Hughes Syndrome

[NialSeamusDubhglas]

After diagnosis with APLS I was put on Plavix. I felt a lot better for a number of years and my very bad headaches went. Now I have the headaches back and i am permanently tired with headaches most of the time. I do not feel I can go on working any longer. Does anyone else have a similar experience? I teach in Higher Education.

[MaryF Administrator]

Hi there I echo the advice given above, Who is looking after you condition and where are you located, as perhaps some more fine tuning of your medication may be beneficial. Best of luck with your decision. MaryF

[NialSeamusDubhglas in reply to MaryF]

Thanks for this reply. My GP has been looking after my APS, after initial diagnosis by a haematologist. Although, I have just been referred back to haematology but still waiting for my appointment. I am in Southport, (North Merseyside).

[MaryF Administrator in reply to NialSeamusDubhglas]

Please give your GP this website: hughes-syndrome.org/ and the website also contains this list of specialists in the UK, it is crucial that you are referred to somebody with a full working knowledge of the condition, the charity also has reasonably priced books for sale:

hughes-syndrome.org/self-he... If you ask your GP practice for their email address, you can send all the links through marked for your GP's attention, to help them select the right person for you.

Also if your haematologist is very up to date with a full understanding of the condition, then the charity is always looking to add more useful names to it's data base! MaryF

[NialSeamusDubhglas in reply to MaryF]

Mary. Thanks again. i wwnt on the Hughes syndrome Support website and I am going to aak my GP to refer me to Dr Vanessa Martlew's clinic at Royal Liverpool. GPs do not seem to take this condition seriously!

[MaryF Administrator in reply to NialSeamusDubhglas]

Good idea, the list of professionals is growing, and best you see somebody who in fact actually give your GP more confidence with the condition! MaryF

[Sal0712]

I echo what the others have said in response. I was on only warfarin at first, but found my headaches were becoming worse. My GP decided to try me on Amitriptyline to help manage the pain, and I am a lot better. I still get some head pain, but not half as bad as it was. As I love my job as a nursery worker, I made the decision to take a step back, and go from my role as a senior to an officer, and also cut my hours. I also now work In walking distance from my home, and find it all much more manageable.

You come first, and if your boss is flexible enough, discuss your options with them! Hope you find something that fits your needs soon! Sally x

[NialSeamusDubhglas in reply to Sal0712]

Thanks for that. I will speak to the boas and aee if my GP can refer me as a matter of urgentcy.

[GinaD]

When I w first diagnosed I was prescribed Plavix -- and it didn't help at all. I was changed to warfarin and the headaches and "funny turns" ceased immediately -- though the migraines returned when I was exposed to my trigger -- bright lights -- for a few years more.

We're all different, though we share the same diagnosis. Do see an APLS specialist as e may have some more options to try. If you read through past posts you will see that many of us do better on " this" medicine as opposed to " that" one.

Gina

[NialSeamusDubhglas in reply to GinaD]

Thanks Gina. I am planning to see my GP to get referred back to Haematology.

[happee1]

wow..i am so surprised to see others get the headaches..i usually get mine located in one spot of my head..top..corner..side..back..you get the idea.. i never related it to my APS..hmm. i think i will tell my dr..they are intense and sharp when i get them...thank you for this question...

oh and i agree don't quit just get a leave of absence then see if they get better..i am on plavix also..

[NialSeamusDubhglas in reply to happee1]

Yes the headaches are back in a big way for the first time since I started Plavix. 15 years ago. I am alao permamently tired all of the time. toyally drained.

[MaryF Administrator in reply to NialSeamusDubhglas]

Some patients do very well on 'Plaquenil' for the fatigue, I did not do well, as I can't tolerate it, very bad reaction... but my daughter is very good on this! MaryF

[NialSeamusDubhglas]

Thanks that ia very useful

[Lhrlovesmar]

I have read and have been told that Coumadin is the preferred drug to control Antiphospholipid Syndrome. Not Warfarin because there are a couple differenent drug manufacturers that make Warfarin and the quality is not consistant. Coumadin is what I'm on.

[luisal]

Hi NialSeamus, After been diagnosed with APS I was first put on Aspirin for a number of years. As headaches came back I was put on Plavix which worked for 1 year. Then my doctor put me on Clexane for 15 days but it didn't work. Now I am trying with Flumarizine for the headache and a daily Aspirin.

As some others have told you before, I have learned in this blog that there are different treatments and combinations of drugs and it's success lies to a certain extent in characteristics of the patient.

This might also be the case for achieving the right balance between health and work. I know pretty well how disrupting headaches could be. And to find a different job or occupation when they linger. But for every person there is a set possibilities and obstacles of its own when deciding how much work load to relinquish for example.

Hope you will find over time the combination that better suits you for both problems.