Hi everyone, hope you are all well. The treatments for my GPA have now beaten my immunoglobulin levels down so low that the Vasculitis clinic at Addenbrookes referred me to the Immunology clinic.
They gave me various vaccines and tested my responses and as I didn’t show hardly any response they decided to start me on immunoglobulin replacement therapy.
I had the choice of having it IV every 3 weeks in hospital or self administering it subcutaneously every week. The second option seemed to be their favoured method and with the increased risks involved with regular hospital visits these days, it was the one I chose.
Last Wednesday I went up for the training and had the first dose. This involved being taught how to draw the medication up into 3 syringes each with 20ml and a green butterfly needle then came the unpleasant business of self administering the injections. Don’t get me wrong, I am not needle phobic by any means. Nobody with a condition like GPA could afford to be but even so it struck me as a bit of a brutal business.
From what I had researched on the internet, the methods I saw elsewhere involved using several small needles on the same line attached to the syringe which was in a pump. This seemed a kinder method than pushing it in via a butterfly needle but that is the preferred method at Addenbrookes. The nurse said that patients like the method as once they are used to it, they can get it all done far quicker than if a pump was involved.
I was wondering if anyone else on the forum is having this treatment and what their experience of it is like and what method they use to administer it?
Thank you.
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nicholson27
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Go over to the Lupus forum and ask Barnclown there - she is on the self-administered sub-cutaneous way now since Covid-19 messed up the i.v. method she started on. Also at Adenbrookes.
I have GPA & have immunoglobulin therapy for the same reasons. IG levels never recovered after lots of Rituximab. I attend Addenbrookes although I live in the North West. I was referred to the Immunology Clinic at Addenbrookes & started on IVIG locally every 4 weeks. After a while I was asked to try sub cutaneous weekly in my stomach myself at home. I did this for a year but struggled with it. I found it painful & had lots of bruises. I also have lymphedema in my legs so couldn’t inject there. It was then decided that I wasn’t suitable for sub cutaneous & had to revert back to 4 weekly infusions at my local hospital which have carried on throughout the pandemic in a day ward.
Thanks for your reply and for sharing your experiences. I guess I will just have to grit my teeth and get on with the injections and see how it goes. My wife is an Emergency Nurse Practitioner and will administer them when she is not working on injection days so I am at least not on my own with it but not a pleasant experience whoever does it.
I have been to G2 at Addenbrookes recently for a rituximab and they seem to have it well sorted in terms of covid measures so I would not be too worried to have to go there every 3 weeks for IV if it comes to it but will give it a while trying the subcutaneous way first.
Just a thought but if your wife is an ENP then they might stretch to giving you a syringe driver pump as she is an RN? That way you might not have to self administer? You never know unless you ask? Just a thought, especially if she works at the same trust?
Unfortunately my wife does not work for Cambridge NHS trust as we live on the edge of South East London so works for Dartford and Gravesham NHS trust.
She could always ask at her work I suppose for the lend of one but as they are not something commonly used in A&E, I wouldn’t be too hopeful. As you say though doesn’t hurt to ask. The other thing would be getting hold of the multiple subcutaneous needles on the same line that are used with a syringe pump. To use one with the single butterfly needle lines supplied by Addenbrookes would mean having to still administer the drug in 3 seperate goes as it’s max 20mg in one site.
Good luck with the tests, maybe your results might be good enough to not need immunoglobulin.
Thanks, it was just a thought. I am exED nurse too and although I'd be a bit rusty I'm sure I could get used to a pump again which is why I asked..
I hope it all works out for you however it is administered. Barnclown really is a very knowledgeable person about this. She even did a video post I think.
I much prefer the sub cut route as I got a lot of side effects with the IV route & it knocked me out for a couple of days afterwards.
It is weird to put a needle in your tummy at first but they are very small needles and you do get used to it. I try not to think about it and just shove them in!
Apart from avoiding the side effects, for me the massive advantage with the SC route is it is much more flexible. You can change the day of the week you need to do it on and you can go away with it too (I went to France for 3 weeks last year and managed to take all my stuff with me, whereas with the IV I wouldn't have been able to go away so long).
The deliveries are also good too - very helpful people on the phone line and they are proactive about sorting out the next delivery. I've had one occasion where I was running low so rang them & they sorted it out quickly.
My advice would be bear with it for a while and see how you feel when it becomes part of your routine & you are over the initial weirdness of it all.
Thanks very much for the reply. The immunology nurse did say that the risk of side effects was greater with the IV method but interesting to hear from someone who has experienced it.
You are right that it feels a strange thing to do to stick needles in yourself. I had to inject insulin every day for a few months when I was on very high steroid doses and that felt odd but they were only tiny things compared to the green butterfly needles for the immunoglobulin.
I will take your good advice and stick with it as the benefits you describe are worth having rather than spending another day at Addenbrookes every 3 weeks. I am under about 6 clinics so spend enough time there as it is.
Every Wednesday I shall draw up the injections, take a man up pill and get on with it.
It’s just nice to hear from others that are in the same boat. Not that I would wish this treatment on anyone but good to know you are not the only one and other people are coping with it.
I’m in the same boat as you. I have been self administering for a couple of years. I felt exactly as you do now. I did the ivs for 6 months but as I live 60 miles from Cambridge it was very tiring on top of my other appointments. I also had far more side effects with the Ivs - headaches, backache. To be honest I didn’t realise how many until I started doing the injections myself. You do get used to it. You have total control over when you do it as long as you do it once a week. The nurses are all so nice and so helpful if you have a problem. As traxster said the deliveries are good too. Just had mine this morning. Good luck. Come back if you have anymore questions. I hope the man up pills work 😀
Thanks for your reply. It’s nice to hear from people who are going through similar experiences and the more I hear from them, the more sure I am that subcutaneous is the way to go.
My GPA took an awful lot of treatments to get under control and having had 16 cyclophosphamide, a dozen or so rituximab (and still ongoing) plus steroids in various doses for 4 years, it is no surprise my immune system is in the state it’s in. As the immunoglobulin replacement therapy is likely to be ongoing indefinitely it’s just a case of getting on with it and as you say I will get used to it.
Just as well as I think I used up all of the man up pills during some of the earlier treatments and operations which looking back were far worse than a few injections each week.
Sadly there is likely to be a few more of us heading the same way as more of us have rituximab. If it’s any consolation . I haven’t had any rituximab since February 2017. I’m off steroids and my vasculitis is in remission. I believe that immunoglobulin replacement is sometimes used as a treatment for vasculitis. I just have to deal with the complications that vasculitis has caused me now 😳 I hope you can achieve remission now too.
I was talking to Professor Jayne at my last appointment a few weeks ago and he was saying that they used to use immunoglobulin as treatment for vasculitis and it was effective but very expensive. Then along came rituximab so they switched to that but as we know only too well it can eventually lead to needing immunoglobulin as well although not all patients get to that stage.
I did get into remission about 2 years ago and they stopped the rituximabs that I was having 4 monthly at the time. All went ok for just over a year but then a blood test showed a rise in B cell levels and straight after that a big flare up and back to square one.
As you say, vasculitis causes many complications that we have to live with and I hope yours are not too bad. I too have a long Iist of nasty things the disease has done to me but I suppose we should count ourselves lucky that they now have drugs that can keep us going as it’s not that long ago when many forms of vasculitis were fatal.
Anyway, enough of such depressing talk. I hope you remain in remission and thanks again for taking the time to share your experiences.
I have been doing sub Q IgG with Hyqvia for four years for common variable immunodeficiency. I use two of the butterfly needles but I put lidocaine cream on each site an hour before (put a clear Tagaderm covering over each site.) I also take two Tylenol and one Benadryl and sometimes I take another one during the infusion. It is weird getting used to sticking yourself, but the nurses will train you. I try to do it at night and Benadryl is part of the meds, so I sleep afterwards. I also use a microwave heat pack.
I prefer Hyqvia over Hizentra because Hyqvia is every four weeks and only two needles. It is driven by a battery operated pump. Technically you can put the equipment in a bag or backpack that they provide but I am ok with using an IV pole.
My son has a rare condition similar to GPA, with CVID as well, so he has been on Hyqvia sub q IgG for almost a year. He just can’t stick his own needles, so I do that for him. If doing the needle stick stresses you out, maybe another family member can do it. Just be sure to use the numbing cream. He says the stick does not hurt but he just cannot do it. He had to do 5 days of IVIG in the hospital and the s c I g has fewer side effects. Also you have a lot of flexibility- you choose the exact date and time. You don’t have to go anywhere. You can do it late at night. No exposure to other germy people.
He was first put on Hizentra but in my opinion there were way too many needles, it had to be done weekly, not monthly, and it took nearly as long to administer as the monthly Hyqvia.
Mainly you feel puffy the next day or two and you will want to wear loose clothes and not bend over too much, but it really does get easier and you will feel better.
We learned- as you prime the tubing, keep those needles dry or wipe off with sterile gauze. Drops of solution on the needles will cause extra stinging.
Another tip- you can infuse straight from the glass vials. They gave me a collection bag, but it took 20-30 minutes to transfer the solution to the bag. Infusing straight from the vial saves time. Ask your nurse for the vented connectors.
I would say that actual pain level is a 2 or a 3. It does feel weird, like electricity or mild cramps, when the pump increases speed. It is more uncomfortable than it is painful. Just settle in, put a heat pack on your abdomen, and watch a movie and set a timer in case you fall asleep.
When they train you, it can be frustrating because each nurse has different tricks. However, looking back, it is good to know different tips. At first I called for help. One time I messed up and needed extra parts and a nurse brought them to my home. Always ask for extra supplies when you are first starting.
Hi, thanks for your reply. Your method with Hyqvia certainly sounds more pleasant than the Hizentra that I have been given although when I was given the training at Addenbrookes that did not give me a choice of either which brand of immunoglobulin or what method of administration other that to choose between IV or subcutaneous.
I have to draw up 3 lots of 20ml each from 3 vials into syringes then connect each to a line with a green butterfly needle on the end and then choose a site for each in either abdomen or thighs and one at a time inject them. With a pump and multiple needles on the same line it could all be dome in one go but Addenbrookes don’t supply pumps so the only option is to do each one individually by pushing it in by hand with the syringe.
The first three that were done with the nurse present at the clinic as part of the training were pushed in over about 10 minutes each and were quite uncomfortable. This did put me off a bit. Last night however I set myself up to do one of the three and tried the first one having applied some of the numbing cream and a clear dressing beforehand as you say. I took my time and it was more like 30 minutes to complete but was much less painful than the quicker infusions in the clinic.
I don’t really mind the needles (I can always get my wife who is a nurse to do that bit if necessary anyway) but I found the stinging of the immunoglobulin going in was the worst thing but controlling it myself and being able to stop and start whenever it got uncomfortable was much better. I only intended to do one last night and had only numbed one area but I decided to go ahead and do the other two without any numbing cream and to be honest didn’t find it much different and by the third one I felt more comfortable with it which made me feel much better for the future as this is going to be an ongoing thing. The secret seems to be practice with controlling the rate through the syringe which I have to do manually rather than with a pump doing it for me.
Thanks again for sharing your knowledge and with the replies from the forum I do feel more positive about the whole process.
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