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Modafinil rash is this a cuase of concern?

limited profile image
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I started modafinil 100mg and within 6hrs i expereicned itching mild swelling of the face,itchiness and some sort of heat rash but it went away with piriton.i was so scared i thought it was sjs.

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TheAuthor profile image
TheAuthor

Hi limited

I am so sorry to read that you are having such horrendous side effects to your Modafinil, and I urgently recommend that you to see your GP to discuss this issue further. If the symptoms persist and / or get worse, you should really dial 111 or go to your nearest A&E department to get checked out.

I have pasted the NHS list of Modafinil side effects below for you to read:

nhs.uk/medicine-guides/page...

When you said SJS, I presume that you mean Stephenjohnson's syndrome? I have pasted a link from their awareness website below, as you will see it is highly improbable that it is this:

sjsawareness.org.uk/

I implore you as a friend to get these swellings looked at as soon as possible and please let us all know how you get on?

Take care

Ken

limited profile image
limited in reply to TheAuthor

Im so scared as the dr told me to try the medication for one last time.and if i do have a reaction i probaly have to get adrenaline and i hate injections :'(

TheAuthor profile image
TheAuthor in reply to limited

Hi limited

I am so sorry to read how genuinely frightened you are, and I hope that you do not have a reaction to your medication. I don't think any of us like injections but in your case it is avoidable by giving you a different medication!

I was wondering if you went to any hospital clinics? As they can write to your GP advising a different medication?

I sincerely hope that everything goes well for you, please take care.

All my hopes and dreams for you

Ken

limited profile image
limited in reply to TheAuthor

I did go to the gp and they also told me to just try the medication again and see what happens ,nd if i spot a rash i should go to a/e.but i was just wonderig does sjs happen rapidly or does it manifest after 6hrs like in my case?

Mdaisy profile image
Mdaisy

Hello Limited,

You sound like you may have experienced an allergic reaction to something as the symptoms you are describing are similar to Anaphylaxis. Here's some information below;

nhs.uk/Conditions/Anaphylax...

Obviously I'm not a Doctor but I would imagine that as it resolved with Priton, anti histamine it sounds more likely to be Anaphylaxis rather than SJS which is probably unlikely to resolve taking this medication.

With any reaction like this you should talk to a Healthcare Professional as soon as possible as further exposure to whatever caused the reaction may cause more severe symptoms, which could need emergency medical attention.

You mention the reaction was 6 hours after the Modafinil, any new medication should be discussed with your Doctor but it seems a long time after to have this reaction. I think you would be best considering ringing NHS direct as soon as possible to explain the event and to talk to someone as they have a drug information service too.

I would also consider seeing the GP Monday to discuss this further as s/he may discuss an Epi Pen with you. Here's a link;

patient.co.uk/medicine/adre...

Please seek medical advice as they will be able to diagnose you as they discuss the symptoms with you. As Ken said please let us know how you get on.

Best Wishes

Emma :)

FibroAction Administrator

MDinTraining profile image
MDinTraining

You should discontinue its use immediately and call your doc. If that's an allergic rxn you may eventually experience anaphylaxis.

MDinTraining profile image
MDinTraining

Also its not a long time for the reaction if this was your first exposure. It just means your body was becoming sensitized to the med. Subsequent exposures will illicit much faster and more danger our reactions potentially.

loppyloo61 profile image
loppyloo61

Hi Limited,

I am no expert by any means, even unsure what Modafnil 100mgs Medication is? However the reaction you explained of the Itching and mild swelling of your face, itchiness and some sort of heat rash is really cause for concern. Especially as the symptoms were resolved by taking Piriton. The effected area where the swelling was, would you describe it like raised circles (Hives)?

If so this does sound very much like Anaphylasxis, this can become very dangerous as it sounds like a severe reaction! Which needs Urgent Medical Attention! I would most certainly seek your GP"s advice Monday or ASAP!

I say this as my two youngest sons suffer with Anaphylasxis Shock and both of them have to carry an Epipen to administer urgently should they have a Allergic Reaction! My sons are allergic to all types of nuts, Sea-foods ect. and certain Medication. In a severe "Reaction" your tongue and throat can swell causing severe problems with Trachea which can prevent you from breathing! Which needs the Epi pen to Elevate this., until you can get Urgent Medical Assistance!

My two sons have to administer the Epi pen (which is an Injection of Adrenaline) in to their Thighs, then immediately dail 999 for Urgent Medical Assistance! They have to carry two "Pens"! It is a very serious condition! They have had their Anayphylaxis Shock since childhood, have carried Epipen all their lives! You are trained how to Administer this by who ever Prescribes Epipen, if you are unfortunate enough to prove positive to Allergy Skin Test and Blood Tests and diagnosed with Anayphlaxis Shock, which I sincerely hope you are not!!

I would urge you to seek advise from your GP ASAP, who could arrange a Series of Allergy Skin Tests & Blood Tests which would indicate what types of things you are Allergic to and act appropriately ! Good Luck

Best wishes Betty Baby

limited profile image
limited in reply to loppyloo61

Hi thanks for sharing ur expereince ,can i ask did ur sons have a reaction immediatley after ?

loppyloo61 profile image
loppyloo61 in reply to limited

You are welcome. It depends to what they are Allergic to, but it is usually immediately! I" ll give you one example just to show how sensitive/serious Allergies can be: My eldest of the two with the Allergies, took his girlfriend on holidays to propose to her. She ate Prawns,( which are obviously Sea-food) whilst they were @ a Restaurant enjoying a Meal together. He proposed, his then Fiancée. gave him a kiss innocently enough on the lips & my son"s lips and tongue, instantly started to swell up, and "hives appeared on his face and neck, he had an Allergic Reaction within Seconds!

Sometimes with Medication it can take little longer but if either are allergic to foods it is an instant re-action!

I urge you to seek medical advise asap. Explain to your GP what happened , if he/she thinks it is appropriate, can arrange for you to have a Simple Allergy Skin Test, which can show what you are allergic to and the severity of degree of allergy, by simple pin-prick tests on your forearm. Also can show up in blood tests.

It is only a suggestion but I would"nt take a chances and stop the Medication that caused your reaction immediately, until I was able to see my GP.!

Anaphylaxis Shock can be fatal if not treated immediately with Epi-pen/Adrenaline/ Your Doctor will be able to advice you correctly.

Best wishes

Good luck, Betty baby

fibro profile image
fibro

I have no experience of this medication nor what you have referred to at the end of your message, but just from saying what you have said, and i would tell anyone else too. You must stop taking the medication and seek immediate medical attention. Allergies don't just show on the outside of your body, you could do harm within too.

I hope the docs are able to suggest something else more suitable for you,

Take care xx

limited profile image
limited

Thank you to everyone for the help and advice :)

Louannhop profile image
Louannhop

Hi i can see that this a post a few years back but i was prescribed modafonil and i had a severe reaction of hives all over my body and face after two weeks of taking it i was taking a small dose and within a few weeks i had to be rushed to hospital and had to have a steroid injection to try and bring them down. I told my specialist and he didn't believe that it was the modafonil that caused it and told me that i should try it again as it was the best drug to be on for my narcolepsy. I was very apprehensive as I was in so much pain the first time round it took me 18 months to come round to trying it again but really wanted to make my quality of life to be better. So i decided id try it again by his recommendation and literally within hours of taking it i broke out in hives again this time worse than the first time i was in agony and had an anaphylactic reaction. I was out on steroids of months and then had to take a fexafenodine tablet every day for two years after if i didnt take it i would break out in parts of my body like between my legs underneath my arms my feet or my hands i thought it was never going to go away. What is it that I am allergic to in this drug! I am so scared of taking medication now just in case this ever happens again how can i know unless i know what it was in modafonil that caused this in the first place.

I don't suffer with Fibromyalgia, but I have other chronic health problems and I'm quite sensitive to any stimulatory drugs.

I decided to try Modafinil because the last few years I've been experiencing what I can only describe as Chronic Fatigue Syndrome, a daily extreme lethargic feeling which makes even doing normal things like bathing, housework, a major undertaking,

I had read that although the recommended therapeutic dose of Modafinil is 200mg, that's often too much for some people (especially those more prone to side effects), so the general advice among Modafinil users is to start with the lowest possible dose that's effective and only titrate the dose upwards in 25mg or 50mg doses until you reach an effective dose then stop there. It's also recommended not to take Modafinil daily for extended periods (i.e. more than a week or two) with breaks of a few days or a week, before re-using it because it's quite hard on the liver and other organs. And it should be taken in the mornings as early as possible since it can interfere with your sleep cycle.

My experience with Modafinil was this...

I started with 200mg (foolishly without doing my research) and that dose for me was way too stimulating to the point of causing anxiety and making me feel physically uncomfortable, slightly manic, very sweaty and dehydrated.

I lowered the dose to 25mg and found this dose worked very well for me. No anxiety, a significant improvement in energy with more mental clarity and wakefulness.

However, after about 3-4 weeks of continuous use, I developed a severe eczema rash (raised hard pimples, dry scaly skin, red inflammation in a clustered area) on my face. This is something I have which comes and goes. So it may be coincidence, but it seems to me the Modafinil contributed in some way to this outbreak. It was much worse than anything I normally have experienced in the past. Once I stopped taking Modafinil and started using skin treatment creams for the eczema, the severely lessened. When I resumed Modafinil, the symptoms worsened again.

Just wanted to share my experience and caution people who may have a predisposition towards eczema or rashes/drug sensitivity. If you are going to try Modafinil, start with a very low dose for an allergy test (5mg) and then try the lowest dose for effect (25-50mg) and see how it goes. Drink plenty of water, as you will sweat a lot more..and pay closer attention to skin cleansing and moisturising, especially in areas where you normally get dry skin or eczema.

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