Hi had my operation on Monday on my hand for carpel tunnel all whent well came off warfarin a week last Thursday then had to go to hospital ever night to have clexin injection then started back on my warfarin on Monday still having my injection had my INR on Thursday it was 1.2 so they told me to stay on my 2mg Monday to Friday 3mg Saturday Sunday and still having my injection go back to have my INR on Thursday so I phoned the clinic to see if I was doing right think he told me to take 3mg till Monday then go back on my normal dose and still have my injection I had a really bad pains in my right side of my back then it goes up my back I cannot lie down in bed the first night I was screaming in pain so the night after I stared on the sofer can not get comfortable living down but sat up is better did not wont to go to doctors as it only my back and I am on lots of pain relief all ready just wish it would go away it's not getting any better sorry for going on too much thanks x
APS : Hi had my operation on Monday on... - Hughes Syndrome A...
APS
Hi, glad you are through the other side with it so to speak, but if that pain continues at that level do seek medical help just to be on the safe side. MaryF
I hope the pain ceases soon for you.
It's good to see that a coagulation bridging procedure was agreed.
I would only suggest that such procedures can, for some patients, be carried out by the patient at home these days.
When I first had an endoscopy, I had to spend a week in hospital coming off warfarin and going onto heparin then coming back on warfarin after the procedure, and keeping on the heparin until my INR was back to normal. It was a pain and I took up a bed. Iwas though taught how to inject myself.
Last time I had endoscopies I did all the bridging at home having agreed the procedure with those concerned. It is a slow process but our needs, and abilities ,are being recognised a little more frequemtly.
I did not wont to do it my self Tim I now let my husband do it now I did not wont him to do it at first but got fed up with going to hospital ever night lets just hope my INR is back to normal on Thursday cos got to have my other hand done in 2 months then I go away on Xmas day need it to be OK before I go away thanks Tim
I was told I had Carpal Tunnel Syndrome over 20 years ago. I had so much pain in my right arm it was almost unbearable. My fingernails started getting black dots under them and I was admitted to the hospital. I was then told I might have Lupus. It was determined I had a blood clot. After 3 days in the hospital with no confirmed diagnosis my tests were sent to NYC. I was finally diagnosed with Antiphospholypid Antibody Syndrom. I was discharged after 12 days. I have been on Warfarin since. I later had two additional experiences with clots. 1 clot in each leg since and was hospitalized each time. I have not had another clot for years. I get my blood checked monthly and sometimes semi-monthly depending on if my medicine needs adjusted.
Hi,
I also had Carpaltunnel-syndrom several years ago. The Neurologist at the hospital wanted to operate, but I thought that I had not so much pain and said no.
Then i started Warfarin and the Carpaltunnel-syndrom disappeared when I was well anticoagulated. I selftest since 3 years every second day and my therapeutic level is thus kept on an INR between 3.2 - 3.8. I try to keep it on the higher level as I have clotted at 3.2.
See to it that you keep your INR high enough to avoid miniclots or microembolies as you say you usually only cheque your INR every month. To me it sounds too seldom. Did you have your clots after you had started Warfarin?
Best wishes from Kerstin in Stockholm
Yes, but I don't anymore. My INR is between 2.0 - 3.0. I got checked Thursday and I was 3.3. I had to stay off warfarin for a day and change my dosage. I take 6mg on Monday, Wednesday, Friday and Saturday. I then take 8mg on Tuesday and Thursday.
I take the same amount every day (5 mg). I practically never change my dose of warfarin. I have leant to eat healthy food and a lot of green vegatables every day. (We need the green vegs!)
CONSTANCE is the key. As I test every second day I can always bee in range and if the INR is too high I eat more of broccoly and brusselsprouts (in 15 hours 10 brusselsprouts lower my INR to normal) and if it is too low I eat less broccoli or if I change my dose I do it with 1/4 of a tablet. I also drink a glass of red wine for dinner every day (but only 1 glass). When you change your warfarin dose it takes 2 - 3 Days to have an effect on the INR.
When you stayed off warfarin for one day and changed your dose did you cheque 2 - 3 Days later what INR you had? I guess you were very low. That dose, 3.3, is a little low for me. I feel much better on a higher INR.
Many here have clotted on an INR of 3.2! We have very thick blood!
Ask your APS-Specialist to let you go higher in INR! Ask also if you can selftest. There are other drugs than warfarin like Fragmin and then you do not have to test your INR.
When i have under 3.0 in INR I have to take a Fragminshot.
Kerstin
Thank you for the great information. It's funny that you can eat green vegetables. I am supposed to eat as less of them as possible. Most times I have problems when I eat too much of them.
I also have chronic back and stomach pain. I wear a 100 mcg fentanyl patch for that. I change it Every 72 hours.
As Kerstin says, the main factor is constancy in those things that can have an effect on your INR. You can eat and drink pretty much what you want , if you do so every day, as the effect will be a constant and taken into account in what warfarin you need to hit your target INR and stay there.
That said, how many of us can stick to constant?
I quite understand that. If you are not CONSTISTENT (especially with the green vegs like broccoli and brusselsprouts) you will have a swing of the INR.
I have learnt that it is good for us to eat green vegs so I do this. My Hematologist and also the coagulation clinic here at Karolinska in Stockholm, understands this and I inform them every two month and doublecheque my INR in the vein at the lab in the Hospital. I have done this for several years.
I know that many doctors (especially those who do not understand that we have very sticky blood and what APS is as to the symptoms) , are very afraid to let us have a higher INR (which we need) to avoid miniclots and microembolies . My hematoligist has agreed that I have this high INR as she knows APS and also knows me since several years. In Sweden we are so lucky that we can selftest and get the strips on prescription free on charge (to begin with those living close to Stockholm as I do). I use a CoaguChek XS. I have all the antibodies there are for APS and in high titres since several years. I am primary APS (means I have no other known autoimmun illnesses so far).
Kerstin
My INR been ok they only just put it up to 3.5 cos of having bad heads and iv been having lots of pains and dead arms and hands can not pick anything up with them it's not my hands that are bothering me now it's my back no sleep for the last few nights and crying in pain last night and morning and I not had no clots at all since starting warfarin only when I had my stroke last year x
Hi Lesley,
Do you remember that APsnotFab wrote 6 months ago that you should ask for a trial of Heparin. You have said that you can not tolerated Clopidogrel together with the Heparin.
Also she said that you should ask for a trial of Plaquenil.
The most important thing is that you have a contact with a Doctor who is an EXPERT of APS. I hope you will find him and then you will be better.
It is very important that you are well anticoagulated either with warfarin if it is in range and with a higher INR than today or with some other anticoagulation drug. Perhaps Fragmin.
I am quite sure you will be fine when you see your Specialist who understands everything. I do not believe you have found him yet so please try again. Do never give
up!!
Tell us how you manage please.
Right been to the doctors this morning my INR still not good it's 2.2 so still on injections and they now told me to take 3mg ever day going to have my INR done agin on Tuesday and Thursday and told the doctor to get me sorted out with a APS specialist this time and to get my hips sorted as well put my foot down to day after not sleeping or going to bed for 7 days with my back been in so much pain so he give me oramorph and amatriptoline if that's how they spell it lol as if I don't take lots of pain relief but if it stop my back from hurting and to get some sleep finger crossed x
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