Side Effects

[DFiona]

Where are you when I really need support? :-(.

Awake at 4.30 this morning with severe gastro symptoms -- a bad IBS extreme. Hot bath was required and while I feel a tad better now at 8am, I also feel dehydrated, very weak and like I am damaging my liver like an anorexic by being on this drug which suppresses appetite to the extent I don't want to eat at all.

Don't know how I will get through today. Am meant to be volunteering at the RNIB.

The drug side effects are ruining my life. :-(


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[jack412]

are you newly taking standard metformin? if you are, see the Dr for slow release

 

[Spiker]

Is this from increased Victoza, Fiona?

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[DFiona]

Not sure if it's Victoza or not ... Had some gastro problems before starting Victoza which I explained to consultant .., I was concerned Victoza would mask my underlying problems and hey ho, look what's happened. Who the **** wants to know/be anywhere an incontinent 48 year old diabetic with osteoporosis and sight-loss. My anger at feeling forced to take diabetic treatment which I could predict would be another massive problem knows no bounds. The docs have all denied responsibility for causing any of my suffering telling me it was my choice to take the drugs.

 

[DFiona]

are you newly taking standard metformin? if you are, see the Dr for slow release

No, gave up on all forms of metformin years ago with gastro probs on it. Replaced with sitagliptin.

 

[catherinecherub]

Not sure if it's Victoza or not ... Had some gastro problems before starting Victoza which I explained to consultant .., I was concerned Victoza would mask my underlying problems and hey ho, look what's happened. Who the **** wants to know/be anywhere an incontinent 48 year old diabetic with osteoporosis and sight-loss. My anger at feeling forced to take diabetic treatment which I could predict would be another massive problem knows no bounds. The docs have all denied responsibility for causing any of my suffering telling me it was my choice to take the drugs.

Hi,

I cannot begin to feel how angry you are and feeling poorly as well must be the icing on the cake. Your quality of life is being severely disrupted and you need to be seen asap.

You need an emergency appointment, either getting the Dr. to see you over the week-end if things don't subside or on Monday morning. Could you have a telephone conversation with a Dr. on call over the weekend?
There is something you are taking in the form of medication that does not agree with you. Are you on any other medications that could interact with your diabetes medications?

I think the time has come to be more proactive about your medication. Has anyone discussed insulin with you? This might be the answer as many report that once they go on insulin they begin to feel so much better than when they were taking a cocktail of drugs. Some people see it as a last resort for a Type 2 but often it improves their quality of life. It has it's drawbacks with regard to the DVLA and possible hypos but that would be a small price to pay for feeling better every day. You say you have sight problems so the DVLA might not even be an issue with you.

Stand your ground, decide that you are only going to take what agrees with you rather than be dictated to by someone who is not suffering as you are and make your HCP aware that a plan of action has to be agreed with the patient rather than being forced upon them.
I do hope that you get this sorted and can relax rather than having a daily battle with side effects and emotions.

Take care,

CC.

 

[Daibell]

Hi. The gastro problems are unlikely to be due to Sitagliptin as it normally doesn't cause that sort of problem. I guess it could be the Victoza? The fact that you are on Victoza implies you may be overweight? If so a low-carb diet is essential to reduce both weight and blood sugar. Can you tell us more about your weight and diet to see if we can help.

 

[Spiker]

OP is already using insulin I think, Humulin I. But maybe more insulin, less drug cocktail, could be a viable approach.

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[DFiona]

Thanks for your responses.

To clarify: have been on/off insulins for 16 years. They all make me gain weight and feel lousy.

2 years ago I wasn't on insulin or anything other than sitagliptin (this is a nice gentle drug). able to eat what I wanted, was happy, and I was much lighter as no pain in muscles so more able to exercise -- around 72kg, a pretty good weight for me. Insulin within a year made my weight increase to 79kg, made my breasts increase to old, horrid size so could not see feet(!), could not exercise due to pain especially in upper back, and generally felt absolutely lousy. My hba1c was c. 11 then, only dropping to 10 on insulin :-(. I already had an IBS type bowel problem from years ago which I was beginning to be able to manage and control -- until Victoza. Now I am a week constipated with cramps and weird 'menthol' feeling in oesophagus and stomach and feel constantly cold, followed by sometimes several days of GP prescribed laxative induced very loose unpredictable stools.

I am 48. I should not have to live like this with unsupportive medical people around.

Life is ****.

I was way happier (as were my kids) before Victoza and insulins.

Perhaps my body will get used to it ... I have very little to look forward to, so it had better.

Thanks for listening.


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[Spiker]

It seems clear that you need to come off the Victoza. The doc ought to give you the credit you deserve for trying it, and should have some humility now in finding an alternative that works for you.

If sitagliptin works for you, and the only problem with insulin was the weight gain, maybe a combination of sitagliptin, low carb diet (which you are doing now?) and small amounts of insulin would work for you. If you low carb, and carb count, keeping insulin doses low, you should be able to lower your HBa1c without gaining weight and without any nasty drug side effects.

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[extremeindia]

A side effect is usually regarded as an undesirable secondary effect which occurs in addition to the desired therapeutic effect of a drug or medication. Side effects may vary for each individual depending on the person's disease state, age, weight, gender, ethnicity and general health.

 

[patz15]

Am sorry you are experiencing such bad side effects. Just started on Victoza and the nurse told me to stop taking the sitigliptin, not sure why but maybe the 2 don't mix. Just a thought. Hope you feel better soon and get a lot more help from your medical professionals. Take care

 

[DFiona]

Can't get emergency appointment with any of the diabetes consultants at Guys and Thomas's hospital :-(. Spoke to the DSN consultant on the phone who had to leave my conversation to speak with another patient :-(. I end up with similar problems at whichever hospitals I attend for my medical care.

I had agreed to stay intermittently on Victoza (alternate days) to keep sugars low and to help cope with side effects. What I really want is to discuss other options at length -- as long as it takes, not a brief appointment when I have SO many issues to cover.

Yes I am a compex case -- but I still have rights to good medical care too -- don't I ..??

One even more angry bunny, struggling to survive in North London.

 

[Spiker]

The docs have all denied responsibility for causing any of my suffering telling me it was my choice to take the drugs.

You certainly have the choice to stop taking them. But you probably need to focus on one issue at a time. Tell the DSN that Victoza is intolerable and you are coming off it now unless she can give you a really good reason. That means a reason that is good enough to persuade YOU.

 

[DFiona]

You certainly have the choice to stop taking them. But you probably need to focus on one issue at a time. Tell the DSN that Victoza is intolerable and you are coming off it now unless she can give you a really good reason. That means a reason that is good enough to persuade YOU.

I want an alternative though Spiker otherwise my sugars will rocket sky high again and I'll have gone through the stress of this nasty drug for nothing! Currently my sugars are pretty normal - well this week anyway. Off Victoza and we'll be back to BGs in the teens at least.

I can't win.

Just sent the DSN my Dario logbook for the week. This ought to flag up the issues and trigger them into devising a new plan of action. Staying on Victoza is only a short-term temporary plan until a better solution can be found - hopefully soon. I am doing EVERYTHING on my part that I can to provide them with enough information to make good clinical decisions.

 

[Spiker]

Ok. You didn't mention that the Victoza was because of high blood sugars. I thought you said you were fine before the Victoza?

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[Spiker]

So could this be an alternative: ?

It seems clear that you need to come off the Victoza. The doc ought to give you the credit you deserve for trying it, and should have some humility now in finding an alternative that works for you.

If sitagliptin works for you, and the only problem with insulin was the weight gain, maybe a combination of sitagliptin, low carb diet (which you are doing now?) and small amounts of insulin would work for you. If you low carb, and carb count, keeping insulin doses low, you should be able to lower your HBa1c without gaining weight and without any nasty drug side effects.

 

[DFiona]

Ok. You didn't mention that the Victoza was because of high blood sugars. I thought you said you were fine before the Victoza?

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No. Couldnt get sugars low on insulins. And massive weight gain on insulins alone despite a lettuce leaf diet.

What other reasons would someone be put on Victoza? Surely not just obesity? I certainly wasn't in that caregory before the insulins were restarted in feb 2013, though am now overweight - this obviously contributed to their recent clinical judgment to put me on Victoza.

 

[DFiona]

No. Couldnt get sugars low on insulins. And massive weight gain on insulins alone despite a lettuce leaf diet.

What other reasons would someone be put on Victoza? Surely not just obesity? I certainly wasn't in that caregory before the insulins were restarted in feb 2013, though am now overweight - this obviously contributed to their recent clinical judgment to put me on Victoza.

I was 73kg approx before insulins begun again in 2013. 79kg now though 2.5 weeks on Victoza causing a starvation diet no doubt means weight could now be a little lower..

 

[Spiker]

No. Couldnt get sugars low on insulins. And massive weight gain on insulins alone despite a lettuce leaf diet.

Ok I'm afraid you are losing me here. I don't understand how that is possible.

Maybe call the DSN back for a follow up appointment as the recent one was cut short?