I have been struggling to stabilise my inr for months now. I feel so awful most of the time. I enquired

about trying fragmin injections but was told I couldn't use them as they can cause osteoporosis. I can't win. Its really getting me down can't take much more. Any advice would be welcome x

[Manofmendip]

Hi

Well, the older Heparins used to cause osteoporosis but the modern, Low Molecular Weight Heparins, such as Fragmin, are not thought to do so, so Prof Hughes and others have told me, and I read that there is evidence that they can protect against it. Whoever told you should get up to date with the current research.

I feel so much better on Fragmin and would not willingly go back on Warfarin.

Where are you from?

Best wishes.

Dave

[Hidden in reply to Manofmendip]

Hi im from surrey. I was told this by a gp but im trying to get referred back to haemotologist to see what he says. I did fragmin injections when I was pregnant and managed ok.

[Manofmendip in reply to Hidden]

Go for it. Many of us on here have had to fight for our right to be heard and treated properly. I've been on Fragmin for two and a half years now and feel much better on it and I am not aware of any side effects, so far.

Can you afford to have a private consultation with prof Hughes or one of his team at The London Lupus Centre, they are more likely to support you and to write to your GP to tell them to try you on Fragmin. It must surely be safer for you to be on Fragmin and have a steady anticoagulation rather than risk clotting and feeling awful on Warfarin with an unstable INR.

Good luck and let us know how you get on.

Dave

[Hidden in reply to Manofmendip]

I would love to see one of them but dont think I could afford it. How much would I have to pay? Id try anything at the moment. Thanks for advice xx

[Manofmendip in reply to Hidden]

It was around £200 last time I went.

Give the London Lupus Centre a call and speak to Kim or one of her colleagues and get an up to date quote.

The blood tests can cost a lot but I used to get Prof to say what ones he wanted and then get my GP to have them done on the NHS.

You could also have a look on the HSF website and try to find an NHS APS consultant near you.

Good luck and keep in touch.

Dave

[Hidden in reply to Manofmendip]

Thanks Dave I will look into it xx

[Manofmendip in reply to Hidden]

Good and good luck. xx

[panda60 in reply to Hidden]

You could phone the hospital to ask for a list of their charges. How much it will cost depends on whether you will have to go more than once. It also helps to have a co- operative GP to arrange blood tests if you need them as they are very expensive.

Unfortunately you cannot have fragmin prescribed by your GP unless you have seen a consultant. Hope you get sorted soon. x

[krysty in reply to Manofmendip]

Hi Manofmendip,

I've watched your posts with interest as I'm hoping my consultant will eventually take me off warfarin and put me on injections, as I cannot tolerate the side effects of warfarin which my consultant fully understands. The change has been delayed however, due to elevated LFTs which seemingly have no explanation. I have been referred to a liver specialist to see if anything is going on that has been missed. I am glad that my consultant is being so thorough but i just wondered if you had a similar experience when you were changing from warfarin in terms of loads of tests? I recently had an abominal scan which was fine. thanks Krysty

[Manofmendip in reply to krysty]

Hi Krysty

Thanks for your reply.

Interestingly, before I was diagnosed with APS, I had two bouts of Hepatitis for which no cause could be found, even after a liver biopsy. My liver functions never fully recovered to normal until I was put on Warfarin, when they did. Prof Hughes explained that my hepatitis was, in his opinion, probably ischemic and caused by micro clots in the liver. He moved me from Warfarin to Fragmin. Just one of my liver functions, ALT, is always very slightly raised but I feel so much better on Fragmin that I would never, willingly, go back onto Warfarin.

So, it is possible to have abnormal liver functions, with APS, if you are not adequately anti-coagulated.

Good luck and keep pressing for Fragmin.

Let us know how you get on.

Best wishes.

Dave

[krysty in reply to Manofmendip]

Hi Dave,

Its so good to hear about other peoples experiences. I have all other tests including hepatitis come back as clear and up until earlier this year have never had probs with my LFTs. I was only diagnosed with APS in December 2012 and up until using warfarin have never had a serious illness or needed medication aside from a couple of bouts of glandular fever when I was in my twenties. I believe that I have a hypersensitivity to warfarin even though it probably seems an irrational idea to others. I have been continually ill on warfarin and I know that there are schools of thought about inr being out of kilter etc but I know my body and how I feel. I truly hope that my liver function is ok and that it is just another effect of the warfarin, as I am desperate to change to another type of medication. Thanks so much for your reply, Im not due to see my consultant for a couple of months now but I'll keep you posted

Best wishes

Krysty

[Manofmendip in reply to krysty]

Hi Krysty.

Perhaps your abnormal LFTs are due to micro clots in the liver, like mine were?

Where are you from?

Dave

[krysty in reply to Manofmendip]

Hi,

I live in sheffield and I am now under an APS consultant, I have considerd that this could be the case but I am no expert. However I will discuss it when i get to see the liver specialist. I have seen my consultant 3 times including my initial appointment in June and will see him again in October so finally I am receiving excellent suport for my condition. Its such a frustating and strange condition.....

thanks

Krysty

[Manofmendip in reply to krysty]

That's good Krysty.

Let us know how you get on.

Dave

[Sal0712 in reply to krysty]

Hi Krysty. I'm also from Sheffield. If it's ok, would you let me know the name of your APS consultant, as I like to have as many contacts as possible, incase I need another opinion at any time? Thanks x

[krysty in reply to Sal0712]

Hi

Sorry for the late reply, I was in York overnight

I was initially referred to Dr Van Veen at the Hallamshire, but I was not happy about this decision as he is not an APS specialist and on the two occasions I saw him he said that he was a hemotologist, not a general doctor and that I should go to my own GP with the symptoms I was experiencing. So I did and was treated very sympathetically by my GP practice and was referred to Professor Makris, (also at the Hallamshire in the same department as Dr.V.V. ) who has been extremely thorough and helpful. I guess for me I was not willing to be treated by someone who in my opinion did not understand the fuller picture, as I have had a lot of problems with warfarin and do not feel that enough information was given to me about the side effects from the start. It was like you've got this condition and you take this, no choice or discussion etc.

Best wishes x

[Sal0712 in reply to krysty]

Thanks for that. I am currently under Dr Van Veen and only see him once a year. Good to know that there is someone else at the Hallamshire for a second opinion if needed.

[tipi in reply to krysty]

My husband also has dreadful side effects on warfarin. Our GP just shrugs....keep pushing for fragmin

[Hidden in reply to tipi]

My nurse told me that I would not experience any side effects of my inr dropping and the other 3 ApS patients she has doesn't suffer like this. Im seeing gp next week but not sure whether to get referred back to haemotologist I saw or try and get referred to see someone of the Hughes recommended list. What does everyone think?

[tipi in reply to Hidden]

Warfarin is cheap....all the other drugs aren't...some of his side effects are horrible and his inr is never stable.

In the end we bought a coagucheck machine (against gps wishes!) and can at least check regularly and not anything from the 2 weeks to 12 weeks with the gp.

[Lure2 in reply to Hidden]

If your INR is not correct you will have side´effects. It is important that you visit an APS doctor (a specialist on Hughes syndrome)!

Try to learn as much as possible about this illness. Then you can understand how it should be and ask the right questions.

Have I mentioned to you Kay Thackrays two very good books:

"Sticky Blood Explained" and "More sticky blood". You can buy it on Hughes Syndrome Foundation Charity website.

Best wishes to you from Kerstin in Stockholm

[Hidden in reply to Lure2]

Thanks. I have bought those books and they are good. Im just trying to get as much info together as possible. Hopefully my gp will refer me to who I want to see.

[Lure2 in reply to Hidden]

Who do you want to see?

Can a GP refer you to an APS specialist? Sounds very good.

Kerstin

[krysty in reply to tipi]

thanks, I will... i just dont think we are given enough information about the side effects of warfarin x

[Lure2 in reply to krysty]

There are very few side effects on warfarin except for bleeding and a low INR. That is when the side effects start. Warfarin is excellent if we can remain a stable INR.

At least that is my conclusion so far.

Kerstin

[beccafullcircle in reply to Manofmendip]

Hello, Is Fragmin an injection? What are the benefits vs Warfarin from a patient standpoint? Do joints and headaches seem to become better?

Thank you for the information I am giving to my specialist next week when I travel to him.

Becca

[Manofmendip in reply to beccafullcircle]

Hi Becca

Yes Fragmin (Low Molecular Weight Heparin) is an injection that you give into your tummy once a day. The dose is based on body weight.

It seems to provide, in my experience, a much more predictable and stable anti-coagulation and it is not affected by food and drink, unlike Warfarin. It works differently to Warfarin, on a different part of the clotting cascade, and does not affect INR, so no blood tests are required.

For me, I have felt much better, very few headaches and other symptoms, such as brain fog, memory and speech issues etc.

I hope this helps.

Best wishes.

Dave

[london-lass]

Hi

Some of us never stabilize on Warfarin. As I say to my clinic, it is the nature of the beast, and my consultant agrees that our bloods are always changing. What is your target? I find I need to be over 4 to have a reduction in symptoms. They flood back below that.

Do you self test? I have found that that is the best way of getting some continuity. I self test, and the clinic does my dosage.

If you need a higher INR it has to come from your consultant. Do you have an APS experienced consultant?

There is a list on the Hughes website. You could ask your GP for a referral. Cheaper than private, and many have found it just as good.

Good luck.

Blessings Ann

[Hidden]

I asked my gp to refer me to one of the specialist on the Hughes list and she said that no one specializes in this condition. My range is 2.5 - 3.5 but on my last test id dropped from 2.9 (where i felt quite good) to 2.5 and nurse said i was in range so to keep me on same dosage and cone back in a week. I no I've dropped more as i feel so bad but im going back tomorrow.

[panda60]

If you are not getting anywhere with your GP is there another one at your practice you could go to or indeed another surgery you could transfer to? It is difficult being a Hughes patient at a warfarin clinic as the nurses are not used to us being different. I was originally 2,5 - 3.5 and couldn't cope with lower than 3.0. St Thomas (before I was discharged) changed it from 3.0-4.0 and the nurse has come to understand that I need to be nearer 4.0

I self test, but am now having to pay for the test strips as my Surrey CCG stopped prescribing. It is expensive but gives me more control.

Keep at it and hopefully you will get somewhere, but it is exhausting and shouldn't have to be. x

[Hidden]

Thanks my nurse and gp have been great up until I asked for range to be higher as they dont really understand the symptoms i get. They worry i will bleed but im more worried that im stammering my words and i tingle everywhere. Also i haven't slept properly in 3 days as my head hurts when i lay down. I recognise these as symptoms of when my inr has dropped. Im sure i will get it sorted soon but it so frustrating at the moment. This forum is great as i can get good advice and answers and no that there are so many people out there that feel the same. Sorry for the long post got alot to get of my chest xx

[GinaD]

Never apologize for ranting on this site. Having Hughes, ( as with many autoimmune diseases) puts one into, ( as described in a book I read) "The Kingdom of the Sick.". People who have not been drafted into that kingdom --and this sadly includes many health professionals-often are Dismissive and judgemental of us patients who do not respond with sufficient improvement or gratitude. its all our fault. We're deliberately being difficult. We're trying to have their practice down graded. We're asking to be over-medicated so we have a reason to file suit.

We humans are social creatures. The constant overt and implicit criticism begins to wear down and can be just so darned depressing. So. ranting, dumping and supporting each other on this forum is , well . . . part of what this forum us for.

Good luck. I hope you get your hands on a fragmin script soon.

And, returning to your question above, you can improve bone health with daily weight bearing exercise, including walking. Here in the States, so many of my fellow Yanks rarely walk at all. So remember my compatriots are the ones who drive up those osteoporosis numbers. One of the first things I noticed when I arrived at the Glasgow Airport was that most of the people around me were of normal weight. My state of West Virginia ranks as the 2nd fatest state in the US,( again we says" Thank God for Mississippi!) I always remember to remind myself of this whenever I read that because I live where I do, or take this or that med, or eat this or that food, that my chances of succumbing to this or that malady--may not really apply to me because my health habits place me far outside the normal range of my fellow Yanks --and certainly outside normal for my fellow Mountaineers!

[Hidden]

I live in a small rural village so I can't change surgeries but I am going to try out another gp in the practice and I will print off the list and show them. Thanks x