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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Do I need a second opinion on this? Medication related

24 replies

BodyKeepingScore · 30/04/2023 19:16

Hi, posting here for traffic. I’ve been on Lamictal (lamotrigine) for a few weeks now, with dose titrating up. Currently on 350mg.
Yesterday I came out in a number of hives (first pics) - this progressed significantly this morning (rest of pics). I was told by consultant when beginning treatment to keep a close eye for a rash as Stevens-Johnson syndrome is a rare hit serious side effect of the medication, hence slowly titrating the dose upwards. Following g advice from out of hours doctor, I went to A&E today. The doctor I saw looked at the part of the rash on my neck, didn’t give me an opportunity to show him how significantly it had spread over my body and essentially fobbed me off with “you maybe used a new washing powder” - I didn’t.
I’ve been sent home with prednisolone- something that I’d previously been advised I shouldn’t take with a diagnosis of bipolar disorder. I’ve recently been discharged from an 8 week inpatient stay where I was sectioned, so my mental health has been particularly unstable.
So I guess I kind of have two questions - would you seek a second opinion on the rash (which is still there and spreading) and would it be reasonable to ring my consultant tomorrow to ask whether it’s safe to continue taking the prednisolone?

OP posts:
BodyKeepingScore · 30/04/2023 19:18

Sorry - another pic of leg didn’t attach!

Do I need a second opinion on this? Medication related
OP posts:
CiaoBellisima · 30/04/2023 19:19

Tomorrow is a Bank Holiday if you’re in the UK. Ring 111 or find your nearest pharmacist.

mynameiscalypso · 30/04/2023 19:20

I would definitely seek a second opinion. I don't have bipolar but have various other mental health diagnoses and while I am taking pred at the moment, my psychiatrist is monitoring me more closely because it's not ideal.

SwitchDiver · 30/04/2023 19:20

I’d stop the Lamictal, take the prednisone just today and tomorrow and ring your consultant on Tuesday.

BodyKeepingScore · 30/04/2023 19:24

CiaoBellisima · 30/04/2023 19:19

Tomorrow is a Bank Holiday if you’re in the UK. Ring 111 or find your nearest pharmacist.

Unfortunately we don’t have 111 here - we have out of hours GP (Dal doc) who sent me straight to A&E without seeing me in person.
Im aware my anxiety level might just be a bit heightened with the lamotrigine and associated risks but I’ve never had a rash like this in my life, nor any kind of significant allergic reaction.
Freaking out that he didn’t see how much of me is covered in it. I’m guessing I just have to assume he knew what he was doing and it’s nothing to be concerned about -easier said than done!

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BodyKeepingScore · 30/04/2023 19:25

mynameiscalypso · 30/04/2023 19:20

I would definitely seek a second opinion. I don't have bipolar but have various other mental health diagnoses and while I am taking pred at the moment, my psychiatrist is monitoring me more closely because it's not ideal.

This is what I’d always been advised too - that prednisolone would present a significant risk in someone with mood disorders, especially given how unwell I’d been recently.
Have you noticed any side effects from taking it?

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BodyKeepingScore · 30/04/2023 19:26

SwitchDiver · 30/04/2023 19:20

I’d stop the Lamictal, take the prednisone just today and tomorrow and ring your consultant on Tuesday.

I asked about just stopping the Lamictal until I’d spoken to consultant and the doctor at a&e told me not to, that it needs to be titrated down as slowly as the dose was increased. To be honest I’d rather chance stopping it than worrying I’m going to die of sepsis or something…

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mynameiscalypso · 30/04/2023 19:29

@BodyKeepingScore Not hugely but I've been on a low dose (5mg) for about 6 months. It's tough to know though, I'm on it because of a flare up of a physical health condition and, on balance, the benefit in terms of my pain and fatigue is worth the impact on my mood, if there is one. I've had quite a few bad patches in those 6 months but my psychiatrist has also been playing around with my ADs a lot so that could also be the reason. I'm relatively settled at the moment though.

BodyKeepingScore · 30/04/2023 19:31

mynameiscalypso · 30/04/2023 19:29

@BodyKeepingScore Not hugely but I've been on a low dose (5mg) for about 6 months. It's tough to know though, I'm on it because of a flare up of a physical health condition and, on balance, the benefit in terms of my pain and fatigue is worth the impact on my mood, if there is one. I've had quite a few bad patches in those 6 months but my psychiatrist has also been playing around with my ADs a lot so that could also be the reason. I'm relatively settled at the moment though.

I’m on 40mg prednisolone a day for the next 10 days.
Im glad to hear things are fairly settled for you at the moment. I’m coming out of a period of lots of medication changes and I can empathise with how hard it is - lots of wobbles along the way!

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romdowa · 30/04/2023 19:34

Are you in Ireland? If so then I'd just present to another ane if you can and insist on seeing the on call psyc reg. Be quite insistent that the only new thing that you could be reacting to is this medication. That there has been no other changes and that the rash is still spreading

SwitchDiver · 30/04/2023 19:35

BodyKeepingScore · 30/04/2023 19:26

I asked about just stopping the Lamictal until I’d spoken to consultant and the doctor at a&e told me not to, that it needs to be titrated down as slowly as the dose was increased. To be honest I’d rather chance stopping it than worrying I’m going to die of sepsis or something…

The patient leaflet says
“In many cases, these symptoms will be signs of less serious side effects but you must be aware that they are potentially life-threatening and can develop into more serious problems, such as organ failure, if they are not treated. If you notice any of these symptoms: Contact a doctor immediately. Your doctor may decide to carry out tests on your liver, kidneys or blood and may tell you to stop taking Lamictal.”
https://www.medicines.org.uk/emc/files/pil.8052.pdf

Can you go back to A&E possibly a different one? Because I think you were fobbed off and dismissed due to ableism for having a mental health condition. I have faced that too.

https://www.medicines.org.uk/emc/files/pil.8052.pdf

BodyKeepingScore · 30/04/2023 19:41

SwitchDiver · 30/04/2023 19:35

The patient leaflet says
“In many cases, these symptoms will be signs of less serious side effects but you must be aware that they are potentially life-threatening and can develop into more serious problems, such as organ failure, if they are not treated. If you notice any of these symptoms: Contact a doctor immediately. Your doctor may decide to carry out tests on your liver, kidneys or blood and may tell you to stop taking Lamictal.”
https://www.medicines.org.uk/emc/files/pil.8052.pdf

Can you go back to A&E possibly a different one? Because I think you were fobbed off and dismissed due to ableism for having a mental health condition. I have faced that too.

You’ve hit the nail on the head - the minute I told them what I was taking the Lamictal for it was as if everything else I said after that was being second guessed or dismissed :/
I think you’re all right - presenting to another a&e is the only way I can put my mind at rest. If the steroid and antihistamine had made even a slight difference I might be less concerned, but the rash has spread rather than lessened.

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Reasonableadjustments · 30/04/2023 19:50

If it's daldoc I'm guessing I know roughly the area you're in.

I'd go to one of the main A&E's in one of the two big cities if you can (worried in case I'm wrong!)

BodyKeepingScore · 30/04/2023 19:54

Reasonableadjustments · 30/04/2023 19:50

If it's daldoc I'm guessing I know roughly the area you're in.

I'd go to one of the main A&E's in one of the two big cities if you can (worried in case I'm wrong!)

You’ve probably guessed right re the area. I did present to the big a&e closest to me, although in hindsight that probably wasn’t the best idea given that they turned my DS (who was 8 at the time) away three times and told me to give him calpol until we took him again and insisted on bloods being taken - as soon as the results came back he was blue lighted up to the children’s hospital in Belfast where he had to undergo three surgeries for septic arthritis and was in hospital for almost two months 🤬

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DurhamDales · 30/04/2023 20:28

You must go back for a second opinion.

BodyKeepingScore · 30/04/2023 20:34

@DurhamDales thank you! I couldn’t see how it would be medically advisable to slowly reduce the dose in the case of a serious reaction. Completely threw me when that was what the doctor said, although I don’t lend much weight to his assessment in general…

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Inkblue · 30/04/2023 20:35

I would definitely seek a second opinion.

Lougle · 30/04/2023 20:37

That looks like the rash DD1 developed when she took ethosuxamide (a different epilepsy drug). The GP decided she'd been rolling in grass. I took her to A&E and her paediatrician took it very seriously.

BodyKeepingScore · 30/04/2023 20:39

@Lougle do you mind me asking how they treated your DD to get rid of the rash?

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Lougle · 30/04/2023 20:49

They just discontinued the medicine and I gave her piriton. But I wouldn't recommend discontinuing unless you are told to by a doctor.

Biscuitmonster2318 · 01/05/2023 02:43

I have a serious reaction to Prednisone and if you have a diagnosis I would recommend you holding off the steroids. I have no mental health problems but after taking the prednisone for a few days I became very unwell and started planning how to take my own life and it felt the most natural thing to do. The idea of it at the time in my mind was off the scale and scary. I ended up taking myself to A&E and begging them for help as I was scared of what I would do to myself and not realise the consequences.
They said at the time some people can actually have Psychosis as a serious side effect.
Ive never touched them since.

My daughter had a reaction like yours to the Lamotrigine. The neurologist had told us when we started that she could develop allergies.
I used to give her Priton? That helped loads until we got Neurological appointment

JaimeBronde · 01/05/2023 03:07

@BodyKeepingScore this is exactly how I started (the red patches that started to go brown) with my allergic reaction to Lamotrigine when taking it for Bipolar (got the reaction after taking it for a month)
I also felt like I'd come down with the flu.
DH took me to A&E (England) & they stopped the Lamotrigine straight away & put me on steroids (can't remember which as was over 10 yrs ago) to stop me getting worse as it was the start of Stevens-Johnson syndrome.
Was completely better in a few days.

About 2 yrs later after not getting on with other mood stabilisers/neuroleptics I did a shedload of research showed my CPN & persuaded my Consultant to let me try Lamotrigine again but titrating the dose very slowly each month.
I restarted on 25mg & went up 5mg every 2/3 weeks until I reached 100mg then went up by 25mg every 4-6 weeks until I got to 200mg which is what I take now.

I was extremely lucky with the Consultant I got as he trusted me in my knowledge of different medications as I do lots of research & also ask my close family member who is a Pharmacist for advice too.

SwitchDiver · 01/05/2023 20:45

Did you get a second opinion? Hope you are feeling better x

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