Sticky Blood-Hughes Syndrome Support
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One step forward two back

This year hasn’t started off great . First bad palpitations and breathlessness but all test came back fine . Only problem with it Is my GP won’t send me for a echocardiography now .

Then I came down with a virus and I’m just getting over it now ,sweating, fatigue couldn’t breathe . I have been bed ridden for a week . INR been on the high side . Brought a few of my APS symptoms back , numbness , head mush which has upset me . I felt that bad when it started I thought I was building up to something really bad and I was scared if I’m honest .

How do I build myself up after this awful virus .

It doesn’t help as I’m starting with the menopause too ( shoot me now )

See a new neurologist on Tuesday a Dr Sussman at Salford to see if he can help with the neurological side effects of APS , god I hope so

Moan over now . Just glad I have this site x

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Oh I know how you’re feeling!

I had a run of feeling ‘normal’ and thought i’d cracked it. However, a virus over New Year and then a bleed that put me in hospital has left me feeling slightly defeated.

However I have an excellent neurologist for my neurological symptoms which have never been completely under control. I’m starting an immunosuppression drug today to hopefully try and control that side of things.

Good luck with your neurologist.

No real advice, just wanted to let you know you’re not alone x

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Which immunosuppressive drug? I found azathioprine inhibited my warfarin so I needed much more. I went from 7 - 20mg.

My dads on both drugs but that didn't happen to him?

Just be aware and praps get extra checks my INR dropped from 4 to 1.1 within a week.

Also be more aware of washing hands and skin, washing fruit, veg, salad checking food dates being around people with bugs and infections. I have to stop taking it for a week if on antibiotics or ill

Good luck I hope it helps bring u better health 💋

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Hi

Yes it’s azathioprine and I’m aware it can affect INR - but thanks for the heads up anyhow.

I have my own INR testing machine at home so I’ll be testing most days this week x

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Thanks Yllek . You sound like I feel . Good luck with the tablets.

My haematologist mentioned immuno suppression tablets last time but wanted to see if I had another auto immune disease running s long side APS but all test came back clear . Xx

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Neurologists Paul Holmes at st Thomas’s and Kath mummery at national hospital for neurology seem to be offering azathioprine for aps neuro symptoms

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Thanks for that . That’s the drug that was mentioned before . Time to start putting my foot down I think x

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He’s my neurologist:-) x

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What kind of doctor mentioned azathioprine to you? Where are you located? London? Also, I went through menopause in three months.. my gynecologist had never seen anything like it. She thinks because I was so sick starting out. Good news/ bad news! Saw her in Sept 2017- not menopausal. ( blood work ) then saw her December 2017 and said... I’m having hot flashes, I think I might be in menopause, can you check? Went back two weeks ago to a very surprised doctor! ( I’m 48. )

Hopefully you’ll do the same.

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God I hope so , had a period last week and the bleeding was horrendous .

It was my Haematologist Prof Hay who mentioned Azathioprine but he wanted me to see prof Bruce rheumatologist first . I see prof Hay in April and I’m going to put my foot down with them from now on x

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Sorry Kelly I go to Manchester to see all my Dr for APS now . I was all over the place before and no communication at all so it’s s relief now they can speak x

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Amy, that’s right. Manchester. I’ve asked you this before! ( my memory... well in all fairness I’m still in bed. Letting the family/ hubby sleep in before I go to kitchen and make coffee- start a fire... so... take home message there... I’ve not had my morning coffee!

I was up in the night with the dysautonomia thing with tummy. Hmmm. I think INR is ok.

I’m sorry you are having a hard time, Amy.

I’m seeing dr Jill Schofield in Colorado. I’m not sure my first appointment date. I’ll know soon. She studied in London under Hughes. She’s Rheumatologist . Specializes in APS and dysautonomia. I’ll try to help you when I learn more.

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Please read my comment above about azathioprine 💋

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I’ve tested negative for other autoimmune diseases but my neurologist believes there’s an underlying immune reaction which makes the neuro symptoms occur. As I still get some symptoms, although milder, with a higher INR he doesn’t think it’s all blood flow related.

However he does consult with Prof Hunt and she believes it’s all blood flow related and I have cerebral ischemia.

Regardless of the underlying mechanisms they both agree with the azathioprine- so I’ll give it a go!

It’s a rollercoaster living with this isn’t it x

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Your not kidding. It throws something new up every day . I turned 50 earlier this month and I have really started to think about my future . No way can I work until I’m 67 that’s if I’m still here. My pension is crap and I really do want to work , it keeps me sane and I have people around me who keep an eye on me but I’m having a rough patch at the moment . Just hoping it improves soon .

Let me know how you get on with the AZA . My daughter is on AZA for a kidney transplant .

Good to be able to talk x

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I worry about the same issues with Work - I work 16 hours and it’s hard enough to do that! I’m only 40 x

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God I wish I worked 16 hours 😩

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Haha I am also a mature student and I’m studying hard to complete my degree in May - after that I planned to increase my hours or do postgraduate study but I’ll see how my health is x

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Im SO impressed!!!!!

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I usually manage 4 hours of therapeutic work a week but too I'll at the moment with heart issues as well. 💋

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In my experience that doesn't mean u don't have another one it means they haven't managed to capture it in ur bloods yet! Sorry 💋

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It’s worth a trial. It’s helped me.

Btw, I also have started with palpitations, breathlessness and fainting, my heart rate was 42, been referred to cardiology.

It’s awful when every symptom might be a stroke, dvt or heart attack, isn’t it. Not sure our GPs always appreciate that’s why we keep pitching up with new concerns

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I did go to cardiology a few years back and they found a leaky heart valve. I have had palpitations for a while due to having no Thyroid , the meds were too high . I thought I was leading up to a heart attack earlier this month but all tests were fine . Then I read that starting the menopause can cause palpitations . God knows what is going on . I live a lone so can be very scary the thought of another Tia or heart attack .

They started me on Amytriptyline which did help but since Christmas I have gone backwards , very upsetting. All I want to do is be able to drive to work , Work and be able to drive home , not much to ask !! 😐

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I’m sure you aware that POTS is not terribly unusual in APS. Dr Hughes told me and has written about his interest in his ever increasing observation in the link between the two. I have this- but it’s “ early and mild” - give me no real trouble heart wise.

My real dysautonomia dysfunction is in brain to bowel dysfunction- gastro paresis coupled with bowel ischemia... from APS.

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Can you expound upon feel azathioprine has helped you?

Your last post I believe you weren’t so sure you felt it was helping with neuro issues, ( if I remember correctly- lol! But this is the area in which my neuro cog tests are failing me! )

I may be mixing you up with Bacardi babe!

I’m following you women closely- the good and bad and the imbetween. So are my doctors. So thank you so much...

I have to find a name for this group of women.. help me out!

Paul’s Dolls?

No...that’s creepy. But it does rhyme...

Sweet 16? Yeah maybe! I think there are 16 of you.

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I had repeat pyschometry and scored better, so that seems to indicate it’s helping. I think they will repeat the PET scan later this year, if somehow it shows improved glucose metabolism I suppose that would really prove it

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Thank you- so encouraging for you and others! I personally want to thank you for participating in this study. Yes, I know it’s for you. But it’s an unknown. I’m sure you had moments of uncertainty. It does move research forward for many.

For those on warfarin, it’s very difficult, as it’s a cost benefit analysis not only for immune compromise analysis, but also it wreaks havoc with the INR by lowering it.

Some of us are triple positive, meaning we have the dreaded lupus Anticoagulant Antibody, so it’s really difficult to judge by the coagucheck XR homechecker where we stand with our INR.

For example, day before yesterday my home checker read 5.8 by finger prick. ( I checked it at the lab at the same time the phlebotomist drew from the vein.)

By vein, The value was 4.2- in range!

We are seriously consideting azathioprine. I show all signs of cerebral APS. Declining neurocognative tests. Exactly in the same areas you and the others have described. But severe discrepancies- short term memory- and word finding - and with my vision problems I can’t do the spatial relations at all. I have no 3-D. -and the images blur and move. My neuro Opthomologist says not only is is optic nerve damage- but it’s also a central brain processing problem.

We are thinking to ask Paul Holmes to see me initially , once I have PET scan done here - assuming it will be abnormal- then have my team here follow his protocol then send him results - so he can use data. I can’t fly into London for appointments with cath mummery- I’ve read the appoints can be changed last minute... I’ll miss return flights! I have a child here in school- work. Just hotel costs alone- what a nightmare. I don’t even think cath mummery will see a patient privately. I can’t afford all these testings privately.

I can have the same tests here. Under my insurance.

It’s the expertise consults I need- and interpretation.

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OMG that's what I'm going through suddenly my hear rate dropped to 49 a week later 42 then 40 I was rushed to hospital then it dropped till 34 with occasions of 19 bpm

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You should have a Specialist to remit you to an Echocardiography with doppler. The GP is perhaps not the right person to do that.

You did see a Cardiolog some years ago who found a leaking heartvalve. You also have breatlessness. Those symptoms you should talk with a Specialist about. They can be APS related. Wish that Neurologist will know well about APS and its symtoms!

Good Luck!

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Amy - (and Kelly/Yllek)

Something I very recently learned from my 16 year old son ‘s pediatric Rheumatologist in Austin Texas ( Ruy Carrasco.) - Our son Grant also flagged for APS.

Dr C examined me carefully also. He was a FANTASTIC doctor! Amazing depth of clinical and academic working knowledge of lupus and APS. Please add him to American list, Amin!

He said, ( upon examining my horrible raynauds) you have really lost must if you tiny capillaries in nail folds-

Then he said... “you know, raynauds can also affect your lungs, heart... and even things like nipples. “

I couldn’t believe it. Just before I was diagnosed- I went fo my gynecologist- I told her t thought my hormones we off. I laughed and told her I had ,”ENS”.

“What’s that”?!?”, she asked .

“Exploding Nipple Syndrome”, I explained very matter of factly and forgave her for not having learned about it in medical school😂!

( I had not worn any new bras, shirts, or anything that have chafed... and it was not the classic deeper breast tissue closer to under the side area associated with hormonal tenderness. This pain was limited to just nipples and was intensely painful and was producing a really purple color.) It came and went for about two months.

I was diagnosed with APS in that time frame.

I nursed my children fine- no problems-the milk always let down perfectly- but it’s something for younger women to be aware of perhaps? Maybe the Heparin shots would help.

I have also had a lot of heart pain with this when INR has been low but then it clears up. I wonder if this could be it. My heart sounds fine. EKG is fine.

I wonder now if this is what is happening in some heart episodes that can’t be detected? Or might be “ transient”, or considered “ Vaso spasms.”

Then the breathless issue! With the lungs...

it’s just all very interesting that it could be Raynauds in these places.

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U moan away we understand and while ur struggling someone else is having a better period so is happy to help.

I'm so sorry ur suffering like this. It's so frustrating how a little virus can set us back.

palpitations can be scared but are rarely harmful (I'm not saying ignore them). When u were breathless what was ur oxygen saturation % ?

The thing with the heart is they can detect and treat 'plumbing' issues with stents and bypassed and electrical faults with cardioversion, pacemaker, define or meds. But they can't seem to treat anything else. I've chest pains every day at the moment which they said wasn't my heart ❤️ then suddenly my heart rate dropped to 34/46 bpm so I now have a device in my chest doing 24/7 ECGs

If ur INR is high, I'm surprised ur symptoms came back? Is that what happens? I'm usually feeling great when that happens then they have to lower it 😞 My INR is 4-4.5. What's yours?

If ur starting the menopause u must discuss it with ur doctor there maybe things that would help. Also concider complementary therapies like Reiki and Accupuncture and reflexology- I'm sure others can help advise u.

As frustrating as APS is try not to let it beat u. It's a struggle every day isn't it. I practice meditation and when I can have Accupuncture and Reiki (which helps me with sleeping). Also positive thinking. Fresh air when I can. And drawing & colouring when I'm able.

Lots of love 💋

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Amy 1808, just a thought, your palpitations and breathlessness. could be caused by something other than Hughes syndrome. For example Atrial fibrillation (AF). If you check your pulse, when you have palpitations, is ithe rhythm regular or irregular? AF can be confirmed by ECG but only whilst having an episode, at other times ECG will be normal. More information on AF forum here on Health unlocked.

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My fatigue improved once my B12, D and Iron was checked and I started supplementing, also checking out my Thyroid, beyond just the TSH that is usually done, I regularly save up and do a detailed panel of private tests. A slow thyroid will make your fatigue unmanageable. MaryF

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