Is anyone being tested for their INR ... - Hughes Syndrome -...

Hughes Syndrome - APS Support
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Is anyone being tested for their INR since the lockdown ?

Teanna
Teanna

Hi all.

Has anyone had their blood tested since lockdown.? I’m on 2 injections daily and my blood was so thick that I was being tested Every week to 2 weeks. Now I’ve not been tested since then (March).

Has anyone had the same experience? I’ve also been told (having 4 immune diseases that I was to be shielding). I’m not eager to go out, it does scare me, but any advice due to this shielding, when do u think the time would be ok to go out, as it is mentally getting to me but at the same time I don’t want to go out and catch the virus.

My carer has been great but since the lockdown has been lifted, it’s scares me that she might catch it or be a carer. I did not want to approach her with it all as she is covered up, but it still scares me.

Keep safe.

Teanna

40 Replies
oldestnewest

Hi Teanna

I understand why you are scared about going out . I'm in the shielding group and feel the same but my anticoagulation team said its important that I continue having regular tests so I've been going about once a week as my INR has been all over the place.

They ring me the day before to check that I don't have any symptoms. The clinic is in a Health Centre which has limited opening. There is hand sanitizer as you go in and I always wear a mask. The nurse has PPE and if they are told you are shielding they wear the visor as well as a mask.

Where do you usually have your tests? My Mum has hers at the local hospital and they have a separate entrance for them to go in and the waiting room is spaced out for social distancing.

Is it easy for you to get to your test centre or would you have to go on public transport, have you spoken to your anticoagulation nurse about this maybe give them a call on Monday and ask for their advice.

take care

Teanna
Teanna in reply to Zezes-nan

Hi

Thank you for replying to my concerns.

My hospital was & still is overrun with the virus, so I’m still advised not to go to the hospital & my GP could arrange a district nurse to come out to me. (My GP is very strict & she really scares me), so I’m reluctant to contact her. She was great when all of the UK etc was on lockdown, but she then had 4weeks off due to a bereavement, which it’s got to be hard to get over. But she has change. I was going to get in touch with the pain management team which have been on the ball with myself, but he is only around twice a month, but I have his mobile number and could ask him to ask my GP to have my bloods done at home.

All the consultants that I’m under at the hospital will not allow me to attend NO appointments. I almost lost my life last year so I totally get where there coming from.

Hopefully I will get an answer from him on Monday.

Thank you, keep safe.

Teanna

MaryF
MaryFAdministrator in reply to Teanna

Hi, I do hope in your current circumstances, that they send someone to take your blood at home, let us know what they say. I think it is a good idea to ask your pain management team to help, if you have that as a possibility, for arranging the home test. MaryF

Teanna
Teanna in reply to MaryF

Hi Mary, when do u think the shielded people be aloud out?

Hope yr well?

Keep save

Teanna

MaryF
MaryFAdministrator in reply to Teanna

I am very careful if I am out and about, my long walks happen early in the morning or late in the evening and I avoid going in shops or crowded places. For a long time now, I also wear a mask if I say have to walk through somewhere with more people.

Mary F

KellyInTexas
KellyInTexasAdministrator

I’ll be very interested to watch your replies.

Have you asked the clinic where you normally get tested? They should have measures in place to safely test you. I didn't want to go to the hospital blood test clinic so I asked the GP service if they would do it. They agreed and had set up a separate clinic in a separate building for people who are shielding to minimise the risk to us. I felt OK going there with my facemask. They had sanitiser gel for me to use too.

I have been going out for walks safely as i go to places where hardly anyone walks (and I keep my distance) and where I don't have to touch gates, styles etc and I take gloves in case I do have to. I feel quite safe doing that. Walks make me feel a lot better and keeps me fit. It's really important to do some exercise. That helps our immune systems as well as lots of other benefits, so do try to go out walking. It is possible to do safely

Teanna
Teanna in reply to KerryA

Hi Kerry,

I live in the heart of London and hardly no green but I’m very lucky having 2 gardens which are not big but been enough for myself. I’m wheelchair bound and the only green about is the Dog Park, I don’t fancy that. Also is very busy as most of the people around me (I live in a cul-de-sac), on either side are luxury apartments and they all work from home. Plus 5mins away (it was one of the most visited places by tourists, but now the locals can now go & enjoy). So it’s been busy there, and that’s where my GPs surgery is. That’s why my GP was sending the district nurses around to me. It was great when I was on warfarin as I brought the machine, but I only used it a couple of times then they changed it to Riveroxoban. I still got a DVT with a INR of 4.2, that’s when they decided to put me on 2 injections a day.

So as I said, I will wait till Monday and call my pain management team. But my mental health is suffering so I will also tell the P M team to tell my GP. Also it’s been the same for everyone that’s shielding around here.

Sorry for going on.

Keep safe

Teanna

KerryA
KerryA in reply to Teanna

Hi Teanna. I'm sorry to hear you live in such difficult circumstances and not able to get out walking. Do keep looking for things that you could do to be as active as possible, even though you live in a wheelchair, and also other things to help with mental health. There is a lot of help available.

Re. blood tests, my understanding when you're on Dalteparin, or equivalent anticoagulant, injections instead of Warfarin or Riveroxaban, is that your blood is more stable and doesn't need checking as the dose is dependent on your weight. If I'm wrong or you're on other injections and need your blood checked, then insist on the GP organising for it to be done in a safe way. They have ways and means to do so.

All the best

KellyInTexas
KellyInTexasAdministrator in reply to KerryA

It’s not nearly as strong in the system, KerryA.

I know these are challenging times, and one might be tempted to give it a try, but my body has behaves a bit like Tiannas.

I failed warfarin several times. ( clotted through.) I was placed on Enoxaparin injections. I clottend through. ( and felt poorly.) I will tell you it was done incorrectly for APS patients. it was only given once daily at 1.5 mg per kg of body weight. I clotted quickly - within 2 weeks.

Back to warfarin with multiple clots again.

Then I was trialed on very high dose Apixiban - by an APS speciality rheumatologist. 10 mg morning and 10 mg evening was my dose due to to arterial involvement and multiple vein clots. Clopidogrel and statin are added to the mix. This is this doctor’s trifecta medication concoction for APS.

It makes absolute sense and I must say this doctor is having great success with most of her APS patients. But most APS patients ar not refractory, or this severe.

( someone else might be 7.5 or 5.0 if vein now- and only one vein clot...)

Also- if that patient on 5.0 developed a migraine, the patient could increase one of the doses to 7.5 the next dose only.... so adjust according to sticky blood symptoms...

We tried it, with my hematologist overseeing it and blessing it- and a back up plan in place to switch immediately to enoxaparin twice daily at the highest intensity for my weight. ( I weigh 112 pounds.) so I was prescribed 60mg enoxaparin every 12 hours should the Apixiban fail.

Fail it I did! I felt I was not even on any thinner at all. Within10 days I off of it and injection enoxaparin. I had three clots confirmed by scan, break through seizures my anticonvulsant weren’t able to hold at bay, probable TIA, hemiplegic migraines, and at the A and E a scan was run to verify no bleed in the brain- no bleed detected. ( I was up to 15 mg morning and night- toward the end and the final dose was 20 mg Apixiban... it was over our thanksgiving holiday and my hematologist office was closed. We were in the mountains over this holiday- so we were travelleing back early to get to my hematologist. ( lesson learned- don’t go on holiday in the middle of a big medication switch!)

When I switched over to the enoxaparin, ( split dose this time, the proper way for APS patients) I felt much improved, but not nearly as well as I had done on warfarin, despite its inability to provide steady protection.

I could tell I was not going to be ok on it-

I was on it for a week or two weeks and switched back to warfarin. I felt much better in warfarin. Like a car that could properly go at full speed down the highway- at least when things were right they were right.

The problem as a vast majority of us will know all too well with warfarin is we have too many days when things are not right and the struggle to maintain our target range- and too much energy of our lives becomes by necessity of the diseases itself dedicated to the pursuit of the “almighty target range.”

I can’t recommend. she try a NOAC/ DOAC for the reasons I just gave- but I do understand the temptation to try, for the story I just shared.

She should not need her levels (Xa ) checked with any more frequency while on enoxaparin than with a Apixiban. ( and if on a noac/ doac- only ever consider Apixiban. It’s got more “ horse power” when needed than rivaroxaban.

KerryA
KerryA in reply to KellyInTexas

Poor you. You've really been through the mill with your conditions and treatments. I hope they soon find a stable solution for you.

Teanna
Teanna in reply to KerryA

Hi Kelly, when I had my last appointment with Professor Cohen, she is quite well known throughout the country apart from Professor Hughes. Cohen knows all about bloods etc & I had to see her nearly every week or 2. Now my blood hardly flows back up so although being on 2 injections and I did enough to only have 1 a day, but there’s a concern of the lack of flow, so she sent me to see the vascular surgeon and then have a doplar test, but then it was lockdown. So I’ve not had no blood tests, plus I was diagnosed with Liver failure caused by all the meds that different consultants put me on, in the same week I got odema plus my head became Full of fluids which I could not see until the swelling went down. Then I was diagnosed with lupus. Now I was at the hospital every week sometimes I had 2 appointments in one day. But then came the lockdown. I know that I had APS for a long time but when I was on warfarin, at least I would know whether it had gone up or down. Also the Lupus came on last year, but then everything just went downhill. So what bothers me is my APS, Liver failure, etc would show up in my blood. I’ve not had 1 blood test since the lockdown, I don’t know what my body is doing as these aches and pains I had due to my liver, and my legs (knees downwards) are now completely black.

I have many hobbies and was actually starting a business making Jewellery and I paint, I make cards etc, but then my Ulnar nerve got trapped and no longer can use the hand, I have found different alternatives, but my work but not to the standard is was.

That’s why I feel so down & alone, I’ve never ever suffered with mental health, but I do now.

Sorry I have gone on, but I’m trying to put you in the picture how I feel let down, I know there are worse off people than myself, that’s probably why I’ve backed stepped and take my turn.

I hope all is well and keeping save.

Kindest regards

Teanna

KerryA
KerryA in reply to Teanna

It's no wonder you're feeling so low. Please don't hold back from contacting the consultants and GP. You're clearly very unwell. They need to act quickly to check you over and get you on the right combination of meds and monitoring programme. Hope your PM team can help you to push to get medical help very soon.

Teanna
Teanna in reply to KerryA

Hi Kerry, I’ll be having a telephone conversation with my pain management team on Friday. I did send them a message (I have the main PM team mobile number, (I wish he never gave it til now). But I did ask him & his passed it on to my GP secretary, they should call me sometime today 4-5pm. But I know that right across my records it has (any meds or other) should only be dealt by my GP. But I’m finding it hard to talk to her as she has just come back because of a bereavement in her family. So u have to tread very softly, and she really scares me. So if I don’t hear from her today, I’ll wait till Friday.

Thank you again for yr advice.

Keep safe

Teanna

KerryA
KerryA in reply to Teanna

Don't forget you have a right to ask to speak with another GP if you find it difficult with your present one. I hope she phones, and when she does, I'm sure you'll give her your condolences - make her feel as though you care for her and hopefully she'll care for you. That's what she's paid to do whether or not she's had a bereavement.

KellyInTexas
KellyInTexasAdministrator in reply to Teanna

Interestingly enough, Prof Cohen is my hematologist also. She sent me to her colleague vascular Surgeon Toby Richards.

Prof Cohen is the dr who prescribed Enoxaparin at split dose- at high intensity.

She was concerned about the valves in my arms and wanted prof Richard to check them.

They were ok. ( I’m very lucky.)

I’m so sorry you are having there’s troubles.

I’ll answer more in a bit.

Teanna
Teanna in reply to KellyInTexas

Hi Kelly, do you see her at UCLH? Her secretary contacted me and there was no way that she wants me at the hospital. My GP is to arrange a phlebotomists to come to my house for my bloods. Also quite late last night my Dr at the Royal Free wants to start all the tests etc in 4 - 6 weeks, he said that it was not viable for me to go there until it’s safe. I’m under the Vascular surgeon at UCLH becoz of my legs, again to go there is to dangerous at the moment. I’m not seeing the same Vascular surgeon as yourself, I saw him 3 weeks before lockdown, it’s scares me but I can’t do anything. It’s better to be safe than sorry, but my legs are really black, I will just have to wait.

Teanna

KellyInTexas
KellyInTexasAdministrator in reply to Teanna

I saw her at McMillan. This was about 19 months ago.

Teanna
Teanna in reply to KellyInTexas

Hi Kelly, l don’t know were the McMillan is unless it’s the new oncology hospital, just around the corner to UCLH....

KellyInTexas
KellyInTexasAdministrator in reply to Teanna

That’s it exactly.

Teanna
Teanna in reply to KellyInTexas

Hi Kelly, I hope all things are well....Professor Cohen knows her stuff, but you can for ages for your appointment, but once your name is called, your in the surgery for ages.. I’ve been with her for at least 20yrs ... The Vascular surgeon (I’m not to sure of his name), I saw Pr Cohen then she phoned through to the Vas surgeon, the nurse told him I was waiting, but he kept coming in & out of his office, then saw the nurse & asked were I was, obviously I was waiting right in front of his door, he had not recognised me, called me in......and there it was, a picture of me last year, so swollen, my head had swollen like a football, my were like golf balls (pouring out with water) my lips & body had just swelled...... He saw me on one of the wards, and I was unrecognisable.

But he wanted a doplar on my legs, but as I said....everything was on lockdown. My GP, the liver specialist at Royal Free, will not allow me out. So luckily I’ll be getting the phlebotomist at my home....

I hope your well....

Take care & stay safe

Teanna

KellyInTexas
KellyInTexasAdministrator in reply to Teanna

Please read my reply to Kerry A

Self-testing at home only for me - self-testing review appointments cancelled, no venous comparison test now for several months. Also in the shielding group.

If I made a fuss and insisted, I expect they'd let me go in. I can (usually do) walk to the hospital I test at, and if they are quiet (likely) social distance would be maintainable, so the risk is probably low. But not low enough for me, yet.

I am lucky, I am relatively stable (i.e. compared to many other APS, a lot less stable and more dose-sensitive than "normal" warfarin patients) and I also test weekly, if not more often, so I have a good idea if it's going "off". I know (from previous experimentation and testing) what affects my INR, I know roughly what it should be doing and can spot a divergence, I think / hope. I'd be a lot more comfortable with a recent venous comparison, but not enough to make me leave the house.

Not being tested at all for 12 weeks would make me very very very nervous, not surprised that you are.

I have another possible option I'd be exploring if necessary though - I have someone at home, who I am in contact with anyway (currently shielding with me), who I know can hit a vein (much smaller than mine) and get a sample, so in theory all I'd need from the clinic is the right colour blood tube and barcode stickers and for them to agree to drop it off and pick it up. Not sure if they would agree, not sure which rules it would breach if any, but these are strange times and some rules are a lot more flexible than they were.

In your case, is your carer (who you are in close contact with anyway) able (and willing) to take a blood sample? May be worth asking - I know some are ex or retired nurses. Or are the clinic prepared to send someone out to collect sample (and maybe do it outside, I think you said you had garden). If not then I'd be asking anyone I knew who was NHS if they could come and take it. As last resort I'd look at the private lab services and see whether any of them will send someone to you to get sample - an INR test is an INR test, any lab in the world after all, that's the point. Yes it would cost, but it either buys you peace of mind or it gives you something to prove to the clinic that they need to sort out something better for your care and management.

Hi Ray,

My carer whim is here the 7 days, but she can’t look at a needle, so I’m having to inject myself. But they are not insured if they was going to do anything like this. They did say they would train her, but the lockdown came along. My old carer of 12 yrs was taught everything, but I can’t see my carer who was my weekend carer who now is my full time carer, she will Hopefully in time be able to do injections etc.

Thank you for your reply,

Keep safe

Teanna

Hi Teanna

I am very thankful at this time that I made the decision to buy my own machine. It is the same as the hospital uses. Are you able to purchase ? I would be more worried about what my INR is doing rater than going out to get tested if I was facing long periods with no testing.

Kaz

Teanna
Teanna in reply to veganworld

Hi Kaz.

Thank you for yr reply. I was just trying to put one thing that has to keep a close eye on. I do have plenty of autoimmune issues, so I just pointed out 1 for now.

It is a scary place to be esp with everybody out, it does scare me, but it’s the mental health too. I don’t usually suffer with mental health issue considering what I’ve been through.

Keep safe

Teanna

Teanna
Teanna in reply to veganworld

Hi Kaz, sorry I’ve got a machine, but it’s no good when yr on injections instead of warfarin.

Thank u

Teanna

Glad to hear you have a machine. It is so frustrating when your body doesn't respond as it should. It is scary going to hospitals and doctors clinics. I feel your pain !

Kaz x

Teanna
Teanna in reply to veganworld

Hi Kaz

The machine is no good for me, as I said I’m on blood thinner injection twice daily. So I after I purchased the machine (which was not cheap), I was on warfarin then. But they decided to start me on injections twice daily as I got PEs & DVTs on warfarin. Now I have a machine that’s not worth nothing.

Keep safe, thank you

Teanna

veganworld
veganworld in reply to Teanna

Blimey I didn't think you could suffer with DVT once on warfarin sounds like you have been through hell.

Hope it all settles soon

Kaz

My lab pushed me out to 4 weeks between draws. As far as feeling safe, I get checked before even entering the building. Seating is about 8 foot apart. Everyone is masked and the number of people waiting is minimal compared to pre covid. In fact at one point I was the only one in the general waiting room. Personally, I can't imagine going over 4 weeks between tests. I hate not knowing for sure if I am high or low.

Hi Agent,

Yes I do agree, but they should be a different unit/haematology building because many people need to know their results including all different diseases including coronavirus need blood analyses results. This would work even if the bloods have to to the main blood testing is in the hospital. At least other patients would not be in contact with the virus, but also still taking all the keep safe distance, and wearing masks for double protection. That way they could keep the numbers down for urgent treatment and can always have a doctor (secretaries) to ring with your results. That way we can relax more than sitting there just waiting. As I said in a previous post, I did nearly lose my life and I have 11 other health issues, but none have been monitors except my pain and that’s covered my pain management team. But the rest, I could go back to square one, so it would be great if they could come up with some kind on scheme for bloods.

Sorry here I go again, Sorry....,

Keep safe

Teanna

I asked for District nurse to come to me and it's a good safe service.I would not go on public transport to doctors it's too risky and I am shielding .can you not request this service

Teanna
Teanna in reply to Fra22-57

Hi,

Yes I used to have a district nurse to come round, but when I took a turn for the worse last year, the phlebotomists from the hospital came to my house to take my bloods, I was reassured about all my conditions was where it should be. If my markers of any have gone up, they would admit me. Again, I would be in hospital, but I would not go in as I have said previously, my hospital has and still got the virus, so I’ve taken a back seat, but it’s worrying.

As for my injections, I was on 1 a day, but when I became ill I had gain 2 stone in 8 days, I looked like a football, so they increased my blood thinner, first my UV because the fluid was coming out of my eyes and my blood was so thick, eventually I was put on 2 injections daily, but as I was losing a lot of weight, they were thinking of putting me on 1 injection a day, (that was 2 days before lockdown), then I had the calls of 7 different consultants cancelling until further notice unless I show the symptoms again, so I don’t know what why and when I’m going to get a proper blood test.

Anyway, I’m still here just, but I’m a lot better off than a lot of people, but I still don’t help not knowing. The worse thing is the loneliness.

That’s enough of my moans today lol, it’s not funny really, but if u don’t laugh yr cry.

Keep safe to u all

Teanna

Oh bless you.you really have had it tough.

Teanna
Teanna in reply to Fra22-57

Hi. There are worse of people than myself. It’s more mentally and being a very bubbly person I’ve gone the opposite.

Take care.

Teanna

HI I normally test every 3 days because of my VERY erratic INR and now I am testing every 7 days last test came back at 1.o and they are crazy about it - i have told them that this happens to me and that we need to get back to twice q week - lets see what my test on Monday will be -- i tested last Friday and am now on 120 ml Enox and a FRI -7 = SAT - 7 = MON -6 jantoven anticoag pill 's. This is with my range set for 2.5 to 3.5 . the worst to happen to me was on a Tues. 2.4 and then the following Fri 9.2 ... They are afraid of me going into the blood lab because of me being called a VERY HIGH RISK because of the APS and my A + blood type .BUT i think i should be going back to every three days .

Teanna
Teanna in reply to jetjetjet

Hi, I got a DVT behind the knee and my INR was 4.2. I was told that a few weeks prior my INR was to low 1.7 and my meds was increased. But becoz of my blood flow getting back up the leg, it got so clogged that it formed a clot and just got bigger.

They then decided to put me on Riveroxoban and my blood seemed fine, my legs weren’t so heavy. Last yr came to a halt, they decided that I needed to use injections. So yes, you can get a DVT. Plus I had a PE (that was before the big clot), but I still got a PE on warfarin. I think as long as you keep well, know the do’s and don’t see, know what u can or can’t eat, your be ok.

Good luck & keep safe

Teanna

Is it the popliteal and femoral vein area behind left knee and down to calf muscle the area you clot ??

Teanna
Teanna in reply to jetjetjet

Hi,

It was my right knee, it’s as though it was a kind of cyst, very protruding, very hot and red, and that was the start of my discolouration of one leg.

I did have my first DVT carrying my first child, the doctors said it wasn’t rare, so I had to take aspirin. Once my daughter was born, I was ok & my blood went back to normal until I have another DVT. I was admitted while being abroad, I was in a private hospital (just like a hotel). When I was aloud home and went to the Anticoag clinic, they put me on warfarin with the first Anticoagulation machine. My INR was never stable, and both legs were going discoloured & then I collapsed and i was unconscious for 9 hrs, there they found a few clots in my lungs and I was diagnosed with APS.

But I find the injections work better than than any oral thinners.

Take care Teanna

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