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Long post but PLEASE read. I need help.

I’m on day 23 (TWENTY THREE) of my mono rash. I was  sick around the end of May/early June with what I thought was just a cold, sore throat (but, I was really sick - stiff neck, swollen glands, no voice) which was later confirmed to be glandular fever. I was in the middle of moving house so I pushed my sickness to the side and kept going. A week after moving into my new house I started feeling better, but was still eating panadol like lollies for relief. I had about a week and a half of feeling GOOD before the rash struck. 

I woke up one morning mid june, extremely itchy. Doctor told me it was my laundry powder and put me on prednisone and antihistamines. Didn’t work. Days passed and it was getting worse, spreading, itchy. After about 2 1/2 weeks, a hospital visit and another doctor visit, mono was confirmed, my steroid dosage got higher and my rash started going away. BUT it started peeling, I peeled for a week, my entire body. 

This rash started on my back and trunk/tummy, spread down my buttocks, thighs and calf’s, spread upto my chest, shoulders, neck, arms and forearms. It was raised, red, inflamed and so insanely itchy, my skin was almost like leather. 

Now here I am, 23 days after the first signs of the rash. Still insanely itchy. I am almost back to normal skin colour with a few pink blotchy areas, still on prednisone. I have scratched so much that I have scars and scabs covering my body, it’s horrible. 

I am slowly coming off the prednisone but I’ve noticed as I do, the rash is returning. Help, please someone! 

Has anyone had this with mono? How long will it last? 

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Hi,

OMG, that sounds terrible, I would be freaking out too.

This virus is so tricky and elusive, and it wears us down, because it lasts so long and keeps throwing in new symptoms, and we never know what to expect or when we will recover.

About the rash, this is normal for 20% of patients, and it sounds like you have a very nasty bout of it. I'm not a health professional, but talk to them about the prednisone treatment and how to manage your rash and get some comfort.

Take care of yourself, rest and eat healthy. Seems like the mono is particularly nasty towards you, and I'm afraid this is normal, but talk to your doctors about handling the rash.

Did you get antibiotics? This could lead to the rash in mono.

Sending you lots of healing vibes. 👍😊

Here's a piece from the internet:

How does the rash develop?

Around 15-20 percent of mono cases have skin-related symptoms. Most of the time, a mono rash is similar to that of measles. The maculopapular (small, flat and red patches) rash is widespread and may last for a week or more. The rash usually begins on the trunk of the body and then spreads on the arms and face. 

The rashes also tend to develop when patients with mono are being given antibiotics, such as amoxicillin and cephalosporins. These rashes often indicate that the patients are hypersensitive to such antibiotics.

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Thanks for your reply Malene!

I didn’t take antibiotics at all, which is why I’m so confused. All the research I’ve done for mono rash has been a result of misdiagnosing for a throat or sinus infection, therefor given antibiotics = rash. I didn’t even see a doctor for my illness. 

I did read a couple of people had the rash without antibiotic use but their symptoms went away within days, and didn’t spread like mine. I even had a small cluster of about 8 tiny blisters on my back which came up as herpes simplex ... like why? Shingles? 

I’ve never experienced anything like this in my life, I’m otherwise a very healthy 27yo female. 

I do have an autoimmune disease, can’t help but think my immune system isn’t working as it should and let this virus have a party in my system. 

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So sorry you are going through this. I

Too was in the middle of moving and came down with Mono at the end of April. My most bothersome symptom was/is skin related too  Dr gave me a shot of steroids and 7 days of oral steroids. It helped the rash go

Away but came back days after the steroid was finished. He then gave me another round and although the rash went away I still have mild itching and a sunburn feeling over my shoulders and back. (Maybe another round would help you?)   Some days are better but I’ve noticed that heat really exasperates the skin symptoms. Try taking cool baths.

One thing that has helped with the skin itching for me  is taking 800 mg of Ibuprofen every 4-6 hours. The itching is a response to inflammation. Try to get that lowered by eating anti-inflammatory foods and keeping your stress levels low. (I know that’s nearly impossible when all of these symptoms are so bothersome) 

I wish I could tell you how long it will last. It’s been 10 weeks of skin issues for me. I’ve also had swelling in hands, feet and joints. Some days are better and I take advantage of it. 

Hang in there🙏🏻

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Also, my rash was NOT antibiotic related. 

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I am so happy someone understands, I’ve been searching the web for the last few weeks trying to find someone or something! So sorry you’re experiencing this too. 10 weeks, that is brutal. I may have to see my doc for more steroids, but I unfortunately can’t take ibuprofen, I am allergic antihistamines do jack all too. Thankyou for replying, although it’s such a horrible thing to experience, glad to know I’m not alone! 

Yes the sunburn feeling, it prickles and stings and itches all over my chest and shoulders, then crazy itchy everywhere else. 

I told my doctor she was wrong when she said I was allergic to my laundry powder because the rash was INSIDE my belly button (HAHA) I said there’s no way my clothes touch inside my belly button! 

I will also begin an anti inflammatory diet and see how that goes. Thankyou! x

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Ughh, that is just horrible, I also feel like my body sort of lets me down during this mono - why can´t I fight if off??

Problem is, that mono is soooo tricky, and most websites will say it takes about 2 months, after that your´re a little tired for a while. Ha ha ha ...   :-)

But that´s not the reality for the people on this site - so glad that I found you guys.

So of course you are really concerned, when you´re "supposed" to have cleared your rash in two weeks ..... and you´ve been battling for more than 3 weeks. And another person here for 10 weeks!! 

Just goes to show, that we have to live with mono from day-to-day, and it might take longer than we think (or read), but we WILL get better one day, surely, and we can help eachother not freak out too much.

But definitely see your doctor again, maybe you do need more prednisone to stabilise the rash.

Good luck 

 

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Oh, by the way, I´ve read that mono is related to the herpes virus, which also causes a rask and small blisters, don´t know if it´s related to the mono-rash. 

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Hi Rks,

So sorry to hear you have been having such a tough time with mono and these rashes, thinking about you and really hoping things get better soon! I went through mono a number of years ago and just want to reassure you that things do get better with it, it can take a bit of time to recover for some but don't panic if that's the case because recovery definitely will come. It did take me a few months but everyone is different and really hoping things improve very soon for you. 

I have certainly read that rashes can occur with mono, thankfully it wasn't something that bothered me much during the virus, definitely worth keeping seeing the doc about that and maybe you need to be on some cream a bit longer perhaps, it's so hard not to scratch these things I know! Hoping it gets much better soon, and remember mono does get better and you will get back to full health again, even though it's so hard when going through it I know.

Taking some vitamins and supplements really helped me during the virus, a good strong multi-vitamin per day, extra Vitamin C (1000mg-3000mg per day), B complex (good for energy levels and nervous system) and immune boosting herbs like siberian ginseng and echinicea. Remember get plenty of rest and try not to push things too hard that's so important to help recovery with this, it's so frustrating though as recovery can be very up and down as you've described. 

Hang in there and thinking about you, and you will get through this truly I believe that, trusting God with that!

Craig

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Hi Craig, thanks so much for your reply. Glad things have gotten better for you, I didn’t realise how bad and prolonged  it’s effects were. Definitely feeling the fatigue now. 

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I am so glad I found this site too, I didn’t really know much about mono but it has been very insightful here. I’m definitely starting to feel the fatigue every day but I cannot sleep at night, doesnt help when I want to scratch all night haha. 

Yes, herpes virus is related to all those lovely rashes (mono, measles, chicken pox) ... 

My two kids also got sick when I was sick, I’m hoping they had glandular fever too (kids don’t suffer like adults!!!) so they won’t have to go through this when they’re older. 

here’s to hoping we all feel some relief soon!! 

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Oh you're welcome Rks, I know I was the same just didn't realise how debilitating or horrible going through this virus really could or would be. For me it was a very powerful experience, although it was 12 years ago now, I don't forget how tough it was and I really do want to come on and reassure you and others that this does get better and there is life after glandular fever, and it's a healthy and happy life again want you to know that it does go away! With God's help I recovered and just praying that full recovery comes for you too, I truly believe it will, hang in there for now though and remember it can take time but you will get there!

Craig