Mobility, breathless - Hughes?

[riannabri]

I have not yet been treated for hughes but was diagnosed 6 weeks ago, could the lack of mobility, breathlessness etc be caused by the thick/sticky blood?

My legs are covered in that Livedo badly

I feel like even walking a few steps like blood is not getting to my limbs/brain etc and then I am exhausted, then I go Light headed and have to sit I also have terrible POTS and my balance is REALLY bad

I also have other autoimmune problems but truly feel like Im starved of oxygen could this be the Hughes?

[HollyHeski Administrator]

yes it could - but as an technician for the ambulance service, I would suggest anyone with breathing difficulties go to your doctor or A & E.

Always worth checking with the medical team as it could be a number of things - hopefully just reassurance needed.

[riannabri in reply to HollyHeski]

I happens daily, lived with it for years, my consultant knows

[HollyHeski Administrator in reply to riannabri]

Hi, if this is not a new thing then hopefully now you are diagnosed you will get the proper treatment. When do you go back to see your consultant? You need to get on anticoagulants, this will hopefully help with your symptoms.

[riannabri]

In May - I am under Dr Lanham and Prof Hughes at London Lupus Clinic. But apparantley I need a 2nd positive anti cardio lipin test before its treated - (1st was positive and was diagnosed but its like for the record kind of thing) I'm desperate to inject the fragmin now!!!!

[Lure2]

Hi,

I wonder if you were diagnosed by a Doctor who knows autoimmun illnesses as I also see you are on the LUPUS-site here.

We need such a Doctor! Where do you live?

If you had those symptoms and also the antibodies they take in your blood twice with 12 weeks apart and was diagnosed with Hughes Syndrome/APS, I can not understand that you have not got any form of treatment like anticoagulation or at least a baby-Aspirin to take daily.

Livedo is said to be a sign of Hughes Syndrome and the breathlessness could be caused by PEs etc. You should not go around with that! Do you also have high bloodpressure?

I agree totally with HollyHeskis good advice that you should be in hospital for investigation.

Best wishes from Kerstin in Stockholm

[riannabri in reply to Lure2]

I was disgnosed by Prof Hughes and Dr Lanham at London Lupus centre

[Lure2]

So these competent Specialists diagnosed you 6 weeks ago for Hughes Syndrome and you are still feeling so bad and without treatment!

Can´t believe it. I thought Prof Hughes did not wait for a second bloodtest when the symptoms were so bad. I must have missed something.

Kerstin

[riannabri in reply to Lure2]

I was diagnosed with a few things with positive tests for:-

Lupus, sjrogens, Hughes and I already have Hashimotos and have treatment for that.

I was started on Plaquanil but reacted badly so had to stop that but was not given anything for the hughes.

My leading doctor is Lanham as Prof Hughes does not see new patients but he said he wanted a 2nd positive test for anti cardiolipin antibodies

Prof Hughes was AMAZING and said that I had the 'Big 3" and even without positive tests my symptoms, history and everything was classic hughes and my Livedo was classic especially around the knees. He said without question I needed to treat but my leading doctor set my next appointment for May. I did email him to say should I be on anti coagulants and he said he wanted to see a 2nd positive test and that we would discuss it in may

I am going to contact them both again as I feel I need something soon xx

[MaryF Administrator in reply to riannabri]

I would be contacting them as soon as possible and stress how awful you feel. This is important. MaryF

[blizzard2014]

I had trouble walking for many years before I was diagnosed. I used to have burning legs so bad that I could only walk from one end of a super market to the other before I had to sit down and rest for 15 minutes. I also had shortness of breath a lot of times I can remember throughout the years. I don't know if these were undiagnosed acute PE's, micro PE's, or just poor circulation from thick blood. It does make sense that if your blood is thicker than normal, you will have pain and shortness of breath because oxygen rich blood cannot easily reach it's target destination. Just like diabetics who have high blood sugar and sticky sludgy blood from the high blood sugar have the same issues we do, but their issues are corrected once they get their blood sugars under control. I hope you get a proper diagnoses and get your treatment. For now, you can try taking a baby aspirin to see if that helps. That is if you discuss it with your GP first. I can't give you any medical advice without you consulting with your doctor first. I also have the livedo on my knees, it happens a lot when I am in the shower. But then it goes away after. Hang in there. At least you're on the right track.

[riannabri in reply to blizzard2014]

I have the diagnosis, hopefully will start meds soon. How strange my legs burn SO badly I cant even sit on my bot at the moment. I am in a Hashimotos flare and I think that sets the Lupus and other things off at the same time.

[AnnNY]

Just FYI-- I had similar problems that have improved with anticoagulation. My breathing, balance and dizziness all got better. My doctor thinks it was micro clots. Also, I was diagnosed with a secondary antibody. LA was a tick away from positive, but I was on prednisone and plaquenil, so she considered it as positive at the time.

[Lure2 in reply to AnnNY]

Hi Ann,

I thought it was only Warfarin that would stop you from testing Lupus Anticoagulant. So also Prednisone and Plaquenil will interfere with the reading?

I totally agree with you that anticoagulation at a high and steady level is the key to feeling better.

Kerstin

[AnnNY in reply to Lure2]

That is a good question. This is a discussion I had with my APS specialist, and to my knowledge antibodies may go down in lupus with this treatment. I know Dr. Hughes talks about Plaquenil as mostly another drug with anticoagulant properties. I did some quick research on this, and it seems as if there is some evidence that Plaquenil may lower antibody levels.

Here's a fairly new and readable study:

ard.bmj.com/content/69/Supp...

Also, just because this might be of interest to people, a brief history of Plaquenil:

the-rheumatologist.org/arti...

It's also interesting to me that I was first started on Plaquenil in 1985 for my lupus/UCTD, and even now they don't completely know how it works in autoimmune disease.

Maybe this is a question we could ask Dr. Hughes. Also, I saw some people with INRs that were difficult to control were being asked to start on other lupus drugs.

I'd love to know what his thoughts are on Plaquenil, prednisone, and other DMARDs on Hughes Syndrome and antibody levels.

[Lure2 in reply to AnnNY]

Hi Ann,

Thank you for your info.

I only know that you can not take the bloodtests for Lupus Anticoagulant when you are on Warfarin. The other two are ok to test when on Warfarin.

I know very little about Lupus (the illness) perhaps because this is a site for Hughes Syndrome and I am primary APS.

Very interesting to know though.

Kerstin

[CormorantWatcher]

Have they checked for anaemia? Shortness of breath can be due to a lack of iron or change in size of your oxygen carrying blood cells. Sure - all your symptoms add up to point towards Autoimmune and maybe A PS, but could the basics be being overlooked?

[riannabri in reply to CormorantWatcher]

No Anemia - No stone was unturned when they did my testing at The London Lupus Centre. It was a shock to be diagnosed with 'The big 3' altogether on top of Hashimotos but as Prof Hughes explained in my appointment they all go hand in hand.

I still maintain Prof Hughes was the most AMAZING doc I have ever seen, so compassionate but he is not the clinical lead on my case, more of an advisor but before my next appointment I will cc him into the pre-consult email with my questions.

I am hoping an anti coagulant will help as they can not give me any form of steroid or immuno suppresent as I had Neurological Lyme Disease so bad I had Lyme encepolopothy as it went to my brain in 2006 and I was hospitalised for months and then had nursing care for a year and on IV via a chemo line for many years and as my reaction to Plaquanil was so profound that had to be stopped so my options for treating that are limited (although CBD is really helping my pain) and lets hope the anti coagulant will help me also.

[riannabri in reply to CormorantWatcher]

all your symptoms add up to point towards Autoimmune and maybe APS?

I was positive on every test, TgAb, Anti Cardiolipin AB's, ANA, and so many others with an very strong clinical picture to match - so its not a maybe APS its a certain

[Manofmendip]

Hi

I have also been under Prof Hughes care. I agree with my colleague APsnotFab, please get back in touch with Prof.

Dave

[CormorantWatcher]

Ok. Well I hope you get to the bottom of it. I never had any symptoms from APS other than Clots and PEs, that they originally put down to UC and then after collectomy realised it couldn't be and tested for APS. I got a low positive indicator (which they weren't convinced was conclusive), then a second a few months later. With all of your indicators, you'd think there'd be some urgency...