Dapsone is better than Prednisone because?
Today I got a fax from our paed.
It was a plan, some pathology results and a script.
That’s right, my friends, you can doctor a patient via fax now.
Don’t get me started.
Yes, I am disgusted.
Anyhoo, the plan; was to wean Ivy off Prednisone because she is at risk of diabetes and brittle bones and a plethora of other nasties the longer she stays on the pred. Our alternative is a drug called Dapsone.
Never heard of it?
That’s because it is not widely used these days. It is mostly prescribed for Leprosy (We don’t call it that anymore, we call it Hansen’s disease because that just sounds so much better).
Dapsone can also be used for other skin diseases, one of which is pemphigus.
The paed has sent a general information sheet about Dapsone, which tells me very little about what my baby girl is about to ingest. It doesn’t matter though because I have researched it and have all that I need to know that this is one scary drug.
Lets throw around a few terms I have learnt about today, shall we?
Yes, let’s.
Agranulocytosis. This means a deacrease in granulocytes or leucocytes or in layman’s terms, it reduces the number of cells that can fight infection. Great for someone who is immune deficient, wouldn’t you say?
How about, aplastic anaemia, which is the decrease of red and white blood cells in the bone marrow or dyscrasias - the abnormal mix of blood lymph and bile in the body?
They sound like crackin’ side effects, don’t you think?
Then there is hemolysis which is the disruption of the red cell membrane, causing release of haemoglobin. This means that the red blood cell essentially explodes and cannot carry iron anymore and it has a great sidekick: methemoglobin, which means the haemoglobin can no longer carry oxygen.
It sounds good.
A real easy sell.
Add to that the risk of liver disorders, nausea, vomiting, abdominal pains, pancreatitis, vertigo, blurred vision, tinnitus, insomnia, fever, headache, psychosis (now that’s an extra special one) and a whole lot of other exciting things, including carcinoma and I am really starting to see that this is a wonderful medication for Ivy.
Not.
So, what the paed is saying, is that this medication is the better choice over Prednisone and all I am wondering is how he can say that?
Just one last thing, if you are a ‘learning doctor’ out there, or even if you are an ‘already doctor’; If you say you are going to be in contact on a certain day, be in contact.
Don’t send through a fax and think that will be adequate. Because it won’t be. Especially if the patient involved is little and is about to take Dapsone and has any parent worth their salt. It will just make them angry.
Very angry.
Oh my Tiff. This is not good, not good. What a complete jerk! I can’t believe it. Have you spoken with him?
What about the doc in Sydney, the blister guru, was Dapsone her recommendation as well?
mad, mad, mad, mad!!!
Oh, that sucks! On the plus side at least you didn’t have to pay for a consultation but the LEAST you should have got was a phone call. I’m sure you’ve got loads of questions for him about those side effects. Sounds like he’s back to his avoiding ways…
Ugh! I would just KILL my doctor if he pulled that BS!!! I don’t blame you in the least for being very very angry…I hope you get it all worked out soon
Kick his arse. Seriously. Fill the prescription, go round to his, and force feed it to the maggot.
You are never satisfied! Dear Lord save us! A fax is a form of contact, isn’t it? Well?
And I don’t know why you’re so worried about these side effects. You know they always put the worst-case scenario. It might never happen! Stop worrying. Be a good little patient and swallow your dose of bullshit, I mean medicine.
And please don’t lose faith in the great man. You know he only has Ivy’s best interests at heart! He has a perfect track record. This one little blip shouldn’t bother you so much.
Have you considered exploring alternative therapies?
Two close friends of mine have lupus. Friend A went with all the current medications to treat her lupus, some with horrendous side-effects.
Friend B.. sees her Gp and a naturpath and uses natural remedies as much as she can.
Friend A has had some pretty major complications from the toxic chemical cocktails her ’specialist’ prescribes. and is now having chemo injections once a week and is pretty sick..
Friend B has good days and bad days but is still fit and active..
both women are the same age, have similar lifestyles..
It is a hard call Tiff..
((((hugs)))))
Oh, that doc certainly took the “Doctors as Gods” elective, rather than the more namby-pamby “Work with Patient’s Parents” module, didn’t he.
Yes, the internet offers the worst case scenario - but if the doctor isn’t able to give any other advice, who are you meant to turn to.
My goodness - blind faith? Please. This doc knows how pissed you are and takes the fax option? May I do some screaming for you?
Arrrrggghhh! Fightin’ words! And he faxed them???? … Go get ‘im Tiff!
That bloody doctor again! I’m agreeing with Tracey and Frogpondsrock here. Seek out a naturopath and see if there are alternatives which will help Ivy so that she doesn’t take the chemical cocktails so beloved of “modern medicine”.
Really, there HAS to be a better way. That beautiful little girl shouldn’t be made sicker. What happened to the first rule of medicine? DO NO HARM. She’s a child, not a lab rat.
A fax?! A bloody fax?!
My god!
Even though I come from a medical background and have supreme faith in the doctors and nurses who cared for me throughout my childhood - I’m will everyone who is suggesting you see a naturopath and see if you can treat Ivy with something that will be less toxic for her.
Good luck and know that are thoughts and prayers are always with you.
Gosh Tiff - that is extreme ! My thoughts and prayers are with Ivy tonight. I hope she is okay.
I cannot imagine why they would change meds- it all seems a very hard call to say Dapsone is better.
WT heck !
Good old-fashioned cod-liver oil is a natural immune booster and it helps with skin health too. Garlic is a natural antibiotic, taken in foods on a regular basis it helps keep infections away. There’s lots of other information out there.
Hi, My name is Heather and I can say I too Hate Dapsone. I was diagnosed with Leukocytoclastic Vasculitis in July. Was first put on Colchicine, it had a nasty side effect and I asked to be switched over to something else not realizing what it would do to me. I started out at 25mg a day two weeks later i was at 50 mg then 2 weeks later at 75mg then by Christmas 2007 was at 100mg a day. In Jan because of increasing breakouts on my legs the Dr put me on 200mg of Dapsone a day. Superbowl Sunday I had the flu. March 6th I had CA-MRSA. ( I have had it 4 times in 2 months). I have had to be rushed (April 23rd) to the ER because my oxygen level was at 70%. I have had a cat scan done to check my lungs and at this point have been advised not to take the Dapsone for the same side effects you had found while researching the medication. The breakouts were originally on my legs and are now moving up to my arms and closer to the organs they are most worried about it getting on, I am on antibiotics, I am 10x more susceptible to getting sick than any of my co-workers because of this medication. I truly feel for your daughter and pray that she will be alright.