Sjogrens, does anyone know private help for this in N Ireland

[Sunflower535]

My friend has just been diagnosed with Sjogrens. I was wondering if there was anyone on here with this from N Ireland who knows of a Consultant or other professional that she could go to privately here. She is really struggling at the minute and it will be a while till she sees her consultant.

[gemim]

Hello Sunflower,

I also have Sjogrën’s and live in N. Ireland. Not aware of any specialists here but when mine flared up during the Pandemic, I had an on-line private consultation with a Dr Elizabeth Price who is based in Swindon in the south of England which I found really helpful. I was able to get an appointment within a few days and she wrote to my rheumatologist with suggestions of treatment. As it happened, I couldn’t tolerate the medication but I did find it reassuring to talk to someone who specialised in diagnosing and treating Sjogrën’s. I know your friend was looking for a specialist here but if she is interested I could look out the telephone contact number.

Gemim

[Sunflower535 in reply to gemim]

Gemim thanks so much - that is just brilliant. If you could get me her telephone number that would be great - just send it to me by private message perhaps! maybe she would do a telephone consultation with her. My friend is struggling at the minute - not long diagnosed and waiting on her next appointment with her consultant. There seems to be a delay in getting seen again. Do hope you are keeping well now Gemim - it seems like a dreadful illness and like so many other - the medical professions don't seem to know a lot about it. My friend is trying to educate herself about it as her GP doesn't know anything about it at all so is no help to her. Thanks again. This will give her the hope that she needs.

[gemim in reply to Sunflower535]

Hello again,

I have just looked up Dr Elizabeth Price, Shalbourne Private Health Care on- line and it gives this number for appointments : 01793 646059. The Client Liaison is Chantal Ames. I found Dr Price very easy to talk to and I trust your friend benefits from her recommendations.

Gemim

[Sunflower535 in reply to gemim]

Thank you Gemim. I will pass that to her. Hopefully she will get the help she needs. Thanks again.

[Runlikeagirl1]

Hi Sunflower,

I don’t have any advice unfortunately but I am in a similar position. I live in N. Ireland and was just diagnosed with Sjogrens in the summer. I am also struggling, for me the worst symptoms are dry painful eyes with recurring ulcers and lack of energy/exhaustion. I had my first appointment with a Nhs Rheumatology Dr in July at the Ulster who ordered a lot of blood tests. I got a phone call from him at the end of August where he gave me the diagnosis of active Sjogrens and prescribed me Hydroxychloroquine and Pilocarpine tablets. So far I haven’t seen any improvement so I phoned the secretary and got a call back from him to say that if the Pilocarpine doesn’t help I will have to stop them and then I am out of treatment options. Apparently I will have a review in January so I’m just trying to get by until then. I am still waiting to see an Opthalmologist after being at Eye casualty 5 times since March. They keep putting me on the urgent list then i get a text shortly after to say I have been put on the routine list. I have googled to try to find a Sjogrens specialist in Northern Ireland but haven’t had any luck so far. Sorry it is no help but just to let your friend know there are others here in the same boat unfortunately. Sending hugs 🥰

[Sunflower535 in reply to Runlikeagirl1]

Thank you Runlikeagirl1. Your symptoms sound exactly like my friends. Her optician prescribed her eye drops and she was advised recently she must do them several times a day. Like you she has such terrible fatigue. If you read one of the replies that I got - there is a doctor in Wales called Elizabeth Price who seems very good - according to this lady this consultant does consultations online or maybe by telephone - maybe worth checking out her. I think the hardest part is when you are just left there - without anyone attempting to do anything for you - I can see how my friend struggles - that dryness in the eyes and nose etc is awful . You just want to be listened to and to feel that someone cares. Thanks for your reply. My heart goes out to you. Do hope that soon you get the treatment that you need. Take care. X

[Sunflower535 in reply to Runlikeagirl1]

Can I just mention Runlikeagirl1 that my friend is taking Flaxseed Oil Capsules for her eyes as well as the drops. They are something that I take all the time for eye dryness! I know sjogrens eye problems is not to do with the oil in the eyes that cause my dryness, but to do with the fluid, but my friend thinks that they do help her. We get them in Holland and Barrett or any Health Shop. Eating the Flaxseed doesn't have the same effect as. It was my optician who recommended them to me. My friend reckons that because the Flaxseed Oil is good for inflammation in the body (which happens with sjogrens) that she thinks even if they don't do her eyes any good at least they are helping her body. Maybe worth checking out. Do take care and thanks again.