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Hi,
I have recently been diagnosed with Chronic Hives after having several break-outs from my RA med infusions & other things. My allergist/immunologist says my body reacts like Mastocytosis but she’s sure it’s not (?) Anyways she rxed Zantac 300Mgs a day , Zyrtec 20 Mgs daily & Singulair 10 Mgs a day, it has calmed the hives down & I rarely have had them now for a cpl months.I think I possibly have EDS as my joints are loose & I score 11 pts on the test for it I found online . So now I don’t know which way to turn as I have RA, Fibromyalgia, Asthma, Thoracic Outlet Syndrome,Irritable Bowel, CFS & POTS as well as a basket full of other issues to deal with already , it’s all so overwhelming.Since I have all the symptoms of Mast. isn’t it a given that’s what it is ? Thanks , ElaineDo u feel that the treatment for mast cell ( zirtec and Zantac) are helping you with any of your sumptoms…Especially loose joints? Thanks!!
Hi Elaine,
It sounds like the meds you’ve gotten are a good combination. You’re very lucky to have found a doctor that even mentioned mast cells or mastocytosis. Zantac/Zyrtec is a common combo. If it is a mast cell issue (which it sounds like), the next step you’ll need to take is getting on a mast cell stabilizer (Cromolyn Sodium if in US, Ketotifen it outside US). A mast cell ‘syndrome’ can be diagnosed simply by your reponse to treatment (if it’s helping you, you probably have it). It is great to treat the release of histamine and other toxins that mast cells are producing when they degranulate, but the real issue you need to address is stopping the degranulation in the first place (enter, stabilizers).
I believe that the RA, Fibro, Asthma and IBS all fall under the category of inappropriate mast cell activation. We are in a chronic state of inflammation which can cause many illnesses, simultaneously. Diana or someone more knowledgeable will surely chime in, as I am somewhat new at this as well. I have always known I’ve had issues but could never understand how they tied together (thank you, Driscoll Theory!).
If you have EDS like your score suggests, the barrier that protects your brain (the blood brain barrier) is likely leaky, and this can happen to certain valves as well. We have to address that also because it can cause serious consequences. The fact that you were diagnosed with POTS and could possibly have EDS says a lot. You are Driscoll Theory material!
If you have any type of fluid pressure on your brain (hydrocelphalus), it could be causing pressure on your brainstem, vagus nerve, hypothalamus, other cranial nerves…and I can’t remember where else! Diamox is the drug you want to go to for this. It will relieve the pressure and allow your brain to be where it is supposed to be! This will take the weight off of fragile nerves and tissues that could be causing your autonomic dysfunction.
Talk to your allergist/immunologist about a mast cell stabilizer, and ask about Diamox. The sooner we can stabilize our mast cells, the less we will need things like Zantac and Zyrtec because the degranulation will not be happening. I STRONGLY encourage you to read The Driscoll Theory Part 2 (available on Amazon.com) and also take it to your doctor’s office with you. Once you tie everything together, you will see a picture that finally makes sense, rather than a bunch of puzzle pieces that seemingly belong in different boxes.
I’m sure I have left things out, so I’ll leave it to others to step in.
Good luck to you.
Jen
@mom of 3 the meds have helped with the hives but done nothing for the loose joints I have sprained both wrists , my R.ankle& fractured my left ankle!
@ Jen thanks for the reply I will check out the Driscoll Theory 2 , my Dr didn’t mention the mast cells I brought it up to her because my aunt has mastocytosis.The Dr released me for a year! I am going for a surgery consult next week because my gallbladder is so enlarged it has gone to 5% function so i’m concerned about it stirring things up again !The brain pressure would make sense of my migraines , some days I feel like my head is so full it will explode.I feel like i’m falling apart from the inside out…lolLow gall bladder ejection fractions are common. Makes sense what you are saying about your head exploding. I think you’re in the right place.
@mom of 3 the meds have helped with the hives but done nothing for the loose joints I have sprained both wrists , my R.ankle& fractured my left ankle!
@ Jen thanks for the reply I will check out the Driscoll Theory 2 , my Dr didn’t mention the mast cells I brought it up to her because my aunt has mastocytosis.The Dr released me for a year! I am going for a surgery consult next week because my gallbladder is so enlarged it has gone to 5% function so i’m concerned about it stirring things up again !The brain pressure would make sense of my migraines , some days I feel like my head is so full it will explode.I feel like i’m falling apart from the inside out…lolI couldn’t have said it better than Jen! Please, please, please get a copy of Part 2 of The Driscoll Theory. Most of your questions are answered in there (some of them are toward the end, so bear with all of the scientific gobblety-gook, OK? I’m also working on a hypothesis for those of us with MCAS, mediator (-) (blood work, urinalysis and bone marrow biopsy turns out normal. Please stay close by, as I’m working on a registry for us all to have a blood test to prove this. Cool? Then we’ll need slightly different medication. Don’t go too far while I work out the details, OK? big hug, Diana
Low gall bladder ejection fractions are common. Makes sense what you are saying about your head exploding. I think you’re in the right place.
RIGHT ON, Jen! This is a result of compression of our vagus nerve. Jen, you are starting to know more than I do! 🙂 Big hug…
As I was out searching for more info on Mast Cell Disease, I stumbled across this: http://www.jcadonline.com/telangiectasia-macularis-eruptiva-perstans-a-rare-form-of-adult-mastocytosis/ (click on Figure 1 & Figure 2 to see the picture). I have these eruptions!! They come & go and remain mostly on arms & trunk. This is confirming it more & more. Anyone else get them??
Does the type of Mast Cell Disease make a difference as far as treatment is concerned (skin vs systemic)? I plan to bombard my doctor with lots of questions, but want to make sure I understand as much as possible to ask the questions I need to!! Are blood or urine tests enough to get an ‘official’ diagnosis? I’m planning to bump up the ZZ combo before I go see her so I can have some ‘proof’ to hopefully get a good discussion.
You can choose to start the ZZ combo sooner if you’d really like to, but if you want to show ‘proof’ in your lab tests, you really need to catch yourself very close to an attack of some sort. Imagine taking an allergy pill before being exposed to a known allergen. Your reaction will not be accurate or even usable data, in that case. Some people choose to go off of meds before having mast cell testing done so their doctors can get a better idea of what’s going on without the use of pharmaceuticals.
Most with systemic infections (to my knowledge) need much more aggressive treatment. This is not to say those with MCAS don’t need the same treatment, but they don’t seem to need as much of it (yet). Personally, I don’t see a problem in treating MCAS and mastocytosis the same because I really believe that left untreated or UNDERtreated, MCAS will probably get worse. That’s just my opinion, and I’m no professional. My symptoms have progressed greatly, and I’m terrified that if I don’t stabilize my mast cells soon, I will keep adding on to the allergy (and medication) list.
As far as getting a diagnosis, a positive response to treatment is enough in itself. You may have to discuss this with your doctor in detail or even jump around to find someone to clinically diagnose, but the way I see it – even if you don’t have an official diagnosis, why not take the ZZ combo anyway, if it works? So many of us self treat. It’s a shame, really. I have caught myself saying ‘I can’t wait to get out of the hospital so I can diagnose and treat myself.’
Good luck.
Keep us posted.
Jen
As I was out searching for more info on Mast Cell Disease, I stumbled across this: http://www.jcadonline.com/telangiectasia-macularis-eruptiva-perstans-a-rare-form-of-adult-mastocytosis/ (click on Figure 1 & Figure 2 to see the picture). I have these eruptions!! They come & go and remain mostly on arms & trunk. This is confirming it more & more. Anyone else get them??
Does the type of Mast Cell Disease make a difference as far as treatment is concerned (skin vs systemic)? I plan to bombard my doctor with lots of questions, but want to make sure I understand as much as possible to ask the questions I need to!! Are blood or urine tests enough to get an ‘official’ diagnosis? I’m planning to bump up the ZZ combo before I go see her so I can have some ‘proof’ to hopefully get a good discussion.
There are so many ways that we can be slammed with mast cells! I’ve even seen patients with bullous cutaneous mastocytosis (google images). A real looker, that presentation! Personally, I any overgrowth of mast cells should be treated aggressively. Cromolyn sodium or Ketotifen is important. If you have the area biopsied, a dermatologist told me DO NOT SCRATCH IT prior to biopsy, otherwise, they can’t necessarily see the mast cells.
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