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Another newbie

548 Views 6 Replies 6 Participants Last post by  Freya
I always feel a little reluctant to sign up to forums because I have a habit of starting enthusiastically then run out of steam and end up not visiting or contributing for months on end!
But at the moment Lupus is the biggest thing going on in my world and I figured that this is exactly what this site is all about. If I'm blessed with a similar flare to the one I had when I was diagnosed 8 years ago then I'll warn you all now; I will disappear! I hope it's not too fickle of me, but as it's been mentioned on here several times, my Lupus is very mild and between flares I'm not posting because I'm quite simply out there living life!
A little about me;
When my platelets crashed 10 years ago I was diagnosed with ITP. Eventually all of my other ailments both past and present resulted in SLE being diagnosed. I took Plaq and Pred for a couple of years until I maintained a stable platelet count and my aches, pains and fatigue completely went away.
This time around I started to feel unwell in September and eventually got to see a Consultant last month who confirmed a flare. He was surprised that I hadn't been called in for check ups for the last 8 years and is now carrying out a full MOT on me which is very reassuring. After a short spell on the steroids which brought immense relief I'm now waiting patiently for the Plaq to start working. It's been a month so far and my joints are hurting more now than they ever have and I'm struggling to maintain my usual good humour!
So, that's my encounters with the wolf. I have some questions regarding symptoms so I'll be back!...
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Hello Freya and welcome :)

A lot of people come and go here. Sometimes because they are too ill or too well to be coming on the forum and we're quite happy to welcome you for whatever time you need to be here.

I'm sorry to hear you are flaring and most surprised to hear that you weren't followed up for those eight years. Many people stay on plaquenil even if they are in medication induced remission as it is a drug that takes so long to kick in when you go back on it. Of course, your case is maybe a little different as you have been lucky enough to have such a long remission. Great to know that they exist :)

Hopefully the meds will kick in fairly soon and you'll be feeling a whole lot better,
hugs to you :hug:
Hello Freya

Hi and welcome,
I am sorry you are going through another flare... It sucks when you have been feeling good and it doesn't last as long as you would like it to...
I am sure you will enjoy coming on this site the people are warm and welcoming and everyone is more than happy to help one another...
I have been coming to this site for many years and I can tell you I would have been lost without the support I got here...
I too have been taking breaks...I have been out there living... but I allways come back because this place is in my heart... Welcome again.

Love Penny
Welcome to the site - your post certainly gives many people a lot of hope that a full life is quite possible even for 7-8 years between flares! Hopefully the medications will bring about that result for you again in short order.

Interestingly, we have another new member here with ITP who is actually struggling to get a lupus diagnosis but believes her symptoms definitely match with lupus.
Hello Freya, Good to know you have been so well until recently. I hope the Plaq. soon works on your joints.
x Lola
Hi Freya

Welcome to the Forum. By a strange coincidence my cousins daughter just gave birth to a baby girl and she called her Freya. :) I had never heard of the name before.

Anyway, I digress.... Im sorry to hear about your flare. It must be such a pain in the backside after so many years in remission. Yes the wolf does like to remind us that he is not gone away for good....

It might be an idea to consider adding something else while you are waiting on the Plaquenil to take effect. Perhaps an NSAID for the joint pains? Its no fun being in such horrible pain.

Dont worry about coming and going. You only need to contribute as much as you need to. We're glad to be of help whenever you need it.

Looking forward to getting to know you
Luv n stuff
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Wow, thanks for the warm welcome guys!
I have been very lucky that I've had many years symptom-free; infact I've almost felt fraudulent having the Lupus word hanging over me and being so well. I must admit I'd secretly hoped it had gone for good! I also suspect that both flares were triggered by two extremely stressfull events in my life so from now on in there will be no stress please :lol:

I had been agonising over whether to take medication whilst waiting for the Plaquenil to kick in as half of me felt that if I was experiencing pain at least I'd have something tangible to discuss with the consultant. Also (and is this "normal"?) the pain eases through the day and has 90% gone by bedtime. It is however so exhausting getting to the part of the day when I don't hurt that I end up crashing out early only to start all over again the next day, and so it goes...!
Anyway, I've decided I don't need to suffer and have gone back on the Prednisolone today. Hopefully my Consultant be be ok with that decision when I see him in a few weeks.
Anyway, I'm delighted to have received such a warm welcome and I'll happily talk ITP with anyone who so wishes!
Freya x
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