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Any advice please?

donnellysdogs

donnellysdogs

Master
Messages
13,233
Location
Northampton
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
People that can't listen to other people's opinions.
People that can't say sorry.
Hi

Been really happy with rapid d's since using the flexilink plus's...but I have a problem....one example is:

Yesterday put a new set in at midday before I had food...okay all afternoon and went to bed as norma. 4 am this morning I got excuciating pain where the set was, so much so I screamed, woke husband up-not through the screaming but because my body literally jumped 6" up off the bed ...tested blood and it was 5..no problems. Turned on to my other side and felt the set didn't hurt too much. Went back to sleep till 7am. Bloods still ok. Took dogs for walk, and on the way back I was in excrucuating pain again where the set was, so much so I had to sit on a wall and really pluck up the courage to walk very, very slowly back home. As soon as got home, my blood had climbed to 7, and it doesn't normally do this nowadays, it normally stays within .3...so being I was in so much pain I removed the set, put new one in and bolused 1 unit because my blood was obviously climbing-and may have been since 4am when I woke up in pain.

So, did the set change at 9am, went to friends and I was in agony again...didn't have a new set with me.....tried to move and it was too painful, so I had to take it off and try to put it somewhere else. This I did, and it has been ok since. The 2 sets I have used/moved today haven't bled profusely when removing the cannula. Levels continued upward till 10am and then started to come down.

However, this is occuring so often, and when the sets are in my stomach they also get a sort of itchiness pain, that makes me just want to slap my skin where the set is...it is more of an irritation but with a mild pain to it...and this only occurs when I use my stomach. Also I have used my stomach and have found the sets so painful that I have had to shout to my hubby to get me another one out of the cupboard because I literally couldn't move. It issn't the glue, I don't think, as I haven't had any abnormal marks where the plaster has been, but I have had itchiness around the outside of the set, and have had dry skin next to it, which again, I have never had ever in my life.

I have never experienced this prior to the last 3 weeks. The sites don't bleed, I haven't got any scar tissue. My stomach is pretty much muscle and I am lean...but not thin. i am a size 10. My legs and bum aren't muscle, but they are shapely if that makes sense. I haven't got any scar tissue. In fact I never used to inject in my stomach, and mainly used my bum when on injections. I always have my skin checked by DSN's and Consultants every visit.

There is only one thing that is different, and that is that I have been on a course of strong antibiotics for two weeks, that advise to keep out of the sun-so I was wondering whether they may have increased my sensitivity-if they can affect sensitivity to sun???

The sets are 6mm, and I really do not want to go back to plastic ones.

Has anybody got any advice? I am now considering whether to use my arms, but these are very muscley.

Can I get suddenly sensitive to rapid d's after 7 months usage? Am I just all of a sudden hitting unfortunate painful sites all of a sudden. I really do not want to have to change the sets so frequently as I am currently doing....not only for me...but for the costs as well.....

I always massage all of my body with baby oil after baths and showers,- and I have always done this. I am not using any different soap powder etc...I know that when I get this pain my levels will go up....and it is so annoying when I have had 7 months of being so happy with them.

any advice appreciated.....
 
The pain sounds as though you'll hitting muscle, sharp pain it's digging into the muscle and irrating itchy pain could be that the end of the cannular might just be scratching the muscle surface!

As to the dryness of your skin this could be down to a change in adhesive on that patch! A barrier spray like Cavalon could help to resolve this it's available of prescription just make sure they prescribe the spray and not the cream as the cream will prevent the patch from sticking

Have you tried self inserting your sets, this might give you better control rather than have a widget firing them under force and just sending them slightly too deep!

How about trying an angle set, this might enable you to position the sets better, very good when there is minimal fat layer to be had..

If you have developted a reaction to the dlink, and don't want to use either the teflon and/or angled, have a look at what other pumps use the lunar locking system perhaps a change of manufacturer completely might resolve your problems
 
thanks Jopar
Always self insert the d's and I always do it standing up, and I always used to feel a painful spot was painful straight away, so I would just whip it out and find another place...and the painfulness was never so bad when I hit a painful bit going in, as it is now hours later...may have to llok at different manufacturers but not sure how this would be with my pump-and DSN and PCT for payments and guarantee....I just want to go back to how I was....
 
Hi,

Ohh donnelly wish i had some advice for you. I get a bit of sensitivity like you and take out cannula and change spot. I usually get it if i use my stomach, which is the opposite to yours, i am a size 16.
If the sensitivity continues i think you may just have to avoid the areas which cause it. :wink: :wink:

Hope it gets better soon. Thinking of you 8) 8) 8) 8)

Josie
 
My stomach is the wrost for immediate pain, in my legs and my buttocks it can be anywhere from 3-12 hours later, and it hits me with a huge hit that I can't move. The only place that I have left without any pain at some point is my arms which I can't have used more than 10 times in 25 years +....the same as my stomach...my legs and bum that I used so much are less painful....I just can't understand why it has happened now, as I have gone 7 months using them with no problems.

TBH I am worried about the amount of times I am having to change them, or like today having to pull it out and reposition (germies!!!), it is now happening every single time,,so more than often now days I can be using well more than 7 sets....

Todays 3rd repositioning has been ok, so that is what I don't understand as well. I can hit good areas...repositioned from stomach to bum and now in leg...and yet 3 weeks ago DSN said to stop using my legs and use my stomach-which was worse....she said this because I had a leakage from a set all over the white sticky stuff and this looked like blood and insulin.....
 
When you say reposition what do you actually mean!

As I've got this image of you taking out a set after a couple of hours and putting it somewhere else, and I'm sure I wrong..

Problem is they could have changed the lubrient that they use during manfuacturing, perhaps change makes of company etc.. I know that some people find this with needles and syringes they can use one manufacturers but fine with another one...

The only other option if you are going to have problems with sets after you've used them after a period of time, is the Diaport a little gadget that is surgery put into the skin so it deliver insulin either with pen/syring or pump into the body, it's a permament fixture.. Often used when somebody is alergic to insulins, but by delivering near to where insulin hit the enteral blood system it can cut the dose amount to minimal levels to prevent the alergic reaction that is suffered when the insulin is pooled under the skin for adorption!
 
Sorry to see this post and that you're in so much pain. I've been racking my brain to think what it might be but it does sound like you're hitting/touching muscle.

I got the itchy situation recently with LiftPlus (even after using it loads) so have gone back to baby oil for removing sets for now.

I believe some antibiotics can cause increased pain sensation as my friends son was given some for a really bad ear infection and they made his skin so sensitive he couldn't bear water touching it in the bath. How long are you on the antibiotics for?

Have you tried a new batch to check it's not another bad lot? Also have they sent you a longer length by accident?

Sending you big hugs and hope you find the answer soon!!!
 
Thank you for the advice...I have also emailed DSN this afternoon...so hopefully will be able to talk to her next week.

Have heard of a diaport form a friend.....where do they go? How come they can stay in permanently? I will have to google this...don't really want to go down that route..unless it is the only way I can stay on a pump...

I had another new batch of sets arrive this week. So will try these on Sunday...if I can last that long...I mark down on the log book, everytime I do set changes, so it makes it easier for the DSN to check. I just don't want to be wasting money...I will try the new sets definitely over the weekend.....perhaps they may be better and I can go back to normal.....

Thinking about it, it only since going over to the new box, after having occlusions with last batch that I have had these problems...Only got new batch this week, so will let you know how I get on.

Nowadays, I only use liftplus on my tum, as I just can't get the sticky stuff on, as I haven't got any fat to cling on to to scrape at the sides to lift...but also wondering now, whether the lift plus on stomach could be giving me the dry skin around ...I always place the new set two fingers away...but..it is around the area that I had previously sprayed that goes flaky...a little like big dandruff...sounds gross!!!...it only lasts a few days as the baby oil gets to work...

Thank you for helping me to make sense of what could be happening.....I'm not a quitter, I just don't like things happening that I can't get to the bottom of and resolve....and this has really thrown me....

Thank you all so much...and for the big hugs too....I really have felt in need of them....
 
Oh gosh that looks gross....and does anybody know whethre Leslie still uses the diaport...as details I believe were a few years old...scary on how much her basals went up too....

The repositioned set has remained good today, so am going to swop it tomorrow for ones from the new bacth of 2 boxes I have....if I don't get problems with new batch then I will get hold of Accuchek,,,,,,they must have a big black X marked against my name!!!!!

Thanks Mushy....for leading me to photos!!!!and details...don't think I like the look of it..glad to see the photos!!!!! and details!!
 
Tried new set from new batch and so far so good...last set I took out from the old batch..although levels ok, had blood and looks like insulin spilling out on to white sticky plaster again!!

Hoping new box will sta comfy again...and no more spurious leaks..
 
Well...latest update...Accuchek sent me 2 boxes that I ordered (different batch numbers to the painful ones). I have used sets from both of these boxes and no problems at all. Levels balanced, no pain, no irritation from cannula.

I phoned up accuchek today, as I still had 10 left from the box that was causing me pain and irritation. They are sending me a complete new box FOC and sending me packaging to send back the sets for testing in Switzerland.

I apologised and said that I really didn't want my pct having to pay for 10 sets that I cannot use, and that I am fully aware that this is now 3 batches in total (flexlink +'s, rapid d's causing occlusions), and the gentleman was so, so nice and said that unless they were told of problems by patients, then they wouldn't be aware of them and couldn't correct if necessary. I did explain that I just didn't want other people having problems and my pct having to pay for sets that I just couldn't use. The gentleman was really nice and really made me feel as if they are concerned to deal with problems and do take notice of patients. I explained that prior to these 2 boxes and now with the latest 2 I am using there has been no problems at all, and didn't want to appear as a 'moaner'-and he just said that 'if they aren't told of problems then they won't be aware of them....

It is so good to have comfy sets again...still on same medicine that I was on with the pains, still rotating over the same areas of legs and bum (more than) tum...and everything good again.....
 
donnellysdogs said:
Well...latest update...Accuchek sent me 2 boxes that I ordered (different batch numbers to the painful ones). I have used sets from both of these boxes and no problems at all. Levels balanced, no pain, no irritation from cannula.

I phoned up accuchek today, as I still had 10 left from the box that was causing me pain and irritation. They are sending me a complete new box FOC and sending me packaging to send back the sets for testing in Switzerland.

I apologised and said that I really didn't want my pct having to pay for 10 sets that I cannot use, and that I am fully aware that this is now 3 batches in total (flexlink +'s, rapid d's causing occlusions), and the gentleman was so, so nice and said that unless they were told of problems by patients, then they wouldn't be aware of them and couldn't correct if necessary. I did explain that I just didn't want other people having problems and my pct having to pay for sets that I just couldn't use. The gentleman was really nice and really made me feel as if they are concerned to deal with problems and do take notice of patients. I explained that prior to these 2 boxes and now with the latest 2 I am using there has been no problems at all, and didn't want to appear as a 'moaner'-and he just said that 'if they aren't told of problems then they won't be aware of them....

It is so good to have comfy sets again...still on same medicine that I was on with the pains, still rotating over the same areas of legs and bum (more than) tum...and everything good again.....
Click to expand...

Good to hear you've got it solved!

It's also great to hear that accu-check are dealing with the issue very well too! that they will 'test' the sets to see what was wrong!

It's very true that if people don't make companies and manufacturers aware of problems then they will just keep dishing out products thinking they are fine! i'm sure they will have some sort of testing in place to keep their own records and to monitor production but they can't be aware of everything as we are the ones using them everyday!
 
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