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 bleed..... what are your signs? tingling, throbbing, heat, swelling, redness, pain, limited ROM, muscle… 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!