Hello,

I was recently diagnosed with ISM.  I have spoke to Dr Castells on the phone a couple of times and have an appointment in February.  While
I've been waiting, I have plenty of questions. I am taking the routine H1 and H2 meds along with Gastrocrom.  I sometimes get sick with cold or flu symptoms and I am scarred to take anything.  Is anything safe for this. Also, Dr Castells recommended adding aspirin and singular.  Has anyone had success with these.  

I have a lot of pain in my lower left back (internal) doesn't feel muscular.   From my own research I believe this could be my spleen swelling.  Dose anyone else suffer from this pain?  I also have mild to severe pain in my hips, arms and legs.  I am just dealing with it now but I think I am going to need to take something for the pain if it gets any worse.

Does anyone ever get the flu shot or other vaccines and does this cause a reaction?

Finally, I am curious if anyone can jog/run on a regular basis without having an attack and do you pre-medicate first.  Any information on these topics would be greatly appreciated...Thanks, Joe

Welcome Joe. This forum is a wonderful source of information and I think you will find much help here. But please remember that we are not doctors. Something my Mast Cell Doctor has emphasized to me is the importance of having a local doctor to work with in treating me. I know, I know, that's not always an easy task. But with this disease we tend to be very sensitive to many different medications, some that could potentially be extremely dangerous.

Now with that said, I think it's GREAT that you have contacted Dr. Castells and have an appointment set up with her. I've heard nothing but great things about her. Redbird is correct...you should NOT start aspirin therapy without the supervision of a doctor. Some of us can take it without much problem but for others it can set off flares. My Mast Cell Specialist, Dr Afrin, also mentioned it to me (to be started under the supervision of my local doctor ONLY) and he explained it should be started with a very low dose. IE Half an 81mg baby aspirin twice a day escalating to 81mg, 162mg, 243mg and then adult coated aspirin at 325mg, 650mg, and finally 975mg twice a day as tolorated. You still remain on the H1 and H2 blockers. In fact Joe, any change in medication should be done in small increments to make sure you can tolerate them. It's frustrating because we want so deparately to feel better NOW! Right? But this is how it needs to be done.
As to the Singular, I've heard that it's helped many. Again, I have to stress that what might work for one person may not work for another. So you have to play detective (preferrably under a doctors care).
I hope that some of our more experienced people here will chime in and give you suggestions for cold/flu medicine and vaccines. I'm sorry I can't help you with that.
What I have learned here and with my personal experiences is that if you are concerned about a symptom and not sure if it is Mast Cell related, get checked out by your local doctor. Maybe a CT scan or some type of imaging test could rule in/out the possibility of your spleen being an issue. I also have read that with Mastocytosis the spleen can be affected. But I also know that the mediators that are released from the mast cells can cause many, many, many issues and symptoms. I was worried I had Lymphoma based on the pain and discomfort in my noids under my arms and in the groin area. My local doctor sent me for tests and thankfully I am negative for Lymphoma. So for the time being I know that the mediators being released are the guily culprit. See what I'm saying? So don't hesitate to ask your local doctor to run tests to check your spleen out. Much of what we go through includes ruling things out!!!!
I also experience the mild to severe pain in my bones/joints. I have yet to find what works to eleviate my pain. NOW (in the past 10 days) I have a new pain that is sharp, sudden and has caused me to fall three times now. It's in my right hip. I'm going in today to see my local doctor to have this checked out. I've learned that the mediators could be doing damage to my connective tissue's. So although I'm POSITIVE this is mast cell related, it could be causing permanant damage and needs to be checked out.
So, Joe, like I said, I hope someone else will chime in and help you out with some advice. Hang in there and just keep investigating, asking questions and learning. We will do all we can to help you!
Best of luck to you!
Kim

Thank you to all that replied.  Your information was both valuable and appreciated....Joe