Gluten Free Guerrillas
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Apologies,it's 50mg Dapsone not 25mg

I wrote yesterday in desperate mode as I was/am worried about my husband's tiredness & coping with DH.7 kind folk on here responded but I said that hubby was on 25mg when actually it is 5omg,which kind of alters the whole thing really.He is not the same sharp thinking person that he was prior to DH & it's distressing,I have become his carer,but it was not until just now that I saw his box of Dapsone with 50mg clearly on the box,he had told me 25 & he uses a weekly pill box so I didn't know.I have Fibro Fog because of Fibromyalgia so between the 2 of us we get into a pickle to say the least.!!

9 Replies

Hi Angel, the person who never made a mistake never did anything, so don't apologise. You have every reason to be concerned so I hope your hubby gets sorted soon and I think that you've had some very good advice. So good luck.


Thankyou so much Jerry such a sweet thing to say, and heaven knows I need lots of sweet words at the moment.


I think it is unlikely vitamins will help - if you look up the side effects of Dapsone, one of them listed is unusual tiredness and it is recommended to see the doctor if this occurs.

As long as you are eating a relatively healthy diet and blood tests don't show a deficiency, you don't need vitamin supplements.

The low white blood cell count is also a potential side effect of Dapsone - it has a tendency to reduce white blood cells (you become "neutropenic"). This may leave him more open to minor infections or illness which could also have an impact on energy levels.

My advice would be to get him back to the doc, get off Dapsone to see if his tiredness improves.

Maybe raise energy levels - take holiday, eat some healthy/calorific food.


Hi Meanioni, I understand all that you say about side effects,healthy diet etc,but having lived with a man who was always so on the ball,working in highly volotile countries and life and soul itself it is absolutely horrible dealing with this tired lethargic person that is now,so I guess I was clutching at straws when I asked about vitamins.We had appointment with Dermatologist this morning & he's off Dapsone,at least he will be,he was glutened last week so is still a little itchy,so watch this space as they say! Thankyou for taking the time


I know what you mean - my wife recently had an adverse reaction to a different medicine and its horrible to see this going on - you feel so powerless.

There are alternatives to Dapsone - if this does prove to be the problem, albeit not as effective but I guess its a quality of life question.

See how it goes and if we can help, just ask!


I'll post my response here as well since I'm not sure which of these threads you're checking:

Was this done at your GP? How did you find out about the result- from a doctor? And are you absolutely certain it was your husband's total number of white blood cells that was 1.3 x10^9 and not any other 'subdivision' of the white cell count?


Thanks,I'm only just finding my way around a computer & threads are things I sew with normally, so there you go I just learned something new !! Now I know,I shall check both!!

In answer to your question,he gets his bloods done every two weeks at our local doctor's surgery the 1.3 is what my husband says comes up on the computer screen, sorry more than that I cannot say.Anyhow,after appointment with Dr today she has said that he should stop Dapsone and see how he goes. I personally did not think that you should just 'Stop' It's a wait and see what my husband decides methinks.


angel1980 - as others have said on here it's important to re-visit the Dr. I'd suggest you book a double apt and go together. Prep questions/ concerns/ symptoms in advance - write them down and take them with you. With two of you visiting the Dr at least one of you should remember any questions you might forget if one of you went. Often drugs can cause unwanted side effects. There is normally always a good alternative or good advice the Dr can provide so book an apt asap instead of worrying. At least then you'll have some extra information and a way forward. Feel free to post an update once you know more.


Thanks Fiona and I take on board all that you have said.We actually do go to Dr's together & write stuff down etc,& I am not one who is afraid to ask things,having dealt with Fibromyalgia for 23yrs now & many not so good docs I know it is the only way to go. Thanks once again & as you can see we are now on our next stage of dealing with DH,no Dapsone,quite scary so many what if's!


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