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Old Aug 27, 2022 at 03:13 PM
  #1
 
I'm on Invega Sustenna. Every time I get the injection I get an itchy, red rash over a solid quarter to a third of my body. It doesn't even help all that much (but it does help some, I mean other than a four hour ER visit for a "sleep disorder" as they diagnosed it which was really just mania+meth, I've been staying out of the hospital since they put me on the max dose). Pdoc said to just take Benadryl when I get the injection, which I did on Wednesday, but last night (Friday night) the rash started to pop up on my chest and now it's all over my chest, shoulders, and neck so I took more Benadryl and I'll probably fall asleep by the time anybody responds to this.
Also I haven't had my period since June (around the time they put me on the injection). Idk if that's from getting Kyleena around that time or another side effect (my OBGYN said I would likely menstruate monthly with Kyleena, but I've read some women's periods stop altogether).

Thoughts?

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Old Aug 27, 2022 at 03:58 PM
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Hi MuddyBoots. I would likely be pretty upset about such a rash, too. It seems like a big price to pay if the med is only working partially. As for the lack of period, I can't help but wonder if that's not hyperprolactinemia (elevated prolactin level). The "not getting a period" wasn't a big deal to me when I took Invega (pill form, in my case), but breasts leaking milk sure was part of it. I ended up having to put panty liners in my bra. And again, that wasn't even the main reason I went off. I'm pretty tolerant, for the most part.

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Old Aug 27, 2022 at 07:29 PM
  #3
 
NO. A rash indicates that your body is having an allergic reaction, and that the source of the allergy needs to stop. That kind of rash has the potential to become severe enough to cause your throat to swell so you cannot breathe.

As for having no periods, I am opposed to the forms of birth control that cause women not to menstruate. We have periods for a very good reason - to shed the uterine lining, as it needs to be shed, on a regular basis. I firmly believe that the women who are using those methods of birth control will have serious issues with such things as endometriosis and fibroids at mid-life, and problems with a thickened uterine lining - and even a tendency toward uterine cancer. Nature does what it does for a reason.

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Old Aug 27, 2022 at 08:34 PM
  #4
 
I am with Beth in that a rash over, my gosh, 1/4-1/3 of your body !!! means a flat out NO. The source of this terrible allergy needs to stop.

In terms of the periods, I am of the opposite opinion to Beth's IFF the source is Kyleena and I do not know if Kyleena can make periods stop. I am on Mirena, which is bigger than Kyleena, and Mirena is known to make periods stop in 20% of women and mine stopped: have been on Mirena since 2004 (several IUDs have been swapped since the first was inserted in 2004), have never had any gynecological problem, am 51 now. Note that I had not had any gyno problems before Mirena, so it is not that I was prescribed Mirena to treat them–I simply got it for contraception. Many women get prescribed it for gyno problems and it actually is associated with a decreased risk of endometrial cancer and a decreased risk of a few other baddies. Hormonal IUD (Mirena) - Mayo Clinic. In your case, since hyperprolactinemia from Invega and possibly the IUD both can contribute, the only way to figure out what contributes to no periods is to stop the Invega and try another AP, which would have the benefit of removing the source of the allergic reaction.

In general, I think that Invega is justified when other APs do not work, but one should try other APs to exhaust the options.
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Old Aug 27, 2022 at 09:18 PM
  #5
 
I also had the Mirena IUD several times over many years and never had a period . This last one was removed back at the begining of March and a couple days after that I had the heaviest period of my life. I'm on progesterone pills to stop heavy bleeding now but I'm thinking of going off to see if I'll have another period as I haven't had any bleeding at all since starting the pills.

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Old Aug 27, 2022 at 10:16 PM
  #6
 
I would not continue something causing that reaction. It could get worse really fast and be a medical emergency. At best you need an epi-pen if you continue.

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Old Aug 27, 2022 at 10:19 PM
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I wouldn't worry about not getting a period, but the rash is a very big deal. I definitely think it's worth looking for another AP.
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Old Aug 28, 2022 at 12:01 AM
  #8
 
I would question a pdoc that wanted me to stay on that medication. Can you switch pdocs?

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Old Aug 28, 2022 at 02:25 AM
  #9
 
Quote:
Originally Posted by Tart Cherry Jam View Post
I am with Beth in that a rash over, my gosh, 1/4-1/3 of your body !!! means a flat out NO. The source of this terrible allergy needs to stop.

In terms of the periods, I am of the opposite opinion to Beth's IFF the source is Kyleena and I do not know if Kyleena can make periods stop. I am on Mirena, which is bigger than Kyleena, and Mirena is known to make periods stop in 20% of women and mine stopped: have been on Mirena since 2004 (several IUDs have been swapped since the first was inserted in 2004), have never had any gynecological problem, am 51 now. Note that I had not had any gyno problems before Mirena, so it is not that I was prescribed Mirena to treat them–I simply got it for contraception. Many women get prescribed it for gyno problems and it actually is associated with a decreased risk of endometrial cancer and a decreased risk of a few other baddies. Hormonal IUD (Mirena) - Mayo Clinic. In your case, since hyperprolactinemia from Invega and possibly the IUD both can contribute, the only way to figure out what contributes to no periods is to stop the Invega and try another AP, which would have the benefit of removing the source of the allergic reaction.

In general, I think that Invega is justified when other APs do not work, but one should try other APs to exhaust the options.

But periods are not just about fertility. Not having normal periods for up to 7 years? That's asking for trouble, and I believe that sooner or later the medical field will say Whoops. These methods simply have not been around long enough to follow women from teen years through menopause and on into post-menopause. And to tell women that they will be normally fertile after not having had periods for such a long time...I call BS. And again, yet again, contraception is about the woman's body. And about pharmaceutical companies making big $$$$$ off of contraception for women. When will the time come for men to put their bodies into it?

I apologize for hijacking this important thread. I have very strong beliefs about causing women not to have periods. It has disturbed me when psych meds used to alter my periods (I am post-menopausal at this point).

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Old Aug 28, 2022 at 02:29 AM
  #10
 
Quote:
Originally Posted by Moose72 View Post
I also had the Mirena IUD several times over many years and never had a period . This last one was removed back at the begining of March and a couple days after that I had the heaviest period of my life....

The heavy bleeding was most likely because your uterine lining had become thickened from not shedding every month.

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Old Aug 28, 2022 at 09:09 AM
  #11
 
Quote:
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NO. A rash indicates that your body is having an allergic reaction, and that the source of the allergy needs to stop. That kind of rash has the potential to become severe enough to cause your throat to swell so you cannot breathe.

As for having no periods, I am opposed to the forms of birth control that cause women not to menstruate. We have periods for a very good reason - to shed the uterine lining, as it needs to be shed, on a regular basis. I firmly believe that the women who are using those methods of birth control will have serious issues with such things as endometriosis and fibroids at mid-life, and problems with a thickened uterine lining - and even a tendency toward uterine cancer. Nature does what it does for a reason.

I agree about the allergic reaction. Your body is telling you to stop.

Beth is regards to the menstruation and that kind of birth control - I have the Mirena and it actually thins out the lining of the uterus. I needed it medically because I was needing blood transfusions because my periods were too heavy and this is what they told me. I don’t know about the kyleena but maybe it’s the same?
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Old Aug 28, 2022 at 09:12 AM
  #12
 
Actually, from what I have read, having a period every month isn't good for a woman. In the past, women were either pregnant or breastfeeding most of the time, so they didn't have many periods. I've had one every month for 25 years, hundreds. And that was not at all common in the past.

I haven't been on birth control because I don't have sex with men and don't have gynecological issues. But I think a lot of women need help for heavy bleeding.
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Old Aug 28, 2022 at 09:38 AM
  #13
 
I'm more so thinking it's the Invega that stopped my period because I did have hyperprolactemia on both Risperdal and Haldol so I'm clearly predisposed. I was on Risperdal and then switched to Haldol and between the two I didn't have my period for a year, then I got the IUD, had some spotting, and then I went on Invega and it stopped. Invega is basically a $3200 version of Risperdal.

I'm going to really push for stopping the Invega and if new pdoc doesn't listen I'll just not show up for the injection, have another severe psychosis, wind up IEA'd again, explain that I stopped the Invega because I'm allergic and I was manic half the time I was on it anyway.

The question for myself and my doc is, what antipsychotic do I try/go back on next?

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Old Aug 28, 2022 at 09:41 AM
  #14
 
Quote:
Originally Posted by MuddyBoots View Post
I'm more so thinking it's the Invega that stopped my period because I did have hyperprolactemia on both Risperdal and Haldol so I'm clearly predisposed. I was on Risperdal and then switched to Haldol and between the two I didn't have my period for a year, then I got the IUD, had some spotting, and then I went on Invega and it stopped. Invega is basically a $3200 version of Risperdal.

I'm going to really push for stopping the Invega and if new pdoc doesn't listen I'll just not show up for the injection, have another severe psychosis, wind up IEA'd again, explain that I stopped the Invega because I'm allergic and I was manic half the time I was on it anyway.

The question for myself and my doc is, what antipsychotic do I try/go back on next?
I believe the APs also stopped my aunt's periods, so it is a common thing.

Have you ever tried Abilify?
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Old Aug 28, 2022 at 09:47 AM
  #15
 
Yeah, but I was only on 2 or 5mg before I quit. That was ten years ago when I was still in denial and kept quitting meds for no reason other than didn't think I need them, and I forget if Abilify had any side effects/ did anything. So I might as well say "no."

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Old Aug 28, 2022 at 12:58 PM
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Quote:
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Actually, from what I have read, having a period every month isn't good for a woman. In the past, women were either pregnant or breastfeeding most of the time, so they didn't have many periods. I've had one every month for 25 years, hundreds. And that was not at all common in the past.

I haven't been on birth control because I don't have sex with men and don't have gynecological issues. But I think a lot of women need help for heavy bleeding.

Yes, but pregnancy and breastfeeding are natural functions.

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Old Aug 28, 2022 at 01:01 PM
  #17
 
Quote:
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I'm more so thinking it's the Invega that stopped my period because I did have hyperprolactemia on both Risperdal and Haldol so I'm clearly predisposed. I was on Risperdal and then switched to Haldol and between the two I didn't have my period for a year, then I got the IUD, had some spotting, and then I went on Invega and it stopped. Invega is basically a $3200 version of Risperdal.

I'm going to really push for stopping the Invega and if new pdoc doesn't listen I'll just not show up for the injection, have another severe psychosis, wind up IEA'd again, explain that I stopped the Invega because I'm allergic and I was manic half the time I was on it anyway.

The question for myself and my doc is, what antipsychotic do I try/go back on next?

I had lactation on Risperdal and my pdoc stopped it right away. You've tried the other atypical AP's, Boots?

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Old Aug 28, 2022 at 01:24 PM
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I would not continue something causing that reaction. It could get worse really fast and be a medical emergency. At best you need an epi-pen if you continue.
Yes to epi-pen! You would need education on how to use it, I imagine.

I now recall that I had a local reaction to Tegretol, a rash on my neck. I went to ER since Tegretol CAN cause lethal rashes. They gave me various antihistaimines that did NOT stop the rash. I went off of Tegretol promptly.
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Old Aug 28, 2022 at 01:29 PM
  #19
 
Quote:
Originally Posted by MuddyBoots View Post
I'm more so thinking it's the Invega that stopped my period because I did have hyperprolactemia on both Risperdal and Haldol so I'm clearly predisposed. I was on Risperdal and then switched to Haldol and between the two I didn't have my period for a year, then I got the IUD, had some spotting, and then I went on Invega and it stopped. Invega is basically a $3200 version of Risperdal.

I'm going to really push for stopping the Invega and if new pdoc doesn't listen I'll just not show up for the injection, have another severe psychosis, wind up IEA'd again, explain that I stopped the Invega because I'm allergic and I was manic half the time I was on it anyway.

The question for myself and my doc is, what antipsychotic do I try/go back on next?
Yes, Invega is Risperdal's cousin. What I would do it report an allergic reaction to Invega to your current healthcare provide so it becomes plastered across your medical record, everywhere, that you are allergic to Invega. This way if you get to an ER and are acute, they will avoid giving you Invega.

In terms of next APs to try, I would choose between Geodon and Abilify.
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Old Aug 28, 2022 at 01:34 PM
  #20
 
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I had lactation on Risperdal and my pdoc stopped it right away. You've tried the other atypical AP's, Boots?
A lot of them, yeah. Right now I'm thinking Abilify or Vraylar. I never gave Abilify a chance and when I tried Vraylar I was on 4 APs total so I don't really know what it did.

Zyprexa, Clozaril, Risperdal, Haldol, Thorazine, and Seroquel have unbearable side effects (but other than Risperdal they worked). Geodon and Latuda didn't work. Haven't tried Rexulti, Fanapt, Caplyta, or Saphris.

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