Hi! New to Forum long termer RA started Benepali

rosegoddess
rosegoddess Member Posts: 6
edited 19. Aug 2018, 10:08 in Living with Arthritis archive
Hi All!
I've been a member of numerous forums for years. I tend to use facebook groups quite a lot. However I am here now and looking for some advice about the side effects of Benepali.
So i am nearly 60, probably had RA since early childhood but not diagnosed until about 6 years ago. A relatively healthy lifestyle ( if you do not consider my dreadful cigarette habit ) Have been through all the meds and finally reached the point where I had to try something more active.
My long term meds have been all the multiples of dihydrocodeine and paracetamol for pain. i really do not do the others as they make me feel whacked out sick and woozy.
i take predisolone about 9mg and arent i lucky - i got double cataracts within 2 years - well that kind of shocked me - but got double surgery very quickly too - so problem solved.
i am on 20mg of leflunomide and seem to have tolerated that well for about a year but they have now added BENEPALI injections to the mix.
week 1 my bloods were almost instantly normal on the CRP and ESR which is nothing short of miracle, as they have been very elevated for years. My white blood cell count is exceptionally high but they put this down to the levels of inflamation in my body as opposed to any infection.
i felt great and a huge ruptured thickened tendon on my wrist started to vanish before my eyes

week 2 - still progress but i get infection and need to take 5 days antibiotics but all is well

week 3 - i thought i was starting to get rid of the permanent hangover which RA seems to give me. I go 2 days fine then 3 days sick dizzy woozy hungover head is pounding.

week 4 and im really not feeling good - my normal reprieve from the hangover feeling has not appeared. so what im now going to describe ive been told are just the side effects and my body getting used to the biologics - im told that they should not get worse and hopefully will be gone by the time i get to week 12 - omg i have 8 weeks more to feel this bad??

so here is what i would like to hear / know, from anyone else on this new miracle wonder drug - did you experience any of these side effects and did they go by week 12 and did they get worse as the weeks went by or did they mellow out? i know already that we are all different but i feel so awful i dont even know if i want to inject tomorrow which is week 5 - how can this be good if the quality of my life feels as it did before i got any treatment and i was seriously ill.

so i have developed pains on the soles of my feet - previously didnt have this - my ankles and a 2 year old broken ankle now aching - they had recently just improved with physio - knees feel weak and all leg muscles aching - didnt have that before and i never had sore hips in my life but now i feel like im a 100!
always had a lot of skull neck and shoulder pain - thats where im weakest - well my right shoulder which wasnt that bad is now throbbing as well as heightened pain in my badly damaged left.
my neck feels like its going to snap and all my arteries feel like they are being crushed - i had this before but its worse now

then my ribs - intercostal pain is more intense
stomach - well with all the pills it aches a bit normally but now it feels heavy full distended and all my intestines feel like they are taking a real hammering. - thats about it - oh my hands - well forget them - im still typing so im okay but my muscles are all really sore - like ive done a day of tennis.

am i being pathetic or will these side effects really get better???
thanks for any help

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hi rosegoddess
    Welcome to the forum it is great you have found us,sorry you are not so good at the present.You will find this forum full of understanding and emphatic people and will soon be chatting to others like yourself.
    All the best Christine
  • stickywicket
    stickywicket Member Posts: 27,102
    edited 30. Nov -1, 00:00
    Hello and welcome to the forum.

    Just in case you've not been told - benepoli is one of the new biosimilars. (Now that the patents for the original biological drugs are running out, cheaper versions of the same are able to be manufactured. This happens with all successful meds.) Benepoli is the biosimilar for enbrel. Quite a few people on here take, or have taken enbrel: obviously fewer take benepoli as it's not been around for as long. Here are some former threads on it, though. http://tinyurl.com/m9hgf79

    Given the relative newness of benepoli, I doubt many on the forum will be able to say whether or not they've had similar symptoms while on it. You certainly seem to be going through the mill right now but whether that is due to benepoli, RA or other stuff, who knows? New joint aches and pains never surprise me but the stomach and gut problems you describe, the feeling of crushed arteries and a neck about 'to snap' are not anything I can relate to in many years of RA. As for the rib pain – do you have costochondritis (which is fairly routine with RA)?

    You say you've been through 'all the meds' but only name a couple of painkillers, prednisolone and leflunomide. Painkillers don't even do what it says on the box – many of us on here call them paindullers – and long term use of prednisolone brings as many problems as it solves. Is leflunomide your only DMARD? Many of us find we have to take take two or three.

    It must be rather scary for you but I think you can only be guided by your rheumatology helpline people. They are the experts. One thing that might help is to stop smoking. All the evidence is that smoking makes RA worse and makes the meds less likely to work well.
    http://tinyurl.com/kj7ocmn

    http://tinyurl.com/k4auxs3

    Please let us know how you get on. I hope things improve for you but do take proper medical advice if they are getting worse since you last spoke to your helpline.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us.

    As I understand matters 'benepali' is the biosimilar name for Etanercept or Enbrel. I began Enbrel in 2007 but didn't stay on it for too long as it didn't suit (I have psoriatic arthritis, aka PsA). One step up from the DMARD meds are the anti TNFs / biologics and Enbrel fits that category; over my arthritic years I've tried three and currently take humira and injected methotrexate which is controlling my PsA.

    I am now 58 and began this bother when I was 37, in my day you had to fail on three DMARDs before one was granted access to the anti-TNFs and I duly did; I like doing things properly. :wink: I suspect I am lucky in that my local hospital is a teaching one so they have a duty to keep up-to-date with developments in thinking and treatments. The DMARDs I've tried are sulphasalazine, tablet meth, leflunomide and cyclosporine (either alone or in combination) and the anti TNFs are infliximab, Enbrel and humira. If I contract an infection then I know, thanks to the advice of my hospital, to stop the meds to help my recovery and to me that is common sense. I only found out that the Enbrel wasn't helping thanks to blood tests - I felt fine but had to believe the evidence. I do occasionally feel extra tired after my meds but realise I am very fortunate it's no more than that.

    I wish you well. DD
  • rosegoddess
    rosegoddess Member Posts: 6
    edited 30. Nov -1, 00:00
    thanks for replies - ive been thru the other dmards which have all made me "sick" - i can handle the pain to some extent but an increase of pain plus more feelings of nausea, are not a better quality of life.
    i was apprehensive of the biologics but persuaded that the disease was so severe, that i started the injections. the first impression was visible difference in my physical appearance. i also did not feel so sick as per my normal.
    its an overwhelming feeling of real depression now, that the side effects have been so bad - the blood results are wonderful and consultant and all doctors amazed.
    am the mininum weight for taking the drug at about 9 and half stones. this is a healthy weight for me. i got myself fit by going swimming and doing loads of physio - i thought this might be the "one"

    have always been a positive optimistic person in life but this setback has really taken my mental attitude by storm. i know when the immune system is suppressed - -that can lead to a depresssive attitude and feeling - the fatigue which was never that bad - if i just take things easy - has got much worse and im not long out of bed when it feels like its time for bed again.
    working from home has proved difficult as i need to keep focus - not much chance to reduce my workload but i can just take longer to produce the same.

    think i need a break from all meds and let my body restore itself - shame you cant just dump prednisolone lol
  • stickywicket
    stickywicket Member Posts: 27,102
    edited 30. Nov -1, 00:00
    Maybe, rather than taking fewer meds, you should take more ie one for depression. This nasty disease gets us all down at times and there's no shame in trying to redress the balance a little. Depression can cause fatigue every bit as much as arthritis.

    Working from home can be difficult. OK, no long commute but, on the other hand, your home is also your workplace and, no doubt, often reminding you of things to be done. There's no 'going home' away from it. Can you work definite hours in a definite room / place to try to mitigate against this?

    You say you are 'nearly 60'. Have you asked your GP to check some basic vitamin levels? A deficiency can cause tiredness though it's important not to take such things without checking first for interactions with prescription meds.
  • LauraJayne
    LauraJayne Member Posts: 3
    edited 30. Nov -1, 00:00
    I have injected Benepali for 4 weeks now and I still have not had a successful injection. I’ve been injecting into my legs but find it excruciating. Is this normal? I try to push down as hard as I can but I must resist a bit or jump due to the pain as each time there is some of the injection pooled on top of my leg. Feeling very frustrated! Can anybody help or relate to this???
  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hello LauraJayne
    Welcome to the forum. I am sure you will find that the members are very helpful and will be able to offer you advice on your problem.
    Chris
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I inject methotrexate and humira, the former into my thighs, the latter into my stomach (it's a bigger dose and there are fewer nerve endings in that area). Are you injecting standing up? If so then try the following: for the meth I sit on my bed, legs out in front of me and a pillow under my knees. This helps the thigh muscles to be relaxed and soft. It makes the pinching easier and I have no trouble with the injection. I used this method for both the syringe and pen forms and I hope this information helps. DD
  • LauraJayne
    LauraJayne Member Posts: 3
    edited 30. Nov -1, 00:00
    I have tried relaxing my thighs but I will try the pillow.
    I haven’t tried my stomach as it says not to pinch so worried it will hurt more as I don’t have much belly fat?
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    How new are you to self-injecting? I know that benepali is one of the new bio-similars and assume that it comes in pen form. There is no need to exert pressure, yes the business end of the pen needs to be pressed firmly to the skin but the injection itself is not an intra-muscular, just a sub-cutaneous (aka sub cut) and once the button is pressed the needle does the work.

    It is a psychological hurdle to overcome, for many people the thought of sticking a needle in themselves is far from pleasant. In the early days it is very easy to get all wound up which leads to extra tension and stress which in turn makes things much more uncomfortable. Hopefully as you get used to doing it things will improve - do you have someone who can sit with you while you do it? I used to inject at night so I could settle down to sleep. I use my tummy because I have the two meds to inject so keeping them to set sites is easy. Belly fat or lack of makes no difference to the procedure but never inject too close to the navel. DD
  • LauraJayne
    LauraJayne Member Posts: 3
    edited 8. Jul 2018, 05:23
    I use an epi pen style needle that has to be pushed down firmly. It does not have anything to push to engage. I worry it will hurt more when pushed into my stomach as I’ve been told to lie back and not pinch or stretch the skin?
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Yup, that's what I wrote :wink: When wanting to reply look under the end of the thread, to the left, where it says 'reply to topic' - click on that and a clean screen appears.
  • jadness
    jadness Member Posts: 1
    edited 30. Nov -1, 00:00
    Hello I am new to this forum and this is my story. I was finally diagnosed in September 2015 with Non Erosive Serum Negative RA but am sure I have had RA for years. I have lived with widespread pain for so long you would think a person would get used to it.
    I was told I had ME in 1987 and Fibromyalgia in 2006 I also have OA. I have done Mindfulness (very useful if you remember to do it). I have done two courses of Pain Management (very good it gives you a greater understanding of pain and how to deal with it) these were courses run by my local health authority. I recommend them if you are offered them.
    I have not got on with the drugs offered so far due to side effects Hydrochlor' MXT' with Folic Acid, Sulfasalazine, Leflunomide etc
    I find short courses of Steroids to be the only thing that gets the inflammation under control with Naproxen max dose and Paracetamol max dose they help me keep moving so I can make it through each day but life is not the same. I always have the sapping fatigue dragging me down and steroids have caused huge weight gain and now have pushed me into diabetes I have a very understanding and helpful Husband and a very good GP. I have just had my 7th Benepali injection today in my thighs I have too many stretch marks in my tummy. I find it does sting only momentarily as the pen is clicked down then again as it clicks for a second time I keep it as straight as possible and follow instructions to the letter counting up to 20 elephants before lifting the pen up and away. Only twice have I had a tiny spot of blood, sometimes there is a horrible bruise the following day. In my experience so far there is no irritation at the site if you cleanse with a swab to start and keep your hands off, do not touch it do not rub it and there will be no irritation. If there is a spot of blood just take the corner of a tissue and blot without rubbing. I have not seen any benefits yet and had to resort to another short course of Steroids. I am noticing a pattern the day of the injection I feel exhausted by 4 in the afternoon and need to sleep or at least take it easy. I can't say it has helped yet because of taking that recent course of steroids but a flare up came the second week so had no choice I am hoping with all my heart this drug works for me. I want my life back I want start getting out and about again.
    I hope I don't sound to miserable I try to be upbeat and still have a laugh but it's hard. I walk with the help of two sticks, I have leg lifter to help get my right leg into bed and a grab rail in the shower, I dream of being able to have a bath again. I have just had a half step fitted at my back door i am slow and unsteady on my feet. I feel old for my 63 years. If I could get a good night's sleep it might help. I hope my experience with the Benepali pen might help others new to using the pens :)
  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hi jadness
    and welcome to the community. It sound like you have had a rough time with your Non Erosive Serum Negative RA. I am sorry that it has taken so long for you to find a drug regime that suits you and I hope the Benepali starts working soon. I have been on Benepali for quite a while now and I do remember it took a while for me to see any results. If you are at all concerned it would be worth you phoning your rheumatology team and sharing your concerns.
    Being in a flare and feeling fatigued is exhausting and can feel endless but as you know things never stay. It is often hard to see light at the end of the tunnel, just trust that it is there as much as you can. You are not being miserable, you are having a rough time, we all understand here that there are good days and bad. We do have a free confidential helpline if you would like to talk things over the phone number is 0808 800 4050. I am sure our members here will share their experience with you and support you in this difficult time
    Best Wishes
    Sharon
  • stickywicket
    stickywicket Member Posts: 27,102
    edited 30. Nov -1, 00:00
    Hi jadness and welcome from me too.

    I do hope the benepali works for you. Steroids are no long term answer as I'm sure you know and NSAIDS just won't control the disease. I don't use pens as I get by on meth and hydroxy.

    Have you thought of getting a bath lift? I had a brilliant one until, recently, we had a walk-in shower installed as, even with the bath lift, I needed my husband to steady me getting in and out.

    Can you ask your GP for some stronger pain relief just for night time? I take a couple of co-codamol going to bed. Only the lowest strength but they do take my mind off the achey bits.
  • Elmbow
    Elmbow Member Posts: 80
    edited 30. Nov -1, 00:00
    LauraJayne - Are you still experiencing problems with the Benepali? I've been on it three weeks now. On my second injection I too noticed a bit of the medicine pooled at the injection site that hadn't been there on my first, supervised, injection. Healthcare at Home called me to check everything was going okay and I mentioned it. They said it is absolutely normal to have a drop of liquid at the site and it usually comes from the needle as it retracts. However, if it was a lot of liquid then obviously it's from not injecting properly.

    Yes, it hurts like hell. I think the third one was actually the worst because at this point I was steeling myself for the pain and the anticipation perhaps made it worse. I don't know what to say other than I sympathise. I have successfully used some visualisation techniques to help cope with pain the past so I might try that next time.
    Best of luck. x
    LauraJayne wrote:
    I have injected Benepali for 4 weeks now and I still have not had a successful injection. I’ve been injecting into my legs but find it excruciating. Is this normal? I try to push down as hard as I can but I must resist a bit or jump due to the pain as each time there is some of the injection pooled on top of my leg. Feeling very frustrated! Can anybody help or relate to this???

Who's Online

12
Anna
Anna
Burt50
Burt50
+10 Guests