I had glandular fever almost exactly a year ago now, badly. I had raging temperatures, could barely function, extreme nausea, sickness and fatigue for over a month. I kept being misdiagnosed told it was sepsis and was fobbed off with antibiotics for ages.
Anyway I went to my doctor and suggested that we do some bloods. Cue liver function tests being deranged and I was admitted to hospital for a couple of days. I tested positive for glandular fever, had lymphocytosis (raised specific white blood cells), an enlarged spleen and this in turn has caused the crazy lfts.
So not much can be done apart from taking paracetamol and I rode it out. Had a follow up ultrasound and spleen was back to normal, follow up blood tests went back to normal too. It took a couple more months to get over the fatigue but I reckon I was nearly back to normal and wasn't suffering from this chronic fatigue that some people get.
My immune system suffered though, I had two colds lasting around a month each and a bad bout of tonsillitis that needed antibiotics. 3 months or so after my hair fell out badly, luckily it wasn't clumps and it just thinned out. This stopped after a couple of months like the doctor said it would after having glandular fever, so no need to see a dermatologist and baby hair followed... Happy days!
So carried on as normal but then around November was when my right hip joint started giving me trouble. If I did just 6 or so hours on my feet at work it would just start to give way. As the weeks went on I felt it in my muscles and then knee and ankle joints. Always worse in the mornings. My 3rd trip to the doctor eventually resulted in a rheumatologist referral - which I was told could take 6 MONTHS, but at least something was getting done.
However after that doctor appointment my left calf swelled up and that was the start of the hospital stays - I was admitted mid January of this year whilst they investigated.
Lupus diagnosed in March.
II was fine before I had glandular fever. I haven't been told why I have lupus but surely this is why? Everyone has said I was never the same since I had the virus. Who knows and maybe I'll never know, but it helps to blog about my frustrations! Xxxx
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Scoofiecoo
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I'm so sorry to hear how ill you have been. Many of us go through a long period of illness where we are either misdiagnosed, or our symptoms are dismissed by doctors. Lupus is a complicated illness, & unfortunately can be difficult to diagnose until it becomes more advanced.
It is thought to be an genetic illness, & it can sometimes run in families. This means it is in your biologic make up before you are born, but it takes a trigger to set it off. For you it sounds like that could have been glandular fever. For me I think it was a combination of a severe allergic reaction & vaccinations that overloaded my immune system. I'm sure lots of other possible reasons will be posted on here. But the truth is, we will never know for sure until more scientific research is done.
Now that you have been diagnosed, of course you will want to try & understand why this has happened. But try to also learn about the illness in a positive way, & about the steps you can take to help keep you as healthy as possible.
I have found the Lupus UK, St Thomas' Lupus Trust & Lupus Foundation of America websites really helpful, with loads of useful information. There are also some great blogs out there written by fellow lupies, such as Despite Lupus by Sara Gorman, & many others. But nothing beats talking to other lupies who are going through the same thing as you. Whether it's on here, or in person, if you have a Lupus UK support group near you.
Thank you for your reply. It's helped to realise the glandular fever has caused my first flare up as opposed to the lupus itself quite possibly. I'm definitely trying to learn about it positively as I'm a pretty positive person (I think sometimes my venting blogs don't show that!) it's actually friends and family who were more wondering.
Thinking about finding a lupus group near me and I'm forever researching about my condition as I find it helps to know about it. Plus being in this flare up I have plenty time on my hands! Xxxx
I found that in the first couple of years of being diagnosed with Lupus I had a lot of 'why me?' questions and made me re-examine my past symptoms through a new lens (I'd been diagnosed with ME several years earlier, but I'd had problems all through my teens too).
When I was 13 I reacted badly to the BCG (TB vaccination) although no doctor sussed it at the time, I had glandular fever type symptoms for 6 weeks with painful swollen glands, sore throat and fatigue, but tested negative for glandular fever. I can see looking back, that this was the first trigger for me.
The second trigger was having twins 12 years later. I was eventually diagnosed with ME, but years later was diagnosed with Lupus when the joint pain became more pronounced. I know I have a genetic susceptibility because my mum has Rheumatoid arthritis.
It sounds like you've had a really rough ride since having glandular fever, and this could well have been the trigger for you, probably you have a genetic susceptibility too. I'm so sorry it's been so tough, Lupus is a hard disease to live with, but you will find a way to manage it over time and still have a good quality of life, but it takes time to learn to adapt.
In my experience, Doctors don't understand what causes Lupus, and feel uncomfortable discussing it because they don't have any answers. That was very frustrating for me. I've come to terms with it in my own way now and found my own answers, but it took time. I was diagnosed 3 years ago and I'm feeling much better. I've found that for me drug therapies didn't work, so I've approached my treatment through an alternative approach: an anti-inflammatory diet, take herbs, get complementary therapies, make sure I carefully manage stress, avoid the sun, and do things I enjoy as much as possible. I'm now able to work part time and I'm able to do a lot more than I could even a year ago.
I agree with roobarb, getting support is very important, so keep in touch here, meet fellow lupies, and take it easy on yourself, it takes time to come to terms with Lupus.
I think so far I've taken my news pretty well, it's just this thinking if I hadn't caught the virus would I have actually been okay? But it seems that probably something else would have caused this first flare up anyway. Though saying that I'm ana negative so who knows really! I have to laugh it's a very confusing and difficult illness to understand!
Thanks so much for your reply though it really helps to read about other people's experience and yes I'm realising how little doctors know about it now - which can be frustrating. I'm ploughing on with my 60mg pred till mid April when my next rheumatology appointment is and I'm coming down whether he agrees or not. It's not worth the side effects I have in fact concluded I feel worse now than I did with just the joint pain. Xxxx
Can I ask how old you are Scoofiecoo? My daughter also developed Lupus following Glandular Fever and had the same response as you from the Docs, antibiotics for tonsilitis etc. She is 18 now and still ill and finding it hard to deal with chronic illness
Hi, I too had glandular fever similar to yourself, (although I wasn't hospitalised) and suffered from then on. It was six years later before SLE was diagnosed. I'm not sure if there is a direct correlation between glandular fever and lupus but have heard of several people who have had glandular fever prior to being diagnosed lupus, as the earlier commentator states it may well be a trigger that precedes the lupus.
I really hope you're health improves and that you get on the right treatment for you now you've been diagnosed.
I had glandular fever twice when I was a child and my Consultant reckons this is connected. But then so is my psoriasis and arthritis in the family...... Take care.
She is in the process of diagnosis but I have Lupus as well and can see the similarities. She has been unwell for just over 2 years. She has had to leave college and is hoping treatment will at least control her symptoms.
Hi Scoofiecoo, my SLE is pretty poor at the moment, no active organ involvement thankfully, but the routine symptoms of joint pain, fatigue, infections and costocondroitis have resulted in my leaving full time employment. Whilst this is difficult to come to terms with I remain thankful that i'm not hospitalised and don't have the more critical problems that so often accompany SLE.
I really believe the glandular fever was a precursor/trigger to the SLE beginning, but really if I analysed other earlier illnesses like pneumonia etc it is likely that it was lying dormant for quite some time. I've always had the red butterfly rash on my face, as a child my GP said I was allergic to the sun, always needed to use F50/sunblock and have ranged from periods of real good health to overwhelming fatigue and subsequent bouts of low mood as a result. So who knows really, I fully understand how frustrating it is that there aren't real answers to the many questions we have and often no explanations for our symptoms, but I think overtime most of us come to terms with the uncertainty of the illness and try our best to live life as best we can under the circumstances.
I'm am only being treated for Lupus symptoms (fatigue, joint pain, headaches, brain fog/ memory problems), I have not been diagnosed with Lupus but do have asthma & Antiphosolipid syndrome (APS). There's often things that in hindsight were a sign of "lupus" and autoimmune problems; I was only 13 when something awful happen, it was a terribly stressful time & stress I think helped bring on my symptoms. I also picked a bad virous around the same time, my mum called the Dr out to me and shortly after that the headaches started. I always got flu/ chest infections etc. then it wasn't until I was 28 I got a terrible rash whilst abroad and since then had to wear high sun factors. Then when I was 37 I sadly lost twins at 26 weeks they were stillborn (Ryan & Amber), they were IVF and I now realise hormones have a lot to do with our problems. Thankfully after another dose of IVF I fell pregnant again and that when they found out about my APS so were able to treat me whilst pregnant and now I'm happy to say have a lovely 6 year old son!!! So I think it's a combination of illness, hormones & stress that brought my "lupus" symptoms to a head!! Now I get recurring pneumonia; 10 times in 8 years! I think you're doing the right thing keeping a positive outlook and I'll try to copy you! Good Luck & glad you're feeling better.
I Had chicken pox in 1998. which made me very ill. the doctor kept saying there was nothing wrong with me.I was 32 at the time. I began to get sicker and sicker until i collapsed at home.
I was then diagnosed with SLE. Unfortunately my kidneys had already failed at that time. I asked my doctor at the hospital where it had come from. He said most likely from the medication i took when i had chicken pox. You can either get shingles or lupus,sadly i got the latter. Apparently it is the same virus.
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Just out of Curiosity, what age did you feel you started with Lupus signs and symptoms? Age of diagnosis?
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