Report Adverse Reactions to the MHRA!

[janabelle]

Since I became a member of the forum just over a year ago, I have been in contact with many people suffering adverse reactions to analogue long-acting insulin. It was the reason I joined the forum, as I was very ill and suffering poor BS control on Lantus. I since changed to pork insulin and and no longer suffer from the side-effects which included; extreme lethargy-sometimes sudden in onset, muscular & joint pains, tremor, inconsistent and unpredictable blood sugar control, and a feeling like I was 'being poisoned'; sounds dramatic, but 2 other people this week have described the same feeling to me using the same words.
It is important that people are made aware of adverse reactions or side effects to any medications.
It is also important that you report these- it can be done online at the MHRA (medical and healthcare products regulatry agency)website.
I have recently discovered that my hospital Diabetes Consultant failed to report any of the symptoms and side-effects I suffered on Lantus, in my notes. I am not happy about this innacurate reporting and am making a complaint to my local hospital to have it rectified.
Jus

 

[hanadr]

Good
Sometimes we hqave to stand up for ourslves
I'm getting a name for being eccentric, because I don't let things go by.

 

[janabelle]

Good for you Hana! I get the impression my diabetes nurse wishes I would just shut and put up-never!

Diabetes clinics prefer us to go through the turnstiles quietly, having our blood sugar tested, our blood pressure taken, and our urine tested. However if we report probs to our doctors, they should take notice and offer help. At the very least they must be obliged to keep true and accurate records of the consultation.
If retrospective research is carried out using patients' records,at my hospital, it will show that I had good glycaemic control and suffered no side effects on Lantus! :twisted:
Jus

 

[kewgirl]

I agree Jus

Some and I stress some individuals on Lantus are suffering debilitating side effects, which are not being recognised by health professionals.

For me changing to Lantus synthetic analogue was described to me as "the greatest thing for Type 1 diabetics" by my diabetic team - a decision I now deeply regret. The side effects were extremely debilitating including - extreme fatigue, memory loss, joint & muscle pain, feeling as if I was in a foggy toxic state all the time despite good HBA1c results. Having changed to Porcine Animal Insulin I feel so much better & feel as if I am getting my life back. Nothing will convince me that this synthetic analogue is safe for everyone.

It is easy to report side effects on www.yellowcard.gov.uk.

In January 2008 MHRA listed Lantus (Insulin Glargine) as “a new drug under intensive surveillance & any adverse reaction which could conceivably be associated with it to be reported”.
Not sure how much reporting has/is being done.

Tracey

 

[janabelle]

Hi Tracey, good girl
I get so caught up i forget the detail-thanks for adding the 'yellow card' website and I hope it encourages many people to report dodgy drugs like Lantus!!
It should definately be under surveillance- then arrested and put away for life!
Jus x

 

[deli di]

I was diagnosed type 1 in Feb after becoming extremely ill. Was put on Lantus and humalog and started to get my blood sugars under fairly good control, although did not feel back to normal, and was assured it was because I had been so ill and when I put my weight back on and got my strength back, I could get back to my very active life style.Well seven months later, weight back on and blood sugars pretty much under control, except for quite a few hypos, I felt dreadful. Dizzy, queasy, confused,weird feeling in my arms were some of the symtoms I was putting up with, thinking, this is as good as it gets.
Asked my diabetic nurse if this is how it's going to be from now on, and all credit to her, she arranged another appointment with the specialist.
She arranged for all sorts of blood tests and, as an afterthought, told me to change the time I took Lantus from morning to evening. As I had taken my dose that morning she told me to leave it till the following evening, leaving me Lantus free for 24 hours.
I upped my humalog dose slightly to compensate.
All day I felt great. When the time came to take my Lantus I was feeling better than I had done for months. I just couldn't bring myself to inject with Lantus.
I decided to increase my humalog and see if my blood sugars were ok. They were! Spoke to specialist and she advised me to carry on and we will discuss on Tuesday, get blood results, and see if I need a back ground insulin. Will be absolutely gob smacked if any thing shows up as am convinced it was the Lantus making me ill.Can't believe I feel normal! See specialist on Tuesday, let you know results.

 

[janabelle]

Hi Deli-di,
So pleased you're feeling better, if you're convinced Lantus is making you feel ill, you really need a new basal quick.
When I was on Lantus I took my dose in the morning about 8 o'clock, pretty soon after I'd spend a lot of time on the loo :cry: The first morning I came off Lantus, I can honestly say I felt like a different person; awake, well and despite having no insulin until lunchtime my BG stayed around 6-7. On Lantus my BG by mid-morning would have been between 15-17! The relentless exhaustion and foggy feeling lifted and there is no doubt in my mind what caused it, especially since hearing so many similar stories to mine.
Best of luck with the specialist, but don't take any nonsense- if you don't want to take Lantus you are perfectly entitled to choose a different analogue insulin or insulin type.
Meanwhile you should contact the IDDT, they were a great help to me, and gave me the confidence to approach my doc with the problems I was having. Here's a link http://www.iddt.org/here-to-help/contact-us/
Good luck & keep us posted
Jus

 

[deli di]

Hi Janabelle
Just read your reply. Consultant surprised I dropped the Lantus but admitted I looked much better. Told me to carry on what I was doing, which was just giving humalog at meal, and see her in a month.Can't tell you how well I feel although morning readings are a little high. See her soon so will let you know what they decide.
There is no doubt Lantus was making me ill, just hope whaterver they put me on agrees with me.
Glad you are feeling better. going on the link now.
Thanks di

 

[janabelle]

Thanks Di,
Best of luck with your next doc visit. More than likely you will be offered Levemir by your GP, but there are alternatives to analgoue insulins, and after your experience with Lantus you may be better trying a different insulin type. Don't forget to contact the IDDT, & do some research of your own before you visit the doc so you'll feel more confident about approaching him/her.
best of luck & keep us posted
Jus