Much help needed please. . . SSc DUs complicated by Raynaud's. . . Throbbing pain & no sleep in over a month

Hello, I live in New Jersey with my boyfriend & our 2 month old son. My boyfriend was diagnosed with Scleroderma & Raynaud's at about age 9. He is now age 28, far exceeding the doctor's initial expectations on mortality. Upon diagnosis, which was not easy to come by, he was treated quite aggressively by the top doctors here in the states. He has battled calcium deposits his entire life, had countless surgeries all over his body, & has suffered from numerous ulcers. As a boy he DUs so bad that they had no option but to amputate the top half of his finger. He also went through a peripheral sympathectomy shortly thereafter. His hands are a mess, for lack of a better word. Fortunately, as he has gotten older, he is far better at understanding his body & the disease which allows for him to take the necessary precautions resulting in far less ulcers. However, life has been rather stressful & busy with the new baby & the weather here has been unpredictable at best. About a month or so ago he developed an awful ulcer on his index finger. It is the first one he has had in a couple of years & it is a particularly bad one. It encompasses his entire tip, all around the nail. In fact, the nail is loose & looks about ready to fall off. He has been on antibiotics this entire time & is also on Amlodipine 5mg. As you can imagine, he has tried every available medication here in the states at least twice. Most all of them cause major migraines & other awful side effects. He has participated in a number of drug trials run by his doctor. Nothing ever seems to work. He is in so much pain he is unable to sleep. Going to work is next to impossible on no sleep & when you can't type. His entire arm is in tremendous pain & throbs relentlessly. Nothing seems to heal this ulcer or help with the pain. The worst part is that he is unable to hold our son because of the pain. It is so difficult to watch the man I love suffer this way. I spend as much time as possible researching alternate treatments & therapies. I simply cannot imagine the pain & agony these diseases bring. If anyone has any further suggestions on different remedies you have tried we are all ears. He really needs to get some sleep & get this ulcer healed. Thank you so very much.

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  • The gold standard treatment in the UK is inpatient iloprost infusion given by a drip. It usually involves a hospital stay of around 5 days, but is an aggressive vasodilator. It was the only thing that helped an ulcer of mine heal that turned gangrenous. I,m not sure if your health insurance would cover this as obviously this is not an issue for us in the UK. Please also try the following forum as you can link it internationally i believe,

    sclero.org/forums/index.php...

  • Thank you for the link. I will definitely check it out. I've started searching internationally because there seems to be very little concern regarding DUs here in the states. The primary focus is on organ involvement. Doctors here basically just expect people to live with the pain. It is so sad. I've uncovered much information on Iloprost infusion yet have found nothing about it here. Thanks again & best of luck on your journey.

  • I was told, quite by accident a couple of years ago, by a nurse that I was seeing for something totally unrelated, about a tape that's impregnated with a drug. You just cut off the amount you need and wrap it around the affected area, as you would a sticky plaster. I had trouble getting it last time, so not sure if it's still available, but it healed the fingers and great cracks on my feet really quickly.xx

  • I was given Haelan tape by a Dermatologist to help with the cracking around the cuticles. I just put a strip on at night. It does work, but very slowly, it has taken a couple of months to heal.

  • Has your boyfriend seen a specialist? There are some very good ones in the US. But it needs money. Look it up on the internet. Good luck.

  • I read on a post a few months ago about Paw Paw cream/lotion for ulcers. It is sold only in Australia. I ordered some as a precaution for if I ever get an ulcer. If I feel any sensation on my fingers, I rub a tiny drop into the area and it goes away. It is also supposed to help heal existing ulcers. You can google it. There are a couple of. companies that sell it. I have been using it for severe dry spots on my face and it works overnight. I have Scleroderma, Raynaud's and many other conditions. Blessings

  • Thank you all for the great suggestions & advice. I appreciate it more than you know. I will definitely keep on my search. He has been treated by some of the top specialists, surgeons & hospitals here on the east coast. The specialist he sees here in Jersey is supposed to be the best. I don't doubt her expertise, but I do doubt her willingness to treat her patients as she seems to be more concerned with research & drug trials. Good luck to all of you & thanks again! Much love

  • Hi,

    I too have Illoprost every year as a preventative measure against Ulcers, it does work if you can get it.

    I also take high strength Ginger capsules which really help me. If I run out of them I get usually always get an ulcer.

    May not help as his condition sounds more severe than mine but they are hebal so wouldn't do any harm.

  • This is simple but it has helped me on sleepless nights with finger ulcers. I use desitin diaper cream on the ulcer and put a band-aid on it. The zinc in the cream helps heal and the band-aid keeps it from drying out and air making them hurt so much. I understand what you are saying about using your hands,I have hit an open ulcer on something and actually thrown up from the pain. I hope you feel better and good luck with the baby.

  • I have read about the Ginger capsules & am very interested in seeing if they will help him. He hates taking medications & would much rather take herbs whenever possible. I cannot wait to tell him about the Desitin! I have been telling him to try zinc because I have noticed how it heals absolutely everything on our son. It is amazing! He has been reluctant to try it though because the skin surrounding the ulcer is raw & peeling. Simple moisturizers seem to burn. Thanks so very much for all the great feedback!! You all have given us so many new things to try. If nothing else, you have given us hope. Thanks so very much.

  • Hi, i so know what your hubby is going through as i too suffer very badly with du's and have too had amputations in the past. I take Bosentan twice a day and also have regular Iloprost infusions which help for a few months. My Scleroderma nurse in the Ulster hospital in NI recommended Flamazine ointment to lightly apply to the skin surrounding the ulcer which i use during the night when the pain wakes me up. I also recommend Savlon cream which helps to numb the pain for a while. Hope this helps him as this really is a debillitating disease and people don't understand the sheer intense pain these ulcers cause. xxx.

  • Wow. Thank you so very much for all the suggestions. I have one by one been researching them all & ordering whatever I can. It amazes me how all of you are so incredibly strong & brave. This disease is merciless & unbelievably cruel. I never knew such a thing exhisted before meeting my boyfriend. Honestly, I never knew how debilitating it could be before living with him. He has been living with this since he was a young boy so he has learned to hide his pain & suffering from the world. Aside from his physical appearance, you would never know that anything is wrong with him. He never complains, he never feels sorry for himself, he never allows it to run his life. He is due to see his doctor again today. This is the worst ulcer he has had in quite some time. Hopefully this ulcer will heal sooner than later. Thanks again to all of you. Best of luck

  • God bless to him,I have SSc just for 6 years.I hope your husband will gets some rest .You sound like a lovely family ,am very sorry for him and you because you have too look after him ,and it is very hard...when you have a baby to look after too ...god bless too you all .Truerose

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