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321 Views 7 Replies 7 Participants Last post by  JAGGS
Hi all

I was diagnosed with SLE Nov 2008, however my first spell in hospital was 2002 when I calapsed with Intercranial Hypertension. Presenting with temp lost of vision and disabling migraines, I endured 3 lumbure punctures and took lots of meds finally discharged march 2008.

Since 2002 I have visted my GP almost monthly with numerous complaints most of which have been diagonosed as a side affect of IIH - until June 2008when I had a very nasty rash that left me with no skin on sun exposed areas, eventually Oct I was diagnosed by a skin biopsy with SLE.

I am currently off sick from work and have been since Dec 2008, things got so bad that I was unable to do anything for myself and unable to look after my 2yr old as in constant pain that brought me to tears.

Eventually I saw a Rheumy and prescribe meds and things settled, but now the steriod dose has been lowered and the joint pain is returning.


Meds prescribed: Prednisolone 10mg/ Azathioprine 50mg/ Plaquenil 400mg/ Brufen Retard 2400mg/ Co-Codamol 2400mg

My Rheumy hasn't explained anything to me other than to confirm SLE diagnosis, tell me IIH was a Lupus flare, stay out of the sun and I am unable to considered having another child at this time?

Well thats most of my story, sorry to carry on, what does it all mean and has anyone else had similar experiences and what else should I ask the Rheumy?
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HI Jaggs

Hello and welcome to the board Jaggs.. I was diagnosed same month as you and am also coming down off steroids after a sun induced flare whilst on holiday at Christmas.. I am down to 5/7.5mgs alternate days but beginning to ache and joints sore, but on and off... rather odd. I take plaquenil too but only since beginning of December and have been told it can take up to 9 months so not giving up on that one yet, hope it kicks in a bit more effectively. Were you put on yours in Dec too? I was working for our family business but my husband has effectively 'sacked' me saying he doesn't want me to be stressed... which makes me worry that he is coping!!!!:lol:
Keep in touch with your Rheumy and let him know if the pains are coming back continuously, write a journal of your pain and activities etc and score it out of ten to give you an idea when looking back of how often, and when you are in pain etc etc. Don't be in pain for too long without getting some help either via your GP or direct with the Rheumy (preferable).
Take care and hope it all settles.
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Hello Jaggs and welcome :)

I'm sorry to hear what brings you here.

It sounds like you haven't yet built up a relationship with your rheumy. That is something important to do and knowing a little more about your illness and your treatment will help you to ask the right questions and hopefully build that relationhip.

It is important to remember that when a rheumy (or other doc) says "see you in three months" that is fine if all is well with you. If it is not, you need to be getting back in touch with the rheumy and tell him how things are. We often hesitate to complain and seem to think that we have to put up with whatever is going on. Some things can't be fixed but a lot can and if we don't keep the doc informed they won't be.

Another thing here is that you are very early on in your treatment. I know it may not sseem that way to you but it does take a while to balance all our meds to each individual's needs.

In your medication I am wondering why your azathioprine dose is so low. Have you only started on it recently? Has your rheumy mentioned increasing the dose gradually (it is introduced slowly to reduce any nausea side effects you may have in the beginning)? Most people (depending on body weight) would be on a final dose of around 150mg. Azathioprine takes around 6-8 weeks to work fully (when you're up to your right dose). Plaquenil, which is your baseline med (and a very important one), takes a lot longer to work, often between 3-6 months, sometimes longer.

Your medication suggests that the rheumy has taken you seriously and listened to the problems you have. The fact that you have had such quick (if not lasting) relief is a good sign.

It is a good idea, when you go and see the rheumy to actually write down the list of questions that you have. Many of us seem to suffer from white coat syndrome when we go in and suddenly forget all those important things we wanted to know.

The pain journal already mentioned is also a good idea. It really helps to see things written down.

Hope that helps a bit,
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Hello Jaggs,
There is every reason to suppose that your condition is going to improve. I am certainly not denying that it is very, very hard for you at the moment. The others have given you good advice. This is a reliable site, but I should say to you that some Lupus information on the internet and in books is outdated and gloomy. Best be discerning where you look.

The sun avoidance is really very important. Not just for skin but for how you feel all over. If I were to give you just one piece of advice it would be to learn about protecting yourself from the sun. There is plenty here on that topic.
Welcome to the Site. The Chat Room is also a good way of feeling less isolated.
x Lola
HI, when I was diagnosed with SLE 11 years ago, I didn't know much about this disease. I thought it just caused fatique. I did not know anyone else affected with it. I took Plaquinal for 1 year and because I was still very fatiqued, I felt it was not helping, therefore, stopped taking it. I can't remember the next med. I was perscribed, but I have been thru them all and now take Cellcept. My advice to you is to educate youself...learn all you can about the disease and the meds. Wish I could start the process all over, I would have made better choices . Take care, Rose
Hi and Welcome to the site. Please start a journal and keep notes on what is going on wiht you. You can also write down questions you may think of and may of forgot to ask at your dr visit. There are pain pills that can help with the joint pain, you just need to find the one that works well for you. Let your dr know that you want to know about what is going on with you and that you don't understand what is going on with you. If he/she is a good dr they will find a way to help you and encourage you to be active in your care of the lupus. You might want to consider talking to your dr about filing for some kind of disability so you can not worry about going back to work right now. I would ask that you ask your dr what each medicine is for so you can address the symptoms that are not being treated at this time like the joint pain. Please let us know if there is anything we can do to help you. I have had sle (found by a biopsy just like yours) for 17 yrs. and I still don't know what I feel I should but am learning a lot on this site. I am finding that sometimes you have to start thinking differently to get better. Good Luck
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Hi Jaggs

Welcome to the site. Sorry to hear that you are having such a rough time. The others have all given you excellent advice, and I cant really add to it! Just wanted to say hi!
I hope that you get your meds sorted soon.

Hi all

Thanks for all your replies. Sorry for the delay in my answer, my daughter has been very ill for 3weeks with a virus which landed us in hospital, and then I caught it! I wish she'd share her chocolate!!

We're both much better now, although whilst she was being investigated they found she has a heart murmer and has to have some further tests. Could this be because I am + anti-ro?

Things have started to settle, although very slowly, don't know if its because the steriods have stopped being lowered or because of the new drug (azathioprine).

Claire I hope things are doing the same for you?

Katherine the dose has been increased to 150 and I had only recently started it when I first posted and I did write a list of symptons for my first visit to rhemy (on my mothers request) prior to being diagnosed as my memory is shocking, he didn't like it?

Lola when I was diagnosed I was very distressed and read lots of awful things on the net, however I learn't very quickly that it needs to be taken with a pinch oh salt - I suppose I just couldn't work out why on drugs, I was still expirencing extreme discomfort and new symptons, even though the profesionals did say that they would take time.

Rose I have now done a lot of research and this dissolved a lot of my querries.

Onetay I am about to return back to work on a phased return, however I was supposed to be starting this mon coming - had a call of HR told not to come in want to talk to me about altering the phased return? A little apprehesive - have a telephone meeting on mon - I think there could be problems. to long to go into detail now but may need some advice in the future.

Most new symptons during this flare have settled, if not vanished, a few have stayed mostly joint pain, but I have noticed that even they are currently (mostly) being controlled with the drugs (not as aggressive) - however I don't know how I will be affected if these are reduced again?

As mentioned in my first post I have Intracranial Hypertension, as a result I suffer daily from migraines, constant pulsate tinitus, dizzy spells, poor vision and enlarged blind spots. At first I was on medication to control the Hypertension as another complication is paplidema which can result in blindness, but once controlled this drug was stopped and these are the side effects I am left with. None of these have eased - Intracrainal Hypertension is a rare manifistaion of lupus and I would like to know if the aggressive treatment I have received is more to control CNS involment. Does this also mean that I will be more prone to CNS complications in the future.

Hope you are all well, one again thanks for your replies.
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