Dear Hughes CommunityI am a new member and would like some advice.

[Kuluvalley]

I have APS recently diagnosed and this explains 30 years of strange symptoms ( all clearly link up to having Hughes of course!) and my absolute certainty that I was having DVT's even if they were in the superficial veins of my leg. Scarring proves that one!! and my own perseverance!! so many doctors and some much ignorance!1( that is another story)

Under the excellent Dr H. Cohen at UCLH ( who took the journey of doing the original detective work and diagnosis!) and have seen the kind and smart Dr. M Khamashta for a 2nd opinion.

Have many of the usual cluster of problems... swelling leg... brain fog...and fatigue. Have also got moderate severe hair loss, Sicca and Raynard Syndrome.. really poor digestion etc. I also have many drug allergies and food intolerance's including wheat and MILK(ALL my life) probably minor stroke in 2007.

They want me to try hydroxychloroquine Having read the side effects I am very worried that It is a no no.. as so many relate directly to my own physiology... and spells trouble to my well trained brain...and my own self knowledge ...

Complicated by being full time carer to teen son with many mental health issues and autism.. need to be on top of the game so to speak.. and just keep going... seriously no luxury of time for new side effects .... no time to be ill in bed!!

What experience ... have others had.. is it really worth it ????.

THanks for your help.....

[kathyD64]

Hi Ya hun i saw prof K this year and was commenced on plaquenil but i did get migraines only took for 4 days. However other blood test confirmed i was pre peri and post menopause! all abit confusing but i am going to retry after seeing local rheumatologist today as migraines prob hormonal and now got mirena coil in - he said its a very safe drug to use and will help with the fatigue, sicca symptoms and of course provide some anti coagulation ( my acl sky high on warfarin but this may also protect me as aspirin gave me oesphagitis). I can fully understand your concerns but i guess its worth a shot... quite a few people do say it helps with fatigue... and no doubt if you are like me thats what gets me down the most i just have not got time to be fatigued!

sounds like you got your hands full with no time to be ill - i too read the side effects but then they do go over board with it all to scared someone will get one side effect not mentioned and get sued!!

Im going to start slowly this time and see what happens - good luck with what ever you decide to do love kathy xx

[Kuluvalley in reply to kathyD64]

Kathy

Thanks for sharing.. saw GP today who has little knowledge of APS.. so had no comments either way.. so really is up to me

Will keep you posted

[MaryF Administrator]

Hi there for many people this drug really works, for myself it did not, I had a severe allergy to it, but probably due to the fact that I have psoriatic arthropathy and such late diagnosis for all things including SLE Lupus which I have clearly had for decades. However I read widely on this drug, and my 15 year old daughter is on this and doing well. It is slow to work, very slow, you have to be patient and build up on it. I really hope you consider it, it works so well for many. Wish it had for me, but hey ho, another day etc. Mary F x

[Kuluvalley in reply to MaryF]

Dear Mary

Thanks for your kind reply.. I guess I needed some reassurance and support which all my replies have given.

Will take it slowly and see...

[MaryF Administrator in reply to Kuluvalley]

Yes do.. from watching my daughter, she felt nothing on it..until about two months, then a slight change... and as she got to about 5 months a real difference. I wish you luck with doing this... don't rush it.. she started on tiny dose and built up to full dose. Mary f X

[jessielou]

Hi hon,

Welcome, so glad you found us, sorry to hear of your long struggle to diagnosis, quite a familiar story on here sadly. Loads of info, great people and support when you need it hon.

Although my son, he's 12, doesn't appear to have the mental health issues, he has autism and has physical problems, painful hips and back etc. so I do understand your need to be fit and able to cope!

I have been taking 400mg Plaquenil for nearly a year now, it does help with pain, fatigue etc!

As for significantly better ide have to stop it to see how much good it is doing. Can't say side effects were too bad to start with, felt nauseous, dizzy, and took at least 3-4 months to kick in! Always take it with food or warm soya drink, (don't do dairy anymore) not worth the pain!

I have regular eye checks and bloods taken, so far so good!

I hope you feeling ok today!

Take care gentle hugs love Sheena xxxxx

[Kuluvalley in reply to jessielou]

Dear Sheena

Thanks for you prompt and Kind reply. and good suggestions. going to try 200 mg soon (though Consultant suggested 400 mg for a month and then work back to 200 mg.. I will start slowly and see how i go.

Not sure I can cope with rough side effects as I have to drive and attend school with my son every day.

Good luck with your son... it is a hard struggle.. which few folks truly understand. plan ahead as my lovely son is now a man ( in body only) now 18 and so much of the NHS and community support goes!!

Will be brave and give it a go and and keep you posted.

[Kuluvalley]

Thank you for your warm welcome.. I have found the groups posting very informative and helpful.

Hope to meet some of the London crowd at one of the local meetings in the future.

I found your ideas so helpful.. It was suggested I start at 400 mg for a month and then drop down to 200 mg.. I think I am going to try a similar pattern to yours... I will chat to the Consultant .... the GP was next to useless this morning... no experience of APS of course... slow adjusted doses sounds best .

After all we are strong creative and determined women who know our bodies best... I am going to follow my good health instincts... after all it kept me alive despite all the bad medical advice I got over the years.

Best

[apsgirl]

Hi

I cant really provide any adice but just wanted to wish you the best and hope it gets sorted out soon

x

[Hidden]

I think Plaquenil is a miracle drug.....I was feeling horrible until I began to take it...So far no complications

[Kuluvalley in reply to Hidden]

Dear Luisa

Thanks for sharing

[Coppernob]

I also find Plaquenil a life-saver. I was on 200mg to start with and then needed to up it to 400mg a couple of years ago when symptoms worsened. I also would advise start low and build up gradually rather than the other way round.

[Kuluvalley in reply to Coppernob]

Dear Coppernob

Thank you for your thoughts.. seems starting slowly is best...

will keep you posted

[thomas_tz]

Hi,

not really answering your question, but taking a cue from the mentioning of autism. A friend, who has a son diagnosed with autism, highly recommended a book on nutrition called 'Gut and Psychology syndrome' (I hope I am not falling foul of our forum's rules here... ). I bought a copy, as I wanted to learn more about the subject. My friend says it has helped his son immensely, but I cannot be sure.

Maybe something for you to look at for your son, if you want.

Take care,

Thomas

[MaryF Administrator in reply to thomas_tz]

Hi there, I have read this book, and would recommend it as a tool in the box! A good read, I got mine 2nd hand off the net, it is very detailed, but contains some sensible advice - but like everything, I read it with an open mind and formed my own opinions. I read it, due to years ago, my son having a very sore gut for a year... Mary F x