If there are others on the forum with a Mast Cell Activation Disorder who take diabetes drugs, I'd like to hear their experiences.

I have had many hair-raising, drug-related reactions, and since four of those reactions were to the four diabetes drugs I took, I have been doing nothing about it ever since, afraid to try injecting insulin.

I wonder if insulin is safer than the oral meds, or if it is just as risky, or worse?  

I know that some people are allergic to it.  And I don't understand whether if something is mast-cell-activation-related -- not true allergy -- if "desensitization" works.  I took Glyburide for years before it suddenly hit me, I should have been well-desensitized.

The doing nothing, isn't safe, either, as time goes on and glucose worsens.

I don't expect "ordinary" doctors to understand the question, since they don't in any other regard.

Of the four classes of diabetes drugs I have used: one (Glyburide) I had taken for a couple of years before it suddenly started triggering me into cardio-vascular reactions (bad anaphylactic style) each time I took it; a second one (Actos) got me on the third pill -- driving, in the middle of a parking lot, where I sat with cars honking at me for a half hour before I finally carefully prayed my way home (no one offered to help me), a third (Januvia) caused me to go to the ER on the very first dose, where the ER doc agreed it sounded "allergic", another (Metformin) just kept me too sick to function for two months.

Because the reactions can occur after any amount of time, simply trying it under a brief medical supervision, won't tell me if it's safe for long.

So I don't feel optimistic injecting these drugs at home.

Any suggestions from others who have been there?

When I try to tell any doctor about this, they immediately believe I am merely afraid of needles, when actually, after the life I have led (countless routines at medical labs), I hardly think twice about needles -- only what the drugs in them will do.

Hi Kluesy,

Welcome to the group!

As you probably know, people with autoimmune endocrine disorders (Hashimoto's, Graves, Addisons, type I diabetes, etc...) are at greater-than-normal risk for developing more of them.  Have your doctors assumed that you have type II diabetes based on your age, or have they run the antibody tests for type I diabetes?  It's a complete MYTH that only children develop type I... and if you have it, the appropriate treatment is insulin, not medications like metformin.  If you're getting the wrong treatment that might help to explain why you had such a bad reaction.

Heather

Thank you, Kluesy, that was a worse reaction than I had with Metformin, but my other drugs were that bad.

* * *

And thank you, Ramona, it helps to hear from an insulin user, especially if you have also had Mast Cell-Activation-type drug reactions (of any variety).  They have come to terrify me.

All of my family before me used insulin, but none of them have any kind of Mast Cell / reaction disorders, so they only deal with the "usual" problems -- like 40 pounds of weight gain (for which I have absolutely no room), and other side-issues that are common.  

The weight gain is 1/3 of my dread of insulin, proper dosing without overkill being the other third.  Before becoming full-fledged diabetic, I suffered a lifetime of reactive-hypoglycemia attacks, and they're pretty scary, too.  Anything under 80 and I would go into an emergency state.

"Reactive" seems to be the operative word with me.

If you wouldn't mind, I would like to buzz you privately in the future when I make the moves to try it.

I have been diabetic for about ten years.  I had some success over a couple periods, of controlling with diet, but that always falls apart eventually; then I tried the various drugs that drove me away from them.  But I can't continue on this way.

Hi Summer and klusey ,

I am a diabetic and also a nurse . i will also be careful to say what is my experience as a diabetic and a nurse .

My experience . I was teettering on the edge of diabetes for 2 yrs with regular symptoms but not positive on a fasting test . Infection made me worse . I balanced with drinking plenty .
In may 10 , i was diagnosed with shut down adrenals , the cause is unknown for me , So I had my steriod level replaced in line with a natural production .
At this point I tested positive for diabetes . i had packed on 42 lb with high dose steriods over the previous year . With no adrenal function came poor insulin production .

I tried metformin , it is known to give stomach problems initially . I couldn't find a preperation without corn flour . I tried a liquid , but it had caramel colouring in , which is a major problem for me . It made my tounge swell and me very rough . ( lathargic suddenly , weak , sweaty , flushed )  I stopped it . There are no other diabetic tablets I can take . Its the preperation for me as they all contain maize and / or gelatine . Which between them will have me at a biggie in 2-3 days . So medical supervision is fairly irrelevant for me in this case . I do wander if this was the case with you ?

I then commenced lantus insulin . Its a once a day at night insulin which lowers overall sugar level by 2mmol ( sorry english measurements ) its a helper but is very unlikely to cause hypoglycemia .

Our concern level is 12mmol , serious concern with symptoms over 16 .

Interestingly in a reaction my sugar drops by 5 mmol in 1/2 a hour .

I have tolerated this . Its preservative is an acid but not one I can not tolerate like acetic acid or a sulphite .

I was apprehensive with a capital A . The needles are nothing to me . Ive given myself a fair few epi pens , so the checking my sugar is worse and that's only a very minor irritation . I have settled on LANTUS well . I need a mix insulin 30/70 that Ramona explained , but my GP ( primary ) wants the diabetic docs to do it . So I wait .

I have lost most of the 42lb and am very happy I have . But my sugars remain high .

My appointment is next month . Not long .

My adrenals remain non functioning . I see this as connected .( Nurse opinion )  My diabetes , will remain with me now .

I hope this helps
Josie

Hi Summerfields .

I fully appreciate everything helps . In the case of diabetes , controling sugar is about avoiding long term complications which arise from high sugar . This has been my focus in this . I love sweet things but want to avoid complications so am a good girl ( mostly )

hugs
Josie

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Absolutely, it all helps!

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I wonder if that's what happened, and if it's a sign I should avoid the fish oils. Other disorders I have, the docs push the fish oils, but I've held off so far just from intuition.

With my whopper contrast dye reaction in the 80's (a venogram), I have thought I might be reactive to iodine.  I haven't been able to touch shellfish since around that time.