[annie1971]

hi to all

its annie here, i posted a week or so ago, i have just been diagnosed with sle and i thought i would give you an update and ask some advice please.
My gp has put me on plaquinal on the advice of the rumatologist. I have asked for a referral to St thomas's and i am waiting for this to come through. My rhumie is not very forthcoming and said that i have mild lupus with no organ involvement as yet? What does this mean? Lupus is Lupus surely? He has been very casual about the whole thing and doesnt really seem to think my health is a problem. Maybe this is how it appears to me as i am understandably trying to come to terms with things. Sorry to moan but i am trying to educate myself about this thing and he isnt very helpful. I have another appt in a few weeks in the meantime. Just wondered, what exactly does plaquinal do? Can it stop lupus attacking other organs, its all very confusing....also, i am aware i should be avoiding the sun, with summer coming up, is there any particular sunscreen anyone can recommend? I am olive skinned and never really used it in the past. Many thanks in advance, you have all been great and i think i would have gone mad without the help and support on here!!!!


annie xxx

 

[greenhaggis]

Hi Annie,

I'm glad you have started the Plaquenil. Apparently it can take quite a few months to start working (3-9). Perhaps you will be one of the lucky ones that finds some sort of relief in 12 weeks! I started Plaq just before Christmas and am still waiting for something to happen!!

From what I understand Plaq. is given as a disease modifyer, I think, but am not sure, but it is supposed to help keep the disease stable!

I use Amber Solaire Face 50 for sensistive skin on my neck, shoulders and face (head bits too!). I make sure it is applied under any make-up! High factor is only really for these areas, other areas I only use 10-20 depending on how sunny it is! There are many brands out there and if you arn't allergic to any of them then I wouldn't bother with the most expensive ones, just go for the ones that give you a high protection factor! If you do suffer with skin allergies then their are prescribed products available!

Good luck with your next appointment!

Lesley

 

[elisabethm]

Hi Annie my last appointment with my rhumie was the same i was not happy with him as the rhumie i had before him said yes it is lupus I seen him in feb and i am still on the palequine so just like you i think that some of them have more time for you than others he did my bloods xrays of hands feet hips pelvice so i spoke to my own gp and he said i had to stay on the palequine and the rhumie will tell him if he wants to change the meds.I feel i have more support from my gp as he said yes there is something wrong with my bloods as i am also anemic i have been taking iron for months with no improvement It is the same with the sun i love it we go to greece every year and i use a low sun cream but now they want me to go up to 30 did you know that you can get it on prescription the palequine is to heip with the pain i dont know about the organs but someone will post it hope you get more answers at your next appointment best wishes elisabeth

 

[Katharine]

Hi Annie,

As you most rightly said the term "mild" lupus simply means that there is no organ involvement (other than perhaps skin, which, is actually an organ). However, it is a term that most of us would like to see banned as there is nothing mild about the symptoms that people with "mild" lupus suffer from.

Usually if you don't have organ involvement in the first 5 years of the disease, it is unlikey that you will get it later, though, as for everything there are the odd exceptions.

Plaquenil is a disease modifying drug. As someone else said, it does take a few months for any "effect" to be felt but it is a first line of defence drug against lupus and many other auto-immune diseases. It should reduce the frequency and severity of any flares that you may have in the future. My doc described my treatment plan as trying to get periods of gentle rolling waves rather than the peaks and troughs of a raging storm

I hope that helps a bit,
bye for now,
Katharine

 

[Clare.T]

Hello Annie
Congratulations on your diagnosis, so to speak. You have now started on the road to better health, although it might take time to get a clearer picture of exactly how your lupus is affecting you and to get just the right mix of meds to get you stable and the symptoms relieved as much as possible.

When somebody says to me that they have lupus, the first thing I ask is how does it affect them. That's because each of us is affected slightly differently and to differing degrees of severity.
For many people symptoms are limited to joint aches and pains, fatigue, some skin problems and maybe other what's called constitutional symptoms. They live normal lives with their symptoms well controlled by whatever medicines they need and the disease never progresses from its original form.
Those people rarely post on forums because they have no problems.

Most of the already diagnosed people who post here have ongoing problems that are hard to treat. Some of them sadly have progressive forms of the disease. A few have had very serious or still have potentially very serious organ involvement but are making a good recovery and a few are still very seriously ill. Quite a few here go for long periods of being relatively well on minimal meds but then they flare and need heavy duty medicines yet again.

Basically the sort of lupus you have is the symptoms you have and how much they affect you. "Mild lupus" is doc speak and "so far" is irresponsible doc speak because there is no way of knowing how it will develop.
The sooner it is diagnosed and brought under control the better.
It's said that the only predictable thing about lupus is its unpredictability, so it is important to have excellent care

It's a good idea to get a second opinion but try to keep this local contact.

All the best

Clare

 

[Beanbag]

Hi,

I can appreciate your frustration. I myself was under a local rheume who for the past 3 years kept changing from - yes you have lupus to no I don't think you have lupus to I'm not sure. In the end I got so fed up I requested a referral to St Thomas'. I went last October and had a range of blood tests and examinations. Due to eathing probs I also had a lung function test. January 08 I returned for my results and had confinced myself all my symptoms were in my head. To my shock and relief I was diagnosed with SLE/mixed connective tissue disease MCTD. I have a follow up in May and have found the team there to be very helpful and understanding. My rheume down here has also changed the way he talks to me since I have been given a diagnosis from London. I am also on Plaquinel and have been for just over a year - it has helped, although I still need to take steroids. I am recovering from my first acute flare that put me in hospital, been off work now a month and need a walking stick to get about. It is a lot to take in and every person with SLE is affected differently. Keep pushing for an assessment at St Thomas' as they are very good and know their stuff.

Take care
Beanbag:rotfl: :lol:

 

[Clare.T]

Me again
One of the most important aspects of treating lupus is making the necessary adaptations in life & accepting the limitations does not mean giving in to the disease. It takes time to do this, ro realise that if you have a very active day you might need a day's rest afterwards. We need to go easy on ourselves and pace our activities as well as prioritising. I have noticed that newly diagnosed people especially when they have young families tend to go to the opposite extreme, pushing themselves to the limits even to ridiculous lengths. The changes you make depend on current habits of course but can be very small.
If you make puddings, abandon them for fresh fruit. Order groceries and household on line if at all possible.Does your child really need a bath every day or will thorough topping and tailing do in favour of more rewarding and less exhausting cuddle time. And so on ...........
For most people having lupus and managing it well involves some sort of sacrifice of their ideals, willingness to accept any help available and to make everyday life as easy as possible.

As for sunscreens available on prescription I am very pleased with Sunsense SPF 50. It is easy to apply and wear - not greasy or claggy, non perfumed and becomes very quickly invisible. It makes a good make up base too
Howver sunblocks are not the first line of defence - they are the last. The first is avoidance, considering the ever increasing risks of skin cancer this is a neglected matter of public health concern even in the UK. Some people are sensitive to UVA rays, as opposed to UVB, which come through at the same intensity winter and summer cloud or shine. The sorts of sun avoidance times mentioned are often 10 am - 4pm and go out when your shadow is longer than your height.

We can't expect to get much detailed information from our doctors who simply do not have the time. Hence the value of places like this.

Cheers
Clare

 

[LolaLola]

Dear Clare, The info. on shadow longer than your height is very useful.
I always value what you say about sun avoidance. Sun is a sure recipe for me feeling really ill and being off my legs.
x Lola

 

[susie4067]

Hi, I too have mild Lupus!!! whatever that is and I am on plaquenil 400mg x2 daily. I have been on that for a couple of months and do admit to feeling a slight improvement in my joint and muscle pain as long as I do virtually nothing! I did have a large dose of steroids when i started on the palquenil so it could be that that has eased the pain. I dont have to take the tramadol quite so often anyway. I was almost hospitalised at christmas due to a really bad flare but instead they gave me loads of painkillers and diazepam! and alowed home once the diazepam kicked in by which time I wasn't too worried about the pain!!! I spent a month on the sofa unable to move without help and had to be dressed and undressed, assisted to wash my hair and the kids and hubby pretty much had to fend for themselves!! So this is mild lupus is it!! Anyway like I said not too bad at the moment.
As for the sun another point i would like to make is about head protection as I ended up with a bald patch not thinking even though the rest of me was protected so please make sure you where a hat and I also find my eyes are very sensitive to the sunlight so sun glasses also help. But I agree about the year round protection as my dermy told me to always be careful and use a daily moisturiser with sun protection on my face but from march to october use the high factor on prescription.
Take care
Susiex