My DS has seen the Prof and has weak positive test. Severe almost daily Migraine and extreme fatigue the biggest concern. The Prof wants a 2 week trial of heparin as plavix has not helped. GP does not understand APS and as the prof has not written that he is sure it is APS then GP is worried. Says have to ask all GPs in practice if they agree to giving heparin as NICE do not prescribe it for APS. GP says heparin is dangerous. I know this GP and he is a really weak jobs worth.
DS is very patient and is biding his time. I am fuming as my fight was until I was 44. I'm seronegative yet DS has a positive test.
Added to that I am so worried that if heparin does not cure migraines his life is ruined as he gets them 4/5 times per week and a neuro wanted him on huge doses of amytriptiline and to put up with them.
Sorry I needed to rant.
Written by
Jade
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Yes I realise this. I am so used to fighting the system it's second nature but my son is not confrontational. We share the same practice and I have been very lucky to have had 2 GPs ( now retired) that accepted totally what the Prof said but then he was in the NHS then. My GP said I always refer to the consultant as I do not know enough. The prof now being private seems to write very politely and allows the GP to think they are making the decisions.
I am lucky that I went to another GP after mine retired and she is happy to carry on with all I have in place.
I know money is the main issue as he did complain about the cost of the heparin but this GP wants the Prof to say he has APS not just a positive test.
Hi, I wouldn't like to say what I think about Doctors not being up to date with medical problems or who don't want to learn
I would phone the prof secretary and explain what has happened ? Maybe the prof could write another letter in bold black capitals size 16 font underlined
Good luck. I wouldn't expect much out of your neurologist either if he/she was like mine !
This is fairly typical unfortunately, do please print out the relevant papers from HSF site and firmly push with them, many of us have to do this for ourselves and at times children/relatives. Best of luck. Mary F x
It is fairly common knowledge from my posts here that my road has been a bumpy one. I had my diagnosis back in 1999 post DVT and now St T disagree as i currently test negative. The Prof is adamant that the diagnosis stands and he suggested, like you, that i trial heparin which i did with great results. (Read Prof Feb blog, i am very similar to this case!). The Prof has offered to invite my GP to the next GP event he runs and to also phone the local hospital to explain why i need the support i do. I think if you were to phone Kim at London Bridgeand explain what you are going through, he may well do the same for you. Feel free to message me if you need any further info. Good luck!
I have had similar problems from my GP (who I get on well with) when Prof Hughes suggested heparin. I got all sorts of scary stories to put me off - but when I saw the Prof the next time I got a private prescription and use the heparin only when necessary for my migraines. Not a conventional way to deal with the problem but its OK with me because I trust the Prof and he knows what he's doing! Hope this helps
Arrrrrrrrrr makes me want to scream. Bloody g.p's..... Call London bridge hospital and Prof Hughes will write again. How dare they mess with peoples health, if Prof Hughes has suggested warfin that is because he is a professor in his field and is trying to prevent a serious health problem. If the g.p won't listen ask him/her if they are willing to explain their errors when U have a d t or stroke and cost the NHS thousands in rehabilitation!!! Its so unfair that we have to fight for our health all the time. Due to unknowledgable out of date g.p opinion. Training courses for Hughes, lupus etc conditions needed. I hope you are able to resolve this. See another g.p next time. Good luck xxx
I have to say my GP has been good and is trying to be supported HOWEVER the unhelpful input from St T (i realise lots have had a much better experience with them than i have) has meant that she is trying to understand the situation with a very pro-diagnosis from Prof Hughes and a very anti-diagnosis from St T. From her perspective, who should she believe!? It's very difficult!
I think you need to be working with a hematologist, not a GP, and you need to ask before you agree to become a patient, what the dr's views are on APS. Otherwise, you'll be fighting all the time.
Sorry to say but it took me years to find the right medical team, but they are wonderful and I've been fine for a very long time as a result.
1st off I can fully understand how you feel. I agree these doctors rely to much on their test results instead of treating the patient as a individual. I was put on heparin when I was pregnant because I tested positive for APS. I had no problems with it. It was work for my dr. Because I needed to have my blood monitored every two weeks. I am very allergic & have strange reactions to meds, so I am afraid to take anything. Physicians would rather order drugs that have serious side affects than put a pt. on heparin. It is crazy. Why don't these doctors get with program- listen to their patients and read the research. Find a new doctor.
Designer16
I think that Professor Graham Huges is known all over the world. At least in Sweden. Karolinska Hospital in Stockholm has met him when he was in Stockholm last summer! My specialist said she had heard him and he had spoken about my symptoms. Felt very good to hear her say that. I have read several books written by Prof Graham Huges and I have APS and I tried Warfarin and was better!! Thank you Dr Hughes.
Kerstin
Yes there are many doctors incapable of understanding Hughes Syndrome.
Even those who claim to be experts in the subject.
In fact the only doctor I would trust would be Dr Hughes himself.
Yes I find it incredulous that a GP in a small town can dare to question the advice of a Professor who discovered the condition named after himself. The ordacity of it is amazing.
The situation now is my son has to wait until next week when the GP will say whether the other GP's in the practice agree to him having a mere 2 weeks trial of heparin.
Heaven help us if/when he goes onto warfarin and wants to self test, which he will, as I do. This guy will be crying into his prescription pad.
have gone from being active to being debilitated with tremors , pain , fatigue and 6 weeks off work , i was on warfarin for 7 years with mild symptoms from time to time . my GP decided since i had had no further clots i was safer on aspirin 300mg . as risk of bleeds in her opinion where worse . I have since asked 4 gp to re start my warfarin to see if these symptoms improve , not one will accept this has anything to do with APS . they put it down to stress , last time they said it was stress was 7 years ago after a stillbirth , infact it was multiple p.e , nearly died, I get so angry and am made to feel like its all in my mind . THEY REALLY NEED TO EDUCATE THEMSELVES on a serious medical condition that is found in nearly every field of medicine .
This is awful and it makes me so mad. I hope you can send this doctor current info so that he can learn and get you re-started before something happens. You have ever reason to be stressed now but it's due to the doctors unwillingness to listen. Maybe if you said you'd sign a waiver your doc would do something.
Sorry - don't want to cause concern etc but I think I know where your GP is coming from...maybe it isn't just money...especially if your DS is quite young...
A word of caution about heparin and its long term use. Heparin (especially at high doses) does effect bone density and can lead to osteoporosis - although the Low molecular weight heparins (eg Fragmin) seem to not be so damaging. I took it during pregnancy (with calcium supplements) and looked into it - it seems it takes 6 months for bone density recover when you stop. I would not take it long term unless my life was in danger otherwise - and would insist on regular (at least annual) bone density checks. Maybe it could be used to give DS a break from his symptoms...and hopefully 'better' anticoagulants etc will be developed soon...
I know I am very sensitive about this - I watched my grandmother die as her back collapsed - she had been on steroids (which are now known to have a similar effect) for chest problems for years before the risks were known...not a pleasant experience...
Lucky67 my DS is 23 and so far the Prof is suggesting a 2 week trial to see if it works and I know from personal experience he usually then puts patients on warfarin if the fragmin works.
So far we have made no progress, the GP now is holding out for a copy of GP info that the Profs secretaries failed to but in the fax and exact words from the Prof as to the length of the trial. So now we wait until Friday again as this GP like all our GPs only works part time.
Problem is the GP hardly works and does not get 5 migraines a week. If the GPs were suffering in the same way they would not drag their heels like this.
My point is that unless you really NEED to take it I wouldn't ...so I can understand the GPs reluctance ...and I would take the precautions you are if I did ... (good luck with your bone scan!)
That paper is a very small trial with an average duration of treatment of 3 years - I think my point is that not enough is really know about really long term use - Jade's DS (assuming an average ish life span) could potentially be taking it for 50 yrs ...
The same is true for long term Warfarin use - and that has been used since the 1950s - I think LMW heparins first became used in the 1970s - (unfractioned heparin -which does cause problems- earlier than that) . I test negative and was possibly mis diagnosed. I stopped taking warfarin about 15 years ago - after taking it for 4 or 5 years for the same reason - looking at taking it for a very long time (I was in my early 20s) ...now a lot more research has been published about it - and still no firm evidence either way (seems maybe bordering on the 'can cause problems' side)
Actually Dr Beverly Hunt (now I notice Prof ) tried to dissuade me from stopping warfarin ..and she is main author on this slightly earlier paper - with Prof Khamashta as a contributory author
Lupus. 2010 Jan;19(1):3-12. doi: 10.1177/0961203309353171. Epub 2009 Nov 24.
Review: Low-molecular-weight heparin-induced osteoporosis and osteoporotic fractures: a myth or an existing entity?
Lefkou E, Khamashta M, Hampson G, Hunt BJ.
Source
Guy's & St Thomas' NHS, London, UK. elefkou@gmail.com
Abstract
Long-term use of unfractioned heparin data has been associated with a 2.2-5% incidence of heparin-induced osteoporotic fracture, but for low-molecular-weight heparin (LMWH) data is scarce and there is lack of clarity of the risks of osteoporosis and osteoporotic fractures. In this paper we review the differential diagnosis of osteoporosis and osteoporotic fractures, and we conduct a systematic review of all related cases from case reports and trials. Two new cases of possible LMWH-induced osteoporosis are also presented and the difficulties in making the diagnosis are highlighted. The authors conclude that, until large clinical trials are designed to investigate pre- and post-treatment bone density and to compare different dosages of LMWH effect on the bone density in different patient groups, no safe conclusions can be made.
Hopefully we will soon have better medication ...but I would have been on Warfarin for 20 years now...and from what was known at the time ...the damage could have already been done ...(especially if there is a genetic predisposition to Osteoporosis)...
Sorry from some of the posts I got the impression it was a two week trial with a view to long term use if it worked...rather than as a precursor to Warfarin (is that clear in the letter to your GP?)
I do understand that getting doctors to listen to you is very frustrating ...and you do sometimes have to throw a tantrum... and really know as much as possible about your health and 'disease'...
Think I have posted before about my battle to get frequent growth scans etc when pregnant with my 2nd DD - I test negative, have done for years...different hospital and my notes from St Thomas's were 'missing' - (were eventually found when I paid £50 to get a patient's copy though...) Consultant got a haematologist to have a chat with me to put my mind 'at rest' ...who after listening to my 'story' agreed with me!
When I apologised to the haematologist for being an awkward patient- he said that they are the type that survive the longest...
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Been to see Prof Khamashta...
GP reluctant to refer.
Anyone know a GP in Salisbury who has APS experience?
Should I go to London Bridge to see the Prof?
