My dear friends, I have a question. I have severe Hemophilia A, without inhibitors. I'm 48 old.

I have been on Hemlibra for 1 year and one month now. I haven't had any bleeding episodes so far. But last Saturday (6 days ago), I hurt my ankle on the mountain. There is no visible bleeding on the outside but it hurts, I can't stand on my leg and now I use crutches. Again :(.

Four days ago the doctor told me to freely take factor 8, 2,000 IU Novoeight and that it will be enough for me. I took it but it wasn't enough, my ankle still hurts. I'm a little better, but still not well. Yesterday I gave myself the regular dose of Hemlibra that I give every 2 weeks.

Do you have similar experiences and even though I gave myself factor 8 four days ago and yesterday I received a regular dose of Hemlibr, am I allowed to take another dose of Factor 8 today, 2,000i.j or not? My wrist really hurts Now it's past 2am and I can't sleep because of the pain. What are your experiences with this situations?

Got an email about this study, just passing on the info. They said VWD and those with asthma diabetes can apply too, it’s testing a new pen device and a 3 hour commitment, in “a city near you”

Link here to apply

Hope this can help some families who could use some extra $, especially dealing with unexpected medical bills and insurance issues that can come from living with this condition in the U.S.

Hi All, I am experiencing repeated elbow bleeds and it is too often, at least twice per week. I don't have prophylactic treatment and only on demand factor is available here. I got infusions only after a bleed. Since the elbow bleeds are occuring too often I have to go to hospital twice a week to get infusion. I haven't experienced any other bleeds in the past 2 months except multiple elbow bleeds (its so painful as well).

I am a software engineer and I use computer a lot and I spend my free time in computer too, could this be the reason?, I exercise my arms sometimes with a light dumbell, but that didn't seem to improve the elbow. Any tips/advice is appreciated.

Thanks.

I have extremely heavy periods, and was thinking that surely I would bleed less if less womb lining had formed. So firstly, could that be possible?

And if so, is there a way to actually prevent so much forming, e.g. like avoiding alcohol or other things that thin blood/promote bleeding.

First greeting from a long time lurker,

I’ve been with my htc specialty pharmacy for the past 9 years. They’ve been awesome and I’ve created a great bond with them. the only down side is they don’t ship medication nation wide and only cover the state I am at. Due to nature of the new job, I’d be flying to other states more. I have severe arthitis on my knee and ankles so I’d love to carry less weight when travelling through airport and tsa so having medication sent to the destination is a good option.

I am using altuviio and I get CVS specialty pharmacy from Aetna through the job health insurance.

Has anyone have any issues with getting Altuviio through CVS, are they good? I assume that since CVS has a large network nation wide, they should be able to ship medication across 50states.

If cvs can’t do nation wide shipping, I’d stay with my current htc pharmacy cuz they’re like family to me.

Recently diagnosed hemophilia A female here. My biological father is a severe heme A with factor 8 deficiency. The way my hematologist explained is women fall on this spectrum of clotting issues based on stress, hormones, etc. my current clotting levels are WNL and my factor 8 is in the normal range.

I am concerned about pregnancy, and the risks associated for not only me but for a child. I saw high risks of Post partum hemorrhage & risk of intracranial hemorrhage for baby as well as risks for other bleeds. Have any heme A women had any major issues giving birth etc.

I have genetic testing at the end of this month also.

Hey fellow bleeders. My name is Brandon. I have a bachelors and master’s in exercise physiology. Professionally I have worked for the United States Olympic Committee and now a research scientist in the human performance space. I would like to just get a pulse on my hemophilia community in regards to your own personal experiences with fitness, nutrition, sports, health and wellness, etc. Can’t wait to get some dialogue rolling here.

If you have any rare bleeding disorders or can relate to this post in anyway please share!!

My son is 4.5 months old and has an undiagnosed bleeding disorder. At 10 days old we took him to he circumcised and he bled so much after the procedure that he needed a blood transfusion. This is how the process began. All of his bloodwork was normal upon discharge (other than his hemoglobin was still quite low, we did bi-weekly bloodwork until it was back up). We had a follow up appointment with the hematology team a month later and the hematolgist was not concerned and decided it was a "fluke" that he bled so much from the procedure. When he was 2 months old we started noticing that he was having spontaneous bruising, we followed up with this same hematologist and he ordered more extensive bloodwork to test for more uncommon types of bleeding disorders. These again have all come back normal. Flash forward to now, he seems to be bruising super easily now that he is playing more (kicking, rolling, etc). His legs are absolutely covered in petechaie from kicking his toys. When he gets bloodwork done, or when he gets his immunizations, it takes 1-2 hours of pressure to stop the bleeding. Our hematolgist has ordered genetic testing that has been sent away and we are currently waiting for results. We are just searching to see if anyone has had a similar experience or has any suggestions? The team we have been dealing with has been great but I know how broken Healthcare is in Canada so any suggestions we can bring up to the team would be super helpful. Thanks!!

https://www.menshealth.com/health/a46698423/realizing-i-was-a-runner-despite-my-hemophilia/

Moving to Singapore for work. My firm support very good health insurance. I want to check if Hemlibra or Novo8/ Esperoct will be provided using health insurance? Thanks in advance!

Not gonna explain much about the injury, I have a slight issue on my gum. It seems to bleed a little not a lot but its very irregular bleeding, like I don't have hemophilia at all, stopping after a few secs.

Today, I had an intense orgasm, like making unconscious from the level of excitement. It caused my gum bleeding to start. I was wondering if it's similar with you all? I also have noticed that getting high blood pressure on particular area with injury causes it to bleed. But even orgasms too?

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Not gonna explain much about the injury, I have a slight issue on my gum. It seems to bleed a little not a lot but its very irregular bleeding, like I don't have hemophilia at all, stopping after a few secs.

Today, I had an intense orgasm, like making unconscious from the level of excitement. It caused my gum bleeding to start. I was wondering if it's similar with you all? I also have noticed that getting high blood pressure on particular area with injury causes it to bleed. But even orgasms too?

​

Ive been haveing an ongoing injury for a year know where i seem t keep hitting my knees causing them to bleed, use crutches and not be able to walk. Today while trying to help my dad i hopped of the bed of his trunk (2-3ft) while my leg was not 100% and i didnt feel anything at first just a little slight discomfort. i could sstill walk but that was only for a little, 2 hours later i was back to using my crutches as i felt like i was bearing to much wieght and slight imobility, im not sure if this is a bleed since ive never bleed from something like this only from a hit and once from running unhealed.

Researchers at Utah State University’s Acceptance and Commitment Therapy Research Group are recruiting for a study evaluating an online, self-guided mental health program for individuals with chronic health conditions (UtahACT.com/CHC), including epilepsy.

Participating in this study would involve the following:

• Completing online surveys at three time points
  • baseline, 30-45 minutes
  • 6-week post-test, 30-45 minutes
  • 10-week follow-up, 30-45 minutes
• Being randomly assigned after completing the baseline survey to either...
  • The treatment condition in which you will work on the online mental health program over the next 6 weeks.
  • A waitlist condition in which you will be provided with the program after a period of 10 weeks.

The online mental health program is made of 6 sessions (30-40 minutes each) and takes about 3-4 hours total to complete over 6 weeks. You would receive up to $50 for completing surveys (all payments made via Amazon gift cards).

You need to be at least 18 years old, have received a diagnosis of at least one chronic health condition and have had this diagnosis for at least 3 months or more, live in the United States, be able to access the internet via a computer, phone, or tablet, and have interest in completing an online mental health program in order to participate.

If you are interested, you can learn more about the study at https://www.utahact.com/CHC. If you have any questions about the study, please contact the study coordinator at ACTGuideCHC@usu.edu. The principal investigator for this study is Dr. Michael Levin (mike.levin@usu.edu) and this study has been approved by the USU Institutional Review Board (Protocol #13890). You can view the trial pre-registration here: https://clinicaltrials.gov/study/NCT06179264

[This post was approved by the moderators of r/Hemophilia]

I'm weird situation. I have alpha granule deficiency, and as a result, I'm 40% deficient in my alpha granules, and I'm mild low in Factor VIII and fibrinogen.

For context, I started exhibiting symptoms in my late '40s (and for context, I'm a woman). Long story short they did a ton of testing and they finally figured out that I had alpha granule deficiency. However, I have none of the known mutations. I was tested for the main mutation that they know of along with having full genome sequencing done. With where medicine is right now, there is no known cause for my illness.

When I was first diagnosed, my hematologist tried me on tranexamic acid. It actually made my bleeding way worse. My bleeds were more frequent, deeper, and bigger so I was taken off of it less than a month on it. That shouldn't have happened because my doctor said in a worst case scenario it just wouldn't have an effect on me.

He's decided to try me on Aminocaproic Acid tablets. I need to take 1 g every 4 hours as long as I'm awake. Given what happened to me with the tranexamic acid, obviously I'm a little hesitant.

I just wanted to know if anybody has had any experience with Aminocaproic Acid, and if so, what your experience has been?

TY!

21M, Type B Severe, My situation is a bit complex, My factor deficiency changed from factor 8 to factor 9, I found out like this, I had a severe swelling in left hip joint. So anyways, I was being given 1200UI of Factor 8, along with Tranexamic acid 1000mg, and the Swelling wasn't going. After that doctors tested my factors again to find out I had F9 deficiency and 1.1% (severe at that). I was given F9 and was advised to take Tranexamic acid thrice a day. 15 days pass by the blood clot's still there. Apparently, Tranexamic Acid was preventing the clot from dissolving even after the injury was healed. The internal injury was probably because of a minor stretching or such.

I was suspicious of the tabs then stopped eating it and did daily walking. The Clot gone after some time and my hips better.

Some days later, Now there was some other internal injury, I knew it so took Tranexamic tabs, turns out it did stop the bleeding but the blood clot stayed there for 3 weeks. The clot wasn't severe so I didnt have much problem. FYI, blood clot takes like 3 days to dissolve.

So, my advice is to take it as early as possible, or don't take it at all if you are getting clotting factors.

Also, applying compressions and ice to injured area helps greatly.

I'm 21M, just last year when F8 wasn't working on my body after some good doses, doctors had me tested for F9, and apparently the Results were 1.1% (Severe Case) Type B and Type A > 180%. Previously, when I was an infant (1.5yr) I was diagnosed with Type A 18% (Moderate). Should I have both of them tested again?

Also off topic, Does taking heavy doses of Factors last longer? It's been a month since I took 1800UI doses, my gums and inner cheek (that I bit) started bleeding and stopped after a few mins, not once but happened like 3 times in a week at almost alternate days. before I had to take doses to make it stop.

I have hemophilia A and since December 2022 I've been going back in forth with my knee injury as I keep on getting hurt, I used to be able to go on my knees, hit them and be okay but get a while the smallest things started getting me hurt, I'm not Sure if it could be the medication or getting hit to often but I'm looking for rehabilitation exercise apart from squats so I can get back to walking, other advice for care could help too.

Is it common knowledge that Estrogen effects your Vonwillibrands factor? Maybe I'm really late to finding this out!

Hi guys! Moderate Hemophilia A here. Before taking the Factor VIII level and Inhibitor test, how long should I wait after using the anti-hemophilic factor? I want my test results to be accurate. I used 750 IU on March 26 and 27. In total, I used 1500 IU a week ago. Is it time for me to do the test or do I need to wait a few more days?

Hi everyone. I have Hemophilia A. My elbow joint is pretty bad due to frequent bleeding and I cannot fully flex or extend my arm. So, I want to do an MRI scan of my elbow including my whole body. I wanted to ask about the contrast agent used for an MRI scan. Is it safe to use for hemophiliac? I’m underweight so I’m unsure if I should use it. In case, I have an allergic reaction to the contrast what should I do immediately?

Do you recommend a CT or MRI scan for damaged joints? Also, has anyone done a radiosynovectomy in their joint? Could you explain to me in detail what that is? Does it really work in preventing frequent bleeding in the target joint?

Hi, I have mild hemophilia C (~50% activity), but weirdly have intermittently low von Willebrand Factor. I've had times where vWF activity and antigen are ~40%, with FVIII around 45%, and other times where my levels are all on the lower end of the normal range (like 70% for vWF antigen and activity). My docs are treating me as though my true vWF levels are low (using my lowest data point), but since they are currently normal, it's hard to justify Humate-P, despite my mild bleeding history.

Does anyone else experience this phenomenon of vWF fluctuating in and out of the normal range, or even with other factors relating to hemophilia A/B/C? We have no idea what to do with the information anymore, frankly, and it's making the treatment process very frustrating.

👋 hello,

I've noticed mutilple parents having concern about their children having hemophilia. I wanted to address this as a severe hemophiliac myself. This disease is not a death sentence like it once was but can be trying at times. I just want to say as long as you be the best parents to your child they can have a beautiful life just like any other person.