Monthly biologic infusions

Many of my friends and family know about my monthly drug infusions for treating my arthritis, but probably wonder what on earth that means! So I thought I would post about my experience with this so you can be enlightened!

The drug

The drug that I have infused each month is called Abatacept (‘Orencia’ is the brand name) This drug is in a class called ‘Biologics‘, which are medications (either approved or in development) that are produced by means of biological processes involving recombinant DNA technology. Biologics or bDMARDS (Biologic Disease Modifying Anti-Rheumatic Drugs) act by trying to target certain cells or selectively block cytokines found in excessive amounts. Most biologics are infused intravenously or injected subcutaneously as the drug is made of proteins and would be digested if swallowed. Biologics have been around for many years and are now becoming one of the most effective treatments for controlling inflammatory arthritis. All ‘biologics’ are prescribed by rheumatologists who evaluate each patient based on the severity of their disease, their infection risk and what other medications have been tried.

Abatacept is actually my second biologic. The first one I was on was called Actemra, which I had via a drug trial over 3 years. This was very effective in the first year or so but I ended up with a knee infection and was removed from the trial. After I was over the infection, I was put onto Abatacept in October 2009, which was not a trial, but on the government Pharmaceutical Benefits Scheme (PBS). This requires monitoring every 6 months with a blood test and an authority application form for continuing the drug which my rheumatologist has to send in to Medicare for approval.


The infusion

Unlike most other people on Orencia, I have to have my infusions performed in hospital, as I have a portacath, or ‘port’ for short (which cannot be accessed by the nurses on the Orencia homevisit scheme). So each month I go to the oncology day centre at Box Hill hospital to have my infusion. The nurses in oncology centres are extremely skilled in accessing ports and veins so i feel very confident having my treatment here. The reason I have a portacath is because my veins are extremely difficult to access, due to my Rheumatoid Arthritis. It’s a fabulous little thing and I could not have been on these biologics without it. Mine is in my chest, just above my right breast and sits under the skin, so no-one really knows you have it unless they touch that area!

To access a port means the nurse must use a sterile kit with gloves. The portacath can be a point for infection to enter, so care is taken to minimize this. After sterilizing the area, a special needle (or gripper) is used to pierce the skin through to the portacath sitting underneath. Once inserted it is secured down with some tape and the drug which is in an IV bag is attached via an IV line. 750mg of Abatacept is diluted into 130ml of saline and is infused over half an hour. A saline bag is also attached which helps provide fluid, but also helps with flushing the remaining skerriks of drug out of the line.



Whilst the drug is being infused I usually have a cuppa, watch tv and use my iPhone or iPad. Blood pressure and temperature are usually taken as well. After half an hour the infusion has finished and the line is flushed for 5 minutes. Before being ‘disconnected’, a heparin lock is made by injecting a small amount of heparinized saline (an anticoagulant) into the IV line. This prevents development of clots within the port or catheter. A little bandaid is applied and a new appointment is made for 4 weeks time and I’m on my way! I am usually at the hospital around 1 to 1 1/2 hours, which includes parking, waiting for the drug to be made up and the actual infusion. Not too long really.

Since starting on Abatacept last October, I have had very good results. After about 3 months, my fatigue levels dropped and my pain levels were reduced, particularly morning stiffness. Almost a year on, I am wondering if it is still having the same effect, so am monitoring things a little closer to see if I need to discuss other options with my specialist. What many rheumatoid arthritis patients discover is that over time, drugs stop working and the need to move onto something else is required. Good thing new drugs keep being developed so we have something new to move onto!

40 Responses to “Monthly biologic infusions”

  1. Really great, informative post Naomi :)

  2. Naomi Creek says:

    Wow, you read that quickly :) It’s only been online for 10 minutes! Glad you found it interesting :)

  3. It’s always amazing to see what others need to deal with from day to day to maintain their health. I dips-me-lid to you Naomi, a brave and amazing woman. Keep up the fantastic work.

  4. Naomi Creek says:

    Oh thank you Kay. That’s very sweet of you to say :) I like to think that by sharing my experiences it may help someone else who has to go through the same thing.

  5. Mum says:

    You are just the most amazing and wonderful daughter. Even though you have to continually face this and many other treatments, operations and difficulties, you are still smiling and an inspiration to everyone you meet. We love you so much.

  6. Naomi Creek says:

    Thanks mum. You are an amazing and wonderful mother, and that’s where I get my strength from. xx

  7. Catherine Thompson says:

    Naomi, thank you for your blog. I too have RA and Enbrel has failed to provide sustained relief. I am (not) so patiently waiting for my script to Actemra to arrive. And feel quite daunted by the infusion process as opposed to the subcut. injection I was performing myself. Did you have the Actemra at home or at an infusion centre?
    I hope the Orencia works well for you, keep blogging, I look forward to reading your journey!
    Catherine

  8. Naomi Creek says:

    Hi Catherine, sorry for the slow reply! I had my Actemra infusions at a hospital as it was still in trial phase then. I think they are still performed in hospital or at an “infusion centre/oncology centre”, depends where you are. The actual Actemra infusion goes for about an hour. If you have been giving yourself injections, then I’m sure you will become accustomed to the needles for your infusion very quickly. I really hope the drug works for you.

    Cheers
    Naomi :)

    • Catherine Thompson says:

      HI Naomi
      I’ve had my first infusion at a local hospital (210km round trip). They had a few problems finding a vein, but otherwise all went well. I feel I have reduced swelling in my ankles and a bit more energy. Roll on the next one
      Catherine

      • Naomi Creek says:

        Hi Catherine

        I’m really glad your first infusion went well (except for finding the vein bit). Wow, 210km return, that’s a long trip! Do you live in the country?

        Naomi :)

      • Janet Smith says:

        I have had trouble with them finding a vein also. I was told to drink plenty of water the day before and the day of your infusion. It seems hydration helps the expansion of the veins. It seems to have worked for me.. Give it a try…

  9. Sarah says:

    Hi Naomi

    I love how well you wrote this and how simple you make it all sound. I have now had 3 orencia infusions with each one being worse than the one before thanks to the disgraceful nursing where I go. My rheumy doesn’t want me to have them done at home because my veins are quite bad. I have an appointment with him this week and I am planning to tell him I refuse to go back to that hospital so I need to have them at hone or some other infusion centre. I will drive to the other side of town if I have to, those nurses are never touching me again! It sounds like you are happy with the place you get yours? Maybe I should come there… We could co-ordinate appointments and have a chat at the same time!

    Do you find you get headaches after your infusions? I have noticed the day after each infusion I gave a headache that grows through the day and by the next day it is a full on migraine.

    Enough rambling now…

  10. Naomi Creek says:

    Hi Sarah (this is the Sarah I know from YWASG isn’t it?).

    Sounds like you are struggling with what I had to go through when I started infusions – you poor thing :( Are you currently having the infusions in an oncology department of the hospital? My experience has been from going to many of them over the years that they are usually excellent at accessing veins.

    Has your rheumy suggested that you get a port-a-cath put in, like I did? When I went for my first infusion, which was actually a drug trial, it took 3 nurses, one doctor and one anesthetist to find a vein. They told me right there and then that if I wanted to continue with the drug that I could not go through this every month and within a week or so I had a port-a-cath. Because I was on a trial, I was lucky that the pharmaceutical company paid for the procedure. I would seriously discuss this with your rheumy. I simply could not be on biologics without it and each infusion now is a breeze, with virtually no pain.

    I go to Box Hill Hospital Oncology. I know that Monash Moorabbin are excellent too – I went there a few times too.

    Keep us informed and I hope you can find a solution soon.

    Naomi x

  11. Kathy Plaine says:

    I am going to be beginning Orencia soon. I was curious if they do a heprin lock for the injections. You article was very informative.
    Thanks

  12. Naomi Creek says:

    Hi Kathy

    They do a heparin lock (which I mentioned in the 2nd last paragraph) for me because I have the portacath. I don’t believe they would need to do one if they are just canulating an accessible vein or if you are starting on the new Orencia injectables which I have heard are coming soon – not sure what country you are in?

    Best of luck with Orencia. It’s still working very well for me :)

    Naomi

  13. Catherine says:

    Hi Naomi
    just wondering if there has been a change to your infusion? My Actemra has been capped at a maximum 800mg by the PBS. Fortunately this hasn’t been a big problem, as I have been loosing weight now that I am feeling better.
    Also do you have a monthly blood test or just 6 monthly? Have you had any problems with kidney or liver function???
    thanks Catherine

    • Naomi Creek says:

      Hi Catherine

      I don’t believe there has been any change to the Orencia guidelines. That’s a shame about the capping for Actemra but great that you are losing weight and don’t need the higher dose.

      I usually only have the 6 monthly blood test. My liver and kidney function tests are always ok fortunately so perhaps that’s why I don’t have them more frequently.

      Take care
      Naomi :)

  14. Michelle Glenn says:

    Naomi,
    Thanks so much for posting this blog. I have just left an appointment with my RA specialist and have been taken off self injectible medication and now am told I will be starting infusion of Actemra (because I have already moved on from Enbrel, Humira, and now Simponi). I am nervous about this next step, however, your blog is very informative and helps me know what is coming. I wish you continued success with your meds and I will be checking back from time to time to see how you are doing. God Bless

    • Naomi Creek says:

      Hi Michelle

      I am really glad that my post has been helpful to you:) I can imagine going from self injections to infusions will seem daunting. You will be fine with it I am sure. I was actually on the drug trial for Actemra many years ago and did very well on that for a couple of years, but I got a knee infection – not from the drug but because my immune system was low, so was booted off the trial. Anyway, I have many friends who are on Actemra now and are doing very well so I hope you do really well on it too. Thanks for visiting my blog :)

  15. christine says:

    Hi,
    good to be able to discuss things thankyou. I was finding that Actemra was loosing its effectiveness and I have had two Orencia fortnightly infusions as a three month trial. I am finding that my fatique and pain levels are higher now. It’s affecting my optimism somewhat so I was wondering should I be patient and not make a judgement untill the three months or go back to Rheumy. At the moment my Reuhmy is retoring so I’ll be seeing a new one soon, something I’m not looking forward too but no choice.

  16. Naomi Creek says:

    Hi again :)

    Sorry to hear you have to change rheumys. I’ve told mine he cannot retire – hehehe. It’s hard to find good ones and when you do you want to hold onto them!

    I would definitely be patient with the Orencia. I needed at least the 3 months. My rheumy told me to stick it out as best results were often seen after 12 months – if its’ going to work, it progressively works better as time goes on.

    How long have you been diagnosed for?

    Naomi :)

  17. Gonzalo says:

    Hi there just wanted to give you a quick heads up.

    The text in your article seem to be running off the screen in Opera.
    I’m not sure if this is a format issue or something to do with internet browser compatibility but I figured I’d post to let you know.
    The design look great though! Hope you get the problem resolved soon.
    Kudos

  18. Janet Smith says:

    Thanks so much for taking the time to create a blog that is personal and informative. I have had Rheumatoid arthritis since I was 30 and that’s 30 years ago. Over the past 30 years, I have seen the many changes in available drug therapies, as well as the personal opinions of those therapies by the numerous doctors that I have gone to over the years. I have just started on Orencia and have found that it is making some progress in pain relief, muscle strength and overall function. I have also been on Humera and Embrel. Both brought me some positive benefits. Of course, there are negative results from any of these drugs. Currently, my problem has been hair loss. Not something a woman wants to deal with. I would like to hear from other people who have had hair loss due to their prescribed drugs and what they have done about it. I am seriously thinking of shaving my head as I have tried wigs and found them to be terribly uncomfortable and expensive. Also, I would like to post my email for anyone who has any questions about this illness and/or whatever council or advise I can offer based on my many years of dealing with this disease and/or fibromyalgia, which I also have. Thanks and keep posting! Janet Smith Shore53@yahoo.com

    • Naomi Creek says:

      Hi Janet.

      Thanks for your reply :) I do need to keep posting on here. It’s a been a long time so should pull my finger out and just do it!

      Glad to hear the Orencia is helping a little. I found that the effects got better and better for me and have been told that is often the case with Orencia that it has it’s maximum affect after about a year, so keep on with it and hopefully you will get even more benefits!

      As far as hair loss goes, not sure what you can do. Some people have had success with a course of Calcium Folinate tablets. Perhaps you can ask your GP or rheumy about it? Have they suggested anything for the hair loss? Are you on Methotrexate or Arava as that is most likely the culprit for the loss of hair. Once you start improving with the Orencia they can hopefully reduce your dose of some of your other drugs.

      Thank you for offering your email address and being available for anyone to chat to you. Have you discovered the support group I run called Young Women’s Arthritis Support Group (YWASG). Don’t be fooled by the “Young” part as we have all ages, as long as you are young at heart! We have a good forum which you might find interesting to browse at http://ywasg.com/forum and our facebook page: http://facebook.com/ywasg

      Keep in touch and best of luck with your continued improvement.
      Naomi :)

  19. Janet Smith says:

    Thanks so much for the info. I have talked my Dr about decreasing the methotrexate at some point. Right now we are reducing the amount of Plaquenil and Prednisone, but she agreed that it is probably the methotrexate that is causing the hairloss. She agreed that once we get the other drugs to a lower level and see if I can tolerate the decrease, then we can work on the Methotrexate. Thanks again. I will keep you posted.

  20. Janet Smith says:

    Thought I would give you a follow up on my progress. I just had my 6th infusion and am able to finally feel its effects. We have decreased my prednisone by half and my methotrexate by 2/3rds. I am having much less stiffness in the morning and my strength has gotten better. I have stopped gaining weight but have not lost any yet. I am still losing my hair and hoping that stops soon too. It has been a difficult transition and my body has told me so. But, I am hopeful for continued progress with each new infusion. Hope you are doing well.. Keep posting. You have made a difference to me and I am sure to others as well.

    • Naomi Creek says:

      Hi Janet

      Great to hear an update and to know you are starting to feel better :) I found the Orencia took about 6 months to start working well and it got better from then on, so stay positive as I am sure it will keep improving for you.

      If you have been on pred for a while it does take the body some time to lose the weight, so hang in there. I am now on 1mg a day and I go up to 2 or 3mg if I am flaring and that is enough for me to not get side effects but still have an anti-inflammatory effect. So you may want to discuss with your rheumy about staying on a super low dose (if you find you need it) as at those doses you are not really putting any more into your body than it would normally produce.

      I’m glad I have been of some support for you :)

  21. Janet Smith says:

    Naomi, I have been on the orencia for 7 months now and I continue to improve with each infusion. I just found out that I need to have both knees replaced and have scheduled an appointment with the surgeon to discuss a date and whether to have them both done at once. Was wondering if any of your readers have any experience or advise to offer. I am now down to 5 mg of prednisone and 5 mg of methotrexate. You were right, it was the methotrexate causing my hair loss and it is now starting to fill in slowely but surely. I still have not lost any weight but I have stopped gaining. How are you doing?

    • Naomi Creek says:

      Hi Janet
      I’m thrilled to hear you are improving on the Orencia. It’s a shame with all these great drugs that we still need to have our joints replaced, but I’m guessing much of your damage occurred at a younger age before these drugs were around?

      As you may have read I have had both of mine replaced as well as my hips – twice now. I had all of them done separately so can’t really offer any personal experience as to whether you should have both done at the same time. However a good friend of mine Janine had both of hers done at once and she said it was the worst thing ever. “It nearly broke her” were words I remember her saying. I could ask her if she could pop on here and comment if you like. I will ask around for anyone else who has had them done but I don’t know that many people with more than one done.

      From a recovery point of view, it would undoubtedly be easier to have one done at a time, as you would have one strong leg to support the operated one, which is important for remaining strong physically and mentally. I would think this would give you a better outcome in the long run as you could put all your efforts into making that one knee as good as possible in your therapy sessions, but if you got both done at once, I feel as though you may not have the strength or will to work as hard. This is of course my personal opinion, but I know what hard work it is just having one done at a time. Surgery is only part of making the joint better – the real results come from how much you can push yourself with therapy and ongoing exercise.

      I hope that helps. Oh also, another tip for making your recovery better, is to try to strengthen your quad muscles before the operation. They are most likely already weak from having two bad knees, but these muscles are the ones you will need to get working after the op, so the stronger they are before the better your recovery will be. Be careful doing quad exercises as you don’t want to overdo it and hurt anything, so perhaps talk to a physio or exercise physiologist to get some advice.

      Best of luck and keep us posted!
      Naomi :)

  22. jojo says:

    Wow, thank you for all the helpful info. I start my infusion tomorrow. I was very afraid, All I received form the clinic was a brochure on actterma. the procedure wasn’t explained in quite detail. I had no idea of the port being permantley there.
    I was wondering if every week or month if they had stick my vein, in which I have tiny one to access. The nurse that I had talked to aobut 1 month before, didn’t even mention that, and that sucks. Now I know what to expect. Thank you soooooooooo much for the heads up. I use to be on methlytrexate, then lefumide, then methyl prednisone, allergic to all of them. I was on Enbrel for nine months and then it suddenly stop working. My R.A is pretty bad to where at times I cant walk, my wrist and fingers hurt a lot a lot. I also had eczema, as a result of arthritis. Thank you again.

  23. Naomi Creek says:

    Hey Jojo :)
    Thanks for stopping by. I’m glad my post has helped you prepare a little. You said that you are going to be on Actemra – this is a different biologic to the one I am currently on (Orencia), however it is still done by infusion. The port-a-cath is something I had to have put in my chest surgically as my veins were a real problem as I was not going to be able to have the infusions if they couldn’t access my veins! I actually had it put in when I was on the drug trial for Actemra!

    So if you don’t have a port-a-cath, then they will need to access a vein to do the infusion. Best to drink lots of water if possible and have your infusion later in the day so you are very hydrated as that will make locating a vein easier. A port might be something you can look into getting if you run into trouble long term, but it does come with risks too (such as infection risk as it is a foreign object in the body). Not all nurses can access it, so I go to an oncology day centre where many patients on long term chemo have them.

    From memory I think the infusion for Actemra is about an hour or so? Expect to be monitored closely as it is your first one – they will take your blood pressure etc and probably keep asking how you are feeling so they can respond if you happened to have a reaction (which is very rare). After the infusion they will also keep you around for at least half an hour to monitor you before sending you home. Once you have had a number of the infusions they are usually happy for you to stay for a shorter time.

    Sounds like you’ve tried a few meds. Are you still on Methotrexate? Did you get a reaction to that? Are you on any other drugs?

    Best of luck with your infusion and let us know how it all goes!

    Cheers
    Naomi :)

  24. Janet Smith says:

    I am so happy for those who have gained some help or information from your blog. Like I said, I have had RA for 30 years and you have given me knowledge that I did not have. As an update, My hair is coming back…Yeah!! and the surgeon and I decided to have one knee done then 6 weeks later the second one done. It is scheduled for mid Sept. I will keep you posted. Any update on your progress?

    • Naomi Creek says:

      Hi Janet :)
      I am so pleased I have provided some support and knowledge for you. I am glad to hear your hair is coming back too! I think that is a smart idea to get the knees done one at a time. I personally think 6 weeks is quite soon as it takes at least that to get the first one strong again, but I am sure they have taken your health and other things into consideration. Please let me know how you go with the op. I wish you all the best with it. Don’t forget to keep doing some strengthening exercises (quads mainly) before the op – helps heaps and stay positive. I am doing very well thank you Janet, thanks for asking :)

  25. Connie says:

    My story is so similar to Jojo a year ago this thanksgiving when it all started. First I was on methotrexate tha n Enbrel for 3 months nothing was working for me than my rheumatologist suggested Actmera infusion I was terrified my first infusion was a week ago . I feel better also taking prednisone. Thank you Naomi for posting your blog it’s been so helpful

    • Naomi Creek says:

      Hi Connie :)

      Thanks for reading my blog. I am glad you found it helpful and I hope Actemra provides you with some very good pain relief and reduced symptoms.

      Take care!
      Naomi

  26. Linda says:

    My rheumatologist told me today that I will need a port to do my orencia infusions. I get a monthly infusion one via veins but they were unable to get one today and have had a lot of problems previously. Is the port permanent or will they have to do a new one each month?
    The orencia has provided good pain relief and I am able to work 5 days a week with reduced symptoms. The self injected orencia is an option but my insurance doesn’t cover it And I can not afford to pay for it. My insurance will cover the port and infusions so I really don’t have any other options. But I am concerned about the port procedure. I live in United States so my cost are different from yours. Have you had any serious sided effects from port?

    • Naomi Creek says:

      Hi Linda

      That’s most annoying that your insurance company won’t cover the injections – how silly! I went onto the injections for 6 months and they were not as effective as the infusions for me, so I am back on the infusions. Actually celebrated 5 years of Orencia the other day! Glad it is working for you.

      The port procedure is pretty simple – just a day procedure. I went in in the morning and went home after lunch. I was just sedated, not given a full anesthetic. Depending where they put it, you will have a small scar left. I have mine in my chest, just about my breast, so you can’t really see it unless I am wearing a low cut top. Sometimes they put them in your arm – if you can rotate it ok – my arms are not the best, so the chest was the best option. It has made my life so much easier having it. I was in hospital recently for a knee infection and had to have a couple of operations and they used it for the entire procedure and for all the antibiotics and drug relief after.

      There are risks in having a port – not really the procedure itself, but having a device in your body means it can be a source for bacteria to get in and can potentially become infected. If this happens it would be removed. The nurses/doctors accessing the port need to know what they are doing and care for it properly. This ensures it stays clean and reduces your chance of infection. I have had mine in for about 8 years now and have not had any infections. So they usually just leave them in you if you are requiring ongoing treatment. If you were not needing to have vein access after a few years, then they would probably remove it so it was not an infection risk. Another issue that sometimes happens is they can become blocked. This is not common, but again can happen if the person accessing it does not know what they are doing. They are generally pretty rugged things.

      Hope this info has helped and that you find having one as beneficial as I did.

      Take care
      Naomi :)

  27. Great website! It looks extremely expert! Keep up the good job!|

  28. Janet Smith says:

    Last infusion of Orencia sent me to the emergency room by ambulanice due to an allergic reaction. Nice that they still monitor all vitals regularly even when I had been on the drug over a year. Now am waiting on approval for xeljanz.

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