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This is so hard. I am high end of pre diabetic. But zyprexa.....we go way back. It has helped me a ton. But diabetes? I would die. I would not take care of myself. I’d be a horrible diabetic. Like my brother was. He died too.

Anyone else get diabetic from a much needed AAP? Do I go off zyprexa and sacrifice a great deal of what stability I have? I saw a commercial for caplyta, maybe it’s a sign?????

When it rains it pours. 

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42 minutes ago, Wonderful.Cheese said:

This is so hard. I am high end of pre diabetic. But zyprexa.....we go way back. It has helped me a ton. But diabetes? I would die. I would not take care of myself. I’d be a horrible diabetic. Like my brother was. He died too.

Anyone else get diabetic from a much needed AAP? Do I go off zyprexa and sacrifice a great deal of what stability I have? I saw a commercial for caplyta, maybe it’s a sign?????

When it rains it pours. 

I’d be careful with caplyta - not cuz I think it’s a bad med, but because in some ways it’s very opposite zyprexa. Ex - can be somewhat activating instead of often sedating zyprexa, it cant be a PRN (as far as I know) but your PRN zyprexa seems to help ground you a lot...also it may be expensive- although I obviously don’t have intimate knowledge of your insurance plan so that may be some useless info there. Am I trying to tell you not to try a med? Of course not, I’m just saying that I’d use extreme caution trying to do a one-to-one swap. However, I understand that it can be so demoralizing to have to re-enter the med go round when so many other things have been problematic. 

I just read ur blog about working with your GP- do you think that it might help to bring up these concerns as well? Maybe she will have a perspective outside of the pdoc 

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6 hours ago, Wonderful.Cheese said:

This is so hard. I am high end of pre diabetic. But zyprexa.....we go way back. It has helped me a ton. But diabetes? I would die. I would not take care of myself. I’d be a horrible diabetic. Like my brother was. He died too.

Anyone else get diabetic from a much needed AAP? Do I go off zyprexa and sacrifice a great deal of what stability I have? I saw a commercial for caplyta, maybe it’s a sign?????

When it rains it pours. 

My wife became diabetic from Zyprexa within a matter of a few months. Her A1C was 10.0 when she was admitted to the hospital and continued to be insane even with insulin until she stopped Zyprexa.

I’m so sorry you’re going through this. I could imagine how frightening this is. 

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Cheese, that's really scary.  I can understand why you're upset.  You take Metformin too, right?  What dosage?

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Posted (edited)
17 hours ago, Angeni Mai said:

My wife became diabetic from Zyprexa within a matter of a few months. Her A1C was 10.0 when she was admitted to the hospital and continued to be insane even with insulin until she stopped Zyprexa.

I’m so sorry you’re going through this. I could imagine how frightening this is. 

Wife here. I did, indeed, develop Zyprexa-induced diabetes. Come to find out from my current psychiatrist, this is a known effect of Zyprexa. Anyways, that's a whole other story. 

I had issues wetting the bed, increased thirst, and my A1C was ridiculously high. I think Angeni is correct about the precise number. I also almost went into diabetic ketoacidosis. They nearly had to move me from the psychiatric hospital to the regular. It all happened very suddenly. I remember being okay, and then all of the sudden, the symptoms of increased thirst and loss of control of my bladder came on. Within a week, I was hospitalized. 

I think you have every right to discuss this with your doctor. Keep in mind, I am only own person and can only speak for my own experience, but for me, it got very ugly very fast. This is definitely a valid concern. All the best to you, Chee ❤️

Edited by FairyBelle
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On 8/24/2020 at 7:33 PM, Iceberg said:

I’d be careful with caplyta - not cuz I think it’s a bad med, but because in some ways it’s very opposite zyprexa. Ex - can be somewhat activating instead of often sedating zyprexa, it cant be a PRN (as far as I know) but your PRN zyprexa seems to help ground you a lot...also it may be expensive- although I obviously don’t have intimate knowledge of your insurance plan so that may be some useless info there. Am I trying to tell you not to try a med? Of course not, I’m just saying that I’d use extreme caution trying to do a one-to-one swap. However, I understand that it can be so demoralizing to have to re-enter the med go round when so many other things have been problematic. 

I just read ur blog about working with your GP- do you think that it might help to bring up these concerns as well? Maybe she will have a perspective outside of the pdoc 

Ouff. Thanks iceberg. I do need a sedating AP daily. I just don’t do well without one, unfortunately. And true, the newest AAP is most likely very expensive. It’s just a shame that zyprexa has to be like this and cause this.

On 8/25/2020 at 12:58 AM, Angeni Mai said:

My wife became diabetic from Zyprexa within a matter of a few months. Her A1C was 10.0 when she was admitted to the hospital and continued to be insane even with insulin until she stopped Zyprexa.

I’m so sorry you’re going through this. I could imagine how frightening this is. 

Thanks for the reply. I have been on the zyprexa for over a year now this go round. That’s scary what happened to your wife. I’m very sorry to hear that. 

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On 8/25/2020 at 4:36 PM, jarn said:

Cheese, that's really scary.  I can understand why you're upset.  You take Metformin too, right?  What dosage?

Thanks jarn. I am scared. I do take 2,000 mg of metformin. I can’t believe that that’s not helping enough. 

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On 8/25/2020 at 5:54 PM, mikl_pls said:

It's either time to max out the metformin, augment the metformin, or switch AAPs, I say.

Metformin IR can go up to 2550 mg/day, while the XR form can go up to 2000 mg XR + 500 mg IR per day (2500 mg).

A good augmenting agent I would say would probably be a GLP-1 agonist like Victoza or Ozempic (those are probably the best two on the market). Victoza is daily injections, Ozempic is weekly. If your plan has step therapy, you've been on metformin, so you shouldn't have any problem with getting a PA approved for either of them. GLP-1 agonists are supposed to be good for your heart and help you lose weight. Only problem is they can mess with your thyroid and cause some form of thyroid cancer I think (rarely happens). I was on Victoza from 2015/2016 until 2018, then Trulicity, then Ozempic today. I haven't lost any weight with Ozempic like I did with Victoza, but Ozempic is weekly, which I like better. I just have to remember to take it lol. If you can, I would honestly go for Ozempic because it promises more weight loss and greater A1c lowering than even Victoza.

Try to stay away from taking insulin if you can. It can make you overweight and if I'm not mistaken cause your pancreas to stop secreting insulin as much over a long time. My dad's pancreas is pretty much dead and burned out, and produces zero insulin. He has an insulin pump and is totally insulin dependent...

If they are determined to put you on an insulin, Lantus (either as the "SoloStar pens" or just from a vial with syringes) I believe causes the least weight gain. Lantus is "insulin glargine," which there is another product with that same type of insulin called "Basaglar" (available as "KwikPen," "Tempo pen," or vials). It depends on what your insurance prefers. These are "basal insulins," which act slowly, have no true peak, and last a long time. They keep your blood sugar in check throughout the day. There are other basal insulins, like Tresiba (insulin degludec), Toujeo (insuline glargine), and Levemir (insulin detemir) (which might be generic?). Many times doctors/endocrinologists will combine this with a fast-acting insulin or "bolus insulin" to take at meal times to assist with blood sugar control. These include insulins like NovoLog (insulin aspart)/Fiasp (insulin aspart) (works quicker than NovoLog), Apidra (insulin glulisine), Afrezza (insulin inhaled), insulin lispro (generic) or Admelog/Humalog, or Lyumjev (insulin lispro-aabc). They cause more weight gain, but the less you use them, the less weight you will gain. You base the bolus of bolus insulin on how many grams of carbs you are about to consume. If you go on the diabetic diet (which is a modified ketogenic diet basically), you should eliminate a lot of "bad carbs" and only include "good carbs" that are low on the glycemic index. This will keep your need for basal insulin low (if you are prescribed it at all). There are intermediate-acting and rapid- + intermediate-acting combos out there too. It all depends on your individual need.

One up-side to insulin therapy is that (if your insurance covers it) there is a medicine called Symlin (pramlintide) that is an adjunct to insulin that you take injections of before every meal. It's an "amylin mimetic" and it can help you lose weight, some people have lost lots of weight with it.

I would avoid the sulfonylureas.

  • glimepiride (Amaryl)
  • glipizide (Glucotrol)
  • glyburide (DiaBeta), etc.

and the TZD—pioglitazone (Actos)—and the many combination products that have been made. These agents have high chances of causing weight gain, especially pioglitazone. (Although besides metformin, pioglitazone is the only agent that can increase insulin sensitivity, so it's said. I believe the GLP-1 agonists can increase insulin sensitivity IIRC...)

Stay away from the SGLT-2 inhibitors... Increased chance of limb amputation, genital mycotic infection which can lead sometimes to Fournier gangrene (don't look that up on Google Image Search unless you have a strong, strong stomach...) These agents include:

  • Farxiga (dapagliflozin)
  • Invokana (canagliflozin),
  • Jardiance (empagliflozin)
  • Steglatro (ertugliflozin)
  • And several metformin combinations they've made with these, including one that includes a DPP-4 inhibitor (linagliptin (Tradjenta), the combo product called Trijardy XR).

The DPP-4 inhibitors seem benign enough... They seem to have a thing with pancreatitis, SJS, URI, and GI symptoms as common side effects. These include:

  • Januvia (sitagliptin)
  • Nesina (alogliptin)
  • Onglyza (saxagliptin)
  • Tradjenta (linagliptin)

They work quite similarly to the GLP-1 agonists, but not quite as strongly I don't think.

Summoning @notloki for diabetes treatment knowledge fact checking and any additional pointers.

 

As for other antipsychotics, I have been on Caplyta since April and I am a different human being on it (for the better). I will say what works for me may not work for you, so be careful about not taking my word as "gospel" about this med lol. As @Iceberg stated, it can be stimulating (especially at first! Good lord!!), probably because it increases glutamate release? (There will be a pharmacodynamic interaction with Lamictal and Caplyta if you chose to take it, as Lamictal decreases glutamate release and Caplyta attempts to increase it. They'd be dueling it out with each other.) It does this via "stimulating" the D1 dopamine receptor (nowhere though in any literature I've been able to find does it say it's a D1 agonist or partial agonist...). It can actually be a little sedating the first few days because of the extremely potent 5-HT2A antagonism (a serotonin receptor). This will also decrease anxiety and help you sleep better (if you're not wired from all the glutamate still). In addition, it's an SSRI with about the same binding potency to the SERT as to the D2 receptor (not sure about levels of inhibition). It supposedly is a presynaptic dopamine D2 partial agonist (which would work to decrease dopamine), whilst being a postsynaptic dopamine D2 antagonist (which is the usual antipsychotic mechanism of action, except for Abilify, Rexulti, and Vraylar, which are also postsynaptic partial agonists I believe). I read in some literature that it is a pretty potent α1 adrenergic antagonist, which it doesn't say in the PI sheet, but I can attest to this because I've had the most horrid orthostatic hypotension since starting Caplyta. There's no direct involvement with the 5-HT1A receptor... It pretty much leaves the SSRI component of the medicine to indirectly stimulate that receptor and downregulate the presynaptic receptors and stimulate the postsynaptic receptors.

Btw, if any of what I just said confused you or you don't understand it, please ask and I will gladly explain! :)  I just like getting into the technicals too much and forget to explain myself. I tried to explain myself as I went but I don't think I did a good job... 😕 

But as @Iceberg said, be careful going from a sedating AAP like Zyprexa to a potentially stimulating one like Caplyta, especially since it is an SSRI, and there is currently only one dose of the med, 42 mg, and it's indicated for schizophrenia. 

 

Another solution is perhaps if you switched to a typical antipsychotic for the time being to get you stabilized, then gradually ever so slowly cross-titrate you onto a more weight friendly AAP that you may have had good experience with in the past, maybe Abilify? And only be on one AP regularly, maybe with a PRN AP (whether typical or atypical). I really like trifluoperazine (Stelazine). It's activating/stimulating in a way in low doses (but higher doses can make you pretty sleepy), little to no weight gain (I managed to lose weight on it, but also gained a lot on it before too, it seems it can go either way depending on how you eat), not so bad about raising prolactin (at least not in my experience), but being a high-potency AP, it has no anticholinergic activity to prevent movement disorders, very little affinity for the H1 histamine receptor so it is less likely to be sedating (like I said, can be stimulating even), and has potent D2 antagonism (meaning you're more likely to get akathisia or some other EPS with it). I personally have never had akathisia with it, and I've been on up to 10 mg/day, and that's on top of my Caplyta and other antipsychotics in the past. At one point it was my sole AP, and I was on 6 mg/day with it. It is soooo relaxing! It almost makes you feel high the first few times you take it, it's so wonderful... lol. But that effect soon goes away and really I don't feel anything with it. I don't know my anxiety is gone until after it's gone. It works very silently in the background.

Another AP I like is loxapine (Loxitane). It behaves like an AAP at doses <25 mg/day, but the D2 antagonism takes over at doses higher than that and starts to act like a typical antipsychotic. One neat bit of info about this antipsychotic is that it metabolizes into the tetracyclic antidepressant amoxapine (Asendin), which is a selective NRI with 5-HT2A + D2 antagonism (like an AAP as well). Loxapine knocked out a psychotic depression I couldn't kick one summer and it never came back. IME, it was weight neutral, and from what I've read, it can go either way.

Thiothixene (Navane) is my third favorite. It's a thioxanthene rather than a phenothiazine (like Stelazine or Thorazine), butyrophenone (like Haldol, but oddly enough, Caplyta is considered a butyrophenone!), or the diphenylbutylpiperidine (Orap), and while this is different, it's still closely related to the phenothiazines. Navane felt unique... It also felt kinda stimulating in low doses (2-10 mg) but if I took it at night it helped me sleep... Just 2 mg was all I needed. It's a little more prone to weight gain I think than Stelazine. I didn't gain weight taking it as a PRN, but I've read of people gaining quite a lot of weight taking much higher doses than I took.

Thank you so much mikl! You are always so helpful. You have given me much to think over.

My dad takes glipizide my mom takes glimiperide . My brother took lantus and humolog. Those all sound very familiar. I take 2,000 mg metformin and apparently that is getting to not be enough. Scary.

I know caplyta has worked well for you. I’m very happy for you. I need something sedating. Knock you out at night kind of thing. I don’t remember the last time I was able to sleep on my own accord. That’s scary. And if I need a PRN I need something sedating too. I need that in my life for my stupid brain, unfortunately.

I don’t know what direction to take. I’m on Abilify and rexulti and zyprexa zydis. I’m scared of typicals. Am I crazy for thinking of trying clozapine but staying at a low dose and not jumping to 600 mg rapidly this go around? I don’t know what else to do? I don’t know  maybe clozapine is bad for causing diabetes too.

 

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On 8/25/2020 at 6:50 PM, FairyBelle said:

Wife here. I did, indeed, develop Zyprexa-induced diabetes. Come to find out from my current psychiatrist, this is a known effect of Zyprexa. Anyways, that's a whole other story. 

I had issues wetting the bed, increased thirst, and my A1C was ridiculously high. I think Angeni is correct about the precise number. I also almost went into diabetic ketoacidosis. They nearly had to move me from the psychiatric hospital to the regular. It all happened very suddenly. I remember being okay, and then all of the sudden, the symptoms of increased thirst and loss of control of my bladder came on. Within a week, I was hospitalized. 

I think you have every right to discuss this with your doctor. Keep in mind, I am only own person and can only speak for my own experience, but for me, it got very ugly very fast. This is definitely a valid concern. All the best to you, Chee ❤️

Hi! I’m so sorry to hear you developed diabetes. That sounds very scary. My dr is not taking my concerns about my high elevated blood glucose seriously. She didn’t even order an A1C text. Just said to cut back on carbs and limit sweets. ?!?!? Why do physical drs not take MI people’s physical illnesses seriously? This has been my experience anyway. I don’t want things to get ugly fast. I don’t even have another appointment with my GP for almost a year from now! She isn’t even monitoring my A1C or fasting glucose for a year from now! I’m very upset and worried.

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I am on zyprexa zydis, rexulti, and Abilify. Something has to be done. I don’t even see my pdoc until late September. I need a very sedating knock you out at night and keep the freak outs and anxiety and voices and death messages away kinda med.

I am desperate. I’m afraid of typicals. I need to get off zyprexa; it’s killing me. I don’t want to take Abilify either because I don’t think it’s doing anything. Rexulti is helping depression and anxiety stuff. But I need a second strong sedating AP for the psychosis and mania, etc.

I am considering clozapine at a MUCH lower dose this time. Not 600 mg rapidly like last time. Maybe 100 or 200 mg total and stay there. Am I crazy? Well, yes but.....is that idea crazy? Does clozapine just cause diabetes too?

Do I throw in the towel? Seroquel? I’d gain weight maybe again. I’d take Invega again. It works but it’s not sedating. But maybe that’s the best option? Rexulti and Invega? Or rexulti and seroquel? I give up. I’m very discouraged right now,.

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34 minutes ago, Wonderful.Cheese said:

I am on zyprexa zydis, rexulti, and Abilify. Something has to be done. I don’t even see my pdoc until late September. I need a very sedating knock you out at night and keep the freak outs and anxiety and voices and death messages away kinda med.

I am desperate. I’m afraid of typicals. I need to get off zyprexa; it’s killing me. I don’t want to take Abilify either because I don’t think it’s doing anything. Rexulti is helping depression and anxiety stuff. But I need a second strong sedating AP for the psychosis and mania, etc.

I am considering clozapine at a MUCH lower dose this time. Not 600 mg rapidly like last time. Maybe 100 or 200 mg total and stay there. Am I crazy? Well, yes but.....is that idea crazy? Does clozapine just cause diabetes too?

Do I throw in the towel? Seroquel? I’d gain weight maybe again. I’d take Invega again. It works but it’s not sedating. But maybe that’s the best option? Rexulti and Invega? Or rexulti and seroquel? I give up. I’m very discouraged right now,.

I know you said you didn't think abilify was working but my pdoc recently put me on the abilify/Clozapine combo. Studies have been done (you can google them by just typing abilify Clozapine) showing that people who benefited from Clozapine but had bad side effects like weight gain benefited from reducing their Clozapine dose and augmenting it with abilify. I just started this regiment but so far I've gone from 300mg to 225mg of Clozapine without going completely psychotic. I'm really trying to loose the weight I gained from Clozapine.

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10 hours ago, CeremonyNewOrder said:

I know you said you didn't think abilify was working but my pdoc recently put me on the abilify/Clozapine combo. Studies have been done (you can google them by just typing abilify Clozapine) showing that people who benefited from Clozapine but had bad side effects like weight gain benefited from reducing their Clozapine dose and augmenting it with abilify. I just started this regiment but so far I've gone from 300mg to 225mg of Clozapine without going completely psychotic. I'm really trying to loose the weight I gained from Clozapine.

Thanks for your reply.

Well, I’m unsure what Abilify is doing. I should have been more clear. Sorry about that. It could be working well for all I know.

I wish you luck with losing the weight from clozapine. Losing weight from psych meds is a struggle but it can be done. You got this!

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19 hours ago, Wonderful.Cheese said:

I am on zyprexa zydis, rexulti, and Abilify. Something has to be done. I don’t even see my pdoc until late September. I need a very sedating knock you out at night and keep the freak outs and anxiety and voices and death messages away kinda med.

I am desperate. I’m afraid of typicals. I need to get off zyprexa; it’s killing me. I don’t want to take Abilify either because I don’t think it’s doing anything. Rexulti is helping depression and anxiety stuff. But I need a second strong sedating AP for the psychosis and mania, etc.

I am considering clozapine at a MUCH lower dose this time. Not 600 mg rapidly like last time. Maybe 100 or 200 mg total and stay there. Am I crazy? Well, yes but.....is that idea crazy? Does clozapine just cause diabetes too?

Do I throw in the towel? Seroquel? I’d gain weight maybe again. I’d take Invega again. It works but it’s not sedating. But maybe that’s the best option? Rexulti and Invega? Or rexulti and seroquel? I give up. I’m very discouraged right now,.

I did wayyyyy better on lower dose clozaril than higher dose so I don’t think that’s crazy. Easier on my weight than zyprexa too I think. I went from quickly gaining weight on zyprexa to just not being able to lose weight on clozaril (150 mg now) however, blood levels show im a slow metabolizer of cloz so that clouds the picture a bit 

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They usually don't do it but getting a clozapine blood test can be helpful. I for instance had a high reading despite being on a low dose 

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16 hours ago, Iceberg said:

I did wayyyyy better on lower dose clozaril than higher dose so I don’t think that’s crazy. Easier on my weight than zyprexa too I think. I went from quickly gaining weight on zyprexa to just not being able to lose weight on clozaril (150 mg now) however, blood levels show im a slow metabolizer of cloz so that clouds the picture a bit 

Interesting. Thanks for sharing your experience. That helps.

I remember starting to feel better and even good on lower dose clozapine (definitely 200 mg max). But as my pdoc rapidly increased up to 600 mg I had more side effects and then I felt not as good on the clozapine. I just felt yucky, hard to explain.

But my pdoc can be med pushy. By that I mean she tends to think because of my psych history that I need max doses of many psych meds and fast at that. So she tends to overmedicate and max out doses of meds right away. I often have to tell her I don’t need increases in my meds and I’d like to save an increase and not max out a med until sh** really hits the fan.

Question. How do you find out if how you metabolize clozapine in your blood levels? I never had any kind of test like that. Just WBC tests. Is this an important test to have?

 

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15 hours ago, CeremonyNewOrder said:

They usually don't do it but getting a clozapine blood test can be helpful. I for instance had a high reading despite being on a low dose 

Interesting again. Thanks.

I never got any kind of clozapine blood test except the standard WBC test for the bad side effect it can cause. My pdoc never mentioned any test like this. I definitely feel I should have had this test.

But as I said because of my poor psych history, my pdoc feels it necessary to max out many psych meds on me and rapidly at that. Don’t get me wrong, I love my pdoc. She is wonderful. But I have learned I need to tell her when to stop at a lower med dose if I feel good effects from it. And not just trust her to max it out fast, always.

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5 hours ago, Wonderful.Cheese said:

Interesting. Thanks for sharing your experience. That helps.

I remember starting to feel better and even good on lower dose clozapine (definitely 200 mg max). But as my pdoc rapidly increased up to 600 mg I had more side effects and then I felt not as good on the clozapine. I just felt yucky, hard to explain.

But my pdoc can be med pushy. By that I mean she tends to think because of my psych history that I need max doses of many psych meds and fast at that. So she tends to overmedicate and max out doses of meds right away. I often have to tell her I don’t need increases in my meds and I’d like to save an increase and not max out a med until sh** really hits the fan.

Question. How do you find out if how you metabolize clozapine in your blood levels? I never had any kind of test like that. Just WBC tests. Is this an important test to have?

 

You can run a test that measures the clozapine and norclozapine levels in your blood, sorta like a lithium level.

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Posted (edited)

Avoid SGLT-2 inhibitors , I took Invokana and while it controlled my diabetes , lowered my BP, and I lost weight I ended up with a genital infection of the flesh eating kind. It is called  Fournier Gangrene, it is rare in general. Fast moving, most of the damage happened over one weekend. Quick action on my part getting on antibiotics stopped it. I almost lost most of my penis. The infection eat up my top layer of skin, the epidermis. I had stem cell therapy, $60,000  worth, to regrow the skin I had lost. There is no greater pain than a  serious genital infection. It was a 3 month ordeal. Only because my psychiatrist allowed me to take as much Klonopin ( some days up to 5 mg) as I wanted to' not go crazy. I cried once during the ordeal, when they took off the badges after stem cell therapy. I cried because I could see that I was almost healed up and not scared.

Edited by notloki
clean up, fix grammer

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19 hours ago, notloki said:

Avoid SGLT-2 inhibitors , I took Invokana and while it controlled my diabetes , lowered my BP, and I lost weight I ended up with a genital infection of the flesh eating kind. It is called  Fournier gangrene, it is rare in general. Fast moving. Quick action on my part getting on antibiotics stopped it. I almost lost most of my penis. I had stem cell therapy, $60,000  worth, to regrow the skin I had lost. There is no greater pain than a  serious genital infections. It was a 3 month ordeal. Only because my psychiatrist allowed me to take as much Klonopin as I wanted did I not go crazy/

Oh my goodness. I am so sorry that that happened to you. That is beyond awful. I can’t believe that is a side effect of a med. Awful. 

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