My story . . .
I first became ill in the year 2000, a great start to the millennium! 11 years old and just started high school, I was always picking up infections and forever taking time of school during my first year, and by the end of the year was diagnosed with Glandular Fever (Mononucleosis).
Months later I was still back and forth to the doctors surgery with one infection after another and was referred to a paediatrician. His first thought was it was prolonged glandular fever, or something caused by puberty. A few months later, it was picked up on an x-ray that I had an abnormal spine curvature in my neck...maybe it was an abcess? A few weeks later, after lying in a noisy tunnel for an MRI, it was proved; no abcess. I was having blood tests after blood tests. Some came back abnormal but when repeated were normal. By this point, I was getting huge mouth ulcers that often ended up infected and pussy.
The paediatrician then decided to refer me onto an immunologist and rheumatologist. He then decided that it was one of 4 things; Chronic Fatigue Syndrome (quite likely), Prolonged Glandular Fever (but it’s been going on for TOO long now), some type of rheumatological disorder possibly lupus?!! (but it can’t be that you don’t have the characteristic rash) or some immunological disorder. He had an idea that my white blood cells might be patterned. Take a small dose of antibiotics (amoxicillin 250mg once a day before bed) and have FBC every 2 weeks. By now, I had started with severe joint pain and swelling. The doctor gave me Celebrex for inflammation which worked well for a while and then was eventually swapped to Naproxen. I was also given Co-dydromol for pain, which I still take today. This showed no pattern. After another couple of months, he discharged me with Chronic Fatigue Syndrome. Thank goodness I still had my appointments with the Rheumy and immunologist.
The immunologist appointment came first. More bloods. A few appointments in, he decided to start me off on Prednisolone 30mg. Best thing ever for years! I finally had some energy, and could do some things I couldn’t before (like go out with my mates!). That was November 2003. And within a month I had my first appointment with my Paediatric Rheumatologist. The Naproxen was having less of an effect then it was so this was changed to Diclofennac.
It took 3 appointments with the Rheumatologist before he diagnosed Mild SLE in February 2004. I was 14 years old, in the middle of my GCSE courses. He handed me a leaflet from ARC (Arthritis Research Campaign) and started me on Plaquenil 200mg daily, and told me to taper off my prednisolone, see you in 3 months. We (my parents and I) didn’t really like my rheumatologist. He had a very stand offish manner, and turned round to me and told me that he had patients worse off than me and I should get on with it, when I told him I was in severe pain one time. That was when my dad demanded he referred us to the Louise Coote Lupus Unit at St Thomas’ Hospital.
September 2004 I had my first appointment at the Clinic. She put me back on Prednisolone 15mg and she’d see me in a month. I saw her every month until about February 2005 she gave me Methatrexate 7.5mg weekly, which then got increased to 10mg. Unfortunately the oral tablet form of this medication was causing me severe nausea, so it got changed to injections. The Methatrexate gave me the most relief from symptoms I had felt in years! But after a few months, the injections also started to cause me nausea, and then increased stress when my mum was diagnosed with breast cancer started me to flare. So the Methatrexate was again changed to Leflunomide 10mg daily for two weeks then increase to 20mg.
A few weeks in, and the effects were great and we started to taper down the steroids, eventually down to 7.5mg daily but couldn’t get any further. Of course I still had to pace myself, and if I forgot and did too much, I knew about it later. I still had pain especially in my knees, which variated and also swelling, and got tired easier than anyone else, but life was so much better, and so much easier! I found ways in which I could pace myself, and ways in which I could do more. Like using a wheelchair for the long distances when I started university in October 2007, and sitting down more often, and taking naps etc.
But again, it wasn’t to last. I contracted meningitis in January 2008 and it messed everything up. I started to flare severely, just getting worse and worse, and so much pain. My Steroids were put back to 10mg daily. The Leflunomide was changed to Mycophenalate Mofetil 500mg tapering up to 2g.
During this time, it was noted that the prednisolone had caused bone thinning and in December 2006 I was diagnosed with Osteoporosis, and I started calcium and vitamin D treatment, first with calcichews, then changing to Sandocal and Calcitriol.
I eventually got to 2g in November, but felt no relief from my flare, and in fact was still getting worse. In January 2009, my Rheumatologist decided to seek approval for Rituximab, which has been granted and I am due to have my first infusion 9th March. My Sandocal is also being changed to Risedronate has my Osteoporosis has deteriorated.
Months later I was still back and forth to the doctors surgery with one infection after another and was referred to a paediatrician. His first thought was it was prolonged glandular fever, or something caused by puberty. A few months later, it was picked up on an x-ray that I had an abnormal spine curvature in my neck...maybe it was an abcess? A few weeks later, after lying in a noisy tunnel for an MRI, it was proved; no abcess. I was having blood tests after blood tests. Some came back abnormal but when repeated were normal. By this point, I was getting huge mouth ulcers that often ended up infected and pussy.
The paediatrician then decided to refer me onto an immunologist and rheumatologist. He then decided that it was one of 4 things; Chronic Fatigue Syndrome (quite likely), Prolonged Glandular Fever (but it’s been going on for TOO long now), some type of rheumatological disorder possibly lupus?!! (but it can’t be that you don’t have the characteristic rash) or some immunological disorder. He had an idea that my white blood cells might be patterned. Take a small dose of antibiotics (amoxicillin 250mg once a day before bed) and have FBC every 2 weeks. By now, I had started with severe joint pain and swelling. The doctor gave me Celebrex for inflammation which worked well for a while and then was eventually swapped to Naproxen. I was also given Co-dydromol for pain, which I still take today. This showed no pattern. After another couple of months, he discharged me with Chronic Fatigue Syndrome. Thank goodness I still had my appointments with the Rheumy and immunologist.
The immunologist appointment came first. More bloods. A few appointments in, he decided to start me off on Prednisolone 30mg. Best thing ever for years! I finally had some energy, and could do some things I couldn’t before (like go out with my mates!). That was November 2003. And within a month I had my first appointment with my Paediatric Rheumatologist. The Naproxen was having less of an effect then it was so this was changed to Diclofennac.
It took 3 appointments with the Rheumatologist before he diagnosed Mild SLE in February 2004. I was 14 years old, in the middle of my GCSE courses. He handed me a leaflet from ARC (Arthritis Research Campaign) and started me on Plaquenil 200mg daily, and told me to taper off my prednisolone, see you in 3 months. We (my parents and I) didn’t really like my rheumatologist. He had a very stand offish manner, and turned round to me and told me that he had patients worse off than me and I should get on with it, when I told him I was in severe pain one time. That was when my dad demanded he referred us to the Louise Coote Lupus Unit at St Thomas’ Hospital.
September 2004 I had my first appointment at the Clinic. She put me back on Prednisolone 15mg and she’d see me in a month. I saw her every month until about February 2005 she gave me Methatrexate 7.5mg weekly, which then got increased to 10mg. Unfortunately the oral tablet form of this medication was causing me severe nausea, so it got changed to injections. The Methatrexate gave me the most relief from symptoms I had felt in years! But after a few months, the injections also started to cause me nausea, and then increased stress when my mum was diagnosed with breast cancer started me to flare. So the Methatrexate was again changed to Leflunomide 10mg daily for two weeks then increase to 20mg.
A few weeks in, and the effects were great and we started to taper down the steroids, eventually down to 7.5mg daily but couldn’t get any further. Of course I still had to pace myself, and if I forgot and did too much, I knew about it later. I still had pain especially in my knees, which variated and also swelling, and got tired easier than anyone else, but life was so much better, and so much easier! I found ways in which I could pace myself, and ways in which I could do more. Like using a wheelchair for the long distances when I started university in October 2007, and sitting down more often, and taking naps etc.
But again, it wasn’t to last. I contracted meningitis in January 2008 and it messed everything up. I started to flare severely, just getting worse and worse, and so much pain. My Steroids were put back to 10mg daily. The Leflunomide was changed to Mycophenalate Mofetil 500mg tapering up to 2g.
During this time, it was noted that the prednisolone had caused bone thinning and in December 2006 I was diagnosed with Osteoporosis, and I started calcium and vitamin D treatment, first with calcichews, then changing to Sandocal and Calcitriol.
I eventually got to 2g in November, but felt no relief from my flare, and in fact was still getting worse. In January 2009, my Rheumatologist decided to seek approval for Rituximab, which has been granted and I am due to have my first infusion 9th March. My Sandocal is also being changed to Risedronate has my Osteoporosis has deteriorated.
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