At my recent visit to see the Rheumatologist Dr Green at York DH.

[Everdean]

I found him to be very caring and thorough. So I would definitely recommend him.

However he didn't think I had Hughes and said he thought I had Fibromyalgia and maybe some other autoimmune problem that didn't fit the criteria for any thing specific. I I have underactive thyroid, (which they keep saying is autoimmune yet don't call it Hashimotos), and coeliac disease.

He offered me Plaquenil, and gave me a leaflet about it and told me to think about the possible side effects before taking it. I had another blood test and a chest xray and was told to go back in 2 months.

Is it usual to prescribe Plaquenil for Fibro? I haven't asked for it yet as I want to be sure it's right for me.

I would be grateful for any feedback, thank you.

[donna]

Just thought that l would say!....if you have autoimmune hypo thyroid it would certainly be called Hahimotos... If you should choose to take the Plaquinil you should have your eyes tested before you start ..it's a special eye test where they take a scan of your eyes ( available in the high street opticians had mine done in D a Achison) it's so you can see if they determinate whilst on the tablets ( a side effect) I attend St Thomas and the prof said this must be carried out before commencing treatment.

I have Hashimotos ,Lupus SLE ,Fibro and Hughes plus the problematic Sjogrens ...l know people take Plaquinil for all of these overlapping conditions.and also know that it can help greatly with the pain..and keeping the wolf from the door.zunfortunately l couldn't tolerate it ..

I belong to the HU forums for all of these conditions and read about how the meds help or effect each of the problems we are all different..you don't know how it will be until you push the door! At the end of the day anything that improves your lot or keeps the wolf from the door is maybe worth a try!!

Best wishes for what ever you decide x

[Everdean in reply to donna]

Thank you Donna.

Your comments were helpful

[MaryF Administrator in reply to donna]

Hi there, if you have actually been tested for APS, and the results are negative, please be aware that some of us have sero negative hughes, and at times test negative, only to test positive later on or vice versa. Also make sure your thyroid medication is at adequate levels, and join Thyroid UK on here if you have not done so, already. Mary F x

ard.bmj.com/content/62/12/1...

[Everdean in reply to MaryF]

Thank you Mary.

Yes I mentioned the possibility of zero negative test results, and although he knew of it, as I haven't had any blood clots, he wasn't going to try blood thinners.

I am going armed to discuss the thyroid next time.

X

[bernieembleton in reply to MaryF]

Hi Mary F, I am seronegative APS, Sjogrens/lupus, diagnosed by Prof Hughes I have attended St Thomas's for 8 years, and i have just received a letter today, saying they have discontinued the clinic at the Lupus clinic, and told to see my GP. The letter implies, and querys my diagnoses. I am at a loss, Have you heard of anyone else this has happened to? I have made arrangemennts for travel and accomodation for my appointment that would have been on the 24 September 2013. The services where i come from are very poor in East yyorkshire. Hence why I saw Prof Hughes at St Thomas's/ & privately to get a diagnoses in 2005. Kind regards Bernie

[MaryF Administrator in reply to bernieembleton]

Hi there, this appears to be happening to an awful lot of people, in the first instance, please do write to Professor Hughes and let him know about what has gone on, and get him to perhaps write again, (did you see him at London Bridge), or was it years ago at St Thomas'? You could also write and complain to the clinic, do please privately give me name on the letter, who is discontinuing your care! It is important that you GP's medical and professional judgement of you is not clouded at this stage. It is important that your GP sees old letters from Professor Hughes, and also perhaps any new ones written.

May I refer you to our list of APS friendly professionals in Yorkshire, as this may be better for you once you have sorted the paperwork with GP, via perhaps Professor Hughes, if you need email addresses or anything please let me know. Here is list of clinicians and two in Yorkshire: hughes-syndrome.org/self-he... Mary F x

[bernieembleton in reply to MaryF]

Thank you Mary. I will message you privately. I saw Proff Hughes privately first in 2005 then he transferred me to NHS as i do not have insurance. This is stress patients could well do with out, when we are already ill. Bernie

[MaryF Administrator in reply to bernieembleton]

Well there is a start ring his secretary and get his original letters and write to him again! Mary F x

[bernieembleton in reply to MaryF]

Thank you Mary, for your kind help. Bernie x

[MaryF Administrator in reply to bernieembleton]

Well we are all in this together, literally! Mary F x

[bernieembleton in reply to MaryF]

I have sent you a private message. I hope you received it. x

[MaryF Administrator in reply to bernieembleton]

yes thanks x

[Hidden]

Thanks for letting us know about Dr Green - I will write to him to see if he wants to be added to our APS specialists directory.

I would ask the Health Unlocked fibro group about your hydroxychloroquine (Plaquenil, Quinoric) question

[Everdean]

Thank you ABsnotFAB. That is most helpful.

I will get app. with GP and have a try. I believe it's important to have an eye test first. Is this done on the NHS?

Reg. Hashimotos, does Levothyroxine treat this or is another medication needed?