Sticky Blood-Hughes Syndrome Support

New illnesses - medication not working?

Hi all, not posted in a while but avidly follow the page, just asking some advice today, so after a blood clot 4 year ago I was diagnosed with APS, after a lot of pushing and stamping my feet I was then tested and diagnosed with sjorgrens (excuse spelling), RA and Lupus, and placed onto hydroxy chloroquine, after an appointment with a rheumy nurse the illnesses were explained to me and I was told that although they couldn't take the clocks back and make my illnesses better the hydroxy chloroquine would stop my illnesses getting worse, so for almost 2 year I was taking them with very little difference to my illnesses then I developed IBS, a year later I developed Raynauds, and this year it turns out I've got an over active bladder, my concern is my kidneys are being effected and does this mean the hydroxy chloroquine is not working because it's getting to be a yearly occurrence where i seem to be collecting more illnesses - the bladder clinic has asked for me to be referred to a specialist to see why this is happening, my gp seems to think a referral would be a waste of time and ordered a kidney function test (I'm all for that but that's not giving me reasons why) so I've since rang my APS specialist and asked for an earlier appointment to see what is going on - just asking for some advice if hydroxy isn't working what could be the next steps and wondering if this has happened to other people

Thanks in advance lovely people and enjoy your Sunday :)

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What are you taking beside the Plaquenil for anticoaqgulation?

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Warfarin 11mg 4 days and 10mg the other 3

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For your IBS have you considered giving up gluten, it is often a major irritant in the system when you have autoimmune disease. Also my over active bladder calmed down once I treated my thyroid, I did extensive private testing as the TSH test, being used by the NHS is not reliable enough. MaryF

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I'll look into that but it's expensive to do and I'm on a very tight budget I did get tested for intolerances to gluten and that came back clear about 3 month ago

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Hi, sorry your going through the mill again. Hydroxchloroquine is very good, but as far as Im aware, only helps the symptoms, I was put on it for my sjogrens, I had less pain, but never completely went away and still get flare ups. I also got bowel problems after taking - I am now wheat free and lactose, which helps. They are suspecting colitis but thats another story.

We do seem to pick up other autoimmune diseases as we go along, like sjogrens, thryoid, raynards, colitis etc. Does your APS specialist or GP, regulary check your bloods for thryoid, B12, Vit D etc?

Really good idea to see your APS specialist sooner rather than later, as hopefully they can look at the whole picture and collate the various specialist tests and results. Our sludgy blood goes everywhere, so sadly can effect anything. I hope you get some answers soon xx

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I have got a vitamin d deficiency been taking meds for about 2 year for that I go to see my consultant every 6 month and they do blood tests I'm presuming they're testing for thyroid etc and the GP doesn't really test for anything at all - all I seem to get from them is your illness is very complicated, which is why I contacted my consultant and asked for an earlier appointment

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Typical GP answer! Surprised then that he doesnt want to refer you. Worth checking when you see your APS specialist, what they are testing for - I used to just accept them taking my bloods and presumed they would contact me if something wrong, I now more careful and try and understand the results, a lot of the figures go over my head, ha ha.

MaryF can give you a more detailed esp thryoid, blood tests to ask for?

Let us know how you get on, answers help us all xx

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I will do and thank you all for your advice - I appreciate it massively I see my consultant on Wednesday so I'll let you all know the outcome after that :)

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Great - I find it helps to bullet point all my questions before hand, so I dont forget anything. Good luck xx

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There are immunosuppressants for RA, lupus etc

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I'm going to have to speak to my consultant and see if anything else can be done - probably be even more meds much more and I'll be like a human maracas lol

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Hi,

I would like to know if you have a specialized Doctor of autoimmun illnesses? So few Rheumatologists are specialized in our illnesses. They need to be as you have got a diagnose of at least 3 of them today.

Also you are on Warfarin and I wonder if you are selftesting an of what therapeutic INR-level the Specialist has put you on?

It is important that the Doctor is the right Doctor and that the anticoagulation drug works steady and properly.

Best wishes from Kerstin in Stockholm

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Hi Kerstin, the consultant I see is named on Dr Hughes' website as a specialist in Hughes syndrome - not sure if I should be seeing another consultant or not?

The dose of warfarin I'm on is to give me a range of between 2-3 although I have told the doctors I do feel better when my INR reading is at the top end of scale - I was given the INR target when I first got diagnosed with Hughes and it's never been altered since I started seeing the specialist consultant

Regards Beverley :)

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I hope they have put up the right Specialist on prof Hughes website. We usually can tell if he/she understands these illnesses on the anwers and questions from the Doctor.

I am also surpised that the GP does not want to remit you to a Specialist as the bladder clinic asked for.

Also that you INR probably is too low. Tell your Specialist that you feel better when the INR is around 3.0. Most of us feel best around an INR of 3.4 - 4.0. A Specialist knows that but you are also on Plaquenil.

Kerstin

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I see a Dr Bridget Griffiths and I wouldn't have found out about half of my illnesses if it wasn't for her or my vitamin d deficiency, but I don't always get to see her I sometimes have to see one of her team and they just seem to take notes and pass their notes on to Dr Griffiths - I'll mention the INR to her when I'm there on Wednesday and see if increasing it will be a good thing - thank you for your help - are there specific questions I should be asking my specialist do you know?

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It might be time to follow me to the Darkside of medicine a.k.a. functional medicine. Look for books and websites that host Dr. O'Brien and Dr. Perlmutter. their theory is that the standard American diet which is loaded with carbs and chemicals are actually the beginning stage of autoimmunity as well as cancer. as I have posted on here before, I went up to functional medicine department at Cleveland clinic last fall and went on their "detoxification" diet. That died basically was no gluten no lactose no sugar lots of green leafy vegetables and healthy fats. For the first two weeks I was always hungry. After those initial two weeks the hunger went away, I lost another 5 pounds, and I felt 50 years younger. Yes - 50 years younger!

It might be time for you to give this a try. It ain't easy – but at least for me the results were worth it.

( and by the way, the gluten tolerance test is not always accurate. The best way to establish if you have a gluten allergy is to go on a gluten-free diet for 4 to 6 weeks and see if you feel better. )

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This one Toddzchickfor GinaD post

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Yes, I tried it a few year ago and it did not a thing for me then I had the tests done it came back clear so using all that information it doesn't look like any intolerances, although today I have been diagnosed with fibromyalgia which is why it would seem like my medications aren't working and my illnesses are seeming like the they were the day I was diagnosed with them, my medications are working but because of this illness hovering over the top with identical symptoms it does look like the illnesses are getting worse, so at least now I know what it is I'm dealing with and can research how to deal with it better but thanks for your input - its muchly appreciated :)

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bevjane74 how did the appointment go?

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Hi again,

I reread a bit and found you had been diagnosed with Lupus, Sjögrens, RA, Reynaulds, Fibromyalgia and now you are on Warfarin.

Are you positive to HS/APS and from what symptoms? How many antibodies did you test pos for? Who diagnosed you for APS?

You really need a Specialist who knows Autoimmun illnesses as a Speciality of a Doctor!!!!!

Most probably you should retest again and I guess that some of them are mixed up.

Hope you could answer my questions as it could be good to know what your answer will be.

Kindest regards from Kerstin in Stockholm

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I was diagnosed with APS in the first instance about 3 and a half year ago after having 2 blood clots in my left calf, placed onto warfarin at that point, about a year later I was diagnosed with sjogrens and placed into hydroxy chloroquine, and after asking to be referred to an APS specialist (named on the Hughes website) I was then diagnosed with Lupus and RA - in the last year I've been diagnosed with IBS, Raynauds and an over active bladder being worried about all these new illnesses I asked for an earlier appointment to see my specialist (which I attended on Wednesday) and after doing a sensitivity test and taking all my present symptoms into account and blood tests proving the hydroxy chloroquine is in fact working I got a diagnosis of fibromyalgia :) hope that makes things clearer

Regards Beverley x

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Hi,

Do you also have antibodies for HS/APS and is Dr Griffith a Rheumatolgist or a Neurologist?

What did she say about a higher INR of 3.0 - 4.0 as you feel better on a higher range?

Did you feel listened to?

Kerstin

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Hiya, Dr Griffiths works in the musco skeletal department at the hospital so deals with rheumatology and everything muscular and skeletal - and yes I tested positive for all the illnesses I have been diagnosed with the test they done for APS I had bloods taken, tested and then tested 12 weeks later and both times antibodies for APS were present - this time when I attended my appointment it wasn't Dr Griffiths but one of her registrars, she listened to all of my concerns seemed genuine and helpful asked me lots of questions about my symptoms used those and the sensitivity test to diagnose fibromyalgia and explained that as the symptoms of fibro are very much the same as all the illnesses it will seem like my medication isn't working - there are no markers in previous blood tests to indicate the medication isn't working so it'll be the fibro that seems to be causing the rest of the pain and illnesses (IBS, raynauds tingle, brain fog and bladder problems) as for my INR she's asked for my readings to be as near to the 3 mark as possible for now and for Dr Griffiths to contact me to discuss this further, so my INR reading is to be looked at on Friday and warfarin to be adjusted accordingly, sometimes I don't feel listened to but this time I thought the doctor I seen was very thorough she's done blood tests for liver and kidney functions, thyroid and to check to make sure my medications are at the right levels in my blood

Regards

Beverley :)

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I think you should ask to see Dr Griffith in person on your appointment as she is the Specialist you should have an appointment with.

It is a fact that if we get our anticoagulation (as to the HS/APS) stable and high enough a lot of different symptoms can disappear as they may even be emboli. If it is a real Specialist of HS/APS that Doctor will understand that you need a higher INR than 3.0. I feel best around 4.0. We do not bleed from this illness but CLOT.

Kerstin

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