Sticky Blood-Hughes Syndrome Support

unsightly rash

Hello. I was diagnosed with Lupus,aps,sjorgens disease, blue finger syndrome and granuloma annuare about three years ago but suspect I have had these conditions for many years as always passed off as 'just Arthritis' because of my age and with other misdiagnosis.

What I would like to know is does anyone else have granuloma annuare and Aps.? I have extensive bumpy clusters of these unsightly rashes everywhere except my face,back and shin/calf area. They don't itch but change colour from pink to red. I have had a biopsy and have been told it is consistent with Granuloma Annuare, a rare skin disorder.There is no cure but light therapy, steroids etc have been suggested.

I think its more than a coincidence that all these conditions are happening at the same time and probably difficult to say with any certainty they are linked but I think they are.i do not think I am the only one or am I.?

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Hi, I dont suffer with this skin condition but I have read research papers that have linked it with Sjogrens.

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Hi there, others on here do have that. The trio of diseases is often Hughes Syndrome/APS, Sjogrens and a Thyroid disorder, Thyroid disease is frequently missed due to the over reliance by the NHS of the TSH test which is probably not fit for purpose.

It is not uncommon for autoimmune diseases to cluster together. On this forum we always suggest proper thyroid testing, (I do mine privately), also B12 and D, and thorough investigation for your Hughes Syndrome/APS. Also a designated Hughes Syndrome/APS specialist. MaryF

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Thank you both for your helpful replies. I have had my thyroid tested on the NHS and as you say the TSH test is not always reliable.For peace of mind I will try and get a private test but not sure best place to go to.?

My Vitamin D level is slightly under and B.12 was ok.I wasn't aware of a possible connection with Sjogrens so will look into that.

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You say they just pass everything off as "just arthritis"? I hope that is not the case for your APS! Are you getting specific treatment for this condition like any anticoagulants? Are they testing your platelets and antibodies? If not they should be and if you are not on any anticoags again you should be. Plaquenil is another medication that you may well find helps and is standard treatment with our condition and other autoimmune conditions. Getting a specialist who knows our condition well will probably mean you will find someone used to other related conditions too and how they all interlink.

Where are you located so that we can try and suggest some options for you.

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Thank you APsnotFAB for your reply. I can confirm that since my diagnosis for these conditions three years ago, I am being monitored annually by the Lupus Unit at Guys Hospital and have been prescribed Plaquenil and Aspirin (75mg).

Prior to that I was not attending Guys but presenting with multiple joint pain which the Gp and specialist I saw at the time commented on. I was offered joint replacements for the Arthritis in my fingers and trapeziectomies for the thumbs which I declined as no one seemed to investigate any further.

I do have Osteoarthritis which may or may not be connected with the Autoimmune conditions that I have. I suspect that it is.

It was only when I was diagnosed with APS by a Vascular Surgeon that I found out myself about the Lupus?Aps clinic at Guys and asked to be referred.

My Gp does 6 monthly blood tests to monitor the Platelets but I havent had the antibodies tested for about a year.

This medication does nothing for the G.A and has no effect on the very severe pain in my hands/wrists and fingers.

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Well, Im glad you are at Guys. Since you have not had a clot then the treatment of Aspirin and Plaquenil is the standard. As for your other conditions, Im assuming they tested you for RA? Im like you I have hand issues but so far test negative for RA but they say its osteoarthritis. As you say Im sure its all linked. I was just wondering if you have been prescribed oral steroids for your GA and if so did that not help with your hands too?

A quick check of the literature shows tha GA is often linked with autoimmunity and not wanting to give you another on, but Hashimotos seems to crop up a lot. As you know APS, Thyroid and Sjogrens is known by Prof Hughes as the big three so it would not be a coincidence if you proved to have it. Has your thyroid been properly tested? Here is a paper you might like to read on this subject.

ncbi.nlm.nih.gov/pubmed/126...

Possibly the good news is that apparently it can spontaneously disappear after around 3 years which is as long as you have had it. Perhaps it will, in time also follow that pattern and go away!

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Hello APsnotFAB,

Thank you for your helpful and interesting reply.I wasn't aware of the link with GA and Hashimotos. I have had the usual NHS test for thyroid but all negative.I was originally diagnosed with GA over 15 years ago but it was only on my elbows. I believe it went into 'orbit' after a family tradegy 5 years ago.Its only the diagnosis I have had three years ago for these multiple conditions not their onset.They have been progressing for some time with Doctors misdiagnosing them.

Like you I have had a negative test for RA and diagnosed with OA in my hands,wrists and finger joints.I was told it can be bilateral and cause very severe pain, which it does constantly. As we know not all RA conditions show up on tests.

I have been offered much stronger drugs but refused because of the other problems they can cause.I wasn't offered oral steroids for the GA tho. I saw a physio recently and he refused to treat me unless my condition and pain was managed better ie with drugs. Its still a line I don't wish to cross so I put up with the pain, which is very severe in my fingers/hands constantly. I know one day soon I am going to have to 'cross that bridge'.

I will look at that article you sent and once again thanks for taking the time to reply

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