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Discussion Starter · #1 ·
Hi everyone!

My names Hazel, I'm 23, I live in Shropshire in the UK and was diagnosed with SLE approximately a month ago. I'd been suffering from increasingly painful joints the previous two months and eventually it was confirmed that I was suffering from SLE. After the diagnosis I was abit worried to be honest and my family were concerned of course, however, I was hopeful that now I was on the right medication I could recover and start living my life again.

However, a month on and I've had little improvement. My knees, wrists, and fingers are particularly effected, with my fingers swelling and making it difficult to do just normal daily tasks. I always find it worst in the morning and with no or little relief till 2/3 o'clock in the day I feel like I've wasted the day.

The most difficult thing that I'm finding is that I can't do the normal daily tasks I want to e.g. cleaning the house takes 3 times longer, picking up heavy objects is near impossible and its just so difficult getting out of bed every morning. I'm on numerous pills - co-dydramol, naproxen, prednisone and planquenil (sorry if spellings aren't accurate) and I've even increased my steroids dose from 7.5 to 15mg a day to try and improve my condition but with no relief.

I'm just getting increasing depressed about the situation, the increased steroids aren't working, i can't do any exercise, just getting out the house is a real effort. There's the occasional day where I'm almost back to normal but then I come crashing down again the following day. I've had to postpone my masters degree because I can't complete the assignments and I feel like i'm completely useless at times.

Is there any advice anyone would be able to offer. I feel like I know more about the condition than the specialist I've seen and he doesn't seem to be giving me the answers I want. The only option I can see is to maybe increase the steroids further, I just know I can't carry on like this.

Thanks for reading. xxx
 

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Hello Hazel and :welcome:

I do so understand your frustration. It is such a relief when we get diagnosed and we think "great things will get better now". Well, they wil, but it may take a little time.

That said, if your meds are not effective you need to try and see someone - rheumy, GP.. about something else to help you out for a while. If you don't complain then the docs judt don't get how serious it is.

The meds you are on are pretty typical. I would say you have been on pred precisely to help you over this difficult period but it's a pity it's not helping more. Plaquenil is your very important baseline drug but it does take a long time to kick in and to feel the effects. After that, there are other drugs which can be added. Have you been on the plaquenil long? Sometimes rheumies start people on it even before diagnosis. In general, it takes between 6 months to a year to kick in.

The fact that you are having some good days is, in fact, good news. Of course, thay have to become more frequent.

Another thing which is very important is to pace yourself. That is one of the hardest things for us to learn. Mentally we want to get on with life and the days we feel good we tend to overdo it pretty fast.

Unfortunately, although ringing/seeing your doc is important, it is going to take a bit of patience. Not easy, I know, and it is very easy to feel depressed when you feel you're taking three steps forward and two back. it can seem never ending at times.

sending loads of hugs to help you on your way,
:hug:
Katharine
 

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Hi Hazel,

Welcome to the world of lupies.


All the symptoms you experience are the usual, even not having enough energy to do what we normally did.

The meds you are taking are typical cocktails for us lupies. Tweeking them can offer a bit more comfort, maybe less pain at times but getting better is to me false hope. Getting better to me means all symptoms go away. We "improve". Our health and/or pain level may "improve". But we don't get better.
I asked my doctor last visit, since the lupus is in remission can i get off the meds. He said so gently and sensitively, nooooooo,, because u still have the disease.

Well my recent flare is a reminder of that.

Advice. Take it one minute at a time. If you don't feel like doing something then don't,, LISTEN TO YOUR BODY. If you feel like lying down then do so,, sleep as long as you need.
More importantly, don't hide how you feel with your loved ones and friends. If holding your head down at the dinner table helps you compose yourself then do it,, don't be afraid of what they will think.
As a matter of fact they will see each time you are not feeling well and they won't think your faking it and try to get you to do more.

Lastly,, Keep coming here,,we are a great support system and give free advice daily. I've been here for 2years now and i love it

Take Care
 

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Dear Hazel,

Please don't do very much on the days you feel well,it is best to pace yourself all the time. Ask the family to pick up behind them. I know what you mean about heavy things, before my meds. kicked in I used to find wearing shoes too difficult they felt so heavy!
X Lola
 

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Hi Hazel,

Welcome to the boards, this is a great place where you will find a wealth of information.

It can take some time to get the right combination of meds - the one thing I would say is stick with the Plaquinel. It can take some months to feel any benefit but you might find that you can reduce some of your other meds in time.

For me it reduced my facial rashes, joint pain and sun sensitivity.

I wish you well and hope to get to know you better.

Hugz,

Pam xxx
 

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Hello Hazel,

Welcome to The Lupus Site. I am glad that you have found us. As you are learning Lupus is a complex disease and can take awhile to get under control. I hope you have increased the prednisone at doctors orders. Prednisone is a powerful drug and can literally be a lifesaver but it is side effects that become more likely the higher the dose we take. That being said, when I came out of remission I was on 20mg of prednisone for several months and during that time it was up to 40mg for a couple of weeks.

The others have explained that the Plaquenil takes awhile. This is usually why we are on steroids on initial diagnosis as they help control things while waiting for the plaquenil to kick in. Lupus is a rare disease. I do not know the numbers in the UK but in the USA it is around 1.5 million and is considered a rare disease. I am not suprised you know more than the specialist about lupus. We often become teachers about lupus to many doctors who come across our paths over the years. There are lupus specialists in the UK and if you post in the find a doctor forum you will get suggestions.

Feel free to ask lots of questions and if you have time drop into the chatroom for more casual discussions.

Take care,
Karen
 

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Discussion Starter · #7 ·
Many thanks

:) Thankyou to everyone that has been kind enough to reply to my post - it really does help to know there are other people who know how i'm feeling.

I appreciate the advice about the medication and I only increased the prednisone with the consultants approval so no need to worry there. Having another bad day today so it's difficult to type too much but i just wanted to say thanks. I'll be calling the consultant again next week to see what he suggests, he did say to come down to 10mg after 2 weeks but with the symptoms still this bad on 15 I don't think that'd be the right thing to do. I just hope the planquinil kicks in sooner rather than later - as you have mentioned it seems to be the baseline drug that I need to get working.

I hope to talk to some of you in the chat room and will update you with my progress in the future.

Many thanks xxx
 
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