[Jjo]

Ive just been diagnosed today as having Lupus. In a way its a relief after 20yrs of symptons to finally be able to put a name to it and to know that Im not imagining it all! On the other hand I feel so scared and unsure of what the future will hold for me. My main symptons are severe skin rash, joint pains, arthritus and raynards, although I have several other symptons
Today I have had further blood taken, ( but I am unsure as to what they are checking for),an ECG, and xrays of my hands feet and chest I have an appointment in2 wks time to see the dermatologist to have a skin biopsy done. I have been given hydroxchloroquine sulphate 200mg to be taken twice and day and I will see the Rheumatologist again in 3 months time.
My head is spinning with all the information Ive been given today and wondered whether there is any questions I should be asking or anything further I should be doing?
As relieved as I am to finally have a diagnosis, I feel so emotional about it all. Any advice would be appreciated.

 

[Katharine]

Hello Jjo

Your reaction is perfectly normal and natural. I think that most of us feel a mix of relief and fear when we are diagnosed.

For the moment, there aren't really any specific questions you should be asking. a 3 month follow up appointment is pretty much the norm and you will see if the plaquenil has had a chance to kick in a bit by then (it usually takes between 3-6 months, sometimes longer).

One thing I would ask at that appointment (if you haven't already) is how to get in touch with your rheumatologist between appointments if necessary. Does he have a secretary/nurse you can ring?

I would also advise against reading TOO much right now as you need time to settle this in your head and get to grips with it. My way of looking at it is that you have managed to come this far (even if with great difficulty) despite no treatment, so things should be on track to getting a lot better.

Do be patient as far as meds go. It takes time for many of them to kick in and they may need adjusting/adding to as time goes on.

If you are feeling unwell (worse than usual, flare up...) make sure that you get back on to the rheumy and complain. It is not because you are told to take plaquenil and come back in three months that nothing can be done to help further in the meantime if needed.

For now, all I can offer is some hugs and assure you that we'll all be here if and when you need us in the months to come :grouphug2:

Katharine

 

[Jjo]

Hi Katharine

Thankyou so much for your prompt reply and I agree completely that I have managed to come this far with no treatment so things can only get better from now on. The only difference is that I now have a name for whats wrong with me and hopefully medication to help ease my symptons. Its a great comfort to know that this site is here and that there are people who understand. Im sure I will be a regular visitor if only to try and keep myself sane and from worrying too much

Thanks again

Jjo

 

[KarolH]

Hello and welcome to a great place.

Sorry for what brings you here but happy that you found a place where you can hang your hat, get support, vent, gain knowledge and friends too. I hope you like it here and get as much from this site as I have. It has been a God send to me and is my home away from home.

Mixed emotions are normal and getting a diagnosis where you can finally get on medicine and treat the illness is huge!!!!! Plaquenil takes time to work so be patient. I do know that there is a roller coaster of emotions when first diagnosed yet knowledge is power. Read all you can and ask questions. There is always someone here who will come back with a reply you will find very helpful.

20 years is a very long time to go on not feeling well and not know what is wrong. I am sorry and yet grateful that you can get on with feeling good again now that you know what your dealing with. Give yourself time for this to sink in and allow yourself to grieve. It is a process we all go through.

Join us in the chat room sometime and sure hope to get to know you better.:wink2::wink2::wink2::wink2::wink2:

 

[debatat]

Hi and welcome to the site. Congratulations on finally putting aname to your problem, although I am sorry its lupus. Diagnosis sends us into a rollercoaster of emotions and it takes time for things to sink in. Give yourself time to adjust. Hopefully the meds will kick in and you will start to feel better which will help. In the meantime feel free to post any questions you may have,

Take care


Deb

 

[Kyphi]

Hi Jjo, youve definately come to the right place. My head was in bits when I was first diagnosed (May). I went through every emmotion possible - fear being the prominent one. This site helped me immensly and now Im so much less fearful and more optimistic. Give yourself time to let thing settle and sink in. Ask your questions here, it really does help so much to talk to others in similar situations, and remember in doing so your helping others too.

x

 

[Jjo]

A big thankyou to everyone for the warm welcome and kind words and support. It means a alot to know that people understand xx