Systemic Mastocytosis: Does anyone have bone pain?

I've recently learned that mast cell activation or mastocytosis can cause osteoporosis. I have other symptoms of mast cell issues including constipation, easy bruising, anxiety, itchy rashes, etc. Is there any group for people wanting to share information about mast cell issues and osteoporosis - currently my most painful, limiting issue?

After 2 1/2 years I was finally diagnosed with systemic mastocytosis. I would like to know if anyone else has this condition. I get itchy, burning pain, rashes, welts etc. I sometimes feel so depressed. I have stomach issues and intestinal issues, osteoporosis and osteoarthritis. I will be going for a bone density scan to see if the Prolia worked for the bone problems. I am allergic to many drugs and outside allergies also. I just don't know where to turn with this condition.
I am also having trouble with severe vertigo and dizziness.
Just wondering if anyone else out here has this and how do you manage it.
Thank you so much, Dianna

Hi Dianna, I’m so sorry to hear you are suffering with the same diagnosis as my son. I am desperate for answers too! My son has Osteoporosis as well and he’s only 23 yrs old. The pain in his back is so severe he uses a walker to get around at home and a wheelchair to get out of the house. I am certain the mast cells are affecting his bones and causing this debilitating pain! He also breaks out in uncomfortable rashes, welts, hives every single day. Especially on his face, arms, chest and back. He has reactions to his own sweat! He vomits every day and can barely eat any food at all….only formula. He also has POTS, Dysautonomia, Systemic Eosinophilic Disease (esophagus, lungs & blood), Autoimmune disease, Neuropathy, Gastroparesis, chronic SIBO, colonic dysmotility, bone tumors, esophageal tumors, zero esophageal motility…there’s so much damage that has been done..his suffering has been lifelong. He’s on biologic injections every week, he’s had IVIG infusions, Gabapentin, a ton of other medications but it’s all band-aid fixes. No real treatment has been FDA approved to treat systemic Mastocytosis yet. We are following trials and patiently waiting for a promising medication via infusion to become available. We are also researching how stem cell therapy might be able to help him. Look up Dr. Neil Riordan. We have friends that have had success with his treatments for other diseases.

Hi Christyann, I am so sorry to hear that your son at a young age is suffering so bad with this condition. He is way to young to be this ill. I believe I have had it most of my life but the doctor believes it came from Chemo when I had two forms of cancer. He believes the bone marrow was damaged. I do believe what he is saying though. I do suffer with several issues that he has but not at that extent. I do not want to take biologics because I had such a severe reaction to Chemo after the 12 time. When I looked that up, the biologic the doctor wanted to give me I decided to stay with taking allergy pills twice a day. I also get all the systems he has with the rashes on my arms, torso, back etc..and the burning pain He said I could take them 3 times a day. I am on so many medications already. My heart goes out to your son and yourself. This is not a pleasant disease. I do have acid reflux disease, intestinal issues, I have had anemia from the cancer treatment which is under control right now. I also have spinal injuries from many accidents. I lose feeling in my hands and especially my feet. I hope and pray they can help your son, this is so heart breaking to me to hear of how young your son is with this condition. Please keep me posted on your son, I will be thinking of him!

Hi christyann, like your son I am now convinced I have POTS, I didn't know what it was until I looked it up. I suffer from all the systems. I have tachycardia, dizziness, vertigo, blurred vision, palpitations that wake me up at night and I also get them during the day. The list goes on. I never realized all these symptoms are related.

Does anyone have systemic Mastocytosis and experience extreme lower back/bone pain? Have you had a bone marrow biopsy? Please share your experiences! Thank you

Hello @christyann715 - I moved your discussion and combined it with your existing discussion titled, "Systemic Mastocytosis Bone Pain" - https://connect.mayoclinic.org/discussion/systemic-mastocytosis/.

I did this so you could meet members @repairgirl, @nabravo, @dolan, and @frenchie333 who have all discussed mastocytosis on Connect as well.

@christyann715, you had mentioned your son was dealing with so much pain he was using a walker to get around, has the pain been improved in any capacity?

Thank you for asking! No his pain is still the same. It’s been so heartbreaking because he can’t & won’t go anywhere…he’s doesn’t really leave his bed or the house. Anytime he does, he ends up bed ridden because it’s too much on his body. I’m trying to get him to the Mayo Clinic in Rochester, Minnesota. They have a special Eosinophilic disease & systemic Mastocytosis program there. I spoke to the clinic & I have to get some special testing done for him before we can go. Praying we can get some answers to help him!