Having a bit of a panic!

[Ewillow]

Morning all.

I've been on Benepali for about 4 and half months, best drug for me as noticed no pain within 2 weeks.

But recently I've had to come off it for 2 weeks as I've been super unwell and was told to as I needed to gather some kind of immune system to fight it but to also take some anti biotics.

I'm starting to feel pain again and honestly forgot how awful it is. I finish my anti biotics today and can start back on Benepali next week I'm just hoping it works quick again! Has anyone else been through this?

[Hidden]

Morning Ewillow, yes I too was off benepali for 3 weeks and back on it last weekend. I too was starting to flare and panic. There’s quite a few people on here that have been in the same situation as us this past few weeks. There’s a nasty bug going round at the moment. I’m hoping everything will settle back down soon. I’ve been on it 5 months now and it’s the first time I’ve been ill like that for many years. Fingers crossed it’s a one off. Hope you feel better soon x

[Ewillow in reply to Hidden]

Thanks for replying. Sorry to hear you have been unwell too! Have you gone back to feeling less pain since going back on it?

[Hidden in reply to Ewillow]

I only took it Sunday and haven’t noticed a difference yet. I’m hoping next week I will once I have a couple of doses in me. I’m not sure how quickly you should notice improvements after a short break.

[Ewillow]

Hope for you that you don't have any pain. It's the sudden realisation of how horrid this condition really is!

[nomoreheels]

Not Benepali but I understand how you feel. It's the realisation of how well you're actually doing on it the first time you need to halt your med to either fight an infection or for the course of an antibiotic it is a concern. But now you know you won't be as concerned again hopefully & once you restart it things will get back to normal. It's been a really bad one going around & can knock you back again so be sure you're ok once your course of antibiotics have finished, if not please go straight back to your GP.

[wishbone]

Following a period of a few months when I must have been very close to remission while taking enbrel, I decided to try abstaining from all immune suppressants because of recurring infections. Approx 6 or so weeks later I was on my way to a rheumy appointment sat in a hospital wheelchair as I was incapable of walking from the car park to outpatients. I could not believe how bad my RA had/has become!!

[rab1874]

That is a classic example wishbone off how effective our meds are, I find if I’ve been off my meds for certain amount off time due to infections etc my fingers and ties start locking then the pain comes xxx

[wishbone in reply to rab1874]

I was in a shocking state rab! That flare showed absolutely no mercy for about 6 weeks in total, and if that wasn't bad enough I went and got me some serious sciatica during the middle of it!! The only time I left the house during that little episode was for medical appointments and what an ordeal that was!

[TPaine]

Hi I had to leave off benepali and MTX for an infection for 2 weeks and started to feel a flare but it did settle quickly once back on meds, by 3 weeks back in felt good again.

[Bradclew]

Hi,I was in your position a few weeks ago I to am on Benepaly but I had a virus that turned to pneumonia and was told to stop the Benepaly and Leflunomide which I was taking as well.

I was on antibiotics for the pneumonia and was in hospital for 4 days

When I came home I rang my Rhuematoid nurse who contacted my consultant who said wait for 5 days after the antibiotics and then resume your injections.

I’ve had to stop The injections twice due to chest infections so Im behind with my treatment it’s a real nuisance I have yet to get the real feel on what Benepaly can do because of the gaps due to the infections,I get so down at times with it all,and because of the gaps in treatment I’ve started to get pain again when I thought I had mastered it

This Rhuematoid arthritis is a dreadful desease it’s taken my freedom from me I need physical support to go out after bring self realiant all my life,hope this helps xx

[Ewillow in reply to Bradclew]

I'm so sorry to hear this has been happening to you sounds just awful! I've woke up with yet another cold not sure how many I'm supposed to get in the space of 3 weeks ! This will be my 3rd week of not taking the injection and It a a real concern my wrist collapsed on me earlier dealing with my very young son. Not sure what's going to happen if my immune system doesn't kick in soon! Hope You feel better soon and get on with your treatment. X

[Ewillow]

Glad to hear you are feeling better ! Although a 4am wake up doesnt sound pleasant ! Well not great today actually, got stupid sinus infection yet again so more anti biotics and more time away from benepali and have been signed off from work again it feels impossible at the moment. My wrist is completely going again and can feel my knees starting to hurt again just don't want my ankle to do it either fingers crossed I can get through this quickly!