Coping with APS

[1818hst]

Was diagnosed a month ago after having suffered from a stroke to my right cerebelum a year ago. On Warfarin 7.5 mg a day, with an INR of 2.3. Having difficulty coping with what has happened to me; any advice? Can I live a normal life? I'm 50 years old with two small children. Absolutely healthy till this happened. Thanks.

[Suzypawz]

Hi welcome to the site.

Sorry to hear you are going through what we all seem to at the beginning...&even now!

It is different for all of us, usually when once on warfarin its stabilized but we all have our own challenges.

Mine are mainly fatigue, joint pains & migrainesm

I have good days & bad days, I try to do everything I want to ...sometimes suffer after for a few days....but I feel I have to for me : )

I'm 42 got diagnosed 11 years ago, got 2 grown boys, lots of pets!& love photography, I had to give my job up because of APS but still planning on going self employed.

I hope this helps describe anything? I wish you all the best as I know its a lot to come to terms with xx

[1818hst]

Many thanks for responding. As I am the primary bread winner, one of the main things that I worry about is something happening to me. Does your warfarin make you feel light-headed? I feel that way quite often and hope that it is nothing more than a reaction to the drug. Thanks.

[MaryF Administrator]

Hi there and welcome, I think things will take a while to settle down and come into focus, you have had a huge shock, I hope your friends can rally around you a bit at this time. Also there is tons of support on here from those who have had similar and have a very good understanding across the board of the various manifestations and also the behaviour in individuals of Warfarin and similar. I hope we can continue to hear from you. Mary F x

[tassie]

I agree with what the others have said.

Having a major health emergency or being diagnosed with an illness is a major life change and can cause a grieving process which takes time to work through.

Your INR also might be too low. Perhaps asking your medical advisor if you can trial a higher INR and see if that helps. Many of us find that an INR above 3 works better. This can be scary for drs used to dealing with "normal " warfarin patients as they aim for an inr much lower.

Many drs will tell you that your INR doesn't affect the way you feel but I can sure tell when my INR is below 3 and I know many others here can too.

[1818hst in reply to tassie]

Hi Tassie, and thanks for your post. A lot of the academic research that I've read suggests that there is not much difference between INRs of 2-3 and 3-4 with the exception that an INR of 3-4 increases the risk of internal bleeding. It is interesting to hear that you feel better once your INR is above 3.

I was put on Plavix for after my stroke last year till I was conclusively diagnosed with APS in Sept by Professor Hunt . Since early Sept I've beeen on warfarin and we're trying to get my dosage right so that I "hit" an INR of 3. I have days where i feel light-headed, not dizzy. Started after my stroke. In your experience is this a reaction to the Warfarin or an outcome of APS and too low an INR (mine is now 2.3), or both?

While on Plavix, and before I was switched to Warfarin in early Sept I had what my doctors feared was another TIA, which resolved quickly. My first week of Clexane and Warfarin left me feeling sick and very dizzy. The dizziness has since gone. Is this a common reaction?

Would very much appreciate your thoughts as I wrestle with my new found condition.

[tassie in reply to 1818hst]

An interesting question as to whether that feeling you describe is recovering from the stroke or adjusting to the warfarin. I felt the same for two weeks after my stroke and starting warfarin.

I assumed I felt that way because of the stroke and until I got to an INR above 3. Whenever I dip below 3 I feel crap again.

I would question whether the academic artices you read were using "normal" patients on warfarin or patients with APLS on warfarin? I truly think there is a big difference ...we are different and I suspect we react differently and extrapolating from one group to another may not be wise or helpful

[1818hst in reply to tassie]

Good points. Thank you.

[oleary]

I have APS and im finding it very hard to come to terms with it, its changed me so very much in every way. ive gone from being a happy go lucky person to some1 who gets depressed and very unhappy, yeah it sounds as if im being selfish but its been a big change in my life and for my family. I have alot of symtoms with mine and it affects my every day, ive gone from being a very active person to some1 who has to stop n start. I dont feel that warfrin has done very much for me, well thats how it seems at the mo. Does any1 else feel like this n how do you manage to cope with it.

[1818hst in reply to oleary]

Dear Oleary, I've spent a lot of time wondering "why me"? I am very health concious, exercise regularly (used to be a runner) and don't understand how or why this happened. My wife has been very supportive and as I have two children, I am forcing myself to try and get back to "normal" as soon as I can. My exercise routing now is a joke compated to where I used to be, but at least it makes me feeel better. Don't let it get you down. Fight back. I used to want to just stay in bed and not get out, but realize I can't get through life like that. It is unfair, tough and life-changing - you're right about all of that.

[oleary in reply to 1818hst]

thanx for getting in touch and explaining how it made you feel, its gud to hear that im not the only1 that feels this way. Ive 6 kidz and its been a big change for them seeing their mum like this. I find on a gud day i try and do as much as i can, but at the end of it i do suffer. But hey your right you have to be strong and just get through the day the best we can.

[1818hst]

All, you're very kind and I am touched by your responses! It has beeen a real adjustment for my family and me. I have also beeen suffering (from what I now understand) are panic attacks - thinking I'm having another stroke. These have beeen awful. I've beeen on the warfarin for just over a month now, my daily dosage is 7.5 mg and my INR is now 2.3. I'm getting tested weekly because we are trying to get it to 3. One of my biggest challenges is that I have to travel (long haul flights) for my job. I have a trip coming up and am anxious about what to do. My haematologist tells me that if my INR is at or above 2.5 I will be fine; if not he wants me to inject Clexane before the flights there and back. Any advice would be extremely welcome. Thank you all and with you in spirit.

[Coppernob]

I have APS and am given subcut heparin injections to self-administer before long-haul flights. Slightly painful, momentarily ('a small prick' :-)) but easy to do, into the stomach. You get them on prescription before you travel. Along with peace of mind. Sorted!

[1818hst in reply to Coppernob]

Hi, do you remain on your warfarin while you travel and simply give yourself the injections for your flights there and back? Any interaction with the warfarin? Would very much appreciate knowing. Thanks.

[GinaD]

The phrase "panic attacks " resonates with me. I was diagnosed in 2000 after a 3 unmistakable strokes/ministrokes within 2 days. But during the summer leading up to that aytumn I had experienced a number of what I labeled " panic attacks.". Since you have had strokes, that means your INR should be in the 3sand not the 2 s. but it is also true that the brain has rewiring to do to compensate for the damage. Exercise, including and especially walking, will help your brain do that. Also reading, puzzles and tackling some new, puzzling challenge such as dabbling in another language --the BBC has a great, free site-- or math problems.

My serious strokes stopped the week I was put on warfarin. I felt once again " at home in my own head," about 6 months later when the next spring rolled around. My balance issues continued though and my physical therapist-- consulted for arthritis issues later - suggested a cheap, effective at -home exercise that saw an improvement a few weeks after starting It for just a few minutes daily: Get the deck from some used, scrapped skate board. Remove the wheels. Buy a couple of short ( 2') PVC plastic pipes -- make one a fat one with @ 5-6" diameter, and the other a thin one of 2-3". Then center te board over the pipe, and WHILE HOLDING ON TO SOMETHING STABLE try to balance your body on the pipe. Quick. Easy. And something you can do in 45 seconds a day. You'll find the fat pipe is easier. And I felt that my balance was improved within that first month.

I went more then 10 years symptom free. Some -but not all -of my current docs think my current arthritis and sacroilliac joint problems are APS related. But we're all different. But many, if not most, of us have years, decades even, of no symptoms. Just that recurrent slog for the INR check. And, if on warfarin, the dietary issues.

Good luck.

Gina

[1818hst in reply to GinaD]

Hi Gina, and thanks for sharing. I am forcing myself to exercise again because I beleive it has to help. Just started Hatha Yoga as part of my recovery program. You're right; because I have had a stroke I am supposed to have an INR of between 3-4. I'm worried about the risk of internal bleeding and from the academic literature that I've read I gather that it is unclear whether 3-4 is really better than 2-3. I feel light-headed quite often and wonder whether that is due to my brain trying to rewire, the APS or just a reaction to the warfarin as I gather that is one of its side effects. Thank you again.

[1818hst]

Thank you so much for your response; it is not only incredibly helpful, it is very comforting to know that I am not the only one dealing with this condition. As all my business travel is long-haul I think I will have to inject Clexane. Would you know if it interacts with Warfarin? I'm so reluctant to do all of this while away from home. I do hope that life will settle down; it has been an anxiety ridden year till I got my diagnosis a little over a month ago.

[StevePT in reply to 1818hst]

Since having a DVT in Chile 12 months ago I was diagnosed with APS.Initially I was on clexane but as I switched to warfarin I was on both whilst my INR stabilised so there is no problem with being on both simultaneously.Prior to the warfarin I was injecting 40 mg of clexane on a daily basis and flew to New Zealand and Latin America and back with no problems.

[1818hst in reply to StevePT]

Sounds like you have to take long haul flights as do I, for work. What do you do to protect yourself now while flying please? Thanks.

[StevePT in reply to 1818hst]

I switched to warfarin around 3 months ago and have not flown since then as I am off work due to fatigue issues(possible combination of aps and chronic fatigue/ME).When and if I return I was planning to buy a warfarin self test kit to test myself whilst abroad and react accordingly(I.e. call my warfarin clinic if I was concerned,for advice) depending on my INR levels.

[Stella]

really helpful suggestions and information from everyone. I cannot work any more, but find a huge emotional outlet with art and choir. Both extremely good for helping well-being. I also go to a Qi Gong class, which helps enormously with balance and strengthening exercises. It is all done slowly, calmly and repetitively so no issues with not being able to keep up. You can also do it at home easily in between classes. Best wishes to all, Stella

[GinaD]

Regarding INR bleeding fears: most warfarin patients take the med because they have a sticky spot in their circulatory system. We take it because we not only have sticky spots, (damaged sites of previous clots') but also because we have sticky blood. So the bleeding risks posed to the usual warfarin patient are not comperable to ours.

On an earlier docs suggestion, I took to writing down those casual day to day bumps and scrapes so that when the resulting bruise appeared I did not then wonder if this bruise was OK or sign of a out of control INR. And so far, after 10+ years of warfarin, I have only been over range once, and then I had no complications. And IMHO, our bodies do adjust to warfarin after a few weeks.

Good luck. For most of us, the anti-coagulants are life-saving drugs and we do just fine.

Good luck.

[1818hst]

All, would appreciate your advice. Have been on warafarin since early Sept. My daily dose was 5 mg and my INR 1.8. My dosage was then increased to 7.5 mg three x weekly and my INR went to 1.9 and then back to 1.8. My haematologist then increased it to 7.5 mg daily and my INR went from 1.8 to 2.3. Now, a week later (today) it had dropped to 2.1 (I get tested weekly). Is this normal? I'm supposed to have an INR of 3. Does it fluctuate this much? Any perspective would be great. Thanks.

[Manofmendip]

Hello 1818hst

Welcome to the forum.

Where are you from, the UK or another country? If you are in the UK it may well be a good idea to ask to be refered to the Louise Coote's Lupus Centre, St. Thomas's Hospital or to Professor Hughes, privately, at the London Lupus Centre, London Bridge Hospital.

Many of us on here find that to feel reasonable we need an INR nearer to 4.0, 2.5 - 3.0 is the level that Drs are used to for non APS patients who have had DVTs or heart valve replacements. I am now on Fragmin injections, rather than Warfarin but when I was in Warfarin if my INR fell below 3.3 I was in trouble, with migraines, unsteady gait, speach and memory difficulties.

Very best wishes.

Dave

[1818hst]

Hi, and thank you for mailing me. I'm in Cape Town. The doctors here have limited experience with APS. I'm being tested weekly and my daily warfarin dose of 7.5 mg is being maintained - for now. I feel okay but am worried about a long-haul trip that I have coming up for work. Thanks for your perspective.

[MaryF Administrator in reply to 1818hst]

Hi there, this paper turned up in my search, are there familiar names and addresses on here for you? ncbi.nlm.nih.gov/pubmed/170...

Mary F x

[1818hst]

Hi, just re-read your post. Does one inject Fragmin? Do you feel "better" than you did when you were on warfarin? I do hope things have stabilized for you.

[1818hst]

Hi MaryF - this is very kind of you! I don't recognize the names but will check with my haematologist. Thanks.

[1818hst]

All, I find that I am taking 1000 mg (2 pills) of Paracetamol almost daily now to help with headaches or a fogginess of the head. My INR is still struggling to reach its therapeutic range. Along with my daily dosage of warfarin my haematologist has given me a vitamin supplemt called Mena Cal 7. Does anyone have a comparable experience? I do realize that some of you are prone to headaches once your INR dips below a range that works for you, but any insight into how much paracetamol is ok or bad, or the vitamin supplement would be great. Thanks.