Diagnosed with Primary Sjorgrens Syndrome today

[Yellow-Petal]

My Rheumy gave me the results this morning I have been diagnosed with Primary sjorgrens Disorder. He has give me Hydroxychloroquine Sulphate 1 x 200mg 2 times per day and Pilocarpine Hydrochloride 3 x 5mg start with 1 per day for a month then 2 per day for following month and so on. I'm feeling very emotional it's been a very emotional and draining day. Relieved shocked all different emotions. I was asked to get appointment made at doctors to have pneumonia jab and flu jab. Thank you to everyone who has gave me advise and hope over the last couple of years I appreciated each and eveeyones help and good wishes. It's been a very tiring journey I just hope now I can start feeling better. Thank you xxxx

[happytulip]

Hi Yellow-Petal, I love the name.

I'm sorry you have received a diagnosis today. I've not got sjorgens but do have a little knowledge. However I remember what it's like to get a diagnosis (SLE amongst others). It's no wonder that you feel emotionally drained right now. If you are like most AI patients I expect it has taken you a long time to get to this point. I expect you have many questions and uncertainties ahead and are feeling all over the place. When I got told I had SLE I just sat in a bench and cried for about a half hour, some of it with relief because after 32 years someone finally listened. I also cried because I had no idea what the next step way. And I just needed a good cry. And then I went home and slept as I had never slept before. The following day I felt more positive because I realised that although I had a diagnosis, I also had medication and a team to help me. I am hoping that you will feel that way once the emotionally drained feeling wears off.

This is an excellent forum. Full of kind, supportive and very knowledgeable people from all different parts of the world who are here to listen and support each other.

As I said, I don't have sjorgens but there are some on here that do and we all seek to support each other.

I am on hydroxychlorquine for my SLE and found it very beneficial. I noticed a difference very quickly. All I would say, in my experience it is best taken with a meal so I have a good bowl of porridge for breakfast and then take it again in the evening with my meal. It's not given me any side effects.

For now, maybe just take tonight easy. Rest up, self-soothe and look after yourself. It's been a big day and I suspect you've had to take in alot of information.

And please, please we are here for you.

Best wishes xx

PS: I just remembered that I responded once to a post you wrote about an ECG and T-wave flattening or inversion. Did you manage to get a good explanation about it. I'm not prying into detail, just wondering if someone explained it to you and you were happy?

[Lupiknits in reply to happytulip]

I second this. I can’t express it any better xx

[Yellow-Petal in reply to happytulip]

Thank you so much Happy Petal for taking the time to reply. Your words have reduced me to tears. Knowing all you lovely caring people are here to listen and help all us newly diagnosed patients is just second to none. I just want to say how much I appreciate each and everyone comments to my post. You give me strength and I thank you so much for that. I'll keep in touch and let everyone know how I get on. Is there a go to site which can give me all the information I need. 💝💝💝💝 xxxxx

[happytulip in reply to Yellow-Petal]

Lupus UK. There is a vast amount of information on the website and when all this pandemic is over, if you can make it to one of the regional conferences, I would try to go, even if it's just once.

Paul, Kevin, Chanpreet and all the team in the office are fabulous. And off course, just keep posting on here. X

[Jmiller623]

Ditto to happytulip. Well said.

Glad you finally fell upon an answer YP. A gift and a curse but now you know and knowing is half the battle. Thanks for the update to prior post!

[Hidden]

Hey welcome to the primary Sjögren’s club here are this lovely forum. I was misdiagnosed with RA for five years, then rediagnosed with pSS by lip biopsy. But now waiting to see my new rheumatologist on Tuesday to find out if the overlap CTD I’m also thought to have is Scleroderma. To be honest I’m beyond caring what they call it now.

If you haven’t already it’s worth joining the BSSA because their magazines are excellent and they have a dedicated helpline too. The front cover of the new spring edition is dedicated to neurological manifestations of Sjögren’s - just in case, like me, this is the form you have.

As others have said it’s very emotional getting a diagnosis of any systemic autoimmune disease and I completely relate to the overwhelming sensations you are describing. I had it when I was diagnosed with RA and put straight on methotrexate 9 years ago - but I was just terribly relieved by the time I learned, five years later, that I had Sjögren’s instead. It made so much more sense of my symptoms than RA - especially the neurological ones.

Now let’s hope the Hydroxichloraquine works really well for you. Great that your rheum also asked that you have those two vaccines as well. 😊

[kingsnorth]

Hi Petal welcome to this lovely forum l don’t often post on here but l do read people’s journey. I was diagnosed over 15 years ago as well as lupus at the same time, l was prescribed 200mg of hydroxy I’m also taking 2mg a week prednisone just as a maintenance dose. I do have bad days but also many good days. 2 years ago l was also diagnosed with PBC which is caused by my immune system. The only advise l can give you is eat healthily and try and stay as active as you can but also rest when you need it and don’t push yourself. Good luck xx

[puffyface]

Horrid to finally get the diagnosis...but hopefully the hydroxy will do it’s good work and the pilocarpine will help. It’s definitely better to be diagnosed and under a sympathetic rheumy, that feeling rubbish and not knowing why. Be kind to yourself and know that this is a fab forum for questions.