Scary Update on a thread of mine - Hughes Syndrome -...

Hughes Syndrome - APS Support
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Scary Update on a thread of mine

LupusKaren
LupusKaren

I thought I would update you all on my original thread, though not the update I would have liked to give.

healthunlocked.com/hughes-s...

I had a long chat with my GP and he agreed to refer me to Hematology for advice, especially as I was becoming more symptomatic as the weeks went on. I had an appt ready for 4th January 2019.

Sadly I became very unwell 6 weeks ago, breathlessness, chest pain, and despite 3 visits to A & E was turned away, that all ended yesterday when I was blue lighted into hospital.

CT Scan with contrast of lungs, revealed multiple clots. I am now on Heparin injections into the stomach. I saw a specialist today, who wanted to put me on Rivaroxban, which I declined after reading about it on here, and also due to the fact, I am currently treating two stomach ulcers, a new tablet I do not need.

Is there any reason why I cannot stay on Heparin, which is Fragmin 15,000IU/0.6ml long term. Injecting does not worry me. My GP is fine with it, but we realise we maybe overruled by the Hematology team, clearly I have to be on something now, but I want it to be right from the get go.

Any advice gratefully received.

14 Replies
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HollyHeski
HollyHeskiAdministrator

Hi, sorry your having to go through all this, it madden's me that you have to wait for a clot before being taken seriously.

I dont see any reason for you not to stay on the fragmin, especially if your GP agrees.

Is the haematologist you are seeing in January an APS specialist? Quite important that you see someone that understands us.

If so, they may want to try you on warfarin, as this is still the preferred treatment.

I'm triple positive and really didn't get on with warfarin, but at least I tried. I've now been on heparin for over 10 years, with no further clots.

This for so many is a decision between doctor and patient, as there really is no rule that suits us all.

I really hope you feel better and can enjoy Christmas xxx

lupus-support1
lupus-support1Administrator

I can only recommend you see an APS/Hughes specialist such as Dr David D'Cruz, who was trained by Dr Hughes & are both at the private London Bridge Clinic.

I am very concerned how specialists, be they haemotologists or rheumatologists, who are not expert in SLE or APS ie do not see and treat lupus or APS patients daily, make decisions which override the treatment which has been successful. To wait until someone has a clot is not practicing medicine, but something quite different. I suspect this is to do with the "sue-the-doctor mentality" which prevents some doctors from administering the correct treatment.

I am truly sorry for your unnecessary suffering and anxiety.

I wish you a happy Xmas & a happy & healthy 2019.

With good wishes,

Ros

HiddenThis reply has been deleted

Thank you all for your very supportive and reassuring replies. All the advice will be taken seriously, and going into my Hematology appt, I feel prepared, I am not adverse to fighting my corner, strengthened by, and I have to say it, incredulity at the medics who dismissed me recently, leaving me in severe pain, doubting my own sanity, and not to mention life threatening situation. My GP has already said, if you want to stay on Fragmin, I will support it, in fact he has already added it to my repeat prescription list. I will see what the Hematology dept have to say, and if I am not happy I will definitely make plans to see Dr D'Cruz privately, I know there is a wait list.

Can I just say a massive thank you to you all, your knowledge here is second to none, without it, for example, I would not have known to decline the Rivaroxban, and have printed off the information in the links provided in a thread, to take with me on the 4th Jan.

I still feel very unwell, but hope to at least manage to salvage some of Christmas with my family.

Wishing you all a very Merry Christmas and Happy New Year.

I'm currently injecting with Clexane (fragmin) as I was on Warfarin and have suffered both clots and a very serious bleed while taking warfarin. I'm waiting to see if they'll keep me on Clexane. I doubt cost is an issue in my case as the self testing strips needed to keep me on Warfarin are expensive.

My " Im not really qualified at all to express an opinion" opinion is that: there are so many dominoes in a clotting cascade that us APSers react to differing steps in that cascade. Which is why we can differ so much in which med works for us. Recommended docs are the ones who expect that finding an effective treatment can be complicated. Inexperienced APLS docs want to play the " name it and blame it " game. If their preferred blood thinner doesnt work, it must be the patient's fault.

Karen such a shame it went this way, i hope you can find some peace and enjoy your holiday, Merry Christmas!

KellyInTexas
KellyInTexasAdministrator

I hope you are recovering. I have a very similar story.

MaryF
MaryFAdministrator

HI, you tell an all too familiar story which should not keep being repeated. it is vital that your GP teams up with the right specialist to help you, also in terms of fighting your corner, so you do not have future events. Let us know how it is going with your various appointments, and any outcome of medication reviews. MaryF

Just a very small update everyone. I still feel pretty awful, but early days. Confirmation has been received of appointments on 3 January (Hematology) and 4th January (ENT), the latter on cancer pathway to have my enlarged lymph nodes in neck, groin and armpits checked out. Long term user of Mycophenolate, so Lymphoma a risk, although the A & E doctor said my WBC normal, but nevertheless agreed with my GP'S proactive stance. Will let you know how I get on.

So are you able to keep the fragmin?

Yes I am am Wittycjt, review on 28 February with Hematologist.

Wittycjt
Wittycjt
in reply to LupusKaren

Hooray! Best of wishes

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