Sticky Blood-Hughes Syndrome Support

london bridge appointment outcome

Hi

Just reporting back on trip to London Bridge hospital this week. The staff were friendly and the consultant seemed thorough and helped move things forward a good deal. Though I seemed to have inadvertently reduced my symptoms in the half hour before I went in, leaving them much less darmatic than usual. I think walking up and down trying to get from the new to the old building made the novelty purple legs less purple (maybe as increased circulation). And being unable to resist grabbing and holding a cup of free hot chocolate just the before going into the consultation meant that the raynaud's was also not at its "best". And then I couldnt find the pics taht Id taken on my phone of the livedo and rayanud's!

Anyways, he has added clopidogerel (which sounds like not very good poetry) to the low dose aspirin and will see whether it helps. The aspirin has already reduced headaches. Im a little bit worried though about some of the listed posisble side effects of clopidogerel. Some sound quite major. Im not sure if others also hesitated before taking?

R

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Glad you were listened to.

Re: clopidogrel - been on it for over eleven years, no side effects at all. I take every night/my aspirin I take in the morning.

Give it a go xx

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Thanks Holy. Feeling listened to was a breath of fresh air after some experiences with GPs. Hope you doing OK.

R :)

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Hi Charlieab,

I am glad that the Asprin helped with the headaches.

Have they taken the antibodies for our illness once more? Do not remember if you have already told us they are positive. Clopidogrel is an antiplateletdrug like Aspirin (not an anticoagulant drug) and many here have it together with baby-Aspirin.

Holly says with no sideeffects also. This must be a Specialist you have met at London Bridge hospital and I think you should do as the Doctor says.

Best wishes from Kerstin in Stockholm

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Hi Kirstin

Hope you are doing OK and things are warmer in Stockholm than Wales. Ive been tested once for the three main ALP anti-bodies and were all negative.

Yes, I would have confidence in him for sure. He did mention hydroxychloroquine but said that maybe not with tinnitus. He also mentioned azathioprine which is immunosuppresant I think but as a possible addition later on. tbh I would like to try plasmapherisis but getting that on NHS could be a major struggle and affording it privately would require selling my flat and the flat next door!

Thanks again.

take care

R

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I am very pleased your appointment went well. My headaches have been much relieved by taking baby aspirin x2 a day, split apart.

If you are worried /concerned (understandably) about Plavix (clopidogerel), this may help:

nhs.uk/conditions/clopidogrel/

With good wishes,

Ros

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Thanks Ross. Hope you're doing well. I thought I'd replied but it didnt appear. Apologies if there are now multiple replies. Anyways, glad aspirin worked for you. And thanks for link. Im going to try lots of fish, exercise, stress reduction (though thats seems impossible atm!), before they start the Plavix, and see how things are go. I worry about taking meds and about not taking. Not to mention worrying about pretty much everything else!

And Ive just remembered I didnt take aspirin this morning!

best wishes

R

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My husband (and carer) has just had an unexplained DVT in the leg and is taking warfarin and Low Molecular Weight Heparin injections until his INR is stable at 2.00. This was completely out of the blue as he is the healthy one! However, this will get under control and in 3 months, we will see the consultant and take it from there.

It's understandable for you to feel stressed! One way of dealing with this is to talk - and if you need to talk, I'm here. Just PM me.

Now, I hope you remembered to take that aspirin . . . .

With good wishes,

Ros

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Hi Charlieab,

I suggest you buy a box for tablets. I do not remember now if you take other drugs also but I guess you do.

It is easier to remember if you take the box with you when you have breakfast (I take tablets twice a day) and also before you go to bed. It is important not to forget the tablets especially those for our thick blood. It will be a rutine soon but find a way to make it easier not to forget.

Best wishes!

Kerstin in Stockholm

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Hi Kirstin

Im not taking otehrs atm but will be I guess. So a box sounds like a good idea. Just hope that it stays relatively empty!

I think at a meal time makes a lot of sense. Then should become automatic.

best wishes

R

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If you have found a Specialist of autoimmun illnesses who has had patients like you before (sero-negative) I think you can feel comfortable. Perhaps you need more drugs but then (with a Specialist-Doctor) they make you fell better and with less further symptoms.

Have you read "Sticky Blood Explained" by Kay Thackray? She writes about different symptoms. I have several books from prof Hughes and they are all in pocket like the two written by Kay.

Kerstin

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Set an alarm to repeat on your iPhone- then go to your pill box😉

Mine is set for 9:00am and 9:00pm- ( because I have morning and evening anti convulsants also.) Warfarin is just at night.

Best way ever. Empty pill box is how to make sure you took Meds.

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Hi kelly

Good advice. But tbh I would forget to have my phone with me, turned on, or charged. I think always after breakfast would be best for me. Though apsirin seems to help me to sleep (maybe placebo effect), so late at night would be good too (if not on empty stomach).

R

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Hi Ros,

You are the first one with APS I have heard who has taken Baby-Aspirin x 2.

You have SLE also. Is it because of your SLE you take double dose?

Also Plavix (Clopidogrel)? Any other drug for anticoagulation?

Kerstin

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I found that taking one baby aspirin did not do the job and I was still getting headaches - not as severe - but enough for Dr Hughes to suggest taking 2 which I split into morning and evening. I suffered severe headaches and all kinds of symptoms since puberty, but none of this was diagnosed until in my 30s.

I also take Plaquenil, which is a mild blood thinner and this works well, although sometimes I notice that my blood sometimes takes much longer to be drawn when taking blood tests.

Completely out of the blue, my healthy husband suffered a DVT in his leg and he is taking warfarin and LMWH. His INR is 1.5 and they want to see it at 2. Fortunately, he does not have APS!

With good wishes,

Ros

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Hi Ros,

So sorry about your husband! But as he does not have our illness and you as an Expert he will soon be ok I hope and guess.

You then take Aspirin x 2, Clopidogrel and also Plavix and Plaquenil, is that right?

Kerstin

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No. Only baby aspirin x2 and Plaquenil plus medication for SLE: Methotrexate, sulfasalazine, corticosteroids . . . .

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Good morning. Hope you are feeling much better! Regarding the clipodogrel and side effects. I'm on it as well but not for long (warfarin as well) and have a sore body and joints and a constant runny nose and cold like symptoms. No appetite as well. What did you read about side effects please?

Ben

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I was on clopidogrel but felt that I had side effects, was switched to aspirin for a month's trial. Difficult to separate side effects from after effects of the stroke. Drugs.com is a comprehensive source of info.

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Hi EffieGee,

I wonder if you have got our illness here HS/APS? You are a member of two other sites on HU.

We have very thick blood and get strokes from TIAs and clots etc.

If you take Clopidogrel when not haiving too thick blood like us you may react otherwise on Clopidogrel than us. Ask you Doctor as we are not medical trained.

Read about our symptoms and if you think you have them ask to be tested for it if not already done. We can sometimes have the illness with negative antibodies and then it must be diagnosed on the symptoms instead of on the antibodies.

Best wishes from Kerstin in Stockholm

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Thanks, I'm struggling to get any answers from my doctors and have mentioned APS to my consultant.. I started off on HU with different strokes not knowing where to go for information or support, APS seemed to be a logical step to find out more as I have life long auto immune conditions. It's Been like wading through treacle to get information.

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EffieGee.

You say you have autoimmun conditons ..... which do you have?

As APS is a very complicated illness and rare and few Doctors know about it, you should absolutely try to find a Doctor specialized in autoimmun illnesses!

Ask to be tested for HS/APS;

Anticardiolipin antibodies (aCL)

Lupus Anticoagulant (LA)

Anti-beta2-glycoprotein-1 (anti-B2GP1)

As I said before we can have negative antibodies. You do not need a Specialist to be tested for the 3 antibodies they test for a diagnose of HS/APS. Could perhaps be done by your GP or Consultant. I live in Sweden so I am not sure how it is where you are situated.

HS/APS, Lupus, Sjögrens and Thyroidea can go "hand in hand like some sort of cousins" . Get a Specialist!

Kerstin

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Yes thank you, I know. But getting these tests in place is a long way from wanting them in place. Maybe things are better and easier to arrange in Sweden. As I've already written I have asked for investigations through my stroke consultant.

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Hi EffieGee,

I am not sure if I understand your answer now.

You just have to take those 3 tests I mentioned. If they are positive it is easier to get a diagnose. But they are not always positive (they may be sero-negative also from time to time) and then it can be more difficult to get a diagnose from the symptoms only.

It should not be easier in Sweden if you are persistant enough and have symptoms.

Kerstin

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Thank you. I understand what tests are involved. My consultant has not replied to my email asking him to take this forward.

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Hi Ben

Thanks. Hope you're doing OK. But sorry to hear about joint pains and other problems. Did you ask doctor if these could be a side effect? The link that Ross posted above is good and here is one I looked at. drugs.com/cdi/clopidogrel.html

best wishes

R

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Hi Benna,

Hope you have got a Specialist for your HS/APS. What symptoms do you have? You take both Clopidogrel and Warfarin (what therapeutic range please?) How long have you been on Warfarin and Clopidogrel? Started at the same time?

Best wishes from Kerstin in Stockholm

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It's good to be listened to and have a good doctor. Think we all go to doctors at some point n symptoms disappear just before going ..could kick yourself.

Hope the clopidogrel helps you further.

Will he see you again

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Thanks. Hope you're well. True about a good doctor. I was so sure that I would be well prepared and then the bus to London Bridge was slow, I was running late, and good inetntions went out the window, and I arrived flustered rather than organised. And then the receptionist got chatting in an amusing way but this set things back a bit timewise. That and getting lost of course. There should be better signposting for patients with brain fog. I ended up in ICU at one point! I didnt even think there was an ICU there.

I will see him again I guess, once any drugs have had a chance to work or not work. Just wish there was a decent doctor in wales and on the NHS. I lived in London since uni but its not really my favourite place anymore. More recent bad memories (like starting to get ill) seem to drown out the older good memories (like first job, first marriage etc).

Anways, I might have gone off topic there!

R

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I always go off topic..get chance to chat and I'm away...lol

I am at Guys on Friday. I live Lincolnshire humber bridge way travelling doesn't bother me as long as you get good doctor. Love Wales but long way to travelling for you.

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For what it's worth, I was on clopidogrel for several months and had no problems with it at all, in fact biggest problem was pronouncing it, but even the medics have problems with that. Of course that doesn't mean it will be problem free for you - but the only way to find out how it is for you, is to try it, on you!

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Thanks Ray. Hope you doing well.

Why did you come off it if OK to ask? Im thinking of trying aspirin on its own for a bit longer maybe.

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I was put on clopidogrel after stroke, then moved on to warfarin later following APS diagnosis, still not convinced that was a good idea (have had lots of problems since warfarin), but the majority of the doctors were quite insistent.

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Clopidogrel is also,known as Plavix here in the USA. It’s much easier to pronounce plah- Vicks... lol yes, much easier then clopidogrel🤫

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