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Message started by peter on 08/09/14 at 11:01:13

Title: question
Post by peter on 08/09/14 at 11:01:13

I've been stable for 3 years on Zometa Iv for osteoporosis Tryptase come down
Now my Tryptase has started going up slowly the  pain in my legs is telling me my bone dx is going bad again along with bad brain fog
The question is when or should I go back on Zometa if I wait and it go's the same as last time I will be disabled by the pain and brain my doc sead wait I don't know
What do you think

Title: Re: question
Post by peter on 08/10/14 at 11:03:14

Any ideas of what would be coursing the chronic increasing Tryptase no reaction s

Title: Re: question
Post by peter on 08/11/14 at 12:49:53

One bit of info I will pass on when my Tryptase is above 30 my blood pressure is
75/125 when the Tryptase was 25 blood pressure was 85/135 and 90/140

That is follow-up over 5 years not bad for an unfit 58 year old

Title: Re: question
Post by Joan on 08/11/14 at 16:30:16

I would think the Zometa would be up to the doctor to try again.  Do you think it helped lower your tryptase?  Pain can be a symptom of reacting.

Tryptase is released as part of mast cell activation, so your mast cells are degranulating if the tryptase is elevated, from my understanding.  It can also indicate an increase in mast cells, so you could be tested for that.  I can't imagine that higher tryptase would cause lower blood pressure directly, but mast cell degranulation can cause blood pressure to fall.  Mine can go down to 80/50 if I'm really degranulating a lot.

Have you ever tried turmeric capsules?  It reduces inflammation and can help with pain.  Nancy Gould recommended a teaspoon 3 or more times/week.  You might ask your doctor if that would be contraindicated for any reason (It contains salicylates, so not for the aspirin sensitive people).  Taking it with some kind of oil or fat and with bromeliad (digestive enzyme) can help absorption.  It might also stabilize tryptase, but don't know yet for sure.

Some people ind that increased antihistamines make pain go away.  That happened for me when I reached a therapeutic dose of them.  Are you taking any H1 or H2 antihistamines?

Those are my only thoughts….

Title: Re: question
Post by peter on 08/11/14 at 20:52:57

Hi Joan yes I will be back on zometa iv if the Tryptase keeps increasing and the bone density go's down it did stop the Tryptase last time
The blood pressure thing is amazing the whole time my Tryptase was at 25 my baseline blood pressure was high now the Tryptase is increasing slowly my baseline blood pressure is great
Would that be what the researchers call pasiv continues anaphylaxis my mane problem is the weird head that comes with the increasing Tryptase I operate excavators for work
I use to chat with Nancy before she died she was a lovely person and help me a lot

Title: Re: question
Post by peter on 08/13/14 at 11:34:43

Can we have surgery while tryptase is increasing
Iam having my teeth out by surgery or should  wate until it's stable
I wouldn't be asking only my doc was unsure

Title: Re: question
Post by Joan on 08/15/14 at 17:25:34

Before any surgery it's important to pre-medicate with steroids and antihistamines.  I suggest you discuss pre-meds with your mast cell doctor.  Dr. Akin told me that there's no reason to avoid necessary surgeries because of mast cell disorders as long as there is sufficient pre-medicating.  Those meds should be continued for a day or two after surgery, too.  Again, something to ask your doctor about.

Title: Re: question
Post by peter on 08/16/14 at 11:50:17

Thanks Joan we don't have mast cell doctors in Australia all the specialist I have seen think systemic mastocytosis and mast cell activation is a Mif
Thay give the treatment but that's it
Until your experts are able to explain what SM with MCAS is that won't change
I am not able to go back on zometa until I have my teeth out
But I am not able to have my teeth out because I've been on zometa
Catch 22
I gess we will see what the natural process is

Title: Re: question
Post by peter on 08/17/14 at 21:01:18

Well it didn't take long 3 days straight big dizzy spells from blood pressure drop s
Back on all the pills

Title: Re: question
Post by peter on 08/18/14 at 17:56:33

Ha joan  any idea why Zometa would Stop my systemic mastocytosis
And bring my Tryptase down all symptoms gone while iam on it
And why Would this not work for others with SM will increasing Tryptase

Title: Re: question
Post by Joan on 08/21/14 at 12:26:23

I don't know. It's used for bone loss due to a number of cancers, as well as SM, but I haven't found anything that would indicate it could cause a reduction in mast cells or affect BP. You could email one of the mast cell specialists in the US.  Maybe it would help other patients!

Title: Re: question
Post by peter on 08/22/14 at 11:01:05

Ha Joan I tried email the experts the only reply was from Dr Kansas that's not sepllt right but you know who I mean
Iam having my teeth out as I think it maybe my teeth coursing the MCA
If that stops the increasing Tryptase then I won't need the Zometa as it is the MCA that is coursing the bone loss like cycle One thing course another

Jut having trouble getting surgery or a doctor who will do it we are going to take One tooth out first to see if it heels ok if it dose then we take the rest wish me luck
Iam confident it will work

Title: Re: question
Post by peter on 07/09/16 at 11:41:13

I gess i had what ever Zometa IV every 3 mouths FOR 3 YEARS is used to Treat

Title: Re: question
Post by peter on 12/06/16 at 14:04:44

well it turns out iam allergic to cancer or the spred of a skin cancer to the bone marrow thats why the tryptase went up and why the zometa worked

Title: Re: question
Post by Joan on 12/12/16 at 19:17:48

Peter,

Have you tried mast cell meds?  If they would control the symptoms, that might be something to try.  Do you think the Zometa lowered your tryptase?  If so, how do you think it did that?

Title: Re: question
Post by peter on 12/14/16 at 12:05:08

you ask simple questions i should have the answers all i can say is before zometa i had a lot of pain arthritis carpel tunal  sciatica bone pain back pain neve pain  and all of that went away Now the zometa is wearing off all the pain things are coming back not as bad yet the logic is if the zometa treated the courses of increasing tryptase is why my immune system carmed down So what happens if we loose the ability to know right from wrong so the answer to your question Not my JOB ITS YOURS

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