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Discussion Starter · #1 ·
Hi im new to this site and thought id introduce myself im Eloise and from Stevenage in Hertfordshire england. Im 29 years old and a wife n mother of 2. Ive been diagnosed with lupus about 6 months ago and having rather a bad time with it. I also have raynaulds which ive had for 13 years approx. Ive been looking around this site and it has been a massive help to me and my family. not sure wat else to say at mo so i shall just say HI !
 

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Hello Eloise and welcome to the site :)

This site is a great place for information, advice and support.
Did your treatment also start 6 months ago? What treatment are you on?

I had a pretty tough year last year and felt that it would never end. I have been ill for several years but I was only diagnosed in April of last year and it has taken until now (end Jan) for me to feel a major difference from the meds.

I hope that you too will soon find relief from your treatment and things will get a little easier for you.

bye for now,
Katharine
 

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Discussion Starter · #3 ·
Hello Katherine

Thankyou for welcoming me to this site.

My treatment started beggining of Jan but as of yet not making any difference, im on Hydroxychloroquine, I think thats for my Raynaulds. Im also on citalopram for the depression but have been on this for 3years.

I to feel that this will never end what treatment are you on?

Eloise x
 

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Hi Eloise

Welcome to the Forum. Its very early days for your treatment to start taking effect. The drug you are on (brand name Plaquenil) usually takes between three to six months before effects are felt. Some people say it takes even longer. The effects can often appear quite subtle as they happen over time and indeed some people have felt it was not doing them any good only to come off it and find out different;)

The other thing to consider is that the Plaquenil alone might not be enough to get your disease under control. Its often necessary to hit it hard and fast in the early stages of diagnosis. What are your main symptoms at the moment? Is it joint pain for example? If so, a lot of us use non steroid anti inflammatories (NSAID's) along with the Plaquenil and these can be good for reducing inflammation and pain. Indeed its often necessary to begin a course of steroids (prednisone) which also aim to hit hard and fast at inflammation in the body.

When are you seeing your Rheumatologist again? If its not quite soon why dont you give them a call and explain that things are not improved for you. Often they will prescribe something additional to help with the symptoms while the Plaquenil is starting to do its job. Symptom control is every bit as important as disease modifying drugs (like Plaquenil). Quality of life is critical especially when you have two little ones to look after :hugbetter: Sometimes we need to be very insistent in order to get the help we need.

We will try and help you all we can. Its hard coming to terms with the diagnosis of a chronic illness like Lupus but the great thing is that you have found this site and the wonderful people here who can share their experiences with you.

Hope to hear from you soon
Take care for now
Joan:rose:
 

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You are still in the very early days... it usually takes at least 3 months for Plaquenil to help and 6-9 months for it to reach it's full effectiveness. If Plaquenil is not enough - then other meds can be added now or in the coming months. Be sure to keep your doctor updated about how badly you are affected by the various symptoms as only then will other meds be considered to help you.

Have you tried any NSAID's yet for the pain? Has a quick burst of prednisone been mentioned? There are options out there to help you quickly and also for the long term improvement of your condition.

Hope you're feeling better soon!
 

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Hi again Eloise,

I think the others have really answered your question.

I was started on Plaquenil (as a baseline treatment for lupus) 10 months ago. As it does take a long time to kick in, I had to add prednsiolone to that mix as I couldn't walk at that time from pain.

About four months ago imuran was added to the mix. It started working two months later enabling me to start reducing (with a view to eliminating) the prednisolone dose I was on. I then continued to improve and have now been what I would describe as really well for about three weks :)
All that really just to say that it does take time and that there are different treatment options (far more than I mentioned) if your symptoms are not suficiently controlled. I felt like it would never end too but it did (10 months later) and although I will always be a bit tireder and slightly more achy than someone else, I can certainly live with the way things are now compared to what they were like.

You will get there! Give the plaquenil a chance to start working. If it gets too bad in the meantime, make sure that your doc always knows exactly what your symptoms stop you doing. Saying "it hurts" is rather a vague notion for them. Saying "I can't do X because of the pain" tends to work better.

all the best,
Katharine
 

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Welcome Eloise
I am glad you have already found the site useful and especially that your family has too. Dealing with family and friends is a major difficulty for most of us.
You ( and they ) might be interested in the various 'letters' pinned at the top of Family and Friends section. They give mutually useful ideas how to manage the various problems that can arise, such as well intentioned people suggesting 'cures' and natural remedies. So they increase understanding of how to communicate with people with chronic conditions.

I think you should start informing yourself about your lupus by getting blood test results and learning about treatments and so on so that you feel empowered by greater understanding. The forum is an ideal place because there are many very experienced and knowledgable people here who can save you the labour of trawling through sites and trying to deal with vast amounts of information.
For example Plaquenil is a very important disease modifying medicine. There are other treatments specially for Raynauds and just as important ways of managing it.

I am wondering when your next appointment is. They took long enough to start you on the Plaquenil and they should have suggested medicines to take the edge off while waiting for it to work. Prednisone and NSAID's are the most usual. Maybe your GP could help there.

It is very easy to underplay how much pain there is because we are so used to getting on with things and putting up with and conditioned not' to complain'. The idea of describing the effect the pain has on your daily life is very good. There is no reward for heroism just the possibility of suffering, you and your family and a poorer quality of life than necessary

Bye for now

Clare
 

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Hi Eloise
I'm in a similar position to you (except that I am 10 years older:rolleyes: ) I'm married and have two small boys and I was diagnosed with SLE in November last year. My consultant is slowly prescribing treatment for me, I'm not on Plaquenil yet but have been trying to manage with anti-inflammatory's, cortisone injections in my elbow and two steroid injections. All the other posts have given great advice and I hope you feel better soon. I'm new to this too but have found this site and everyone on it very helpful already.
Take care and don't give up hope, things will get better.
 

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Hello Jackster

I strongly advise getting on the Plaquenil as soon as possible. It is a most excellent medicine with many beneficial side effects and most importantly modifies disease. Studies indicate that people who are on Plaquenil do better than those who aren't, in all respects.
You shouldn't have to " try to manage". There is no virtue in not taking the correct medicines only the risk that the longer the disease is uncontrolled more medicines will be needed.

Cheers
Clare
 
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