Hi all, well I went onto humeria in September and it worked until end of December then it stopped and when I saw the Ra nurse I said don't think it's working anymore as I was in agony. She suggested going on bene something and the way she sold it was just finish the last of your injections and within 2 weeks you will be on your new drugs!!!
So I rang nurse up and said I am ready to start the new drug, she said ok I will get the ball rolling and you should get your new jabs shortly. I got them a month later but no nurse to show me how to inject. When I rang up a month ago she informed me instead of it being 2/3 weeks it's looking like 8/10 weeks before anyone can come to show me how to use the drug. In the mean time I have been gradually getting worse, the Ra nurse will not give me any steroids as she said they will interfere with new meds. Which I have not started. I have rang up science something to come and show me to inject but I may as well bang my head against a brick wall!!! So frustrating and so much pain and fatigue! My work is suffering as I am struggling to even hold any knives, I am a breakfast chef. I have a trigger finger and on the same hand my thumb is acting up at the base. It fe ls last every joint in my body is hurting and swelling and I still can't get any steroids injection. I have to say the Ra nurse has been trying to contact the nurse from science something to get me an appointment to no avail! I am ringing up the Ra nurse again tomorrow to ask for steroid shot and to see if I can just inject and she talk me through it bibhave watched the video on how to do it too. Thanks for listening, am just in so much pain. Take care.
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Carolsos
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Oh poor you. No it’s not difficult to do. You. could easily copy a from a video or be taught via Zoom. I’m so sorry you are between a rock and a hard place. My RA nurse showed me.
Humira original biologic back in 2013 did nothing for me for four months. Nothing at all. Do you mean Benepali as your new med? I took Humira to the hospital back then to be shown by my nurse. You have to stay half an hour with them after though to ensure no reaction, Hope you can ask your nurse if you can do the same. I think you might mean Sciensus? They are so far behind returning calls and 5 days behind with emails I was told as I had to make a complaint this week about a delivery. Good luck.
Unfortunately, if your meds are coming from Sciensus, then be warned that they’re currently not the best to deal with. There are whole threads here dedicated to people having issues with them. We’ve been using them for both myself (for Imraldi since September) and my daughter’s respiratory meds (for the last 3 years), and I’ve consistently been having horrendous problems with them for the last 11 months. I’m about to switch to etanercept, and was over the moon when I got a text msg yesterday from a completely different company to organise delivery. I actually cheered out loud.
I realise the above doesn’t help you right now, but what I would suggest is keeping a record of every phone call, chat, and email you have with Sciensus. Hopefully you won’t need to make a formal complaint, but at least you’ll have the information to hand if you do. I only started making proper notes in December, and I’m kicking myself now. In the meantime, I would be really pushing rheum for steroids - even just a 3 week taper would be better than nothing in the interim. I don’t know that Sciensus will/can forgo the training, as I was told when I asked to skip it that it’s partly the risk of anaphylaxis, but you could ask. The nurse that came out confirmed the anaphylaxis risk element, and had to stay in the house for 30 minutes after I’d injected as a result.
I agree totally about a log of all contact with Sciensus. I always write/type a file note for every medical conversation. I spoke twice to a member of their staff yesterday about an abusive delivery driver and the woman I spoke to would not put me though to a manager and said one would return my call. I phoned again today at 4pm and got a much more helpful person who did put me though to a manager, who was apologetic. It often takes such a long time and a lot of effort to get through. I once phoned them when they were HaH to arrange delivery to be told .. you are 47th in the queue. Of course I hung up.
Speaking to the pharmacists at the Brompton (my daughter’s respiratory centre), patient complaints to them about Sciensus are widespread and they’re submitting written complaints from their side with increasing frequency. Even as the people paying the bill (and a massive bill at that - my daughter’s meds alone easily run into 5 figures a month, and there are hundreds of patients like her costing around the same), they were telling me they don’t have a named account contact, they deal with whoever answers on the day, and responses are very mixed. I live in hope that they change provider once whatever contract they currently have expires, because it would genuinely be easier for me to drive an hour and a half each way into central London once a month than rely on Sciensus at this point.
I spoke to a woman last week after yet another bodge job who got quite shirty with me when I interrupted her telling me about how the problem is they’re working from home, and systems migration. She took umbrage with my choice of three words in particular. The first were ‘I don’t care’. Followed shortly after by ‘not my problem’. I was tempted to tack on the excuses were a ‘load of rubbish’ but thought better of it at the last moment. They haven’t followed through on a single statement or promise in 11 months. My daughter’s condition is genetic, she was diagnosed at 5 days old, and in the 14 years since, we’ve only ever run out of any medication for her twice. On both occasions, it was purely as a result of HAH/Sciensus ballsing it up. I’ve been promised 3 manager calls since Christmas and not had one. But I just don’t have the time, energy, or mental resources to put my complaint in writing at this point.
I did well then to get to speak to a manager today. As it was an abuse/ intimidation complaint from myself re the driver I think that’s why and he also told lies tho then that I would not come downstairs to identify myself. Crazy. I’d been sitting by the half glass inner door watching and waiting for three hours.) Also, the driver did not want to follow the delivery procedure in accordance with the website and also that he lied about me not being at the door. They may have changed their name to overcome the bad reputation but it sounds like they are already doing the same things again. As I said they were alright today but yesterday the first women was not too helpful after an initial apology.
You sound to have more than enough to contend with without Sciensus giving you more problems. I’ve been writing emailing and phoning most days during the past 2 & 1/2 years for many areas of rheumy, immunology, respiratory and it wears wears you down. You do spring back and continue the fight but at times as you say you don’t feel up to it. Don't let them get away with it. Pursue as soon as you feel up to it again. Best of luck for you and your daughter.
As others have said and as you probably experienced when you first started humira its the risk of anaphylaxis that they are worried about.
You must be so fed up, having to work in your condition sounds so hard. I would keep asking your rhematology department for some help, ridiculous having to wait that time for something that could he done in an hour.
I know its easier said than done, I had to wait 6 weeks for my first biologic injection. Its never soon enough when we are suffering, I would ask about steroids xx
I have come off humeria and waiting to go on benepali. I have the injections in my fridge and have done for over a month. It is getting very hard to go to work, even my feet have started hurting now and my toes. Thank you
Oh you've already got the injections ? I would ask if you can go into rheumatology and take one there, just so you can get help if allergic reaction etc. Worth an ask.
Yes Marion's idea about going to rheumatology to do your first injection is a good idea. I was thinking that perhaps you were not given that option but if you can that is better than following a nhs website link
That’s exactly what I did Marion when I got Humira delivered years ago. My nurse said bring it straight down and I’ll do it as soon as you arrive. Saved waiting two weeks. Please ask your nurse, as I said in my other reply, if you can do this too. It’s crazy when you’re feeling so awful and the med is there and you know how to do clickpens.
Yes it sciensus but it's only for the nurse to come out. I am getting my medication from the hospital. My Ra nurse has emailed them 4 times and when I rang up to ask about the nurse the girl said we can only email them and hope they get back, which they are not getting back to me. I am ringing my Ra nurse up tomorrow again. Thank you for your reply.
When I started on Benepali a couple of years ago the nurse from Sciensus came to my home to talk me through how and where to do the inject but didn’t actually physically do the injection.Left to my own devices the first injection as instructed I injected into the outer aspect of my thigh and it was really painful and I couldn’t imagine going through that pain every week. However the other site to inject is the abdomen and I found that way was absolutely painless 😊I think Marion’s idea of going to your rheumatology department is the best option . It really doesn’t make sense that your health has to suffer because Sciensus can’t provide a nurse for so many weeks
Is the injection different to the humira? When I changed we just did the new injections without waiting. I did the same with the mtx injections even though they were different and just followed the instructions in the leaflet. Could a nurse at your gp surgery show you? It’s always worth asking.
Sorry you’re suffering so much. When I started on Benepali it was April 2020 & we were in lockdown. The nurse from Sciensus (then called HAH) came to my home in full PPE to show me how to inject, however it was a dummy pen & I didn’t actually inject it. I assumed this was because I’d never injected meds before, was previously on oral methotrexate then sulfasalazine . Like the previous poster, I was left to my own devices so I made the decision to inject into my abdomen. I would have thought they could have done a virtual demonstration but if not I’d go to your rheumatology dept. Hopefully you start taking the Benepali soon and it helps you 🙏
I didn’t have to be shown again when I changed from etanercept to Humira, and when I was shown the first time, the nurse wasn’t there long enough time after injecting for an allergic reaction to happen. She couldn’t leave quickly enough for her next appointment!
I’m sorry your having to contend with this. I agree with others re going to the rheumatology nurse to do your first. As for steroids interacting with your benepali, that’s utter nonsense. I’ve been on Benepali for 5yr and have been on steroids throughout that time. There is absolutely no contraindications to using steroids with benepali. The benepali generally takes weeks to start working, so a steroid injection or a taper pack makes complete sense. The other blu reason I can see is due to the current covid, being on both biologic and steroids may increase your risk of contracting covid and being more poorly. I had my antibodies checked and dispite being on benepali, 25mg MTX and prednisolone I mounted a good response, so it’s not guaranteed you’ll get a poor result due to taking both biologics and steroids
When I started on Enbrel (same as Benepali) which was my first biologic I was just told to look at the leaflet, and have someone in the house with me in case of a reaction. Which is what I did. And I had no reaction apart from the pain going away 😀
But does your GP surgery have a nurse? Ask if you can take it there maybe if you are worried,
When I started on tocilizumab the rheumatology nurse said that she would do the first one in the hospital while I was waiting for the Lloyds pharmacy home care nurse to come out. It meant I could start them straight away. It’s always worth asking!
I'm now on my third biologic injection, I was only shown how to inject on the first one which was imraldi. Most injections are quite similar so I just followed the instructions on the leaflet. Hopefully you get sorted soon.
I agree about the steroids - I have been on Imraldi for about 6 years together with 5 mgs of Pred with no problems. However I have just startedto have problems with painful joints again after all this time on biologics. I wondered if they had stopped working but my inflammatory markers were normal so rheumatologist said there wasn't a problem!! So why the pain, wondered if I had Sjorgren's syndrome but again antibodies were satisfactory. I would definitely push for the steroids until you get your injections sorted.
Gosh what a joke, poor you. I actually learned by watching videos and when I got "taught" by a nurse she actually did it wrong, I had to teach her based on what I had learned. She was a little embarrassed by the whole thing.
I have a post somewhere on tips and administration, I'll try and find it and link under here.
Hi, I hope things improve soon for you. I have been self injecting now for several years using Health Care at home with absolutely no problems with the service.That was then. Since Sciensus took over I have had nothing but problems getting deliveries.
If it could possibly go wrong it did. Phoning them is such a trial, there goes hours of my life I will never get back.
Promises to phone me back and never did, texts saying they would send an email that never arrived. The usual text giving me a two hour delivery slot was not sent so I missed a delivery.
The above are just the highlights of my dealings with Sciensus.
Finally I contacted my Rheumatology nurse who told me not phone Sciensus with problems but to tell the Rheumatology nurse directly and they will sort it for me.
You could try that yourself. Welcome to the ever growing Sciensus frustration club.
Unfortunately the service you get for RA very much depends upon where you live. I count myself very lucky that where I live in NE Scotland I have an excellent RA Team despite having had 10 different meds in the last 2 years I have had excellent service from all the organisations involved. My RA nurse got me to come in when I had my first injection to use. Hope you get sorted out soon, that is a very long time to be left without meds
Very sorry to hear of your troubles, Carolsos. I was daunted when I had my first biologic last year in July and no one showed me either, but there were instructions which I followed. Hard to see a nurse here as live over an hour from there. Hope you can get some instructions, but really do think someone should be with you to do it correctly the first time. Terrible waiting and getting worse, especially with your job and everything.My only experience wish Sciencus was a good one first time round, but only had one delivery as then came off the biologic. Had 2 deliveries since with Jak-inhibitor drug from Alcura and first one was in good time, 2nd one only arrived on the day of my last pill, after asking and reminding, so bit stressful as didn't want to stop taking it.
Just forgot to say - as others have said - it's not just doing it yourself - it's someone being there in case of a reaction, so yes, someone should have been able to be with you for your first one....
GOOD LUCK - really hope you can get on the injections ASAP xxx
I have injected today at last, my Ra nurse rang me and I said I am desperate and in pain, just let me inject. It's not much different from the other one. I did struggle to press the release button and in the end I had to slam my hand on top of it. But it's done now and I will see how I get on.
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