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976 Views 24 Replies 14 Participants Last post by  Surferboy, 
S
HI Folks,

Firstly, can I just say what a great and helpful site this is. I've been reading through many of the posts on here and it seems there are some top people giving advice, recommendations... and most importantly reassurances and hugs :)

A quick bit about myself now:

I'm a 32 year old male, living in London. I'm married to a lovely lady who will always look after me. I'm currently a civil servant. I absolutely love all my sport - especially football and surfing. Oh, and love my distant family that are Liverpool Football Club :) I'm a keen vegetarian and animal and human rights activist (no cruelty to any of our fellow beings on this earth, which we have but inherited). My only weakness in terms of environmental activism is my love of fast cars and bikes. But I'm trying to work on improving on those sides ;)

Now for the sad stuff:

A few months ago, about 2 weeks after having returned from my first ever skiing trip, I developed severe pain in both my knees, elbows, and chest.

At first I thought "hmmmmmmmm, flu". But the pain just got worse so thought it best to visit my GP. He in turn sent me for a blood test (I'm sure you all know where this is going :rolleyes:)

When the results came in I was devastated. He thought it may be arthritis :sad: This was one of THE worst things I thought could happen to me - I'm a keen sports and outdoors person... I play football, run, pump weights, and my real love I surf.

I was booked into see a Rhumatologist (sorry, can't spell the word :hehe: ). She was brilliant and done all the necessary checks and told me it could be "palindromic arthritis". At first I was totally devastated, but then thought "s0d it, I can live with it"!

However, last Thursday my life was turned upside down when I got a letter through the post from the hospital stating "likeliest diagnosis SLE".

Now, I knew very briefly what Lupus was so... ... ... well, I can't even transfer my initial fears and thoughts onto this thread, but I know all those of you who have it already know that fear.

This was a total spanner in mine and my wifes plans. We had only weeks previously planned on moving to Devon to set up a small business, where I can earn enough money to live and enjoy the rest of my life walking along the sandy beaches with my wife, whilst sneaking in a quick surf or two in the day :wink2:

But now, all of this seems like a distant dream :sad::sad:

I know I must keep out of sunlight so the beach is not a very good idea. Swimming in the sun is also not the best of things to do when you have SLE.

I had a second appt with a rhumatolagist (still can't spell it!) yesterday, who has initially diagnosed me with "mild SLE" - but I know the chances of it deteriorating to a more severe SLE are very high.

I am currently undergoing a 24 hour urine sample as some protein has been found - another excruciating piece of new :(

And to make matters worse, I woke up this morning with the full bout of SLE - both knees aching, wrist aching, sever sore throat, excruciating neck and head pain and a high temperature. No doubt caused by the great (or should that be, not so great) weather yesterday and severe stress.

I visited my GP also today, who has recommended I seek private care as right now my next NHS appt will be in 3 months :eek: Problem is, I'm a lefty and out of personal beliefs I really cannot go and have private care. But then, I also do not want this thing to get a lot worse whilst I wait 3 months for my next appt. What do I do :worried: :(

Never have I been so worried about a poxy high temperature and sore throat :sad:

Any how. Mustn't get too down. Gonna still try and live life as much as possible. And I'm hoping we can all offer each other support.

Here's to a brighter future :)
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O
:)Hi, nice to meet you :)
I myself havent been diagnosed with lupus yet, awaiting on bloods and follow up appointments :rolleyes:
I just wanted to say that i am (or was) a keen surfer too and i havent been in for about a year :worried: I still have major withdrawls and now its summer and the waters warmer its just torture not being able to go in, I still havent given up on surfing again in the future hopefuly once i become more stable.
I myself have just been to see a private consultant, which i had been debating about for a long time, however finally decided that i just cant wait for the NHS any longer as the next appointment i could get would have been December, which is ridiculous! so i went private and got an appointment within 2 weeks. I would recommened going to see a private consultant even if its just to start you on the meds and then switch back to the nhs (which im hoping to do :))
Anyway good to meet you, keep smiling,
Bex x x x x
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G
Hi SurferBoy,

Welcome to the site!

If you have not been prescribed meds then I would ask you GP to phone your Rhuemitologist and let them know how bad your symptoms are! Between them and your next appointment they should be able to sort out your care! If GP wont do it phone your Rhuemies sectretary and vent at her about your symptoms and ask her to get the Rhuemy to sort something out before your next appointment.

I find it very odd that your GP has suggested that you go private!

You have a diagnoses and should be being treated with meds (perhaps you are) - Plaquenil the baseline drug and NSAIDS and perhaps a short course of steriods if thins are bad!

Take care!

Lesley
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M
Welcome to the site - but of course sorry for what brings you here. Much like you I had a quick diagnosis and was about shellshocked after I got to my car following my GP reporting my blood results to me and how I needed to see a rheumy for probably lupus.

I think if anything untowards shows up in your 24 hour urinalysis then the rheumy WILL contact you and get you seen sooner. Otherwise, definitely become the squeeky wheel and be sure to get some medications on board that will help you through the flare you may be in right now.

It is not always true that aching joints combined with fever means lupus is active. I've had several 2-5 day viral infections/bacterial infections in recent years that gave me a high fever (low fever is actually much more indicative of a lupus flare than high fever), massive head/neck ache, and major joint pain for example. In cases where there is high fever and symptoms consistent with some sort of infection, I usually give it a few days unless I know it's a bacterial ear/nose infection then I seek care right away.

I don't think your dreams are dashed yet... many people with appropriate treatment live very full and fulfilling lives including lots of activities. While it would be best to avoid the sun especially at peak times, there are still morning and evening hours where you could surf if your joint pain eases and you otherwise felt up to it. Only about 1/2 of lupus patients are overtly/obviously sun sensitive with rashes and worsening flu like symptoms with sun exposure.

These are still early days for you... even if there is kidney involvement there have been many people treated for it and then enjoyed years of good health afterwards. I just want to encourage you to stay as positive as possible. ;)
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S
HI

Quick hello as a bit tired today.
Just to make you feel a bit more positive I have mild SLE and rheumy says all the signs are I had my first flare at 16. I am now 53 and have always just had mild SLE. Yes I know that could change but not a bad innings, especially given how ill I was as a teenager and that noone knew then what was wrong with me.

I have also done 5 of those 24 hour urine test (carrying those hateful bottles heavily disguised on the bus) and not one of them have turned in worrying results. I always have a bit of protein in my urine but so far it has not got any worse!

You sound very positive and you have lots of support which is great.

I am surprised your GP said private care, maybe you are not in a good NHS area? I go to a great lupus clinic all courtesy of NHS. The only private lupus clinic is in London I think.

Welcome again to the list
Sara



Sara
x
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S
Welcome Welcome Welcome...

Hate hearing the news... but glad to know you are staying positive. With that attitude you will be a GREAT addition to the boards.

Hang in there... you will be amazed at the amount of people on here that may be experiencing the same symptoms on you... Hope you get what you need on here and hopefully you will be able to help someone out yourself!

Have a wonderful day!!!! :rotfl:
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K
Hello there :)

I too am tired and not at my best but wow, what a nice long and fun introductory post!

I'm sorry to hear of your troubles and diagnosis but I am confident that with treatment your initial worries should soon be a distant memory.

Many many people get treatment and go back to living pretty "normal" lives with their lupus. They may make a few adjustments and avoid certain things (unecessary sun exposure for example) but they really do get that well. If you take a look at the number of members here you'll see that there are oh so many who don't post any more. They're off living their lives, far too busy to come here. Hopefully you'll be one of those.

Of course the difficult thing about this disease is its unpredictability. No-one can say how thing will go for you.

I also agree that many people have "mild" lupus their whole lives.

I think from your post you haven't yet been put on any medication. You will most likely be put on plaquenil which is a disease modifying med with very few (or most often no) side effects. It takes a while to work, often between 3-6 months, sometimes as much as a year but I would like to see you reevaluating those dreams of yours at that time.

There are also loads of sun protective measures you can take, including covering up, surfing at dawn and dusk - nothing better!!

Doors open and close all the time in life but each new door leads to others and I'm sure you have the attitude that will make the most of each one.

As for what to do about private care. If someone else were in your position, someone you cared for...what would you say to them?

speak soon,
Katharine
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keebler
Hi Surferboy,

Welcome to the lupus site.

You already have been given great advice. I just wanted to tell you I know how you are feeling about the 24 hr. urine catch. I just went threw that not to long ago. All came out ok. Try to think postive thoughts but I know that is a very hard thing to do.

My brother also has SLE like me. He is doing good, and working at a job. He also has a very caring wife.

Take care and tell you wife hello.

Lyn
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M
Never give up the ship

Hi Surfer boy and your wife,

So sorry your diagnose has stumped you. :eek:Good you have had many welcoming and comforting posts before me.
Welcome to our site- I realised lupus etc on 24Jan 2007, and promptly found this site, finding its Search and other posts of so much info, helping me to find as much info as I needed, and moving me onto other sites and online boards, Chats as I needed them:wink2:.

Yep, sometimes we don't know what is ahead of us, but I have found that I take one day at a time, and get where I want anyhow.
Luckily I had 37 years of normal life as a teacher, :rolleyes:rearing 4 children, helping a husband with many troubles, until -out of the blue came a whopping aneurism, flown down south, I live on the northeast coast of aussie, recovered ?after 6 weeks in hospital, back teaching, within 4 months, kids leaving home, 5 years later a seizure, recovered from that, back teaching- studying, I divorced.

Down south doing a Masters of Ed, to Papua New Guinea teaching, lecturing- another stroke- :sad:no speech- graduated.
Back home, teaching self to speak- back teaching, began PhD-fighting for that- just revising, then- came symptoms :mad:for 5 years- until then I knew and have fought to get d/x, getting there now- so many specialists as none here.

So we have to be happy- overcome all-:hehe: even by self sometimes- but my online friends- none in Aussie- in UK and US help greatly.
Yes, is a nuisance not to be out in the sun, but somehow I am managing- gardening, walking etc in early/late hours. The symptoms are all different of course, sjogrens, raynauds, kidney, hand, feet, arthritis, scalp, abdo distension, eye probs, wight etc. Plaquenil since Sep has :blush:helped slightly, but other probs emerge all time.

So we have to be problem solvers to overcome all these things- to help others if possible- to make the best of what we have.
It's early days for you- to get over the shock- somehow we do:sad:-we all remember.

I look forward to your posts- i love the way you told us- re before and after and that's why I have posted for you, :rolleyes:All the best
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S
Guys and Girls, thanks so much for all your kind and helpful replies.

Bex Surf, as much as I hate to say this, it's good to have a fellow surfer on board. But I do wish you didn't have the need to be here. At least we can have some surf talk :) Where abouts in the UK are you?

Sjink, you say you've had mild SLE and many 24 hour urine tests which came out fine. But by "fine" do you mean NO protein found? In my normal urine test protein was found, which is why I am so incredibly worried :( I have no doubt what-so-ever that protein therefore will be found in my 24 hour test:worried:

Oh, and an update from my symptoms from yesterday:

Aches and pains still there and walking with pain. BUT, temperature has gone back to normal :) Sore throat receded slightly :) Neck pain also receded slightly :)

As for the GP/Private thing... my GP is quite a nice guy and I think he saw the horrified concern on my face and thought 3 months is a stupid amount of time to sit and worry.

I have some other question for you folks re sun, and medication, but I think I'll go and post them in the correct section. It'll be better and useful for other who come on here to search for info :)

Again, thank you all for your support X
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C
Hello surferboy
I am very sorry about your diagnosis and especially the effect it my have on your favourite leisure pursuits.

Most people with lupus have a certain amount of protein in urine from time to time.There are other possible causes too. It's only certain levels that cause concern above 3 off the top of my head. You have to take the view that it's a good thing it has been checked and no doubt can be brought under control if there is anything amiss

There is no obvious reason why you should have to wait several months to start treatment. In fact it amounts to negligence.

Of course the decision to speed things up by going privately is very personal although my way of salving my conscience is that sacrificing my own best interests especially when it comes to good health and my whole future, for a cause, wont actually help that cause. Better to be alive and well !
You might decide that one way or another you aren't getting the best treatment available. A good GP is very important as they are usually the only way to contact the specialist, but you can try to contact the specialist yourself to say you want to start meds at once.

I don't think you are right about the chances of developing severe lupus being high though it rather depends on existing symptoms and statistically on what antibodies you have - the presence of anti ds DNA is more likely to lead to more severe forms. I have read that the majority of cases stay the same or improve. There is no doubt that the sooner treatment starts the better the outcome.

Start finding out why you got the lupus diagnosis the better informed you are the more empowered you are you to make decisions and make sure you are getting the best treatment available as well talking with your doctors.

Diagnosis is very shocking at first and one naturally thinks of the worst scenarios. Diagnosis can mean profound life changes but living well with this disease is also a question of adapting and coping. It is important to have dreams to hold fast to but it can take time to accept and adjust.

All the best to you

Clare
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S
Hi Clare. Thanks for your reply.

Regarding what you say about the presence of "anti ds DNA" - is "anti ds DNA" the same as "DNA"?

The reason I ask is my DNA count came to 48 - which is considered pretty high. And my ANA was 1/1280 - which is considered high.

And did you mean that even with a NEGATIVE "anti ds dna" cases stay the same or improve? Or does this also apply to positive results?

Also, after a lot of thinking, along with your way of seeing going private, I think I may just book in a consultation. Ask the consultant my 3 page list of questions. And see if I need to go onto any medication.
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G
Surferboy,

Before you book a private appointment I suggest you still phone your Rhuemi's secretary direct and get her to put the question across about starting medications prior to your next appointment. A few phone calls is much cheaper than a private consultation and even you GP should be trying to do this for you unless of course he's being lazy (his lazyness in my opinion is going to cost you YOUR money not his).

It seems bizzare to me that you have been diagnosed and would only being seeing someone private just for a prescripttion to be issued.

There is also no reason why you GP can't just start the Plaquenil. Many GP prescribed Plaquenil without it being suggested by a specialist.

I wish you luck anyway!

Lesley
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S
Hey Lesley,

Thanks for your suggestion. Thing is I called the secretary yesterday only to ask for my xray results (which the consultant forgot to tell me)! She wasn't too helpful.

Also, not only did the consultant not give me my xray results, but he was also absolutely rubbish at giving me any kind of real info about Lupus, talking to me, trying to give me any kind of reassurance etc etc. All he seemed like he wanted to do was get me out of the office :(

That was one of the reasons for me seeing my GP - to put all my questions to him. Alas, my GP was a little reluctant to go into too much detail with me as he did not have "substantial knowledge of SLE" to be able to discuss it with me. Also, he did not have enough authority to prescribe Plaquenil which has not been initially prescribed by my consultant. Arghhhhhhhhh!

Therefore, he suggested that rather than wait 3 months in agonising worry I should go see a private consultant. Now, wait for this.... the first consultant I saw (when I though I had arthritis) also runs a private clinic, and she would have more than enough time for me there... and for my £200 :mad:

I think I'm going to try and rush an earlier appt with my NHS consultant. If I fail, I'm afraid I may have to sacrifice my beliefs :sad: and :mad: at myself
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G
Surferboy,

I must admit i have never had a conversation with specialists or GP about what SLE is and how it may effect me - nobody ever offered the information and I was always to shellshocked to ask.

All my knowledge has come from this site and the St Thoms site and a little now from my own experiences.

I would still try again with that secretary though - think of her as your emplyee! We pay into the NHS so she's employed by us to provide a service! Her service is to get the specialist to hear how your feeling and what you want to happen now.

You could always ask her for direct fax no/e-mail address for the specialist and send your own communication confirming what was said in conversation with her and what you would like to happen next.

Basically just be pushy in a polite way!

Lesley
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S
Hi, about those 24 hr urine tests. Every time I have the usual urine test done it is positive for protein, but every time the 24 hour one has been done there is insufficient protein for it to be a worry. I have been going to the same lupus clinic since 2001 so that is probably over 28 urine tests and 5 x 24 hour tests minimum. The rheumy will order the test (as will the lupus nurse) as a precaution if the protein is over a certain level. I asked about it last time and the nurse just said "Sara you have had protein in your urine since you started here"!
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B
Hi Surfer and welcome to the lupie community:worried:

Have you read through the section on blood tests on this site? It is very clear and comprehensive and has always answered my questions.

As Clare says find out the criteria that lead to your diagnosis since some antibodies are more inclined to certain symptoms.

For example anti Ro and skin issues, anti Sm and muscle issues, antiDs DNA and neuro or renal issues. However lupus is not an exact science and I'm sure this is over simplifying......... it pretty much does what it damn well pleases:rolleyes:

I absolutly agree with the others about getting on some medication, not only to improve your current symptoms(eg NSAID) but to try to modify the disease (eg Plaquinel.)

A note from my own experience:
When my symptoms took a turn for the worse last year my Ds DNA went up to 200 and sed rate 105 while waiting to see my rhuemy. Cant help but wonder if I could have avoided getting so sick if I had been prescribed Plaquinel when my lupus was still very mild, since it is very much about prevention. As it is I feel lucky to have got away with my kidneys intact:eek:

Don't rely on luck Surfer.

Take care
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L
Hi Bigsis,

You aren't confusing Sm (Smith) antibodies with Smooth Muscle Antibodies are you?

http://www.clinlabnavigator.com/Tests/SmithAntibody.html

love
Lily
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C
ASMA antibodies have nothing to do with skeletal or cardiac muscle anyway.
From lab tests online

What is being tested?
This test measures the amount of anti-smooth muscle antibodies (ASMA) in the blood. ASMA are proteins produced by the body’s immune system to work against its own cytoskeletal proteins. The production of ASMA is strongly associated with chronic autoimmune hepatitis but may also be seen in other forms of liver disease and with other autoimmune disorders such as primary biliary cirrhosis. Autoimmune hepatitis presents as an acute or chronic inflammation of the liver that is not caused by another discernable cause (such as a viral infection, drug, toxin, hereditary disorder, or alcohol abuse). It can lead to cirrhosis (liver damage and scarring) and, in some cases, to liver failure. Autoimmune hepatitis can be found in anyone at any age, but about 80% of those affected are women. In the United States, more than 80% of patients with this disorder will have ASMA, either alone or along with ANA (antinuclear antibodies). Anti-actin is an antibody targeted at actin, a specific cytoskeletal protein. Some recent studies suggest that it is a more specific test than ASMA for diagnosing autoimmune liver disease, with about 52% to 85% of those affected having the anti-actin antibody.
Click to expand...
Anti Sm ( Smith) is very specific to lupus and more common in blacks than whites. It tends to be associated with more serious disease.
There is nothing certain about lupus: " the only sure thing is its unpredictability" to which one might add "variability" in several ways - how people are affected and to what extent, as well as the course of the disease. It is the symptoms that make the disease, not the presence of antibodies per se.
Other indicators of possible kidney involvement are low complement levels which can also be used to indicate disease activity if need be although they aren't so often measured after diagnosis, and an enzyme deficiency C1q. I seem to remember reading that anti ds DNA levels can fall when there's a renal crisis.

It's said that usually renal disease and other severe disease develops in the first 5 years if it is going to. At the other extreme, I know somebody whose skin lupus ( SCLE type) went into remission for many years only to surface again in the form of nephritis without skin or any other typical lupus symptoms except feeling very unwell. There is a case of discoid which morphed into nephritis after 23 years remission.
So it can be sneaky and we have to be ever vigilant making sure we get regular checks for hidden developments such as kidney, liver or blood, whether caused by disease or meds, and that we know what the signs might be of worsening disease.

Cheers
Clare
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S
Oh :( I'm confused and worried again :(

Bigsis says Anti ds DNA is Neuro & Renal. That's the last thing I want as my DS DNA was 48 :(

Let me go look at the blood test section on this site.......
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