As a newly diagnosed female (former symptomatic carrier without treatment) I am trying to understand what others are experiencing and what advice they are getting. I want to have some background info to bring to my local hematologist and my HTC. Since my diagnosis I have heard some people say treat for pain even without swelling or heat, others say that there has to be visible signs of a… read more
What are your levels? They do not always mean anything, but they can help a bit. My level is @ 20% - but they do change depending on the time of the month. When I have visible bruises that are spreading I treat. When I have swollen joints that hurt I treat - I treat with procedures and surgeries. When I broke my sacrum and also had swelling I treated for 11 days. When I gave myself a minor concussion with a goose egg on my head I treated once and it seemed to improve so I left it (probably could have treated 1-2 more days, but it is still new to me). I always treat at least once for a joint bleed. I can go two years without treating or I can have periods of being a total klutz and treat a lot.... this year was one of a lot of stress, which meant a lot of stupid accidents and tons of treatment.
Oh wow, I would be in trouble with only two at a time... First, I should say that I live in a really rural area that can sometimes have all roads in and out slide with no access for a week or so.... as a result, they always give me a 10 day supply for emergencies in case I cannot get out or factor cannot get back in... in this case I have gone through the ten day supply and the replacement with my current post surgery bleed.
I have hemophilia A and my levels go between 20-32%...... it will be interesting to see where they settle in menopause... they tend to level out as your hormones do.
Tina - I also use [[treatment:advate...:565f4ee46bcd6190960002b8]].... Have been on it daily off and on for weeks due to surgery.... I cannot believe how much of it I have used in the past few weeks. What I will say, is I was very glad I had it when I had a hemophilia emergency and also glad I could self-infuse before I got to the emergency room as the local ER does not stock it (I try to keep a 7-10 day supply at home so I have it when I need it - which has been critical this last week as I had a post surgery bleed and am now exhausting my home supply and will have just enough to last until the next shipment arrives. Hang in there!
I am really in the same boat as you are - also trying to figure it all out (at age 44 now, but finally given proper factor products just over a year ago). I cannot always tell when I am having a bleed, and usually I figure it out a few days later when I am still in pain. There are some obvious things... pain that does not go away. A joint that suddenly swells and is purple... those are the easy ones... the more obscure pain is harder... last year my hip hurt for weeks and I finally infused to see if it would help (on the advice of my HTC) - it did. So yes, sometimes the best option is to go with the "when in doubt, treat" - I have also been given permission to use it preventatively if I want to take a dance class, go zip lining, etc.
And sometimes joints do have pain with little swelling, so it is a learning process.
So glad you finally got the correct diagnosis! It is a very liberating and empowering experience to get the right diagnosis and be able to treat correctly!
Interesting since I had a total hysterectomy to resolve nonstop menstrual bleeding and now my last factor level was like 120....... I think that is why My Dr doesn't think I need treatment very much. My levels used to be between 20-32% and I once had a 160 during pregnancy, still had heavy bleeding with delivery. I live very rural as well, in Upper Michigan...but a few days is the longest I recall all roads being closed. Where do you live?
Today I am trying to figure out if I should bother calling my treatment center. I did a lot of walking this weekend (for me) and today my left knee (the one I've had trouble with for years) is swollen and painful. And to be honest I don't know if it's a bleed or arthritis or what. The only two interactions I've had with the treatment center Dr haven't been very good and I really am not feeling like he would be helpful.
I hope your on the mend Shellye!