Hi all ! well Ellie seems to be haing a respite form Lupus at the mo ? Is there such a thing ? we have had a good 6 days I`m delighted to say ! Appt (finally) at newcastle RVI next friday..rheumy dept. Am starting to get hopes up..or is this too soon ?! Really has been `my old Ellie` back recently !
respite?: Hi all ! well Ellie seems to be haing a... - LUPUS UK
respite?
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Northerner123
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Yes you can go into remission, I did. I was told I had ME in the Nineties an I had all the same symptoms as now nothing has changed. I could hardly move and I had two small children to look after.
About the end of the Nineties I was okay again doing lots of voluntary jobs. The tiredness and fatigue never did go away but I knew my limitations and never got over tired.
About 2004 I went back to paid full time work which was a disaster as all the symptoms came back and more. I was diagnosed with lupus after several blood test and about three weeks in hospital.
Make sure Ellie takes it easy and know her limitation as to what she can do before getting tired or a feeling of exhaustion.
Blessings to you and your family
xx
She will be going to the Great North Children's Hospital part of the RVI which has a specialist children's rhematology unit, it has a very good reputation. Adult Rheumatology in Newcastle is all at the Freeman Hospital which is also very good for rheumatology. She can go there if she still needs to after she is adult.
She can go into remission if she gets the right care and a remission can last a long time. They will explain it all to you at the appointment. I am in a remission at the moment in fact my GP had a look at my latest blood test and she gave me a big wink and said with a smile "there's nothing wrong with you!
The beauty of remission.
How wonderful for Ellie and for you too.
But ... remember to always acknowledge that 'it' exists within.
Have regular checkups.
Limit physical challenges within reason.
Be on the lookout for any signs of possible re-occurrence.
Otherwise ... live life laughing.
GO ELLIE GO!
Thanks all, yes saw a fabulous consultant, not sure if we can name on here?! We were with him for over 2 hours, he explained eerything to Ellie, did more blood tests,the results of which will take about 5 days ...if the anti nuclear factor & white cell count are as bad as the last 2 blood tests- then it is Lupus, if not & they are improved he says it`s possibly Epstein Barr syndrome, but he`ll put his pension on Lupus !
Ellie totally confused, he then went on to explain if it`s Lupus she will be in GN Childrens Hosp for 5-6 days & on a drip to start all new meds.
Apparently Epstein barr has no `cure` or treatment as such..Ellie said she hope`s it`s Lupus as that`s manageable!
I spoke / typed too soon with the remission...slept all day 2 days afer my last post & numerous episodes since...ah well, great while it lasted.
xx
