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Hi
I'm new to this and feeling a bit bewildered by things at the mo and just wondered if anyone could help.

A couple of weeks ago (on a Saturday/Sunday), I started to feel as if I was coming down with what I thought was a flu type bug. Nothing too serious, but my body was achy, bad headache and sore throat, feeling hot and cold. (This had followed a few days of really hot weather and lots of sunbathing). I took paracetamol and carried on trying to fight it. On the following Tuesday I woke up with a nasty looking rash on my chest and arms. I went to my GP on the Wednesday who said it was some sort of allergy and to take anti-histamines. I carried on with these but the rash was starting to blister and also started appearing like small spots over my legs (which were quite red, puffy and sore). By the next Sunday I was so ill that I had to go to an emergency Dr at the local hospital. I saw two Drs there but neither of them were sure what it was. They prescribed me 30mg of prednisolene and said to return to my GP the next day. I did this and she referred me to a Dermotologist who I saw the next day thanks to private insurance. He took two biopsies and prescribed me 30mg prednisolone a day for a week. I had a follow up yesterday and he said he said that although my ANA blood test came back negative, he is convinced it is Lupus and is planning on treating it as Lupus. He's left it that I've got to take 25mg a day for this week, 20mg a day next week and then go back to see him. The rash is finally clearing although hasn't gone but it's only been today that the achy feeling in my ankles, knees, hips is starting to ease. I was beginning to wonder if I'd ever feel normal again!

Sorry for the long post but I just wondered if anyone has any advice and whether they think it may be Lupus. I hadn't really heard of it before but have been reading up on this site and a few things from the past are making me think that I may have it but how can the consultant be sure without a proper diagnosis? Would be good to get your thoughts. Sorry for the long message - hope you are still reading!
Suzie
 

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Hi Suzie

Welcome to the Forum but Im sorry about what brings you here :hugbetter:

It is possible to have sero negative Lupus - about 3-5% of patients will present like this (i.e. blood tests dont show antibodies but all clinical symptoms will scream an autoimmune disorder). A lot of times people like yourself will get a diagnosis through a skin biopsy. You didnt mention what the results of the biopsies were - just that your ANA was negative. Did he say he suspected Lupus because of the biopsy results? It would be good to ask him this question.

We have some members here in your situation (negative ANA) and Im sure they will be along soon to share their experience so keep checking back in. The other thing to remember is that the ANA can change over time and some members here have had ANA negative for a long time and suddenly it has come back positive.

The good news is that you have a very enlightened Dermatologist who is open to the possibility of Lupus. Also the fact that you responded so well to the prednisone would be a good indicator to him.

It would be a good idea to talk to your dermatologist and GP about a referral to a Rheumatologist. These are the people who specialise in autoimmune problems and given your other symptoms (joint pain, headaches. etc) they will, Im sure, want to run a range of other antibody tests called ENA panel (extractible nuclear antigens). Some specialists wont go any further than the ANA if its negative but others are more enlightened and will seek to determine if other anti-bodies are present. Sounds like your Dermy is a good one and you could talk to him about further testing.

In the meantime stick around here and we will help you all we can.

If he is treating your condition as likely to be Lupus he will probably put you on a medication called Plaquenil to see how you respond. We can help you understand how this works and what to expect. In the meantime please keep out of the sun as much as possible as it is a known trigger for Lupus flares. Its not just the problem it causes with the skin issues but the underlying damage that is being done due to inflammation anywhere in the body - hence the joint pains, headaches, fevers, etc.

If you need any further help or advice about your upcoming appointment please feel free to ask.

Take care for now and Im glad you are starting to feel better.

Joan:rose:
 

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Joan is absolutely right about sun avoidance. Please take it seriously as it can make a huge difference. There is plenty of advice here.
Sunscreen and a hat are a good start. (Not a lacy type hat, something with a close weave gives more protection). Oh and by the way, Welcome to the site.
x Lola
 

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Thanks for your helpful replies.

My consultant warned me about being extra careful in the sun. Yesterday I slapped on factor 30 suncream on face, chest, arms etc. Do you think factor 30 is strong enough?

What I can't understand is that I have always loved being in the sun and never had anything so drastic as what happened in the last couple of weeks. I used to just get a lot of mouth ulcers and always seem to end up feeling ill on holidays abroad. Just can't understand why it has been so bad in the last couple of weeks.

After starting to feel better yesterday I've woken up today and can hardly put any weight on my ankle and my knee hurts (only left leg though!).

Sorry will stop moaning now!
Thanks
 

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Hello there and welcome :)

I am one of those ANA negative people Joan mentioned. I was diagnosed through a skin biopsy. I presume you haven't yet had the results back on those. I think they take arund 2-3 weeks.

The sun plays a major role in lupus and will cause inflammation, triggering the illness.

Top rheumatologists recommend factor 50 or higher and basically covering up. They also recommend that sunscreen should be worn every day, including in winter and even inside. Obviously if you are out in the sun, it needs reapplying more often. No sun screen is 100% and all need renewing very regularly, which, when all over the body, is hardly practical. Basically, it is best to wear clothes which protect from the sun without fogetting that a normal white T shirt only offers a SPF factor of 7. Dark colours protect better and the closer the weave of the fabric, the higher the rate of protection.

You can also find sun protective clothing offering up to SPF 50 protection(you can google that) which is especially useful for any outdoor pursuits like walking, cycling etc.

I have become more careful about sunscreen and now wear it even if I'm not going out (I avoid sunny days as much as possible). I have noticed that I feel less tired and achy when I'm careful about it.

Prior to your sun incident did you also have other symptoms which maybe you ignored?
Oh and you're not moaning, don't worry, feel free to moan, vent...

bye for now,
Katharine
 

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Hi and :welcome:

I am sorry you've had a rough time lately but it's good your dermy is on the ball. I too was a sun worshipper then started having small changes like mouth sores, heat fatigue, dizziness etc. It sounds silly but I was devastated to be told not to go in the sun - you know what....it's not the end of the world and you adjust. There is always fake tan! :)

As for the ANA test - I had 4 negative results if I remember before my one and only positive result. I've never had one since but it was enough to get my diagnosis. For months before my diagnosis my Dermy kept referring to lupus due to some of my other test results that indicated something going on. Did the doc mention any other test results to you? One of the other tests he would have carried out is an ESR or Sed Rate - this shows the level of inflammation in your body. Don't be scared to ask your doc for copies of your results and read the threads here on how to interpret them. I never thought I'd know the things I do now. :hehe:

Keep in touch and let us know how you are.

Hugz, :hug:

Pam xxx
 

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Thanks for your replies.

I've been feeling much better the last couple of days. I'm still in pain with my hips, knees, ankles and toes(!) but nothing compared to how I felt on Friday. I'll just be glad to get to the appointment on 8 July and find out what happens next.

We were out doing gardening yesterday but I was well covered up and went in everytime the sun came out and feel ok today so I know it will be manageable. I'll just have to be careful.

I'm so glad I found this site. Without it I think I would be going out of my mind with worry. I know it sounds silly but I said to my husband, I'm worried that people think its not a "proper illness" that I'm suffering from because it hasn't been diagnosed properly but it certainly feels bad at times. I dread people phoning to ask how I am because I don't want to tell them that its another bad day and them thinking I'm moaning. Hope some of you may understand that.

Thanks again
Suzie
 

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Hello Suzie

I think we have to find out through experience what we can do and what we can't. It's all part of learning to live with the disease. It can take a long time to pace yourself, prioritise, adapt and accept.

Look for a broad spectrum sun block against UVA as well as UVB. The SPF is only for UVB and it's now realised that UVA can harm the cells too and aggravate disease activity. I agree about wearing it all the time, winter too. UV can come through windows while UVA comes through at the same strength regardless of season, cloud or shine. Some people seem sensitive to UV domestic lighting- fluorescent, halogen and energy saving- and UV lighting in the stores.
Protect your eyes and don't forget tops of feet. Ears should be covered by broad brimmed hat.
I hope you can find the right solution for you as it is a very distressing to have to forgo outside activities

These days, nobody should be out and active in the peak UV hours and everybody should be suitably protected because of the skin cancer risk which is rising horrifically year by year despite all the warnings.
This is one aspect of therapy that we alone are responsible for. I read the other day that Dr Wallace (US lupus expert) says photosensibility can decline as one grows older. Apparently it can also wax and wane just like the disease itself.

Most of us don't talk about our illness and use polite responses to keep the enquirer happy, such as "Getting along all right, thanks" in a cheerful tone of voice. Having a chronic disease sure sorts out the real friends from the false ones. Even caring family members can only take so much.

That's why the forum is so helpful and comforting :)

All the best
Clare
 

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Hi Suzie,
Just wanted to say welcome and sorry you have been under the weather.
I hope you manage to get to a diagnosis soon and can begin to feel better.

Good Luck

Take Care

Cassie :)
 

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Me again! :)

few things from the past are making me think that I may have it but how can the consultant be sure without a proper diagnosis
There are very few specifics for a lupus diagnosis, but biopsy proven skin is one of them. The dermatologist might be good enough to be quite sure it is lupus. That's what happened to me. Looking back it was amazing because my skin problems were not at all typical at that time, so I conclude she really knew her stuff. Diagnosis took two minutes confirmed by biopsy a couple of weeks later.

The signs you mention can also be very important since lupus has often been simmering away for years before the dots get joined. Make a health history leaving nothing out, not even ob/gyny problems, and a note of chronic health issues of close blood relatives.
Have a look at the Criteria lists on Not Yet Diagnosed section to see what you can relate too. I suggest reading the diagnosis and tests articles on the main forum site.
Diagnosis is clinical so a positive ANA is not always essential if there are enough other signs and symptoms, and other disease possibilities have been ruled out.
Other antibody tests should be done because occasionally there can be others present even though the ANA is not detected. Make sure urine has been tested.

Let us know how you get on - if the doctor is sure you will probably be started on Plaquenil.

By the way you can get sunblock on prescription in the UK.

Bye for now
Clare
 

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Dear Suzie,
No one here will think you do not have a "proper" illness without a diagnosis. Many of us waited years and endured symptoms, some here were even made to feel they were mad, or just "wanted" to be ill! Yes, the people here do understand, so keep posting. It can be very hard to know what to tell friends especially as you are still trying to accept it yourself. All I can say is confide just a little in your friends until you see that they can be trusted not to hurt you with inappropriate remarks. Pour it out here, we have all needed to sometimes.
X Lola
 
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