APS

Hi been to see my rheumatologist to day feel as it was a wast of time she could have told me the think over the phone she asked me when I had my stroke was it February or December I sed feb they not sed wot it was in dec she looked sed have u had a letter I sed yes it did not make any sense she sed u are ment to be going for it echo I sed I don't know she sed that's wot it say on the letter then she sed wot is your bloods I sed 2.4 she sed wot is it ment to be I thought they was ment to know she sed you are on warfin now I sed yes I will see you in a Years time so go have these bloods done a month befour you come and see me if they come back ok will discharge you theses are wot I am going for AAS, CRP, ESR , F, IGS, L Autoantibody screen, C - reactive Protein CPR ,Electroltes & Creatinine, ESR(-Y (- Areteritis on steroids)), full blood count, immunoglobulins igA & igM, liver function test so are u still ment to see a rheumatologist all time or wot I am confused x

39 Replies

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  • Hi Lesley,

    What is your therapeutic value? Do you still have breathlessness and have they ordered an Echocardiographi for you?

    Kerstin

  • They have not booked one yet well I have not got appointment to go to yet I have been fine with my breathing un till yesterday get a bit out of breath now but not like I was I was saying I hope I am not getting a chest infection againe and sorry not understand you about the therapeutic I got appointment with the neuro in April she sed he would look and tell me all I need to know xx

  • Hi Lesley again,

    I Think you should have that Echocardiogram if you are feeling breathless. I do Echos at least every year for my heart and lung and they always ask me if I am out of breath. I am not breathless I can tell you.

    Of course I am not sure why you are out of breath but if if is because APS-problems with heart/lung I think you should ask for an Echo as soon as possible. I can not understand why the doctor does not understand that.

    With therapeutic range or value (I am from Sweden remember ....) I mean between what INR have they put you? Is it between 2.0 - 3.0 or is it 2.5 - 3.5 in INR. You said you had 2.4 the last time. For me that is too low.

    I can understand you are comfused. You had your stroke in February also.

    Do not give up please!! A Rheumatologist is a doctor that ought to understand APS but I do not know if she is one of the "APS-Specialists" that is vital. Such a doctor will certainly know how to treat you.

    Good luck and come back if you need help here from us.

    Kerstin in Stockholm

  • I've never seen a Rheumatologist I saw a Heamotoligist once on diagnosis, he put me on Warfarin and then I was tested weekly in clinic. The Heamatologist didn't explain anything about hughes at all I had to look it up on the internet. I have a level of 2-3 and have been pretty much stable from the start. I've had the odd blip caused by my losing weight and increasing my exercise. Since forcing myself to exercise my symptoms have all decreased. I have no further appointments to go back to see him. My Liver is checked b the heptologist who recently discharged me because everything has retuned to normal. I used to see the stroke clinic every 3 months but all we ever discussed was statins, they wanted me to take them and I refused. I now see them yearly. I see my GP who is excellent and my INR is now tested by a pharmacist. I don't feel the need to see anyone else as I'm pretty much symptom free and stable. I also had my second stroke in february. Breathlessness can be caused by many things including anaemia.

  • That sounds good.

    2.0 - 3-0 in INR is very low and if I were you I would ask to have it at 2.5 - 3.5 instead.

    I take statins. It will make my INR value a bit higer I have noticed. All the same I think I read that the doctor wanted you to take an Echo. I Think you should take that. It could actually be very important.

    All the same I think you should try to find an APS-specialist who can take the responsibility for you. Every person with this illness should have an APS-doctor!

    Kerstin

  • I was on statins but I can not take them now they make me I'll yes my INR is ment to be 2.5 I don't think my doctor will send me to see one and I can not afford to do it yes I will have a echo when they send me for one xx

  • Two strokes might suggest that your INR level is set a bit too low? I know people can have all sorts of symptoms caused by APS which can also be caused by other things, but strokes are a big scary thing (that's how I found out about my APS), I am currently battling to get my INR range set higher as I am set at 3-3.5 but the Warfarin Clinic seem happy if I bumble along below 3 but I am not, as I get 'odd' symptoms that come and go and my brain is too slow. I agree with Kerstin that a Rheumatologist who knows about APS is a good idea - they are quite a good consultant to have as they are used to autoimmune conditions and at looking at people holistically

  • Yes now wot u mean I feel like Iv been pushed from pillow to post they saying my last one in December was not a stroke they don't know wot it is and yesterday the docs say only hart people have the INR at 3.5 so good know I will say this weeks been the best week of all even the OT and Physio say I look better and doing better so that makes me feel good for some one to say that then you go to hospital and feel down after but thanks you guys xx

  • Hi Elaine,

    When I am at an INR of 2.8 I have to take Fragmin shot of 5000 IE.

    Could you convince your APS-doctor/Consultant that you must have that regime? I have it easier because I selftest and know when I get under 3.0.

    Best wishes from me in Stockholm

  • I don't have APS doctor will ask my doctor to see they can send me to one that mows whit they are taking about x

  • Hi Kerstin

    I am seeing Dr D' Cruz in London later this month so hopefully can see about this - I did ask my Rheumatologist if I could inject Heparin if it went below 2.5 (currently do it at 2.0), which is why she has referred me to him - she didn't want to do it as scared I would bleed, but understands that I want to! I would like to self-test and self-manage, but worried re cost of the machine if it doesn't work as I have the lupus thing in my blood that makes them inaccurate.

  • I have the Lupus Anticoagulant also. It is OK according to my hospital and doctor and specialnurses.

    There is a discrepence between the labtest value and the machine and at first you have to doublecheque for some months but now it is ok but it can never be exact but it is ok as I cheque every second day nowadays after soon 3 years of machine testing of my own.

    Good Luck

    Kerstin

  • Thanks Kerstin, I will talk to Dr D'Cruz about it as my Rheumatologist was not keen, I think she expects me to go nuts and have an INR of 10 or something!

  • The doctors I have noticed are very afraid that we are going to bleed. I have been rather high but I have never had a bleed, not even when I brush my teeths.

    Kerstin

  • Thanks for that no Iv had to look think up only ever seen remo that's all my INR never been stable need it to be cos Iv got to have a injection in my hip and I need to come off my warfin for a week but need it to be stable xx

  • Hi again Lesley,

    So many of us here with APS (have you been diagnosed with APS?) have had doctors that do not understand Hughes Syndrome (or Antiphospholipidsyndrome or Stickky Blood) and therefore they must refer you to such a doctor. Ask your husband to help you also to read about Antiphospholipidsyndrome.

    Have a look at Hughes-syndrome.org and print off the relevant information and take this to your GP!

    Ask them to do the blood tests that are set out on the Hughes Syndrome Foundation website if not done.

    Which antibodies do you have?

    I only try to help you. Do not get mad at me!

    Kerstin

  • Yes I have been told I have APS they say that wot closed me to have my stroke in February I will messson it when I next go to my doctors but can not see them doing it it's the doctors that's been pushing for my remo to get it sooner cos my can not do any thing so when I go back going to tell them thanks for the help

  • Well the strokes came before the aps diagnosis in my case. My INR on a blip has been as high as 4.8 I felt exactly the same as when it's at 2.8. Like I said for me exercise is the key to alleviating most of my symptoms, I feel fit healthy and well and tbh have less aches and pains than your average 60 year old. I know exercise is difficult to even think about for most but it was for me too. My joints were agony and now they're not. I started slow hanging on to the guide rails but no longer need to. I would say with a little more weight loss I'll be back to !00% of what I used to be .

  • That is fantastic to hear that you feel much better. I am 70 and I try to exercise as much as possible. That is so important to feel well-

    Kerstin

  • You do not look 70 how do u get a pic of your self on here x

  • Well, thank you Lesley! My daughter helped me with it. I am not so good with computers.

    I now know you have got APS and I think you have a nice GP who will probably help you to a Specialist. As I live in Sweden I do not know so much of how you pay and have referals to different doctors and institutions etc.

    Tell them that they can not take the warfarin away 1 week without something else instead. I do hope they know that.

    You see I feel fine as my warfarin is in range over 3.0. I hope you also will feel fine when you get the very best treatment. I also know that there are different sorts of Statins and some can make you feel bad. I have also had high bloodpressure and

    Pulmonary hypertension and therefor they do Echocardiographi with Doppler.

    Let us hear how you get on please and I wish you Good Luck!

    Kerstin

  • I never felt realy any different when my INR was hight up to 4.5 and as low as 1.1 did not feel good when it was that low I am only small my joint hurt most of the time first think in a morning are worse for me but sometime as the day goes on feel better and when I have a good day I go mad in the house I know I sould not do it it's because Iv allways been active and use to doing 13 hours shifts and they none of that now I suffer when I done it for a few days xx

  • Oh, that rings a bell, Lesley61! I am normally in so much pain that when I get a time when I can move around trouble free (ish), I go mad with housework! Then my partner comes home and finds me barely able to move and nursing a hot water bottle!

  • Yes that is true so Farr last week Iv had a good one just hope it keeps up and hope u get out of pain too xx

  • I know and it doesn't help that doctors tell you to take it easy and not over do it. I'd be a couch potato if I listened to them and let my symptoms dictate what I could do. I think the answer is to do a little every day with rests in between. Even housework such as tidying the lounge and hoovering used to take me all day lol, but by doing a bit more each time I'm now whizzing around getting it all done. Of course I sometimes over do it and live to regret it as it sets you back and leaves you feeling knackered for days. I also have the advantage of having my own gym equipment from when I was fit. So it was easy to hop on the treadmill for 10 minutes in the beginning rather than having to go to the gym. I currently do over an hour of hill walking up various inclines and use a rowing machine for around 40 minutes. I recently cleared out my sons flat over a weekend and that was too much, I felt ill for a fortnight afterwards, but not as ill as I was at the beginning. All things are relative, if I was to feel as bad as I used to now I'd think I was dying lol. I don't know how the hell we put up with it tbh. The only way for me is to claw my way back to being normal, I can't handle being an invalid.

  • Hi Lesley

    I agree with Kerstin and others that often APS patients need a higher INR to feel reasonably well. When I was on Warfarin I had to have an INR of around 4.0 to feel reasonable. I'm now on Fragmin and I feel much better.

    Dave

  • Thanks Dave I will menson it but at the mo the DN come to me I use to go to the hospital every week but since I lost the use of my leg they all come to me I have got the feeling back so can walk better now I just put in for PIP got a letter this morning say Iv got to go see them on 23rd of feb at 9am in Barnsley it a bit away from us so will have to set off eary dreading it now x

  • Good luck Lesley

  • Best of luck, let us know how it goes. MaryF

  • I will let u all know it nice to be able to talk to other that's been thought it as well xx

  • Still waiting for my INR to get above 1.5! Hopefully some of this pain will go then 😊 It's such a vicious cycle - I know if I had better movement and less pain I could do so much more, then I'd lose weight and there'd be less strain on this poor old knackered body!

  • You should not be on that low INR!

    Eat the same amount of K-vit rich vegetables and and ask for a higher warfarin amount. I change my tablet-intake with 1/4 of a tablet up or down. I also can change the amount of broccoli but then I can not change my tablets at the same time. Learn about it if you are going to stay on warfarin.

    Talk to your APS-doctor about you very low INR. Test more often in the beginning before you get how it works. It is difficult especially if you are also Lupus Anticoagulant like I am.

    Kerstin in Stockholm

  • Hi Kerstin, I guess it's early days. I don't self test and was at the blood clinic twice last week. The first INR was 1! I go back tomorrow for another. They only gave me 5mg tablets so I can't change the dose (but I did have some lovely cabbage last night!) The nurse there didn't fill me with confidence as she acted like she'd never heard of APS! Yes, like you I'm Lupus Anticoagulant positive. xxx

  • Do you have an APS-doctor who really understands APS? An INR of 1.0 is what people without warfarin have.

    You must have a talk with the doctor and a talk with the APS-doctor as you must not have those low numbers. What doctor is that who can not monitor your INR at all?

    You are not anticoagulated at all just now!!

    Kerstin

  • Oh Kerstin! I have been running around stupid trying to get some answers! There is only a nurse at the clinic who does not understand APS I think. My rheumatologist discharged me straight after diagnosis so I went to the doctor on Friday for plaquenil (I am in so much pain!). The doctor said it has to be prescribed by the rheumatologist! Doc is going to chase. If I am not happy at the clinic tomorrow with my INR I will call the haematology dept (who are my overall caregivers I think) 😏

  • First of all I want to assure you that you are not stupid! We all have APS and that is not easy.

    I have read that APsnotFab have answered you earlier. She knows this illness very good and I suggest you listen to her and according to her Plaquenil should be good for you.

    I know nothing of paindrugs.

    I want to tell you also that when you start warfarin the value will be very low. I have understood that it was quite recently you started warfarin.

    The first weeks I was also very low in INR. Second day I had 1.4 in INR. 13 days later I had an INR of 2.5. I felt awful and had a lot of neurological symptoms. 3 weeks later I was on an INR of 3.0.

    Hope this will help you.

    Kerstin

  • Hi all I felt well for the last 2 weeks not a lot of pain had a tummy bug for 2 days but my INR when up to 3.4 last time was 2.4 that wot it's meant to be so I asked them if it can stay at 3.4 cos I never felt as good they sed it nothink to do with your INR but my hand and arm is a mess she was a young DN nice but she left me with lots of bruises and Iv not bruised in a long time x

  • I can understand that you felt good at an INR of 3.4! They want you on an INR of 2.4. Of course it has to do with your INR as you say. They do not understand our illness.

    I wish you could have an APS-doctor who understands that you need an INR over at least 3.0 to feel good.

    Kerstin

  • I am going to ask if I can see one then may get answers to things x

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