Hello

[Liz2304]

Hope everyone had a good Christmas? . Due to my lupus being severe at the moment , I'm going to the hospital every 2 weeks to see my consultant, currently still off work too, is anyone else going through this? , Constant blood tests blood pressure checks and more medication each time ?

[CecilyParsley]

Hi Liz I just wanted to say I am so very sorry that you are suffering so badly but relieved that you are getting such regular check ups. I sincerely hope that the treatment you receive will help ease your symptoms and that you can begin the New Year feeling much better. Be kind to yourself and take care xx

[smeackles]

Hi Liz

Sending festive and new year love - so sorry you are suffering so severely at the moment. It’s good they are keeping a real close eye on you, but anything negative or painful is harder at this time of year when you just want to enjoy time with friends and family.

Here’s hoping the new year brings improvement and the meds turn a corner on this flare up. Xx

[Brackensmum]

Hi Liz, so sorry you're going through a rough time and I do hope you start to feel well soon. I have been fine this Christmas but was awful this time last year and when I think about it, I often have flare ups at Christmas time. I wondered if it was something to do with stress, I nearly always host family and can't help getting stressed out during the build up, presents, food, house tidying etc. Might just be a coincidence but I do wonder if there's a connection. Take care xx

[BeeManShrop]

Hi Liz Like everyone else here we are so very sorry to hear, that you having a rough time just at the very time of year that you need to be on top form we really do feel for you. We were lucky this year as my daughter and daughter in law took everything in hand and bought all the presents and for the first time in 30 odd years the Christmas family dinner was at my son's house. My wife is the one with SLE & RA, she is doing OK - ish! at the moment (relative term) apart from the usual unpredictable aches, pains and fatigue etc. But they are routine now - it is the degree that matters and presently we know from the past that they could be much worse, so we are thankful . It sounds as though your doctors are keeping a very close eye on you which is a positive and hopeful sign. There are many on this site that would be thankful to see their medics for more than a couple of times a year.

Am I allowed to offer a little advice? If you feel up to it, sign on to Patient access and view your own blood test results and learn as much as you can about the different tests and what they mean. You are then in a better position to ask appropriate questions when you see your rheumy. The tests will show which are abnormal and by how much they deviate from the normal range. Everyone is different but we found that the dsDNA, ESR and CRP were the most useful and it gave us a sense of satisfaction when you see these abnormal figures gradually move towards the normal range. It did take a long time (nearly 2 years in our case) though, but little by little the dsDNA came down from over 1000 to within the normal range. You can imagine the excitement and celebrations when the results moved from the red to green. I say this to show that there is a light at the end of the tunnel although we appreciate that you may not see it at the moment -sorry.

Hoping this helps --just a little. Also hoping your health improves and you feel better in the New Year.

Good luck!!!!

[Liz2304 in reply to BeeManShrop]

Thank you so much for the advice , it's nice to hear from people going through similar to me , this is what I was struggling with , people to relate too 😊

[Jerg]

sorry to hear that hope you get the right treatment and get better soon