A great mention from Dr Scurr off the Daily Mail, of our condition and the charity launch

[MaryF]

I was so very grateful that Dr Scurr came along and also has over the years continued to take an interest not only in the charity I support but also knows of our forum.

dailymail.co.uk/health/arti...

MaryF

[Jonr]

Good

[HollyHeski Administrator]

Thanks for posting 👍

[BlueHorizonMedicals]

Great news Mary, I'll read it later once I've had a coffee. Maybe 2 coffees since it's the Daily Mail 😉

[MaryF Administrator in reply to BlueHorizonMedicals]

Ha ha! Mary F

[GinaD]

👍

[Jules23]

Hip pain. That will explain that then. Thank you very interesting. X

[Lure2 in reply to Jules23]

Hi Jules23,

Have you found a Specialist who knows our illness and have had patients like us?

I know you have seen a Neurologist and I think you told us you had high titres of the antibodies tested for APS but still not on Anticoagulation. As you probably have heard we think that the Neurologists do not "get" what APS is - too thick blood that need Anticoagulation as soon as possible. They may think it is something in the brain but it is not. It is too thick blood we have.

I wonder what you mean with "hip pain. That will explain that then" ?

Best wishes from Kerstin in Stockholm

[Jules23 in reply to Lure2]

Hi Kerstin,

I have been having really painful Hips for a while as well as sore heel bones. Docs thought it may be SLE related. Maybe related to APS from comments in this article?? Worth exploring. I have found the only specialist consultant in Scotland and seeing her again on Wednesday, she has said we will do a Warfarin trial as she feels it will improve my symptoms. All seems to be going in the right direction.

[Lure2 in reply to Jules23]

Hi Jules,

What I understand you have told us you are positive to all three antibodies incl Lupus Anticoagulant.

I am glad to hear that you have got a Specialist now and that she wants to try Warfarin. That is great!

Please let us hear how it goes for you and stay with us here also.

Kerstin in Stockholm

[Jules23 in reply to Lure2]

Yes. Exactly right. All three inc Lupus Anticoagulant. Have learned so much from this forum and am very thankful. Will keep you updated.

[Tyler3 in reply to Jules23]

My hip pain is my biggest complaint. Yesterday they weren’t too bad, today they are horrible.

[Jules23 in reply to Tyler3]

I did not know hip pain was a symptom. I was just blaming SLE and had not mentioned to consultant. It is a horrible feeling, so feel for you and hope it improves.

[Lure2 in reply to Jules23]

Hi Jules23,

Pains could be related to SLE, Sjögrens, APS and RA and other things also of course. It is important to have a very good Rheumatologist who knows that these autoimmun illnesses go hand in hand very often and are very difficult to diagnose sometimes. Even Thyroidea go hand in hand with Sjögrens and APS.

Hope you have a good Specialist. These illnesses are tricky ones.

Best wishes from Kerstin in Stockholm

[KellyInTexas Administrator]

Fantastic! I’ll show my GP state side. I’ve also had my Rheumatologist interested in linking up with the charity.

[MaryF Administrator in reply to KellyInTexas]

can you private message me their details please, so I can forward that on. MaryF

[KellyInTexas Administrator in reply to MaryF]

Yes- we are on a skiing holiday in the Sacramento Mountains of New Mexico -southern Rocky Mountains) But when I’m back in Texas I’ll do that👍🏻.

[Tyler3]

I have a question. What did they mean that it can be treated “only if condition is diagnosed in time”??? I feel like I’ve had this for YEARS and am just now being diagnosed. Hoping to start Warfarin in the next week or so. Would like to hear from people who started treatment after they had Hughes for years. Is treatment less effective or not effective at all?

Tyler3

[Lure2 in reply to Tyler3]

Hi Tyler,

I think you should put up a new question as it is an interesting and important question and now you are at the bottom of another question and thus you will not have so many answers. A new question everyone will see and can answer.

Hope you have got a Specialist of autoimmun illnesses as that is very very important. He or she knows what APS means and can also give you the right treatment. We must thin our blood. Hope to see a new question from you!

Best wishes also to your daughter!

Kerstin in Stockholm