I’m wondering if anyone with PSC has ever had a blood clot in the right hepatic vein (DVT)? Related to the PSC?
I’ve been taking coumadin for over a year now due to this and I’m just curious as to it’s impact on the disease?
Hi Jane. I have blood clots in my right and left portal vein. I have been on Coumadin for three months. I see the hepatologist next month, he said that he will order imaging. I wish I had a answer for you. Psc is such a fun disease with lots of twists and turns. I wish you well.
Thanks for the responce. I know what you mean. So many mysteries??? I guess it’s a wait and see for all of us?? Best wishes to you!!
how did you find out you had blood clots? and what are the symptoms for that? i was diagnosed about a month ago and im trying to rule out any other complications.
I had an ERCP and my liver Dr called me a couple weeks after and told me. I have no symptoms. I was then put on Coumadin/Warfarin per doctors request. I needed to go to Coumadin clinic at 1st and have to get blood work once a month. I tried Xarelto, but had an allergic reaction to it.
Sorry I believe auto correct made a mistake. I meant to type MRCP as in MRI with the iodine. Not ERCP with the scope. Completely different as both are done. Sorry
While I never had blood clots, my brother seems to be prone to them. While in the hospital once, my calves were very tight and sore, and I told them about my brother. So they took me to Vascular to run tests on my legs and did not find anything wrong.
Hi Jane, My husband has clots in both of his portal veins between the Pancreas and Liver. They have him on Lovenox as a blood thinner, it was found nearly a year ago & he was put on blood thinners about 6 months ago (local hospital didn’t take action, care improved by a lot once started to be cared for at Johns Hopkins 6 months ago). In our case being vigilant against any signs of infection to the area has been key, even a low fever is cause to contact for us/potentially an ER visit. It was explained by an Infectious Disease doc that when blood flow is slowed infection can sometimes be the result, I suppose the DVT is part of that. He’s had no resolution in the 6 months on the blood clot, Doctors are hopeful 6 months to 1 year the clot will resolve. I hope yours goes much faster! Warmly, Chelsea
Thanks for your response. The information on this site is sometimes helpful as I never about infectious disease Dr explaining blood flow and infection. That’s interesting. I’m going on about 15 months since I was diagnosed with DVT in my right hepatic vien. I started on Lonenox for about a week and then went on Coumadin/Warfarin. Did not respond well to Xeralto. I’ve had 2 MRCPs since then with no marked improvements.
Recently, as I’ve posted I’m getting much fatigue and sometimes I feel pain in my right side. I’ve often had pain in my right shoulder but never associated it with the PSC?? I have blood work done every 3 months and as of about a week ago the #'s weren’t terrible. So I live one day at a time and count my blessings as I’m seriously going on 25+ years with this disease since diagnosis. My best wishes to your husband as this disease is a bit of a mystery.
I mentioned having blood work done every 3 months above. That would be my liver profile, etc. I go once a month to get my blood work for coumadin levels INR. To be more clear as we were discussing blood clots…
How have the blood thinners helped so far? My husband was taken off of Lovenox a couple months ago as the portal vein created it’s own work around the clot (safe since if the clot clears will just drop into the liver for his case).
On the pain - my husband sometimes feels a tenderness/tightness/ache on his right side around the liver area but he has stints in, so that could be a different cause. He also had a shoulder injury (on his left side) from high school that seems more sensitive now. He was able to resolve it by seeing an advanced activator certified chiropractor, in that school of thought his chiro mentioned that area connects with nervous function/blood flow to pancreas/liver area - though western medicine doesn’t recognize, we were happy to have it reduce pain. If you go to an advanced activator certified chiropractor, they do not do pop/twist but use a disc pump that has a lot less risk of injury and much more training. I know it’s not for everyone or medically certified, in our one case it was helpful.
Thank you for sharing that you’ve been with this mysterious disease for 25+ years, we’re newly into year two & it’s great to hear.
I can confirm CER87’s recommendation of the use of the Activator technique by a chiropractor. It places a very precise, measured adjustment where it is needed. I had it done a long time ago, but loved it.
CER87 & Jeff,
Just catching up on this site as I’ve been getting that usual pang in the side, waiting to get blood work this week. Sorry I didn’t get back to you about the blood thinners. The coumadin works pretty good for me, however, if you make any kind of radical change in diet such as say going on some type of hyke in kale or vitamin “K” food, then it could change how it works. Blood levels need to be done every month, but other than that it’s fine. It hasn’t made the clot go away nonetheless.
Thanks for sharing the info on the “advanced activator chiro.” I’ve been thinking about looking into a chiro and didn’t know there was a difference.
Hoping all is well with both of you. I’m still taking one day at a time hoping the disease doesn’t catch up with me, as my husband is just about to retire and I hope to do some traveling.
One thing pscers often struggle with Is the degree of how much of a “normal” life they can lead. There is a lot going for living life as you want it, but then there is always reality.
In traveling, let your docs/support team know where you are going and when you’ return. Ask them for hospital/doctor recommendations along your itinerary. You can get labs done anywhere but get approvals set up first.
Thanks for that suggestion upon traveling. I will definitely do that, for sure.
I wonder sometimes if this is all in my head, as the pain comes and goes. And then the fatigue is not always so obvious, as I just validate it as the Holidays. Then I sometimes have hot and cold spells and just excuse that as the winter season. In the back of my mind it’s always the PSC. I can talk to my husband about it, as he is so understanding, but nobody else understands this or if I try and talk about it they just try and minimize its seriousness and tell me not to think about it, including my doctors! Ha! Easy for them to say! I’ve been so strong for so long(30 years now). Maybe that’s why, because I have had it for so long, maybe people dont believe I have it. I’m beginning to sorta feel scared a bit. My mother is 84 and needs my attention, as does my brother who is a year older and possibly going through a separation after 30+ years & a job loss. I typically have high energy, but recently it’s fading a bit.
Anyway, thanks again for the valued info and letting me vent a little.
This support group really does help!!
Hello Jane, I know your frustration with the daily responsibility of ageing parents and trying to give your own body and mind the care that this condition requires. I was diagnosed 12 years ago at the age of 48 but leading up to the diagnosis I was very unwell for a long period. Living in a small country town the local GP not knowing about liver conditions had concluded that because my liver function tests were elevated that I must be an alcoholic. Had an occasional drink. I was sent to have a liver scan which she assumed would return as positive to serosis but came back all clear. She had no idea and even suggested that I have acupuncture in case blood flow was restricted.?? By this time my nausea, chronic fatigue, abdomen pain and involuntary twitching had reached crisis stage. The day my bile duct collapsed it became an emergency and I was transferred to another regional hospital which resulted in another two further referrals until finally saw a doctor in Sydney who diagnosed PSC. My family think that because it was diagnosed 12 years ago and to them I seem to be stable their expectations of me are high. Even trying to explain my condition doesn’t seem to effect their thoughts patterns so I just don’t bother trying any more. I have been on 100mg of doxyciclin for the entire time which seems to work well for me and when I have bouts of itching rash I have Ursofalk. As I age I find that joint pain and chronic fatigue is my biggest battle. Even my sons think that because of my weight increase due to having decreased energy is the main reason I have mobility issues. It’s a vicious cycle which often results in this condition causing isolation because of the lack of understanding about it. I am however optimistic that I will live to a ripe age but pray that my quality of life doesn’t deteriorate too much. There is a grand plan for everyone. My prayers are with you Jane.
Thank you for sharing your story. I’m so sorry to hear you’ve gone through so many struggles. Yet happy you finally found someone in Sydney.
It’s good to hear I’m not the only one in the same situation where you feel sorta “alone in this illness or rather not able to share it with others,” as having it so long they simply don’t believe it’s real. Sometimes I even question it, until I get a few symptoms. I found your sharing the “involuntary twitching” word interesting, as I’ve noticed this happens to me at night as I’m trying to fall asleep.
I believe it’s difficult for others to understand, as it is for us sometimes, since it is so rare and not very well understood (even by some medical professionals). I try and give others the benefit of the doubt, yet it us still hard. And, as you say, I also feel a sense of isolation.
I too have always had the feeling I will live to a ripe old age, defying all odds; especially since I’ve had PSC for so very long. I guess it’s just best to live each day as it’s your last and be grateful for what God has given us! My prayers are with you as well Robyn.