Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

to not care about side effects?

24 replies

dogmum666 · 02/03/2018 01:02

I have an awful rash associated with coeliac disease. There is a drug called dapsone that can help the itchiness. This, however, is not without some negative side effects. AIBU to just want the drug rather than have my GP hold off?

OP posts:
frasier · 02/03/2018 01:06

What are the side effects?
Do you take any other medication already? (Don't answer if TMI but wondering if there was anything contraindicated that would also mean GP is holding off.)

lizadiet · 02/03/2018 01:06

Why not have a new diet for coeliac and then avoid medication
Medication try not to have unless you really need it

dogmum666 · 02/03/2018 01:10

That would be great, but I've been on a strict diet for 10 years. Just walking through the supermarket could trigger this rash. I am not on other meds. It can cause dizziness and stomach pain and sometimes liver problems.

OP posts:
Thursdaydreaming · 02/03/2018 01:10

YANBU. Are the side effects permanent? If not, you should be able to try the drug and if the side effects are to much, then stop.

Yes you might suffer side effects but you are also suffering now.

lizadiet · 02/03/2018 01:17

Has your GP done full blood count test ?
What other tests have they done ?

TheButterflyOfTheStorms · 02/03/2018 01:32

Liver problems? You really don't want that. How common are the side effects?

VimFuego101 · 02/03/2018 01:42

Assuming the google info is correct, YANBU to want to try it. It seems like the side effects are rare but that you should be closely monitored whilst trying it out. Are you on any other drugs that would interact with it?

to not care about side effects?
to not care about side effects?
MyLawnMowerMan · 02/03/2018 02:33

Dermatitis herpetiformis can be unbelievably irritating can't it Dogmum? It used to drive me insane.

With regard to dapsone, I have used this with really good results but I had to stop totally as it caused my pernicious anaemia to worsen and that caused worse symptoms. If you have b12/pernicious anaemia, iron deficiency anaemia or low ferritin ask your pharmacist for advise as they are often more aware of potential issues than a GP who rarely prescribes it. I really hope you find something to soothe it soon. Have you tried putting it in very cold water or ice? That brought me some short lived relief.

@lizadiet even those (like me) who stick rigidly to a gluten free diet for coeliac disease can get cross contaminated from most unlikely sources. A product made in the same factory as gluten containing ingredients does not legally have to display a potential allergy warning even though there is the potential for cross contamination. Most coeliacs won't have any reaction from the minute trace in such products, but others can have awful symptoms. It isn't as easy as it sounds to remain 100% gluten free.
I now only eat naturally gluten free fresh foods and never eat out because of severe consequences cross contamination.

dogmum666 · 02/03/2018 02:40

LawnMowe Thank you so much! My blood work is normal as of now so I might suggest going on it with monitoring.

OP posts:
MyLawnMowerMan · 02/03/2018 03:07

Hope your GP will let you try it. Please let me know how you get on?

lizadiet · 02/03/2018 08:27

The medication might have given you low blood pressure I'm thinking its possible

RumerGodden · 02/03/2018 09:14

Most of the standard half dozen or so antidepressants prescribed for depression or anxiety can cause liver damage, and plenty of people take those without thinking twice...

Schroedingerscatagain · 02/03/2018 09:30

Hi op

I’m with the other dh sufferers, you’re obviously getting some minute contamination going on or reacting to another protein beside the obvious ones

Even though I stick rigidly to the diet I get break through dh in my usual areas from time to time

I can usually link it back to a gf food or drink or even skin care product that has that protein in it. I’ve had to buy gf shampoo etc, lipstick to stop the reactions occurring

Are you perhaps reacting to corn protein? Oats?

Even if they are gf if you’re one of the five percent who react like me you’ll still get dh occurring and whilst dh is occurring then so is gut damage

Before starting dapsone I would try a further elimination diet removing ALL grains and reintroduce the ones that are deemed safe as they may well be at the root of your problem

At the end of the day dapsone is only sticking plaster medicine, find the cause and deal with it no point treating the end result

MyLawnMowerMan · 02/03/2018 10:17

@lizadiet. It didn't cause low blood pressure, it caused dangerous haematological problems because I already had severe anaemias and low ferritin. The rash covering my hands was bleeding and weeping for weeks and became infected, all from cross contamination of gluten from an unknown source. Sometimes medications are needed, despite potential side effects.

I realise you are trying to help, but not everything is simply explained by the calorie/burn diet you generally recommend; I was a bit concerned about your advice. I've had a look at your other posts (was wondering if you had CD or DH) and see that all your posts are diet advice, many mentioning your clients.

You suggested on this post that the OP could try 'a new diet' instead of medication but from your comments I'm thinking you assumed the OP had a general rash and/or you have no experience with CD or DH so not sure what sort of new diet you were even thinking of? DH isn't a choice of 'new diet to avoid medication' and your simplistic advice could be confusing for a newly diagnosed person.

Also liza, often the calorie controlled diet that all your clients always lose weight on doesn't always follow with people with DH/CD because, after possibly years of (vastly varying degrees) of malabsorption leading to malnutrition, the weight gain can be significant because the body is readjusting.

Almost all users of dapsone have haematological side effects, such a losing 1-2g of haemoglobin. If you already have anaemia these side effects can be significantly increased, as in my case... Not low blood pressure.

Sorry for the long post Liza, I understand you were trying to be helpful but wanted to explain a few important things about 2 conditions that are often misunderstood so you can learn more before giving a potential client of yours wrong advice in the future. I hope you understand my reasoning.

MyLawnMowerMan · 02/03/2018 10:35

@Schroedingerscatagain totally agree with your sticking plaster analogy! Good suggestion about elimination diet, hadn't thought to mention despite me going back to basics.

I had to see haematologist prior to starting dapsone due anaemias (Coeliac related). My hands were in such a state, infected, weeping and bleeding, that they had to be treated unfortunately.

I hadn't realised it was 5% still react despite GF diet. I thought I was reacting as I have refractory coeliac disease, so interesting info there, thank you. Have you got refractory CD @Schroedingerscatagain?

I found out eventually that some of my symptoms/flare ups were caused by cross contamination from food produced in a factory handling gluten, not in the same line/belt. As it wasn't a may contain there was no reason for me to not eat it. The company was excellent, when I asked them they had the products independently tested confirming a miniscule trace of gluten. Hence, I no longer eat processed foods.. and the company now put may contains on everything processed in the same rooms handling gluten.

OP, let us know how you get on? And so sorry I, sort of hijacked your thread.

Clandestino · 02/03/2018 10:43

You have to be your own judge. I took steroids once and I almost died. Had to go cold turkey after my brain swelled and I started vomiting blood (among other things). I can't take Amitriptyline or any similar medication for my fibromyalgia either because the side effects prevail over the benefits.
If you feel like you can juggle the side effects of the drug, go for it. I wish I could cope better, even for a short-term.

lizadiet · 02/03/2018 12:44

Calorie diet is only for people with no health or medical issues

I do diets for people with cancer and long term / serious illnesses

Also diets for coeliac and allergy etc

More medication is more side effects then dr gives you medication for those side effects it's not good

Porriage oats contains gluten so obvious have gluten free

I am also a nutritionist and a health advisor
You are welcome to check me out if you are not sure about my history or my work and experience

lizadiet · 02/03/2018 12:50

Sorry just to add
Yes medication is sometimes needed

a new diet is tailored for that particular person and takes in account everything

Skiiltan · 02/03/2018 13:25

I think you're understating the side-effects. The most common side-effect is haemolytic anaemia (which occurs in about 20% of patients), and this is serious enough. However, dapsone can also cause other blood disorders, bone-marrow suppression and - rarely - horrific and potentially lethal skin conditions.

The side-effects are uncommon at the doses used to treat leprosy, but treatment of dermatitis herpetiformis (the condition you have) often involves higher doses. Patients have to be monitored closely for signs of these effects, and I guess this might cause some GPs to be reluctant to commence treatment. However, some GPs will just be cautious in balancing the infrequency of the side-effects against their severity. Bear in mind that your GP might have seen someone suffering the severe side-effects and been traumatized by the experience. Most GPs won't have seen them (because they're rare) and might therefore be less cautious.

MyLawnMowerMan · 03/03/2018 04:50

@lizadiet,no I didn't mean to upset of offend, just that your messages were so brief they didn't give any indication of you background. I have life changing conditions, consequences from being an undiagnosed coeliac for at least 20 years, so I always go into worry mode if something isn't clear or someone may misunderstand or misinterpret a message. Just the thought of someone else ending up like me makes me speak out. Certainly don't need to check you out, hope you understand why I commented.

Keilninnock · 03/03/2018 05:37

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Mummyoflittledragon · 03/03/2018 05:49

Kilninnock
People are trying to help. Perhaps that help is not what is required. But why insult them?

lizadiet · 03/03/2018 10:55

Thank you

Bambamber · 03/03/2018 11:15

I have a different Illness and my option was a different drug so you may wish to discard this but I thought I would share my experience.

I was desparate to try a medication, I knew it had a long list of potentially very serious side effects, but I was so miserable with my symptoms I honestly didn't know how much longer I could carry on. My GP agreed to let me try with monitoring, at first everything was fine. But with time I started to suffer lots of side effects, I was given other medication to counteract the side effects. This led to more side effects, and in the end I started suffering from seizures. So I had to stop all my medication, but had to be weaned off which took about 6 weeks. Luckily enough the seizures have stopped, but I have what appear to be long lasting damage (nothing life changing or dangerous, but impacts my life daily).

I'm obviously not saying this will happen to you, and fortunately my experience is in the minority. But if your GP is hesitant it will be for a reason, is there any other options you can explore? At the end of the day you have to weigh up the benefits against the risks, and in my opinion medication is always a risk, but sometimes it really is needed

New posts on this thread. Refresh page