Lumps at Infusion Sites

C

Coopj

Member
Relationship to Diabetes
Type 1
Hi all, I have been on the Medtronic 780G closed loop for a few months, I'm getting on ok with it levels wise - I hate the Guardian 4 Sensors but know the Simplera should be with us soon.
My biggest problem and one that may spell the end of pump therapy for me is the lumps I'm getting at the infusion sites when I remove the canular. They are big red angry lumps that itch, and unfortunately are not going away - they do get smaller but if you press the skin I can still feel the original lumps from 3 months ago, I am on the 7 day infusion set, the idea being it will give me more time to heal between rotations as the lumps seemed to be the same size on the 3 day ones. It seems like its a reaction to the plastic canula or something. The other problem I have is that I had a kidney removed and have large scar on my left side pretty much going from my belly button right around nearly to my spine so this side of my body doesn't have a lot of room...basically I am already running out of real estate for the infusion sets.
Has anyone experienced this? did anyone find a solution? I am very worried I'll have to go back on injections, my diabetes service doesn't fund any other devices so it's this or nothing, I've tried savlon, massaging, tea tree cream, a massage gun thing and I'm even thinking of getting a little shockwave machine thing, I'm desperate to protect my remaining kidney and closed loop gives me the best chance so I'll try anything at this point.
 
Hi @Coopj Sorry to hear that you are having problems with your cannula sites.

I am using the same system as you. I tried the 7 day sets and had big problems with skanky sites that took a while to revocer. I switched back to 2/3 day cannulas. Have you been offered the different Medtronic cannulas. I am using the minimed Mio advanced. These address dexterity issues as well as generally not causing issues for me, although I have the odd one that hurts/ needs changing sooner than planned. I did try their metal ones and the angled ones but settled on these as I found problems with the others.

Have you switched insulin recently? I swapped from Novorapid to FIASP in the hopes of reducing pre-bolus timing, but reacted badly to whatever they had added to the insulin, so went back to NR.

Like you I have a scar which was from well before keyhole surgery so I have quite a big bit of my abdo that is unusable. I now use my arm for the sensor, and keep abdo for cannulas and switch sides each week (to be closer to the sensor for that week). I have tried using buttocks but find it awkward reconnecting after a shower. I know others use their legs. It is worth watching for changes in absorption if you move cannula sites.

Having been on HCL for three years + I can understand why you wouldn’t want to go back to MDI.
I hope that something above is of some help. Let us know how you get on.
 
SB2015 said:
Hi @Coopj Sorry to hear that you are having problems with your cannula sites.

I am using the same system as you. I tried the 7 day sets and had big problems with skanky sites that took a while to revocer. I switched back to 2/3 day cannulas. Have you been offered the different Medtronic cannulas. I am using the minimed Mio advanced. These address dexterity issues as well as generally not causing issues for me, although I have the odd one that hurts/ needs changing sooner than planned. I did try their metal ones and the angled ones but settled on these as I found problems with the others.

Have you switched insulin recently? I swapped from Novorapid to FIASP in the hopes of reducing pre-bolus timing, but reacted badly to whatever they had added to the insulin, so went back to NR.

Like you I have a scar which was from well before keyhole surgery so I have quite a big bit of my abdo that is unusable. I now use my arm for the sensor, and keep abdo for cannulas and switch sides each week (to be closer to the sensor for that week). I have tried using buttocks but find it awkward reconnecting after a shower. I know others use their legs. It is worth watching for changes in absorption if you move cannula sites.

Having been on HCL for three years + I can understand why you wouldn’t want to go back to MDI.
I hope that something above is of some help. Let us know how you get on.
Click to expand...
thank you for the swift reply - it does sound like we have been on similar journeys with the pre keyhole scars and I also use the arm for sensor and stomach for cannulas. I still have a couple of Mio advanced sets here that I need to return, I did try and it was the same, I also switched to NovoRapid and then back to Fiasp and made no difference which makes me think its the actual cannulas, I assumed the MIo and the 7 day would be the same plastic cannulas.
I had no problems with the sensors - or with the Freestyle Libres before I started this so it's something with this set up.
 
Know you say site lumps are same if you use 3 or 7 day infusion set, but tbh I wouldn't want to use same site for 7 days on the run, if your total daily insulin dose is pretty high then that's fair whack of insulin going in one place.

Agree with @Inka that bum & thighs can be used also.
 
thank you for the replies - I've been type 1 for 24 years, and have been through everything with type 1 but for some reason I cant get my head around using bums or thighs - plus I play a lot of football and ride bikes, I keep my pump in a running belt close to my stomach and that works.
Re the infusion sets, Medtronic are the only ones that have a 7 day infusion set - it's not me leaving a 3 day one in for 7 days, they are actually 7 day ones, they have an extra large reservoir that takes 300ml, however it last me 6 days so I tend to change it then. I changed it last night another big lump, I used savlon, massaged it etc, nothing seems to work.
 
Also if you had to move from pump to MDI you would need more sites more often so I am not sure that would be a fix actually. I was on 4 - 8 injections a day so lumps and site changes still an issue
Do you have the option to try different insulins or a patch pump?
I have played full contact rugby in mine, never lost one, and it doesn't get in the way. I know of others who play hockey, athletics, martial arts etc. in patch pumps and seem to cope well.
I would say give it a go in another location, mine is only 3 days at a time so it fits around 2 training sessions and matches well enough, I would use my bottom for matches, it just took planning of sites to make sure the area had rest when I could. As its a slow healer that area apparently.
 
Coopj said:
thank you for the replies - I've been type 1 for 24 years, and have been through everything with type 1 but for some reason I cant get my head around using bums or thighs - plus I play a lot of football and ride bikes, I keep my pump in a running belt close to my stomach and that works.
Re the infusion sets, Medtronic are the only ones that have a 7 day infusion set - it's not me leaving a 3 day one in for 7 days, they are actually 7 day ones, they have an extra large reservoir that takes 300ml, however it last me 6 days so I tend to change it then. I changed it last night another big lump, I used savlon, massaged it etc, nothing seems to work.
Click to expand...

Yep, I know you’re using 7 day sets, but I still think they’re a bad idea. Have you tried stainless steel cannulas? How much insulin on average are you taking a day?
 
PhoebeC said:
Also if you had to move from pump to MDI you would need more sites more often so I am not sure that would be a fix actually. I was on 4 - 8 injections a day so lumps and site changes still an issue
Do you have the option to try different insulins or a patch pump?
I have played full contact rugby in mine, never lost one, and it doesn't get in the way. I know of others who play hockey, athletics, martial arts etc. in patch pumps and seem to cope well.
I would say give it a go in another location, mine is only 3 days at a time so it fits around 2 training sessions and matches well enough, I would use my bottom for matches, it just took planning of sites to make sure the area had rest when I could. As its a slow healer that area apparently.
Click to expand...
I would love to try a patch pump like an omnipod but they are not on offer yet, I'd be interested to see how it would work in the arm - I have never injected in my arm, it would be a good guide as to figure out if I'm just allergic to insulin in general and it's that that's giving me issues. I do have lumps on my stomach and legs - which is one of the reasons I was approved for pump therapy as my injection sites are generally poor - but mostly around the belly button area and tops of thighs - so I'm now using those areas to the right and left if that makes sense.
 
Inka said:
Yep, I know you’re using 7 day sets, but I still think they’re a bad idea. Have you tried stainless steel cannulas? How much insulin on average are you taking a day?
Click to expand...
thank you, Inka - I see what you mean - I get what you mean about 7 day sets, it's logical to think the longer they stay in the more chance there is of problems with absorption, I thought that too, and to be honest I have found that day 7 does seem to be like that towards the end, if I change a day earlier which is when the reservoir generally runs out then it's ok absorption wise.
My first week was with steel cannulas, I think they were call Sure T or something, I was getting the lumps then but I'm not sure they were as bad, but they were manual insertion and I was having real difficulty putting them in, so they moved me to the mio advanced 3 day one as it had the clicker inserter, which took away that anxiety, but the lumps were bad, so the thought was if I went 7 day and got the same lumps at least it would give the previous site more time to heal - the trouble is it is taking quite a while to heal, over 3 months and I can still feel small lumps from the original infusion sites. If I could heal them quicker it would be so bad.
I was really hoping someone would say - yep I got them too and sorted it by doing this.... but it seems its something I seem to be getting in isolation :(
 
Coopj said:
I would love to try a patch pump like an omnipod but they are not on offer yet, I'd be interested to see how it would work in the arm - I have never injected in my arm, it would be a good guide as to figure out if I'm just allergic to insulin in general and it's that that's giving me issues. I do have lumps on my stomach and legs - which is one of the reasons I was approved for pump therapy as my injection sites are generally poor - but mostly around the belly button area and tops of thighs - so I'm now using those areas to the right and left if that makes sense.
Click to expand...
Can you use any sites on your side or back?
For me the arm is the best site, but the libre should only be on the arms and I was told not to have them too close together, sometimes I double device on one arm, or have one device on each. My insulin works quicker on my arms, as my legs got most of the MDI injections as my stomach was too thin, and I couldn't manage my arm on my own (my brother or mum would help when I still lived at home), so for years the same sites got used and I have a lot of scar tissue on my thighs from my pregnancy so I can use the sites but know it needs more time for insulin to work / healing.
For me and my hospital team the omnipod was the best option for my lifestyle, I do think it is great for sporty people, but many of you managed with the other types well enough.
 
PhoebeC said:
Can you use any sites on your side or back?
For me the arm is the best site, but the libre should only be on the arms and I was told not to have them too close together, sometimes I double device on one arm, or have one device on each. My insulin works quicker on my arms, as my legs got most of the MDI injections as my stomach was too thin, and I couldn't manage my arm on my own (my brother or mum would help when I still lived at home), so for years the same sites got used and I have a lot of scar tissue on my thighs from my pregnancy so I can use the sites but know it needs more time for insulin to work / healing.
For me and my hospital team the omnipod was the best option for my lifestyle, I do think it is great for sporty people, but many of you managed with the other types well enough.
Click to expand...
I really miss my Libre, the sensors with this pump are horrible, my wife has to help me put them on but they are bringing a new one out that's like a libre and I cant wait, to be honest I would absolutely love an omnipod, I have thought of all ways to get one but my diabetes service currently do not provide them. I hate the tubing, I'm really struggling to sleep with it, I cant have on the clip on my belt so constantly wear a running belt and put it in that.
It's strange as I'm quite flexible but for some reason I could never inject in my arms - I couldn't reach - but had no trouble with a Libre, it's weird. I had a couple of frozen shoulders so it could be that - I havent tried my sides or back but have a feeling I may have the same issues - I would try but I think I'll just get the same lumps.
 
@Coopj there are other patch pumps available.
My clinic told me that OmniPod is too expensive so they do not offer it - they would rather support more patients with a cheaper pump.
However, I have been using a Medtrum pump for the last 4 years. It is even smaller than the OmniPod and they have just introduced HCL.
Initially, I had some issues which I think was related to it coming to market too early (both technical issues and an inexperienced, but very supportive, support team) but in the last couple of years, it has been really stable and, as more people are using it, the support team is more knowledgeable.
I also love that it is managed from my phone.

The downside of a patch pump which could be an issue for you is that there is no choice of cannula as it is part of the pump. I believe OmniPod provide a dummy pump so you can trial the cannula and size. Initially, I had a dummy Medtrum pump but I am not sure if this is available now as I cannot see it on their website.
 
Coopj said:
thank you, Inka - I see what you mean - I get what you mean about 7 day sets, it's logical to think the longer they stay in the more chance there is of problems with absorption, I thought that too, and to be honest I have found that day 7 does seem to be like that towards the end, if I change a day earlier which is when the reservoir generally runs out then it's ok absorption wise.
My first week was with steel cannulas, I think they were call Sure T or something, I was getting the lumps then but I'm not sure they were as bad, but they were manual insertion and I was having real difficulty putting them in, so they moved me to the mio advanced 3 day one as it had the clicker inserter, which took away that anxiety, but the lumps were bad, so the thought was if I went 7 day and got the same lumps at least it would give the previous site more time to heal - the trouble is it is taking quite a while to heal, over 3 months and I can still feel small lumps from the original infusion sites. If I could heal them quicker it would be so bad.
I was really hoping someone would say - yep I got them too and sorted it by doing this.... but it seems its something I seem to be getting in isolation :(
Click to expand...

@Coopj I insert all my sets by hand and have never used an inserter. I think you have better control/insertion by doing so. The steel sets my pump uses are very easy to insert. They have a tiny short and very fine needle and it’s effortless to insert them.

I’ve found the wrong set can be the cause of major problems. I’d rather have a ‘less good’ pump than crappy sets or a poor choice of sets. Luckily, my pump is brilliant and has great sets so I didn’t have to make that choice, but in your position I’d experiment with different sets and see which works best. I’d also try a different insulin. I know you said you went from Fiasp to NR and back to Fiasp, but there are a number of other insulins you could try, eg Apidra.

If you’ve only had the Medtronic pump a few months is there any option of swapping it? You could still loop on other pumps, and if you choose a new pump carefully, you’d have a good choice of sets to try. You’re not the first person who’s mentioned issues with Medtronic sets here as I remember reading a number of other comments. So perhaps it’s simply the sets?
 
Coopj said:
I would love to try a patch pump like an omnipod but they are not on offer yet, I'd be interested to see how it would work in the arm - I have never injected in my arm, it would be a good guide as to figure out if I'm just allergic to insulin in general and it's that that's giving me issues. I do have lumps on my stomach and legs - which is one of the reasons I was approved for pump therapy as my injection sites are generally poor - but mostly around the belly button area and tops of thighs - so I'm now using those areas to the right and left if that makes sense.
Click to expand...

Sometimes where my omnipod on arms, basically you just place it wherever you would inject on mdi.

2 pods before current one were on my back but towards sides, got wife to put them on a there as I'm no contortionist.
 
helli said:
@Coopj there are other patch pumps available.
My clinic told me that OmniPod is too expensive so they do not offer it - they would rather support more patients with a cheaper pump.
However, I have been using a Medtrum pump for the last 4 years. It is even smaller than the OmniPod and they have just introduced HCL.
Initially, I had some issues which I think was related to it coming to market too early (both technical issues and an inexperienced, but very supportive, support team) but in the last couple of years, it has been really stable and, as more people are using it, the support team is more knowledgeable.
I also love that it is managed from my phone.

The downside of a patch pump which could be an issue for you is that there is no choice of cannula as it is part of the pump. I believe OmniPod provide a dummy pump so you can trial the cannula and size. Initially, I had a dummy Medtrum pump but I am not sure if this is available now as I cannot see it on their website.
Click to expand...
this is really helpful, thank you, I've just looked on their website and it looks really good, they even supply a test pump with cannula, I'll read further but that would give me a chance to see if I react the same way - it's fantastic there are other options.
My only fear is that if its not one my diabetes service provide they might not want to look at it, but I'll definitely check 🙂
 
Inka said:
@Coopj I insert all my sets by hand and have never used an inserter. I think you have better control/insertion by doing so. The steel sets my pump uses are very easy to insert. They have a tiny short and very fine needle and it’s effortless to insert them.

I’ve found the wrong set can be the cause of major problems. I’d rather have a ‘less good’ pump than crappy sets or a poor choice of sets. Luckily, my pump is brilliant and has great sets so I didn’t have to make that choice, but in your position I’d experiment with different sets and see which works best. I’d also try a different insulin. I know you said you went from Fiasp to NR and back to Fiasp, but there are a number of other insulins you could try, eg Apidra.

If you’ve only had the Medtronic pump a few months is there any option of swapping it? You could still loop on other pumps, and if you choose a new pump carefully, you’d have a good choice of sets to try. You’re not the first person who’s mentioned issues with Medtronic sets here as I remember reading a number of other comments. So perhaps it’s simply the sets?
Click to expand...
It does seem like it could be the sets, I really need to try some other sets - I'm going to email my team today.
 
nonethewiser said:
Sometimes where my omnipod on arms, basically you just place it wherever you would inject on mdi.

2 pods before current one were on my back but towards sides, got wife to put them on a there as I'm no contortionist.
Click to expand...
I got dummy one from omnipod to check the size and it's a really good size - I'm not sure about putting things in my back though...you are braver than I !!
 
Coopj said:
I got dummy one from omnipod to check the size and it's a really good size - I'm not sure about putting things in my back though...you are braver than I !!
Click to expand...

Not really a case of being brave if honest, after 42 years sites have got kinda bit worn out so always looking for new ones where absorption is excellent.

Sometimes place pods on my chest, surprisingly comfortable & not in way of things either, being male it doesn't bother me.
 
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