It’s been a long time since the last time I posted. Not that everything was roses, but it’s partially because I was feeling better!
I know ! It’s hard to believe that after dealing with so many problems for so long that I was able to actually feel good about myself. If only for a short while. So while I don’t like using this website to bitch about how crappy I feel , I’m coming back to it because there have been some new developments. Yes, I’ve had many more symptoms recently than I have had in the last 6-8 months but I’m hoping to keep this blog going after the symptoms begin to subside again <knocks on wood>
So at the beginning of the year my rheumy finally convinced me to go see a hematologist. Because of my Antiphospholipid Syndrome, I probably should have gone long ago but for some reason I put it off. But my rheumy had been on a mission to get me taken off Coumadin. According to her, she felt uncomfortable leaving someone my age on blood thinners for the rest of my life…. So instead of taking me off them outright I suggested (and she agreed) that I see a hematologist to get an opinion about my Bloooood!!
Here’s where it gets complicated. In order to check my blood for the problems that the Coumadin treats (in my case blood clots from Antiphospholipid Syndrome) I have to be taken OFF Coumadin. So for the month of January I was blood thinner free and on a nightly regimen of aspirin.
The month was stressful and painful. Fortunately I didn’t have another blood clot form while off the Coumadin but pain that I hadn’t had in months came back with a vengeance. Most people look at me strangely when I say that my veins hurt – but I don’t have any other way to describe it. I noticed a dramatic increase in the pain in the back of my calf and in my hip area (areas that I have had problems with before). While it’s hard to describe to someone who has never had a clot, it reminds me of a the pressure you feel when your leg has fallen asleep and you are trying to wake it up / that mixed with an intense pressure.
More to follow…
Well, yesterday was my monthly INR check up and lo-and-behold… It was too low. 1.5 to be exact so now it’s back to getting it checked every 2 weeks.
Even though the doctors offices are fairly close to my house, it is still a pain to get checked. Especially since every time I go in I am the youngest person in the waiting room. Don’t get me wrong – I don’t mind having a waiting room that is NOT filled for the brim with kids. But when I’m usually the youngest by at least 20 to 30 years, it begins to make you think. These people have lived long full lives and are dealing with the illnesses of old age – I on the other hand am at least a generation younger and I’m dealing with problems that are just as serious as theirs.
For my fellow loopies that don’t have clotting issues or APS… After my initial blood clot and because of several episodes before that, my doctors determined that I needed to be on Coumadin (aka Warfarin) , a blood thinner, for an extended period of time. With most clotting episodes (those without autoimmune issues) the patient is kept on the meds for 3-6 months to allow the clot to dissolve. In my case it will probably be for life. So in comes the issue of monitoring – frankly, Coumadin is a poison that if left unmonitored can possibly cause life threatening problems such as hemorrhaging. But with regular monitoring – INR checkups – one could potentially be ok on it for life.
Insert monthly checkups here… That is if your INR is stable. Which – lucky me – mine is not. So because my body can’t seem to regulate the meds – my INR fluctuates and I have been going in for checkups every week or every other week. Not easy with a busy schedule like mine. Unfortunately monitoring INR isn’t as easy as monitoring a diabetics glucose – although the machines do look pretty similar and the method is the same, a finger prick. INR machines are still very expensive (talking a couple thousand).
Today’s INR was OK. The range for a person not on Coumadin can very but is usually around the 1 area (I think). The range for a person on Coumadin therapy is between 2 and 3. My INR today was 2.1 – just barely in the range. Personally I feel better when it is closer to 3, less headaches, less tingling sensations in my legs, less lupus fog. But getting my doctor to agree/be comfortable at the level has been a battle.
Is anyone else reading this on Coumadin therapy? What does your INR normally run? And do you feel better/more comfortable at higher levels too?
So be amazed. I’ve wanted to start a blog for a long time – and I’ve actually started many of them… I just unfortunately forgot to write or do anything with them. So ladies and gents – it amazes me that I have the ability to remember to do this one… For now.
So the exercising/ trying to be healthier continues and yes, my legs and abs are STILL sore. I’m weak – there’s no denying that. But in spite of the pain I’ve managed to go swimming last night and get a little strength training into today. Yeah I’ll say it – woohoo for me!
But unfortunately my headaches are back and in my experience that usually means my INR has gone back down. So I get checked Friday… Does introducing a new workout and diet (just watching calories) change the way the coumadin is metabolized? I’ll try to look that up and find the answer.
Also, back to visit my rheumy this next week for my regular visit – more vampires, oh goodie.