Systemic Mastocytosis: Does anyone have bone pain?

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, 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

STAY AWAY FROM UV RAYS Diana, exposure to the sun will trigger skin rash Flares xxx

What drugs are used to treat systemic mastocytosis?

Hi @jeffreymelsontate, There are 6 six types of systemic mastocytosis and treatment can vary, depending on the type and the body organs affected.
These are the types:
~Indolent systemic mastocytosis
~Systemic smoldering mastocytosis
~Systemic mastocytosis with associated hematologic neoplasm
~Aggressive systemic mastocytosis
~Mast cell leukemia
~Mast cell sarcoma

It sounds like you may be new to systemic mastocytosis. If you’d like to learn a little more about the condition I’m posting to links for you:
~Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/systemic-mastocytosis/symptoms-causes/syc-20352859
~Cleveland Clinic https://my.clevelandclinic.org/health/diseases/24386-systemic-mastocytosis

Were you recently diagnosed with systemic mastocytosis? Has your doctor offered a treatment plan? What symptoms led to your diagnosis?

The FDA have noe approved Atrotripomen which research has proven can not Cure, but significantly extends life expectancy of Mastocytosis sufferers. No doubt your poor Son thinks much like myself " who on this earth would be Sadistic enough to prolonged this miserable existence. It is not living merely surviving. Xx Frankie xx ❤️ 😘 💕

@loribmt Yes I have severe bone pain... going to UAB to have a bone marrow biopsy taken on March 4, I am on AYVAKIT,H1 H2, VISTARIL,MONTELUKAST. CROMOLYN AND AN INHALER...IM 73