Help us

Posted , 8 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

My husband was just diagnosed about one month ago with Buergers Disease.  I am typing this for him because this disease has affected his fingers on both hands.  My husband was a heavy smoker but he has been diligent to quit.  I am very proud of him.  We have had NO cooperation with 3 doctors to help him with his pain.  They did prescribe Nifediprine-not sure if spelled right-but he was miserably allergic.  My husband says that there is not enough pain pills in this world.  We have an appt. on Monday with a hospital in Chicago to see what they can do to help.  Could you give us some ideas on what medications help all of you????  Please know that my heart goes out to all of you because I see what my husband has to deal with.  Bless You All!!!

1 like, 26 replies

Report

26 Replies

Next
  • Posted

    I am so sorry to hear that your husband has this difficult and extremely painful condition. I don't have Buerger's, but another vascular disease--cryoglobulinema and other painful conditions. 

    I read up on Beurgers, and I found the best info from Wikipedia and mayo clinic. My best advice is to see a pain management specialist in addition to the cardiologist. There are things he can do an pain medication is warranted. My husband died of lung cancer, and the oncologist did almost nothing for his pain. So I took him to a pain doctor, and it made all the difference. In addition to morphine, he knew that the best pain killer for cancer in the bones is simply Motrin! The look of relief on his face was priceless. I wish you the best of luck. Stay determined and educate yourself as much as possible. That is what has helped me.

    Report
    • Posted

      Thank YOu for writing us back.  Sorry it took me so long to acknowledge.  I am so sorry to hear about your husband and I know how painful life can be after losing a Dear Loved one.  I will get some motrin because I had no idea that would even help.  Hope you keep in touch and please take care of your health.
      Report
  • Posted

    ​=12.0ptHi, first of all, I sympathize you and your husband for this bad time. Unfortunately there is no cure for this disease. Medicines don’t usually work well to treat the disease. The best they can do is to control the symptoms. Nifedipine, a calcium channel blocker, may help to improve blood flow for some period to improve numbness. However, there is only one treatment for Buerger’s disease — immediate and complete cessation of smoking and other tobacco use. People with this disease who continue to smoke, predispose themselves to the risk amputation.=12.0pt 
    Report
    • Posted

      Thanks so much for writing back.  We hope your day has been well.  Yes he has completely stopped smoking and I am working on it.  I do not smoke at all in my house anymore though.  My husband, who has the disease, has completely stopped.  How long after you stop smoking do you feel relief????  Thanks,
      Report
    • Posted

      Hi, I know of people that have never smoked that have buergers, and i personally have not quit 100% (almost though) and my fingers healed from gangrene to you almost would not know by looking at my fingers now. he pain is still off the charts, I am on alot of morphine and lyrica, as well as have been on other drugs to help with blood flow. I was even put on Cialis daily, and it helped....it was weird  cayse being a woman and all,lol. However it was origionaly made for heart problems. So, I just wanted to say that there are more options now than ever before to help with this disease. We that have it dont have to feel totally deflated by the disease. I just had a surgery done (4th) person in canada to have this kind done, and my fingers are warm again. Anyways, just wanted to share a bit of what I know from my experience with Buergers.
      Report
  • Posted

    I was diagnosed with Buergers in Feb.2014. My symptoms started in Sept. 2013. It has been nothing but hell for me. Doctors dont know, or have not ever seen this disease, so it is one doc after another. I am on morphine, long and short acting, hydromorph for in between doses, lyrica, crestor, fluoxitine, low dose asa,and was on Cialis at one point. Your husband is right there is no amounts of drugs to take away the pain. My fingers (3) of them turned black/gangrene right in forint of my eyes. Scariest thing i have went threw. So after many drugs, doctors, and the latest is a surgery called"arterialization of the venus hand". It is basically a bypass in the hand. I have warmth again now, but the one bad finger i believe might have to be partially amputated. I feel like I am  all over the place with my story....Sadly i get excited when I meet someone with this hellish disease. You can add me on facebook if you like and then you can see my pictures of my fingers. My feet were also effected, no gangrene though. I really look forward to talking to you. Let me know if you would like to continue to share our stories. Best wishes. Oh, the cialis and the morphine and lyrica i feel is what has helped to some degree. The surgery also was helpful, I suggest you google it. I look forward to hearing back from you. BTW, I am a 47 year old,, half a pack to pack a day smoker when this happened.
    Report
    • Posted

      Thank You so much for answering us because we are, honestly, at our wits end.  He has recently started on ER morphine and it does help some.  He is so happy that you wrote back because he feels really alone and extremely depressed about this whole situation.  He has totally quit smoking, no smoking aids, and he can feel that it is helping his left hand.  The right hand is in bad bad shape.  He fears that he is going to lose his index finger on his right hand.  But he is not on any of these other meds that you are talking about so I am going to bring it up to his doctor in Chicago.  We go to Chicago on Monday.  Do you have someone helping you?  Send me a friend request and I will confirm it.  I am not very good at that-we do not do very much on computer-just learning.....Hope your day is good.
      Report
  • Posted

    You are all wonderful and Thank you for the replies....we have been scared to death....he is going thru this pain, and I am feeling beyond helpless....it is hard to watch someone you love hurting and suffering...it feels like we can not find a doctor that even understands or comprehends or cares about the pain he is in....I Pray for every single one of you...God Bless
    Report
    • Posted

      It truly feels like your nerve endings are on the outside of your skin.I feel so bad for your husband. And for you also. This has been so hard on me, my husband and my kids.
      Report
    • Posted

      Hi there....I hope your day was good....I thought I may ask you how I could help my husband the most????I see his suffering and I feel completely 100% helpless. You know it is very very very hard to watch a person you Love suffer in this way....I love him dearly....im here for him but you know at times I'm sure that he can sense my hopeless attitude. I hope not and I truly try to not be like that. We have been together going on 19 years at Thanksgiving....my role has, I guess, been the problem solver up to this point. this is something, tho, that I can not solve for him. I Pray and I ask GOD please please please help him....I did see your pictures and I wondered how long did it take for them to heal some?????please take great care of yourself!!!
      Report
  • Posted

    I was diagnosed with Buergers Disease in 2012. My fingers were all blue and I mean blue. When I called my doctor, she thought I was exaggerating until she saw me. I was in a great deal of pain and it seemed nothing could help it. I started getting black streaks under my fingernails from broken capillaries and the pain got worse. After I was diagnosed, I was put on nifedipine. A couple days later I found out I am allergic to that so I was put on amlodipine. The recommended dosage is 10 mg per day but due to my already lower blood pressure, I have only been able to get to 7.5 mg per day. I was told that if this did not help, I may need to try cialis. The amlodipine gradually helped and today I am pain free and my fingers are back to their normal color as long as they stay warm. If he is having a lot of pain, I found soaking my hands in warm water, not hot, helped with circulation which is why he feels pain. I forgot to mention this also affects my toes. This is from blood clots in the wrists and ankles. In the beginning I felt like this was going to disrupt my life but now that I have it managed it hardly interferes. I don't know if you travel by plane but I have noticed a little discomfort after traveling. May be high elevation but I'm not positive and it is not unbearable.
    Report
    • Posted

      HI Ann, you have just described me, from tips of my fingers to tips of my toes. The drugs you talk about are what I have been given. The streaks on my nails broken capillaries....then pure black. I was given cialis and that helped also.  I just had a surgery called arterialization of the venus hand doen to my left hand, and now the ciculationis fine. I will still have to get my middle finger tip amputated as the gangrene was severe. Im waiting for a date for surgery on my right wrist. You are the first person i have talked with that has the identical simptoms.
      Report
    • Posted

      I was told there was nothing to "fix" this. I did not know anything about the arterialization surgery. Good to know there is something if things get bad again. As I said, I do not have any problems now other than my fingers and toes feeling very cold at times. That makes it hard to go outside in the winter (in Maine) but I'm more of a summer person anyway. When I was first diagnosed there was not much information on the internet but I still look every couple of months and there is some research happening so hopefully this will be curable eventually. Good luck with tip of your middle finger. Hopefully that is the worst of it.
      Report
    • Posted

      The surgery is like a bypass in your hand. It is done to add circulation, which means they stay warm, no more being cold.  I live in Winnipeg, its  -40 today, its been to cold for me to go out. I tried going to a physio therapyy appointment by my self, and that was a fail. I got up got dressed, started my car(hubby bought me a car starter so i dont have to go out to start it), got in the car, it was the seats were still cold, and iy sent me running into the house. So I am frustrated. So glad spring s around the corner. I started getting sick in Sept. 2013, was diagnosed Feb 2014. It was awful. My family doctor didnt know anything, my rhuematologist didnt know anything etc. Finaly i have a surgeon who can do this for me, but i really would like a rheumy to help me out, so i found one, and am waiting to see her.  Have a great day. Very nice talking to you.
      Report
    • Posted

      Hi Ann, thank you for the reply. I hope you are doing good and continue on this wonderful road to recovery. Yes my husband has been prescribed both of those meds that you mention...problem is he is allergic to both of them.....he took 2 pills and swelled up like a balloon and both his arms and chest broke out into a horrible rash. He was just diagnosed with Buergers Disease. Your story is similar to his....his fingers turned blue...on both hands....it attacked the right hand worse....then it started on the left.....then he was in so much pain he actually agreed to go to emergency room and they admitted him and checked his heart out real good....nothing wrong with heart....Thank You Jesus!!! HE has suffered in pain and we just haven't met up with the right doctor yet.....please stay in touch. I will keep you and your health in my Prayers.
      Report
    • Posted

      When the fingers turn black....is that what you are referring to when you say "gangrene".....he has two that are black on his right hand. On the left hand it's black along the nail bed....it's the index finger and the middle finger on both hands and v truly they both hurt so bad. What is gangrene....is it just like infection?
      Report
    • Posted

      I will try to figure out how to get some pics on facebook so u can see
      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up