no fun! Being an emergency I had no option but to have the initial surgery under the effects of Humira! Subsequent procedures have been planned in advance !
Thank you for your message. I hope you are keeping well. My operation is only a minor procedure and I am just concerned at how bad this flare is and wondered if there was anything I could do until I can start taking biologics again because that won't be until 4 weeks after the operation. I have been off Benepali for 4 weeks in preparation but was given steroids because of the flare, (probably caused by stopping the Benepali.) Best wishes.
Speak to your rheumy nurse she will know what pain relief you can take.
I really feel for you...I do hope she can help ....there must be,some sort of on steroidal analgesic you could take.
I'm on Biologics & am grateful every single day ...but I have Infusions every 6/9 months......wonder what would happen if I ever needed surgery....sure hope I wouldn't have to wait six months!
Thank you. I will give them a call. It's very distressing, as I have been so well since starting on biologics and was shocked at how quickly the flare started. I wonder if a steroid injection (not joint specific) would help? And, yes, I was grateful every single day on biologics. Best wishes.
I don't like it either, but down to 5mg a day of Prednisolone tomorrow for 7 days then stop them next Thursday and wait for an operation date. I think I will call the Rheumatology Help Line tomorrow. Take care, and thanks for the reply.
Thats really odd as I was advised to keep on taking the LEF (not Bio) as the risk of swelling is far greater than the risk of taking it with the operation going ahead and stitches bursting down to swelling. Thats SE and I really think you should ask why being stopped ? What does your rhumie say?
My rheumatologist said to stop Benepali (biologics) for 4 weeks prior and start again 4 weeks after the operation. Also no need to stop Methotrexate. She gave me the 4 week tapering course of steroids because I started to flare but the surgeon says no operation until 10 days after the last steroid tablet. Meanwhile, I have a lot of pain, swelling of joints and stiffness, despite not having finished the course of steroids. Thank you for your reply. Best wishes.
When I had my elbow replacementsI had to stop my Benepali/Enbrel two weeks prior to surgery. I was told I could start again once the wound had healed. I was also given the option of having a steroid injection if required, as it turned out I didn’t need it.
Thank you so much for your reply. I will contact the Rheumatology Team tomorrow. I would hope that they would be best placed to help me with this flare and maybe speak to the surgical department. It sounds like there are more options around so I don't feel quite so worried now. Best wishes.
When I went in for hip surgery a couple of years ago I asked the orthopaedic consultant what the reason was for having to stop enbrel two weeks prior to surgery, his reply was because it slowed the healing process.
I was admitted for urgent surgery and seemed to heal ok even though I'd injected enbrel about a week before. I never went back on enbrel after the op.
Thank you for your reply. It does make sense to give yourself the best chance to heal after an operation but I am shocked at how quickly this flare started once I had stopped the Benepali. Also, giving me a course of steroids to help with the flare has now delayed the operation because the surgeon won't do it until I have been off the steroids for 10 days! I hope you are keeping well.
I stopped all meds for a couple of months following surgery and did not start to flare for around 5 or 6 weeks. There could be a couple of reasons why it took so long.....along with enbrel I was also taking methotrexate, which I believe can take some time to leave the body. When I spoke to my rheumy about it, she said it could also be because I was taking a post op course of strong antibiotics, which can have a positive effect on some peoples RA.
edit...I'm pretty sure my rheumy also said that enbrel leaves the body pretty quick.
That's interesting and good that you didn't flare straight away. I'm just concerned that once they see me hobbling in with so much pain and swelling that they will say they don't want to do the operation. . .
I take Benapali weekly and in January had a TKR and stopped taking it 2 weeks before procedure and restarted 2 weeks after, everything was fine. Having my second TKR on June 4th so have to stop again this weekend....Wish me luck .
I've been off mine since Jan, I was told between 5-10 weeks off my abatacept and I was surposed be having knee replaced in march... I now have a date for 30th may. Its so hard as like you everything flares and I was also given steroids but they have to clear your system before op. I feel your pain.
Oh dear! That's a long time to wait, especially if you are flaring. Let's hope your date doesn't get changed. My operation is a small diagnostic procedure so it seems such a lot to go through for that. Fingers crossed they don't find anything that needs another operation. I wouldn't like to go through this again. I really hope that you recover quickly, so look after yourself and look forward to your brand new knee! Best wishes.
I was told I didn’t have to go off my meds at all, just the day of the surgery ....I’m really sorry this is happening to you. Also, how long were you on the meds? It seems really strange that you would experience this big of a flare after just one week of not taking ur meds. Last time I tapered down I was ok for a bout 3 months because the meds were still in my system... try some natural holistic methods to bring the inflammation down.... turmeric, ginger, lots of rest .... 😘😘😘😘
I had to stop Benepali and Methotrexate a few weeks ago because of suspected septic arthritis that turned out to be a viral infection, and it took 2 more weeks to get to see the rheumatologist, so because by then it was 5 weeks before the planned operation the rheumatologist said it wasn't worth just taking it for 1 week but said I could start back on the Methotrexate. Then I started to flare, so I was given steroids and the surgeon cancelled the operation until I have been off steroids for 7 days. I have been on Methotrexate for several years and Enbrel/Benepali for about 4 years.
Thank you for your reply. I wonder why there is such a difference in the amount of time you need to stop Biologics? It seems to range from not at all to 4 weeks before surgery till 4 weeks after! Thank you for your advice. I will try ginger and rest. I already use turmeric in soups. Best wishes.
I hope you feel better soon and it’s all sorted out. I do agree with some of the comments here saying as how biologics slow down healing time and the steroids and all these drugs we are taking are immuno surpresants,so you could actually be at more risk for nasty infections and your body won’t be able to cope and fight them...
I put turmeric in soups and every single thing I cook actually. Ginger you could put in your teas or just on some hot water with lemon.... or sneak it into your juices.
Going for hip replacement op in just under 3 weeks and now take sulfasalazine only as had to come off Leflunomide as fatigue and night sweats were terrible. Still feel awful first thing in the morning although improve throughout the day. Hemoglobin was low after last bloods and worried in case operation gets cancelled after full blood count gets done next week.
Best wishes for the hip replacement. I think that mornings are always worse. Let's hope that your bloods are fine and it goes ahead as planned. Stay as well as you can and keep looking forward to the improvement after it's over with. Take care.
Like you I was having surgery in March and had to come off Benepali for3 weeks prior
to surgery. It all went as planned, but 2 weeks after op I also had a flare. I just sat and nursed my pain with pills and hot water bottles and wished I was dead....honest it was
so bad. It did subside eventually. Now, I thought before all of thi,
I am talking to Reheumy nurse toorrow and see Benepali was not
working for me, and been back on it for 5 weeks and no reduction in pain so think I
maybe told to come off it. I think the flare was possibly coming off it, but is that all
it is going to do, stopping me having flares.....I want pain relief............I am talking to rheumy
Best wishes and let's hope that your appointment Wednesday week will help. There are other biologics to try and I really hope you can get some relief. I am so shocked at how severe the pain of a flare can be. I'm still struggling but there doesn't seem to be an answer other than trying different painkillers. Take care.
I’m going for pre op assessment next week so I’m guessing I’m going to have to come off Benepali for the op. I don’t think I have had more than 2 complete months on it since I started last sept. Am I reading this right that you have to be off steroids as well ?
The surgeon said that I have to be off steroids and the rheumatologist said I have to be off Benepali for 4 weeks prior and 4 weeks after surgery but to stay on Methotrexate. I hope all goes well and maybe ask about managing a flare just in case! Take care, and best wishes.
Thanks. I am hoping for an alternative, but you have to go away and try and not see rheumy for 3 months. It is a long time if things don't work I stayed on mtx and pred during op.
I need to improve my energy levels too as I sag after a small amount of work. It's all do a bit, rest a bit. For a previous active person and I mean active it is so frustrating. Not driving either as it was a replacement shoulder. Lost my independence!!!!
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