Being put on Biologics

[EmmaDR]

Hey hope you are all well, I have a quick question is anyone on biologics? If so can you explain the process about the injections? plus do you feel better and is your RA still active or has it sorted it?

Em xx

[SoulmanPaul]

Hi Emma. Can only speak about Humira which I inject once a fortnight via a pre filled injection pen. Very easy and painless and Ive had no issues at all so far. The pens are delivered by a third party called healthcare at home. They deliver 8 weeks supply which is kept in the fridge. I only started in December and have had a break due to infection but I think its started to work as I feel my range of movement has increased slightly.

Any questions feel free to ask

Paul

[EmmaDR in reply to SoulmanPaul]

Paul,

Thank you for your reply, I am not sure which one I am going on yet. No drugs for me have worked so far so cross fingers these do. My RA is massively active and even steroids injection or oral isn’t working so this is my only option now. Thanks for the information, I don’t care about the thought of injections tbh plus I thought it was more then once a fortnight so that surprised me.

I am waiting for my next clinic appointment in two months waiting until then so my sulfasalazine is out of my system

Thanks again

Em

[norwegianjock in reply to EmmaDR]

Hi Em I'm on Benapali inject once a week been on a year now, for me its working great, though foez increase my sugar levels on my diabetes for 4 days then they come back down then for 3 days then same routine the next week so everyone is different, I tend to stretch skin and inject same time, its like a wee short lasting bee sting, other than that do not rub or pat it can cause bruising avoid fatty lumps I can't do in leg not brave enough I alternate from side to side on prescribed area safe to inject to your nurse will show you how to do it? Hope all goes well for whatever one you get put on j. X

[hawker955]

Hello Emma, it seems like nearly everyone is on a biologic. They are the gold-standard of treatment and for me, worked incredibly well. I've been on mine for nine years this year without any issues. I'd struggle without it. I don't know what you mean about the "process". I just get mine out of the fridge once a fortnight, inject myself, make notes on the calendar and that is it.

[Deniseelk]

Make sure your rheumatologist organises the necessary blood tests to check for any underlying infections as the Biologics suppress the immune system and put you at a higher risk of any turning active. Obviously I do not know exactly the procedure for where you live but they can advise you. Best of luck, be positive!

[EmmaDR in reply to Deniseelk]

Ok will do thank you I have heard about the worry of infection thanks for confirming the need of blood tests especially on biologics I have them for carbamazepine anyway x

[Matilda_1922]

Been on Benepali since November and Have not had any problems,

[EmmaDR in reply to Matilda_1922]

Fantastic brilliant news

[Neverending63]

I am in Benepali which is in a prefilled syringe delivered every 8 weeks by a company called healthcare at home. They contact you prior to arrange delivery. They will issue you with a box to put the used syringes in and will replace it when it is full. You will need blood test every two weeks for about a month then four weekly there after. With the DMARDS they either didn’t work or I was allergic to them so had no choice as my RD was becoming worse. Hope this helps

[EmmaDR in reply to Neverending63]

Fantastic thank you, I have blood tests every four weeks because of the medications I take because of the worry about damage to my liver so I am used to that so no issues there thankfully needles don’t bother me lol cx

[Bruno6]

I was on last to last year..etacept (biologics) .done wonder for me ....now I'm in a remission just taking Saaz for managing. I used to take injectable twice a week ...then once a week ...then once a month ...and then off it.but yes your rheumy would run some blood work. Cause biologics supresses ur immnology and increases chances to get infected easily. Good luck 🖒🖒

[EmmaDR in reply to Bruno6]

Fantastic news I am so pleased for you don’t you worry it will come back because you have been taken off of it?

[Bruno6 in reply to EmmaDR]

Yes I do feel worry ....specially now these days when I'm thinking to start family & will soon start taking shorts again ....i would not say that my pain is 100% cured ...obviously it's not possible eaither...some time I hv to take painkiller as well ...but still very positive . And yes your positive approach does matters alot in this disease.😊😊

[Bruno6 in reply to Bruno6]

And one more thing ...biologics are much more easy to handle than the MTX...i would never suggest anyone to take mtx .as they make me so unwell and nauseatic.

[phil_54]

Hi Emma, I started Benapali in December last year and to be honest i havent noticed any different side affects from this injection along with the usual from MTX which is just minor sickly feeling which tends to waer off after a day or so, the positive is the flare ups are becoming less frequent and i have more mobility these days, Dont get me wrong though i do feel very tired quite often and these days find it easier to sleep in the chair rather than bed,

the process is very much the same as injecting MTX i take it 1 per week and leave at least 3 days in between before the MTX injection but i would suggest taking it out of the fridge maybe a couple of hours before you take it as it can be quite painful otherwise, that is with Benapali am not sure if this would apply to other biologics but my personal opinion is it works really well for me and i would encourage anyone who is given the oppurtunity to at least try it you have nothing to loose it definatly has given me back some independance.

Hope it works out for you good luck

[EmmaDR in reply to phil_54]

Fantastic, thank you several people have suggested taking it out of the fridge. I love this site for this as it’s information from people who know and live with it , I really appreciate it thanks

[Artroc56]

You will get a training session on injecting. And biologicals made a huge difference to me - I am no longer on walking sticks thanks to them. Yes there is still some residual pain/discomfort from the joint damage already done but it has massively helped.

[EmmaDR in reply to Artroc56]

Excellent news I am looking forward to them now I hope it helps me like it has for yourself and a lot of people that have commented xx

[nomoreheels]

Hiya Em. You don't say which biologic but if this is your first treatment away from DMARDs it will be an anti-TNF you'll be starting I would think. This from NRAS is a comprehensive list of each, what the med is, how it's delivered & possible side effects, hope it's helpful nras.org.uk/anti-tnfa-treat...

[EmmaDR in reply to nomoreheels]

I think it’s etanercept but waiting for my next appointment to confirm they have me a leaflet so I am sure it’s that lol xx

[Matilda_1922 in reply to EmmaDR]

I was given the leaflet for etanercrpt (embrel) but put on Benepali Which is bio similar to embrel.

[SnooW in reply to Matilda_1922]

Me too - have done 4 injections now. I got excellent advice from a nurse for the first 2 injections, then on the third I had a phone call to make sure all went well. The box of injections was delivered on time too and they keep you informed all the way. No side effects except a red mark on my leg after the 4th injection and rheumy told me to take a Piriton before the injection next week to help prevent that. No great improvement yet but on the other hand, no nasty flares either!

[helenlw7]

I have been on etanercept for over ten years. A nurse came to support me when I did my first injection. It comes in a pre-filled injection which I do on the same day each week. I was advised to rotate the injection site each week between each thigh and each side of my stomach. I find using my thigh really painful so have only used my stomach for a long time. It was like a miracle drug for me - I don’t remember how long it took to work but don’t think it was very long. Good luck.

[EmmaDR in reply to helenlw7]

I think this is the one I am going on xx can I ask a question, what you do if you go on holiday abroad with an injection that’s needs to go in the fridge xx

[helenlw7 in reply to EmmaDR]

We only ever go on holiday by car since I’ve been on etanercept. I always carry an electric cool box. We go to France for three or four weeks to stay with my sister, and we stop a couple of nights on the way in hotels. I always make sure I book Roos with fridges. I have a letter given to me by my rheumatologist explaining about the needles incase I get stopped by Customs. I think I’ve read from people on another message board (Health Unlocked) who’ve taken their injections on planes.

[Kathies]

Hi Em, I have my first delivery next Tuesday and it has been six weeks since the consult said I need to go on them. I have found it difficult to understand the process despite making quite a few calls. I had to have a full blood count done, then I was sent for a chest Xray, then I had to wait for 'approval' for the finances. My GP didn't know I was being put on a biologic and they don't seem to be involved in the process. I had a letter sent to my old address from Healthcare at Home but that is sorted now. I also have a community nurse coming on Thursday to show me how the injection works. I'm still not sure about whether I have to have monthly blood tests with this as I did with MTX and Leflonomide, but I'll keep on asking the questions, patience is a virtue, and a way of life these days. I did phone up and ask if I had been lost in the system 2 weeks ago which did seem to provoke some action. Bizarrely since I have taken nothing but Hydroxy for the last 6 weeks I have not had a single flare up, it's been fab but I have a feeling I am standing on the edge of cliff all the time, just waiting.......

[EmmaDR in reply to Kathies]

I am going on it as I can’t take anything due to taking anti-convulsants - carbamazepine for epilepsy so cross fingers this will be what I need to sort me out xx weirdly even steroids don’t help me xx

[kikolee]

Good morning, haven't been on site for a while. Hope everyone is doing better.....I have had infusions (4) of Rituxin..it has worked great. No stiffness no pain for a year now..I take ariva and hydroxycloiquin also.I'm not one to suggest this but maybe. You could talk to your Dr.

It is expensive Medicare does take care of some and my supplement the rest. One infusion that takes about 4 hours for two weeks then 6 months

I could go on ..but everyone is different.

Hope your day is a good one

[EmmaDR in reply to kikolee]

Is this the one where you go to hospital for your medicine? Xx

[kikolee in reply to EmmaDR]

Yes at least that is where I have mine

[LadyL0u]

Hi,

I've been on Simponi for a few years now. I get it in pen form & inject once a month into my leg. It's kept in the fridge but I take it out at least half an hour before injecting it. It took a couple of months to have an affect when I first started taking it but it's stopped the disease progression so it has been well worth it. I still get really tired & have several aches n pains but I don't think I could function without it. The biggest drawback for me is that it's made my immune system defunct. So if I pick up a bug - head cold for example, it goes from sore head & cough to struggling for breath & A&E and bein put on a nebuliser within a few days! It happened again last week but am now on antibiotics & on the mend You have to be very careful and keep an eye on any potential bugs/germs kickin about as your body can't fight them off like it used to. But apart from that, if it halts the progression of your condition, like it did for me, it's completely worth it!

[EmmaDR in reply to LadyL0u]

Fantastic news I am so please for you, I have heard that immune system does work and that did concern me however I am glad you said Evelyn with that it’s so worth it xx

[LadyL0u in reply to EmmaDR]

Thanks I'm also on Sulphasalazine& hydroxychloroquine, but I was geting worse till I was put on Biologics along with them, so they've def helped me. I hope they work for you too. Like I said, it took quite a while before I noticed any improvement & it was gradual so don't panic if it doesn't work over-night. Fingers crossed it helps you, good luck x

[dbestdeb]

I’ve been on Enbrel since December. I’m in the US so the process is a bit different. I had to have a chest X-ray and several blood tests first to check for hepatitis and TB. Once cleared there, my dr prescribed the Enbrel, and the Enbrel company contacted my insurance company who turned it down. My doctor called the insurance company and explained why she prescribed it and they finally approved it. It is delivered to my house once a month in a box with 4 prefilled injection pens, which I put in the fridge right away. Once a week, I remove one and let it sit out for about an hour before I inject otherwise it hurts like crazy. I have also found that my upper thigh hurts less than the lower thigh. Seems the softer the skin, the less pain. Here I get bloodwork once every three months right before I see the doctor. She checks my joints and talks to me about any problems and side effects. I have to take the Enbrel with azathioprine or it doesn’t help enough. The two together make me feel better than I have since diagnosis. Best wishes to you on your new medication!

[EmmaDR in reply to dbestdeb]

Thank you very much that’s really helpful, I have just found a new Rheumatologist and she is lovely she has actually listened to me xx

[karenpenn]

Hi EmmaDR I am due to talk to my Rheumatologist in May about starting the injections as none of the DMARD's agreed with me. Let me know how you get on.

[EmmaDR in reply to karenpenn]

I will do xx

[Bluebells01]

Hi Emma, I’ve been on Humira now for 12 weeks - it’s taken a while to get results but I definitely feel better. Most noticeable is the constant tiredness and flu like feeling has gone and I now look like I haven’t just been dug up! Joint pain is still there but nowhere near as bad. I think it has made a 75% difference. I’m also on 400mg hydroxychloroquine daily and for me it has been a godsend. Good luck with whichever you choose and go for it if it’s offered x

[EmmaDR in reply to Bluebells01]

Thank you I think I am going on Etanercept I am not sure 🤔 but it’s a apparently a two times a week injection in a pre filled pen xxx

[Deniseelk in reply to Bluebells01]

Hi Bluebells, a question if you don’t mind. I’m also on Benepali ( pre-filled pens) and 400mg Hydroxychloroquine daily. I have not had any blood work since the initial screening for underlying infections ( unfortunately picked up latent TB)., I wonder if you have been told you need regular blood tests? I’m a little concerned if anything is going on and I won’t know about it. Everyone else I hear about is also typically on Methotrexate ( I had to stop it as I couldn’t tolerate the side effects) so they have regular bloods. Thanks. Denise.

[Bluebells01 in reply to Deniseelk]

Hi Denise. I have monthly blood tests - how long have you been on Benepali for? I would have thought that anyone being on biologics should have regular blood tests but maybe give your rheumy nurse a call just to check? I know what you mean about Methotrexate; I hated being on it and it just made me feel worse. Just an awful drug for me but I know it does help many people x

[Deniseelk in reply to Bluebells01]

I’ve been on Benepali since late October. I saw my Rheumatologist recently ( worsening issue with finger so had ultrasound and steroid shot) but at no point did he ask for bloods nor check when I last had them ( year ago)! Yes, I just couldn’t tolerate the Methotrexate side effect s and he felt it just wasn’t holding the RA anyway so moved to Benepali. No side effects on it. Denise.

[bee54]

Hi, I'm on Abatacept, once a week injection. And yes, it's a really good idea to take it out of the fridge and let it warm up before injecting.

There have been a couple of hiccups in the deliveries and I missed a couple of weeks and definitely noticed a difference in my joints.

However, I have to say that my immune system was pretty devastated by Humira, which is the one they put me on initially a few years ago. I was constantly picking things up and feeling really lousy. In the end I had to give up work altogether. It seems that Abatacept generally has fewer side effects while Humira can have bad side effects in about 30% of people who are put on it. When I asked my rheumatologist why then do they prescribe Humira first, he said it was because it has been around longer and so they know more about it ...

Even though I have been off Humira for ages now and on Abatacept, I still have episodes of extreme fatigue when I basically sleep for a day or sometimes longer. They sometimes happen after I've been in a busy or social environment when I guess I just pick stuff up. These episodes are awful and have left me unwilling/unable to plan things because I never know if I'll be able to do what's planned or have to cancel at the last minute. When I am having one I can't even sit up to watch TV; anything like reading is completely out of the question. I don't even listen to the radio. They are horrible. At least I know that they will pass but they're still ghastly.

I don't know if it helps but before I go anywhere I could be at risk I use something called First Defence, which is a nose spray and is supposed to stop you taking in germs etc through your nostrils - it's designed to stop you from picking up colds.

The huge plus side to being on biologics is that I am virtually pain free.

If I weren't on them, maybe I'd be able to feel "normal" and not at the whim of extreme epeisodes of fatigue, but I might be in too much pain to be able to do or enjoy doing whatever it was I wanted to do! A bit of a conundrum ...

Good luck Emma. I hope yours works brilliantly and you don't suffer any side effects.

[Totaleclipse25]

Hi Emma,

I have been on Benepali snice October 2017, it is working really well and no side effects. Good luck

[gym4life]

I have been on cimzia for over a year and it has worked for me. I have my blood work done every 3 months. I do not inject myself. I go to my Rheumatologist once a month for the injection. I have not been ill or have not had any infections. I don't eat processed foods, but mostly organic. I don't eat foods that cause inflammation. I use a lot of tumeric and ginger.

[Pamak]

I’m on Benapali(Entenarcept) and have been since November 2017. Unfortunately my RA is not controlled and I’m getting worse. See consultant on 15th May when biologic will be changed