end of my tether: Hi all So once again... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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end of my tether

Brychni profile image

Hi all

So once again I am contemplating going private just to get some sensible answers and get on the right treatment plan but with latest developments I am not sure now if I need rheumatology or haemotology. I will be posting this in APS group and NRAS.

The long and short of it is that I have finally had the follow up blood test for antiphospholipid antibodies which I had 2 YEARS AGO !!!! And surprise, surprise it is still positive.

This is very important to me as it is possibly the cause of my migraines which, on top of everything else are ruining my life. I have tried everything inlcuding HRT which I am still persevering with. I ALMOST paid for the CGRP migraine injections privately as my appointment with the NHS headache clinic won't materialise until 'sometime' next year, when the second blood test result cam through, thankfully otherwise I would have parted with in excess of £1k for something that could easily not work and could easily be replaced with a daily aspirin which is standard treatment for people with antibodies who have hitherto not had any blood clots. That'll be me. On top of all that it appears that hydroxychloroquine is prescribed for APS and can over long term use reduce the antibodies. Is this why they gave it to me when I was diagnosed with Unidfferentiated Inflammatory ARthitis? As some of you may remember I stopped taking it because I didn't feel it was doing much. at that appointment the consultant pointed out the marbling on my legs which I thought was normal and asked lots of questions which I know now were relevant to APS. Why on earth didn't she just say that??? Why on earth didn't she just say it causes severe joint pain for which we prescribe hydroxy and btw you should take an aspirin????

I honestly feel like I am doing this all myself. I could have come to this conclusion with the help of Google and a couple of blood tests. And all the time I am in serious pain ALL the time even at night.

On the APS website there is a list of specialists in Wales and they are mostly rheumatologists. Does anyone know if any are particularly knowledgable about APS? Should I go for one of the haemotologists listed?

My nest appointment with rheumatology is a telephone appointment early next month. I feel like I'm going to end up telling her what I should be doing. There doesn't seem to be any joined up thinking.

Rant over! Any tips about consultants gratefully received 🥰😘

13 Replies

Hi lovely Mind if I private message you ? X

Brychni profile image
Brychni in reply to Tiggywoos

Hi T - yes of course. x

As I understand you have tested positive twice now for anti-Beta2-Glycoprotein 1.As I told you last time you may have APS with only one antibody positive. I have all three positive but that is very individual. The antibodies may go away for some time and come back later but this illness never go away.

As I told you, you should look for a Specialist of autoimmun illnesses. A knowledable Specialist also know Sjögrens, SLE (Lupus), Thyroid-issues among others and that those may often go together with APS.

But as I understand it you have been treated for your bad migraine with a lot of different drugs but not with an anticoagulation-drug. APS is not wellknown here in Sweden and not in other countries either as it is so rare but it is underdiagnosed that is quite clear.

Prof Hughes (when he had a patient with positive antibody and some typical symptom of APS) started a trial a couple of weeks with Low Molecular Weight Heparin to see if the symptoms eased. If they did he started the patient on Warfarin.

It is a fight to get to a Specialist and to get the correct diagnoses and treatment. In our case we have too sticky blood that has to be thinned at a rather high INR also. We do not often bleed from this illness but may clot rather often with microclots and embolies that are not seen easily on a normal Scan of today. So it is not always easy to detect I can tell you.

Good luck!

Wher are u in Wales....Dr Anderson and Dr Sarah Lewis are haemotologusts in Wales. Sarah Lewis is fab..I'm in Newport. Sorry your having such tough time

Brychni profile image
Brychni in reply to rach1081985

Hi rach - I am near Carmarthen one way and Brecon and Builth the other.I'm not sure if I need haemotologist or rheumatologist however, during a recent hospital trip for horrendous migraine it was discovered that my haemoglobin levels were 'ludicrously' high and iron levels really low. Iron levels up again after ferrous sulfate tablets and the panic over haemoglobin and pledges to monitor it have disappeared! Also my blood pressure is so low that the last three times I have had it taken at GP, rheumatology and in A&E they have claimed they can't even hear it through the stethoscope and have had to do it again. God knows what all that is about.

Then there is the weird bruising. SMall dark red almost purple, often perfect outline like a mole which pop up and then fade away. The big bruises in the weirdest places like just below tummy button, with bright purple marks that sometimes don't fade. I have shown these things to the GP and they just say they don't know what it is and don't seem to care or at least aren't concerned. I never get any answers.

rach1081985 profile image
rach1081985 in reply to Brychni

Awww u really going through some shit..both are useful if u can find one .but I would recommend Dr Sarah Lewis she's haemotologust.. Ur quite a distance from me.. I can't really help with Ur symptoms I'm sorry but really wish I well finding specialists...take care and hope u get some answers soon.. message me privately if you like anytime .x

My migraines ended when I went on warfarin. So obviously, mine were APS related. But not all are. Have you heard of connection to mitochondria deficiency, which itself may be caused by Vitamin B deficiencies?

ncbi.nlm.nih.gov/pmc/articl...

Brychni profile image
Brychni in reply to GinaD

Hi GinaThe Ribolfalvin supplementation was something the Migraine Clinic recommends and I have been taking the high dose for a few years now. Not sure it does anything in my case. Sometimes I let it slip and then I'll have an attack and order some more! But I don't know if there is a link in my case.

I feel generally really, really ill at the moment. Reflux, easily tired out, terrible pain in my right arm and shoulder (and other joints) I often feel momentarily dizzy too and when a migraine is looming I have noticed over the past year or so that my eyesight is affected and I really struggle without my glasses especially when driving.

Another new thing is feeling light headed and dizzy when I exercise. Until fairly recently I used to take the dog out every day for at least an hour and run for about 3.5 miles maybe 3 times a week. I stopped the running becasuse of my shoulder pain quite a few months ago but still walk the dog up hill, very vigorous but recently as soon as I heat up and get my heart going I feel weak (especially in my legs) , shaky and lightheaded to the point where I have to stop sometimes for 10 minutes and even then I don't fully recover.

I t seems that everything I like doing is slowly being taken away from me.

I’m so sorry you’re having such a rough time. I had terrible, severe migraines for most of my life. They got Much Worse when I went on warfarin. I was on warfarin for 10 1/2 years. I am triple positive, plus Hashimotos and Sjogrens, etc. I never connected the warfarin and the increase in migraines but my APS specialist did. She found that I react to warfarin in a bad way, with the migraines. Seeing a neurologist never helped. Anyway I am off warfarin and on apixiban going on 6 years now. Migraines much reduced, also on a CGRP too. Don’t give up. The answer is not the same for every person, so it is often a hard road for us with APS. Many of suffer for years and still struggle for answers. Good luck to you.

Brychni profile image
Brychni in reply to Tofino5

Hi T - how have you found the CGRP injections?

Tofino5 profile image
Tofino5 in reply to Brychni

Hi Brychni, this is my 2nd type. First on Ajovy and it worked miraculously the first month. The second month I had a continuous severe migraine the whole time, which took awhile afterwards to resolve. So Ajovy wasn’t good for me. As you probably know, you have an injection once a month. There are 3 CGRP inhibitors, and they work in 2 slightly different ways.

Now I am on Aimovig, 7 doses in. The first 4 or 5 doses I really wondered if it was working, but now, at 7, I know it is. I’m a little afraid of long term effects, which seem unknown? But I am happy to have this relief. Getting off warfarin was the best thing I ever did. After a couple of years, the migraines started to increase to maybe 50% of what they had been, so I really feel like with the CGRP I have won the lottery.

I still find the injections are really awful to do, but I grit my teeth and do it.

I feel for you with all that you have going on and I hope you get some answers. Either bruising maybe a hematologist is your best bet, since they deal with the blood and vessels???

I agree that it is time to " go private." Here in the States, those of us lucky enough to have a private insurer are required to see a physician who is " in network." But I have successfully consulted with out-of-network physicians without having to pay an arm and a leg because my insurance company's nurse hotline is manned by very informed and sympathetic nurse administrators who approve my occasional out-of-network requests. I don't know the NIH procedure for these things, but perhaps you can make an argument to someone that finding and treating the functional cause of the migraines is going to actually be cheaper in the long run. Good luck!

MaryF profile image
MaryFAdministrator

Hiya, a lot of us have had dire problems getting a consultant and then getting some sort of joined up thinking with regard to sensible management of this disease and associated diseases. There are some consultant son here, and it will expand over time. It is a good idea to be on Aspirin and if the Plaquenil is tolerated by you, it would be good to stay on that, it is slow to work, you have to be patient with it, I can't tolerate it, but my daughter takes it and has done well on it. It is also important to rule out problems with B12, D, Ferritin, Folate and your Thyroid as everything can add up to making things worse. ghicworld.org/ghic-consulta...

I think general care has been more tricky with Covid, hopefully things will ease up a bit for you. MaryF

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