Benepali is not my pali

[Amylau]

Hi everyone! I havent posted here before but feel its time as im just getting so frustrated! So im sorry for the rant but here goes-

I’ve had RA for 7 years, im now 23. I was on humira until about a year ago when it stopped working. It seems after that, my nhs experience has just been bad ontop of bad.

I was on the waiting list for 6 months, without any medication, before i got to see a consultant. I finally got to see him and was prescribed benepali! It then took 3 months to get my prescription through to healthcare at home!

I finaly got my injections delivered, but had to wait two weeks for an appointment with a nurse to supervise me take them. She then cancelled on me, twice. So i took it myself.

I find the benepali injections excruciating compared to the humira ones! Every week gets worse and worse.

Ive tried to call my rheumatology hotline but its always just an answer machine and noone ever gets back to me (Its been the same since i was diagnosed). Ive found it really hard to get support off anyone since these new injections.

So now im here. Two months into benepali, with a stinking cold thats had me in bed for a week, a fluid filled knee and an unhappy brain.

If anyone has any positive benepali stories id love to hear them! So i can imagine some light at the end of this sewage filled tunnel.

[Barrister]

I understand your gripe completely. There seems to be no sense of speed within the NHS. I’ve been using Benepali now for 8 months. On its own, I had no relief at all. They added in 10 mg Metoject about 6 months ago and finally, within the last month, there seems to be less pain sometimes. I’m still taking a good hour to get moving in the morning and still don’t feel that I’m as good as I was on Enbrel ( I was also on Humira until it stopped working after 14 months). I feel quite let down because it seems that the doctors are happy with “less pain” whereas I would be ecstatic with “no pain” but no one bothers to take my opinion into consideration. The fact that my hands and feet are a lot better but my hips, shoulders, back and neck are agony, doesn’t seem to matter.

Anyway, I’m getting away from your problem - so Benepali, along with MTX is helping, although not as well as I had hoped. Maybe, you just need to give it more time, not what you want to hear, I’m sure. I hope that you feel better soon.

Clemmie

[Amylau in reply to Barrister]

Yes ive heared it can take a while to see any results, but 8 months seems ages to still be in pain! I know its a case of trial and error and waiting to see what works, but it all just seems way too long! Hopefully something really starts to work for you soon!

[Stormpetrel]

Hi Amylau

Sounds absolutely disgusting your waiting period. So very very poor.

Yes yes yes I absolutely agree the Benepali injections were an excruciating sting for me too, worse than a big bee sting. Try putting an ice cube on the area to numb it before and put the ice cube straight back on afterwards. Absolutely Benepali works for many people. It didn’t work for me but don’t give up yet. However don’t be backwards in coming forwards in telling your Rheumatologist/nurses. If you can afford it, it might be worth getting a private appointment to discuss ideally what might be the next best treatment for you to try. You could also badger your GP to try and push for help. Hang on in there

[Amylau in reply to Stormpetrel]

Thankyou! An ice cube is a good idea! Ive heared in the stomach hurts less too? If you’ve tried? Also, im a student and have zero money aha! So am just plodding along with the nhs!

[lucymead in reply to Amylau]

I had the stinging problem too. try leaving pen out of fridge for longer I leave mine out for 2 hours under a cloth so no light is on it. I also do mine on a fatty part of my thigh. My nurse showed me where is best. hope it helps.

[jane1964]

Hello have you thought of contacting pals at the hospital I think if might be worth at least talking to them and seeing what they think.I hope things improve soon.Jane

[Amylau in reply to jane1964]

Yes jane, im always trying to contact them but the rheumatology hotline never gets back to me! Its just a waiting game till my next appointment!

[jane1964 in reply to Amylau]

Hi I'm sorry they don't reply at the helpline I was thinking of the patient advisory liason service, known as PALs there's one in each hospital I think try the main hospital telephone number and ask for a them.They may be able to help I hope they can Jane.

[Amylau in reply to jane1964]

Ah thats a good idea! Thankyou yes they might have someone i can get through to! Thankyou

[Hidden]

Hi Amy sorry to hear all your problems, hope it improves soon. I found benepali bit more stingy than MTX (which I never felt at all) but found by fluke if skin taut and I push pen hard into leg, it starts injecting before I had chance to push on end; hurts a lot less like this, still do 15 sec count etc but worth a try? X

[Amylau in reply to Hidden]

I have the automatic pens that i just push in and it starts injecting automatically? Ive heared it hurts less into the stomach so might try that with my next one!

[Hidden in reply to Amylau]

Yes so do I Amy, clearly got thighs of steel 😄, hope stomach works better for you x

[Hidden]

Awful time you've had. So sorry.

With regard to benepali. Much less painful if injected into stomach I find. Also leave mine out of fridge for good few hours. You could opt for normal injections if you really hate it.

I've been on it about 11 weeks. There is definitely some improvement. I'd like a bit more though.

Good luck.

[Amylau in reply to Hidden]

Thankyou! I think i’ll try my stomach next time! I always injected humira into my stomach and found it fine! And yes i always take it out about an hour before so its not cold! With humira i just injected straight from the fridge with no problems. Its hard not to compare them and i dont undestand how they feel so different when injecting!

[vonniesims]

Definitely less painful if you bring it to room temperature first.

[Amylau in reply to vonniesims]

Hi! Yes i always do that but still find it terrible!

[vonniesims]

ok I'll come clean ! I get up I'm my pyjamas and tuck the pen under my arm whilst I have my coffee etc. Warms it up beautifully probably to body temp rather than room temp! 😀

[helenlw7]

I’m sorry I don’t have a positive Benepali for you so please feel free to skip over my post.

Enbrel has worked very well for me since 2006 but I was changed to Benepali in March this year. I saw a rapid deterioration within three weeks or so. Fortunately my gp saw the state I was in when I went to see him on an unrelated matter and spoke to my rheumatologist that day. Within a week my prescription was changed back to Enbrel but it took me about a month to sort of return to my old self although I haven’t managed to get my daily steps back up, even after five months.

My experience of the NHS is totally different to yours. I’ve seen the same rheumatologist since I was diagnosed apart from on two occasions when he was on holiday. I have had cancelled appointments but they have been re made for the next week. I have had the same sort of experience with the lung consultants I see.

If I want to see my named gp it does take a bit of advanced planning but you can usually see any gp on the same or next day.

[Beelady]

The nurse told me to take it out of fridge in morning for evening. If i forget i just put it under my jumper for couple of hours. They can last out of frdge for 4 weeks i think you just cant put them back in once out. Ive not had any discomfort from injecting. Good luck.

[PINKY246]

I have no comments for you but I think there are a lot of heartless people out there (which are the specialist ) rude and like I said heartless. I really hope that you find the right meds that will help with the pain and I wish you all the best.

I have one awesome doctor who cares about people and she told me that she loves her job and I think the world of her. She has been so helpful and racked her brain until she thought that was the right way for me to go. But the specialist I'm seeing has no heart and racked me over the coals when I added two more complaints which I thought were related to my knee problems. More or less what he said was what are you doing here,

you should be seeing someone else. My knee was #1 complaint, #2 was pain behind my knee #3 was pain in my lower butt.

He said he was going to call my doctor, and I'm wondering if he did but I feel he didn't . If he did I bet he chewed her out also. He said he wanted me to have an x-ray to see what's going on with back of knee and my butt. That was almost two weeks ago and still no x-ray.

I believe my doctor is away on a conference for this week but by the end of next week I'll contact her and if I don't her from one of them. Take one day at a time and try to be strong.