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Blood clots in lungs and heart

Hi every one,
I just got home 2 hours ago from the hospital.
2 Weeks ago I was complaining of calve pain and swelling. I felt or was concerned it was a blood clot. In about 2 days it went away so I thought it was just another ache and pain of BD. Then each day I started getting shortness of breath with activity. Last Wednesday, it got so bad I went to the emergency center. I also started coughing up blood. They took an x-ray but it did not show anything so I was given an antibiotic and sent home with a diagnosis of Bronchitis.
The breathing got worse. Friday went to my Orthopedic Doc to make sure that I was not passing clots from the leg. He looked at it and told me that in no way it was a clot and sent me home,
10 pm Sunday night, I started having sharp stabbing pain in mid chest and could not get a breath. I called out to my husband (he was in another room), Stood up, made it to the doorway then dropped to the floor. After a 911 call, EMS was there in 3 minutes and I was on the way to hospital in 5 minutes. Everyone was sure I had a heart attack. In the emergency room it became a nightmare.... all of my veins would collapse when they tried getting blood or putting an IV in. after 4 hours they literally forced enough blood out of my thumb to get blood gases. My blood pressure was 201/110 my respiration was 153 my oxygen level was 80. Blood Gases came back normal so no heart attack. White blood cell count was elevated. No Temp. Next chest x-ray: Showed some shadows so I was to be T sent for a CT-Scan with contrast. I still did not have an IV. It took 4 more hours to finally get a mid line IV. I was immediately taken to have the CT scan. They took one set of pictures and stopped. I was told that before I got back to the room they would know what was happening to me,
It was less than 10 minutes that I was back in a room when the Hospital Internal Medicine Doc burst in the room and told me I was being transferred to Medical ICU and there was a good chance I would not make it. He then explained (on the way to MICU) That I had a blood clot in all lobes of both lungs and a "Saddle Embolismic mass" in both left and right ventricles of the heart. Lovenox was immediately injected in my stomach, was given aspirin and nitro. And on oxygen. Over the next few hours was given several tests including an Ultrasound of heart, lungs and legs. They found another clot behind the right knee. The heart had not suffered damage and the lungs looked to be free from permanent damage.
The next 24 hours I stayed in MICU. They were able to get my Blood pressure down to 118/81, Oxygen levels back up to 92, and heart rate to 88. Was sent back to a regular room on Tuesday night and was released today. My IRN (Blood clotting factor) has not gotten above 1.2 . It needs to be 2.0 or greater to dissolve the clots. With it being Easter weekend the consensus of 6 Doctors was to send me home with home health nurses checking me every other day with giving myself Lovenox shots every 12 hours till IRN levels are high enough. Then continue taking Coumadin for at least six months. Then have a blood work up by a hematologist to see if the BD has caused any permanent blood clotting problems.
That brings me up to tonight, where I knew as soon as I could…I would sign on and let all of you know this can happen to any of us. And it is due to BD.

One good thing that came out of this: I took a whole hospital from being totally ignorant of Behcet's to having Doctors ' Nurses, Lab Personnel among others...to being educated about BD and multiple Medical papers are coming from forth from all of this. Within 5 hours of being in the hospital I had at least 200 medical staff on the internet finding out about BD. Anyone who asked I told them to go to this site. To get the patient's point of view.
Hopefully by the ignorance of doctors that I had to put up with and not dying... We as a community will be helped. I will keep all of you informed on my further adventures ….

Dora S from Ala

karend
moderator

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Behcet's disease and lungs

My friend Behçet's disease decided to "drop in" on my lungs.
According to the doctor, this is a case of one in one million!
Before that, I had ulcers and superficial thrombosis.
And now the lungs.

The treatment was with cortisone/steroids (75mg) colchimax. Which did not have as much of an effect as the 6 injections of cyclophosphamide.

Is there anyone here with a similar experience?

Thank you for your testimony and answers.

Good luck to all.

Behcet's disease and lungs

My friend Behçet's disease decided to "drop in" on my lungs.
According to the doctor, this is a case of one in one million!
Before that, I had ulcers and superficial thrombosis.
And now the lungs.

The treatment was with cortisone/steroids (75mg) colchimax. Which did not have as much of an effect as the 6 injections of cyclophosphamide.

Is there anyone here with a similar experience?

Thank you for your testimony and answers.

Good luck to all.

Itchy!!! Also in need of a rheumatologist in RI

Is anyone else crazy itchy? It seems silly but I can't figure out why its mainly my arms. I know last year I would be itchy from being in the sun or when I would work in my garden, not everytime which is weird. This year I have already been applying sun screen but I would love to scratch my arms off!!

I am on 10mg/kg of Remicade every 5 weeks along with 6mgs of Prednisone (the lowest dose since starting 2.5 years ago). I cannot understand what is triggering it. I know some foods and alcohol can trigger flares but I am wondering if its the Remicade. For the most part all of my other symptoms are under control. I am thinking of doing a diet trial but not sure where to start. I have tried taking antihistamines, applying topical steroids and lidocaine gel nothing helps. This has been coming and going for the last 2 months (so before being out in the sun). Any suggestions are appreciated!!
Oh and if anyone knows a good rheumatologist in or around Rhode Island I am looking. The first one told me "You're not Turkish or Japanese" and walked out, the second one replied "That's not true, that didn't happen" when I explained why I was in the hospital for 3 days.

Well, at least he didn't waste your time and the other being so defensive has more than being a rat's asshat issue. The Vasculitis Foundation web site would be a good place for answers and referral list for Rheumatologist's in your area. I am west Northwest coast myself. Also a good place to check is the closest University Hospital or even the Hospital web site. There would be listings for patient services, specialist and doctors review or profile. Once you get setup with the Specialists as you need them, if you set up management care with your primary care doctor it is easier. You can set up the general care management with the primary who can keep watch over the testing, levels and general health. (I use a nurse practitioner when I can, less attitude more listening) if I begin to slide or experience something that needs to be addressed further or doesn't respond, I head to the Specialists. Cuts my wait time and expenses. Let's face it, going to the doctors suck. I highly recommend getting a support or counseling with someone outside family or friends. There is only so much anyone can handle chronic illness. Have something you enjoy doing that is calming and easy to do. Take a break from life , a deep breath even if it's for an hour(Massage is wonderfully relaxing , mentally calming and good for you)

I am seeing a dermatologist because of Behcet's effects my skin. Acne stays thick on my arms, torso legs and face. I am scarred by it, bruising and really itchy at times. Before you go to a dermatologist, get bathgel baby oil and lotion. Eucerin makes a sensitive bathgel and lotion with oil that works well. Showers are best to not dry the skin as much as a bath. Twice a week at least, before I dry off, I use straight baby oil rubbed into my skin. Take your time, this seals moisture into your skin. Then towel off, it won't ruin your towels. Use the lotion a few times daily. I use inexpensive derma-abration (spelling)? It's by neutragena, facial sonic scrubber kit with little blue pads. I got mine from walmart to use one a week. Face arms legs all over to get rid of dead skin. It helps with the lesions I get and infections. Trying all this will help but you can tell the doctor It IS NOT just dry skin!! That's all I heard for years. Now when I break out, the dermatologist just gives me an antibacterial, fungal ointment or a shot of cortisol to handle that part of the disease. There really isn't much she can do but treat that symptoms. My first meeting with her when I told her what I had, she asked what she could do for me. I explained that there is no cure and all I needed was treatment for the symptoms and when I was unsure of what I had to rule out anything else. No poo poo disbelief was needed. Opinions were welcome but being opinionated was not. She was really great, said I could call in if she was needed beyond my primary . I can go in for a shot too if needed.

I use a clinic with with multi-specialist so the records are all at hand. University of Washington Medical Hospital is available if it gets to that point of need. I am on Social Security Disability only and state food assistance so it's terribly hard deal with chronic illness. Getting doctors who take your Medicare Plan, will set up a monthly pay back plan and listens? Too hard. I have to depend on weekly food bank and charities to get by. It's easier now the kids are adultsbut iI did work until my health became really bad. I pushed it because I had no choice. But as we know sometimes is stays turned on and we get stuck. We get old too, ha! I guess I am saying, you need to look at this illness and your steps, choices to management it. I was thinking a daily health diary you show you doctors as needed.

Choose your medical plans, coverage carefully. You doctors and where they are. The name of chronic autoimmune disease is just that so look at long term, take your time. Do not be so full of pride that you do not ask for financial aid. It doesn't get any better but helps long term. Ask for information. Wow, my finger is sore. This forum has lots of articles and wonderful advice. I hope you find what you need.

Thank you so much, I thought I was going crazy. The first time I started itching I gave myself cellulitis by scratching just once. They doctors said it was because of my Remicade which made me very nervous. Then they said it was a bug bite. I am a veterinary technician so that is possible, if its true I am screwed when flea season starts. I am glad to hear that someone else gets itchy. I also have bruising from everything except my iv cathers. Some of my bruises have been there over a year no one seems to be concerned but me. At least my eyes and multi organ vasculitis is under control.
I do try to relax as mcuh as I can. I sit and watch my Koi, last year I taught myself how to fly fish and this year I think I might try golfing. I figure I might as well do what I can while I can still see. Here's to never giving up!!

Summer is a special hell of flea bite, flying blood suckers, and misc bugs. I get huge skin sores that can turn deep. Takes months to heal. I burn a candle before bed and bug spray! Yay my bruises are long term on one of my legs too. I'd love to have a no I pond. I am not good with fish though. Try the Eucern lotion, professional stuff for sensitive skin. Helps me a lot.

Glaucoma with Behcets?

Just wondering if anyone out there has Glaucoma that was caused by Behcets.

Hi everyone I'm new to the community. I am 32 years old and have been struggling most of my adult life with different illnesses that now I believe is all connected by the Behcets Beast. Anyhow, my primary concern at the moment is with my eyes. Last year I was diagnosed with primary open angle glaucoma, is this connected to Bechets? Does anyone out there share this symptom? Thanks in advance for any helpful comments:)

Thank you robpleticha.

behcet_spain
moderator

Hi April

Nice to meet you here at the commnunity ¡¡¡¡

There are a lot of sympthoms about vision and our eyes that are classic in BD. Glaucoma is one of them.

Other may be, uveitis, escleritis, cataracts, hypopyon, optic neuritis, Sjögren Syndrome associated with BD, etc,

So it's very important to be treated by a good ophtalmologist ¡¡¡¡¡¡

Kind regards.

Gonzalo.

Gonzalo, thank you for your reply. I am so frustrated with Dr's and their pills. No one that I am paying for help seems to know what is going on nor do they seem to care most of the time. Guess we just treat the symptoms as they come and pray for the best. Wishing you a good day. :o)

Symptoms that are "not" Behçets

Hi
Does anyone ever have symptoms that the doctor says are not because of Behçets but you know you never had anything like this before Behçets? I feel like this happens a lot and maybe the disease leaves us open to many things the doctors say are not related to Behçets at all but are indirectly?