WHATS THE PROBLEMS LONG TERM WITH HUG... - Hughes Syndrome A...
WHATS THE PROBLEMS LONG TERM WITH HUGHS SYNDROME
Well, I always have stump pain, have had 4 other strokes due to coumadin too high. But the last one was in 1999. So feel pretty good about that. I think we all have different problems. But it's nice to be able to voice our opinions with each other.
true but im not dealing with the news very well havent had a new clot since march wich is good news but hes told me im a very high risk off more clots
I hope if they are managing your anti coagulants at the right INR level for you, that this will reduce your risk, also some people find that taking 'plaquenil' for this can help with the fatigue, and are you being seen by and APS specialist at Manchester Hospital? I hope you feel better soon, actually you will probably find that this group lifts you a bit, as we are all in the same boat to varying degrees. All the best. Mary F x
im due back at the hospital next week and hes gonna start me on emune system supressents as well as treatment for my blood i do get very tierd all the time
This sounds very promising, it will probably be something like 'plaquenil' and they take quite a while before they work, they suit some people very well. Tiredness is a real problem at times with Hughes Syndrome. I hope you feel a bit better soon. Mary F x
thank you its good to talk with someone who has this condition im deverstaed at getting it my two daughters now have to be tested for it
Mary, do you know why we get so tired??
I know for me in part it is low oxygen, but on the Hughes side, why are we tired? I wish I understood, then maybe I could explain to my family and friends 
Do you know which immune system supressents they will start you on? I am due to start Rituximab in the next 2 weeks to supress immune system. Nobody has ever mentioned Plaquenil for tiredness, is this something my GP could prescribe? I do have a very good GP, she researches APS all the time. My Rheumatologist is very good but feel like I am pestering him all the time about the tiredness.
I have clots whilst on treatment, currently apprximately every 3 months and that is why they are trying to supress immune system. I was on Cyclophosphomide but this failed when I presented with Hepatitis. That is why they are now trying Rituximab. I will let you know how this goes. I agree about the tiredness but they hope this will improve with this new treatment.
Wich area are you from? Do you have a good Rheumatologist?
I am in Leeds and I do not have a Heamatologist I have a Rheumatologist from St James's. I did have a Heamatologist at Bradford but he was not good at all. Dr Martin is my Rheumatologist and he is excellent, he is in touch with London and he trained with Prof Hughes in the early days. I am also lucky to have a good GP in Leeds as she takes an active interest in APS and keeps herself up to date with everything from Consultant. It may be worth getting in touch with yor Heamotologist to see what they are planning to use to suppress immune system.
Sooooooooo tired all the time and all joints hurt but apart from that I have both Venus and Arterial Clotting problems. I still work full time though which is becoming more and more difficult. Having said that one lady on here said that Rituximab was her life saver and made her feel so much better so I am hopeful that when I get this in the next couple of weeks, things will improve dramatically. The only problem with Rituximab is that they have to apply to your local PCT for funding, however I am lucky to have a good Rheumatologist who can get the funding for this in Leeds.
thats what i have been told its all down to funding but i say how can people play with lifes off others if they need the treatment
The funding can be obtained, push them to make the application.
The funding is through just waiting for a start date. Also another person in Leeds has had the funding for this. It's a postcode lottery though as Bradford is only a couple of miles from where we live and their PCT do not allow funding.
will have to see my doctor next week im in manchester dunno if we can get it here yet
Good luck I hope you can get it
I forgot to mention that in order to even apply for the funding for Rituximab your Doctors will have to have tried you on other drugs like Cyclophosphomide. I was to have 6 treatments of this before applying but it failed after 4 treatments.
I talk to my doctor but i dnt feel they understand me and wot im going through,sometimes its like banging my head against a brick wall with them.
Probiotics and long term prednisone.
Long term effects of warfarin
ANTIPHOSPHOLIPID SYNDROME AND HIP PROBLEMS.
Long term side effects of warfarin
Problems with Coaguchek
