Benepali

Posted , 13 users are following.

Hello Fellow sufferers...Ihope today is a 'Good' one for you !

I'm about to start on Benepali.... if anyone out there is already using this I'd be interested to hear of your experience of it. So far I've had poor outcomes with various DMARDS and this seems like the 'Last chance saloon' for me as far as stopping this awful diseases' progress..! Feeling quite anxious...wondering whether the 'side effects are worth the trouble...So if you've a tale to tell lease share.

Thankyou

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  • Posted

    Hi Catherine, I have been using Benepali for the last 6 months. After previously using other drugs such as Methotrexate, sulfazalazine and another drug with awful side effects and not much improvement I can say I have improved a lot since starting Benepali. The swelling and inflammation has been a lot better. Also the side effects not as bad, compared to Methotrexate which made me feel ill. I experienced a headache to begin with, but not now. Feel a bit tired the first day of injecting and can't think as clearly.

    I think everyone reacts differently to these drugs and I hope it helps. Nothing is perfect, but if it slows the progression of your illness, then it's worth it.

    Good luck, I hope it helps.

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  • Posted

    Hi Catherine, (and Linda),

    ?This disease is rubbish isn't it! The treatments seem just so hit and miss. It might work and if it does there's risk of significant side effects. Hobson's Choice springs to mind. Sorry about the rant.  I started Benepali November 2016 which I took with 15mgs Methotrexate. I had previously  used Humira which was brilliant initially. I felt normal again, but when it had to be stopped and restarted a few times it became less effective. I therefore started Benepali last November. I don't recall any problems to be honest. It didn't seem as brilliant as when I first started the Humira but hey, it was manageable and I could get on with my life. I've since had to stop both the Methotrexate and the Benepali due to Mx lung and and a chest infection I'm struggling to rid. Hopefully I'll restart the Benepali (as a monotherapy) soon when the docs are satisfied I'm infection free. Good luck, Catherine. Hope it works for you. I was OK with it. Carol x

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    • Posted

      Hi Carol, gosh you are having your ups and downs, I can't imagine taking Methotrexate and Benepali, must admit I haven't tried Humira. It seems to me that you take a medication and that gives you more problems. As you say Hobsons Choice. I really hope you can go back on your medication soon and your chest infection clears up. Benepali isn't perfect, but it certainly helps. Take care, Linda

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  • Posted

    Hi, I am about to start Benepali, it has been delivered, it is now in the fridge just waiting for a phone call from Rheumatology, then I have to call another number for a nurse to come out and show me how to carry out injections, I actually don't seem to be having much trouble with my RA, but blood tests keep showing raised CRP 24 and PV above normal, so I'll see what happens, hope you have good results.

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    • Posted

      Hi Martin, you've just reminded me that after I took delivery I was contacted by the company to start the injections but I missed the call. It took a lot of phone calls to get started over a fortnight later. A minor detail maybe but I was desperate to start it. Good luck. I hope it works for you. Carol.

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    • Posted

      Hi Carol, so I got a phone call from Rheumatology I'll be starting next few days on Benepali, I did try methotrexate a bit back one dose I ended up in A and E with terrible stomach problems etc, so hoping I don't get the same reactions from Benepali.

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    • Posted

      Excellent. I didn't have any problems with Benepali and started to feel the benefits after a few days.  I'm only off it now till the docs are satisfied I'm infection free. I've no intention of restarting the Methotrexate after what it did to my lungs. Got a repeat CT lung scan tomorrow which will hopefully have improved. Good luck. Let us know how you get on. It's good to get good news! Carol

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  • Posted

    Hi Catherine, I started Benepali 5 months ago after suffering from RA for over 10 years have tried all the usual medications which for me came with side effects including weight gain of over 2 stone and a severe tremor in both hands among other things, I was extremely disheartened to put it mildly and after being told I had to come off steroids because of concerns about my bones and was in constant severe pain taking so many painkillers I 'rattled'.

    I agreed to try Benepaline as a last resort and did not expect it to be any more effective than Cimzia or similar injections which were painful to administer and not much good but I am pleased to say that after the first couple of weeks I noticed a definite improvement and now am almost pain free except for an occasional flare up.

    ?I have reduced my pain relief to the odd paracetamol if I feel a flare up is coming on

    and have not taken any Tramadol or similar for weeks. I inject in my stomach on alternate sides each week and do not find it at all painful, on the injection day I have a quiet day and just rest but otherwise I can do so much more and even being able to do things like  brush my teeth, get dressed, shampoo and comb my hair and cut up my own food without asking for help is fantastic.

    ?I wish you all the best and hope you get good results too. Any questions don't hesitate to contact me we are all in the same boat! 

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    • Posted

      Hi Claire, I still have the tremor and have been having a lot of flare ups so feel a bit down. The most worrying thing at the moment is I have unexplained bruising each side of my stomach, each about the size of my hand and nowhere near the injection sites so I had a blood test this morning and an appt to see specialist next Thursday when I hope it turns out to be nothing but reading the Benepali leaflet it mentions possible blood disorders and the supplier told me to be sure to discuss it with the specialist.

      I am trying not to worry and have not mentioned it to my husband who would go into worry overdrive so am keeping my fingers crossed. Will let you know how I get on next week. Hope you husband is doing ok, we can only support each other dealing with this unpredictable condition.

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    • Posted

      Sorry to hear about your bruising - yes it could be a blood disorder but lets's hope it's not!  

      Were you on salazopyrine when the tremor developed? If yes, are you still on it now?

      i agree this is an awful condition but i try to be optimistic. Wish you a good result next week.

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    • Posted

      Hi Claire

      I had the results of my blood test and thankfully all is well, bruising seems to be just a side effect of the medication and told not to worry - what a relief! - The tremor came on when I was on Methotrexate and is still here but is not getting any worse so I just try to carry on as usual. Hope your husband is doing well.

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  • Posted

    Hi Catherine & fellow forum followers. I am fairly new to all of this. I was diagnosed with RA about a year ago.  Since then my knuckles & wrists have started to buckle. I’ve been tying to juggle full time work  & home life whilst taking 15mg methotrexate...I manage, just! 

    Originally I took 20mg methotrexate orally. I have always been a positive person but the effects knocked me literally to the ground. I didn’t want to see anyone, I didn’t want to talk to anyone & I had no choice but to take 2 weeks off work. I am 46 years old, I have faced challenges that we all do in life, I had never felt so alone & so ‘blue’. 

    I made the decision to stop immediately & my sadness lifted there after.  

    I tried alternative drugs to no affect,  Following a consultation with my specialist it was tentatively agreed that I would try methotrexate by injection starting with 10mg & increasing to 25mg. I am currently taking 15mg. 

    I saw my Consultant a couple of days ago. I informed her that other than feeling utterly exhausted every minute of the day, tired of coping with ongoing flare ups & acute pain, I feel nauseous particularly a couple of days post injection. I have lost weight, my appetite has decreased, I cannot drink alcohol- perhaps not a bad thing but socially I do miss the experience! 

    Anyway, I have had a call from ‘the care company’ that issue benepali.  I am hoping that I will in time & with the introduction of this new drug be in a position to decrease my current methotrexate intake. 

    I know your post was written 8 months ago but I am wondering how you are today & what has your benepali experience has been like? 

    Finally, I must say it has been a revelation to see such groups exist. I honestly don’t think anyone understands unless, like yourself are going through & living with this disease. 

    I wish you all well, any information would be gratefully received from anyone who may be reading this. 

    Cheers, Kirsti. 

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