Mast Cell Disorders Forum - phone call with Dr. Castells?

kristi

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phone call with Dr. Castells?
08/30/11 at 16:34:44

I sent all of my records to Boston and have a scheduled phone call with Dr. Castells on Thursday. I guess I have to talk to her on the phone before I would see her in person. Anyone else do this? Any suggestions to prepare for the call? I want to use the time wisely. My biggest questions at this point are:

1. Are there any other tests that I need to figure out why I'm so sick and can't eat anything?
2. Are there any other diseases to rule out given my symptoms?
3. What meds should I be taking and what doses?

I'd love to hear from someone who has been down this road...

thanks,
Kristi

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Patricia

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Re: phone call with Dr. Castells?
Reply #1 - 09/01/11 at 01:52:34

Hey kristi! We are actually going to see Dr Castells this am for a 2nd follow up visit. and yes I had been emailing with her and scheduled a phone conversation and then we determined that my husband should come for a visit. I think she wants to make sure neither of you are wasting your time. She is an amazing woman and has been incredibly helpful, she knows her stuff and if she can help you she will.

I think all your q's are good, I started writing q's down because sometimes I would get so overwhelmed Id forget everything. i wish sometimes that I could just video tape visits with certain doctors because half the time I wouldnt understand a thing they were talking about and then Id forget everything they said!
Good luck and keep me posted on how it goes!
Patricia

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DeborahW, Founder FOUNDER/ADMIN Offline Posts: 1224 USA	Re: phone call with Dr. Castells? Reply #2 - 09/01/11 at 06:24:25 In the event that you haven't read the tips in our "Read here first" section of the forum, I have a list of good questions to ask a specialist at your first appointment. You might find some additional questions there.
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kristi

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Re: phone call with Dr. Castells?
Reply #3 - 09/02/11 at 19:30:03

Thanks for the pointers, Ladies! The phone call went great. She did have some additional testing she wanted my local allergist to do. And she wanted to him to start me on gastrocrom. I'm excited yet nervous I won't tolerate it. I want to start asap while I'm on a prednisone taper for a nasty flare. That should keep me from reacting to it I think.

Patricia, I hope your husband's appointment went well. I appreciate her doing the phone consult first before scheduling an expensive trip to Boston.

Have a nice holiday weekend!

Kristi

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Patricia

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Re: phone call with Dr. Castells?
Reply #4 - 09/03/11 at 11:12:54

Hey kristi! Our appt went well and we love Boston, great city and we were lucky to have great weather. My husand was a lot less itchy up there and it's really sad because DC has pollen and enviormantal allergies almost all yr long! We are on the fence about starting Enbrel and xolair injections and she gave us her opinion which was to stop wasting time and get on board. It just seems aggressive for me and i worry about the long term consequence. He has elevated levels of IL13 which is creating a lot of pain and inflammation for him, these injections are supposed to really help so we have some decisions to make.

When mynhusband started the gastro we had to start slowly and build up to the 8 vials a day. His stomach would blow up and hurt even more...it takes about 2 weeks to start to work but it took us a lot longer. Have patience...I've also heard that it takes a long time to build up in your system since so little is absorbed.

Good luck and I hope you get relief soon!
Patricia

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Joan

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Re: phone call with Dr. Castells?
Reply #5 - 09/03/11 at 17:23:32

Hi Patricia,

It's really hard for me, mentally, to start on more medication, because it means I have to admit that I'm having a more serious problem than I want to have. I do know, though, that there is a cycle of pain which causes stress which causes all the other symptoms to get worse. This is true of many auto-immune problems as well.

It's such a difficult decision. If your husband decides to start the Xolair and/or Enbrel, and it might be better to try one at a time, perhaps he can get some relief from the horrible symptoms he's been having. (Both drugs are given by injection so he might not react.)

I think what Dr. Castells feels, and it's hard to see this when you're in the thick of the situation, is that he's better, but he's still not having good quality of life enough of the time. And, it could be that the amount of IL13 and inflammation he's having can cause other types of damage over the long term. It certainly can cause depression and related problems.

It's possible that he can get on these meds, and his body can rest and recover somewhat on its own. He might not need them forever. Even if he needs something always, there are so many new drugs being investigated and approved all the time now.

I'm not trying to convince you one way or the other, but wanted to present another way to look at this. I have a relative who is on Enbrel for an auto-immune disease, and she is ecstatic not to have the pain anymore. Her entire demeanor is changed.

Good luck with whatever you decide!

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Patricia

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Re: phone call with Dr. Castells?
Reply #6 - 09/04/11 at 02:14:46

Thank you Joan!!! It's nice to hear about peoples experiences with Enbrel...all we have is what the docs tell us n that awful commercial that ends with "side effects can be fatal"!

It's such a hard decision and it's really hard when someone is dangling relief in front of you...i would cut off my arm if would help but I don't want to make a mistake. My husband reacts when the wind changes direction and his middle name should be "side effect"...but it is a drug that's been around for a long time. Even trying to educate myself on IL13 is like ..Hugh...I'm reading the words but really don't understand a thing!!!

) so when NIH suggested it I was like okay get back to you in 6months...and then Castells was like get in there next week and start them NOW! kind of threw me off...It's like deciding to get on the roller coaster or not...actually i think I'm already on the roller coaster!!!

Anyway I'm going to talk to Dr Wilson at NIH on tuesday and will try to understand exactly what were getting ourselves into!

Do you think acupuncture can lower il13 or when this is disregulated there's no way of fixing using alternative methods?

Thanks again for your input, its comforting!!!
Patricia

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Susan

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Re: phone call with Dr. Castells?
Reply #7 - 09/04/11 at 16:14:33

Hi Patricia,

I'm really glad you got some input from Dr. Castells, but I sure can understand why you would be hesitating about adding more drugs. I went 25 years without even an aspirin, so when I first became sick, I was very much against taking any drugs.

Unfortunately, all my natural treatments failed me. Homeopathy didn't touch it, and acupuncture only worked as long as I kept doing it every week. I couldn't afford the weekly treatments, and it was obvious I wasn't cured if I had to keep doing it. But we are talking about multiple long term infections here. I think the acupuncture would help with the symptoms, or consequences of infection, but it couldn't cure the infections.

In your husband's case, it may be very different. If there is no infectious cause for the symptoms then maybe it is really worth trying something like acupuncture. If you do decide to try, be sure to look for someone really good. It can make a real difference if you stick with it!

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Susan

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Diagnosed with Mastocytosis August 2011

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Patricia

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Re: phone call with Dr. Castells?
Reply #8 - 09/05/11 at 01:18:33

Thank you Susan! I always appreciate your input...

It's just hard and I'm a little bummed because he's had such a good month, he seems really stable, an issues we've attacked them quickly with success, he's starting to live a little again and we go to NIH with our daughters and decided to bring Fabio just for a quick hello w/Dr Wilson and this whole IL13- TNF stuff pops up. We discussed Enbrel and I came home and saw the commercial and was like no thanks!

Trying to research IL13 -TNF stuff is even more complex confusing and so abstract that I'm drained trying to grasp cellular medical concepts and terminology! This whols army in my immune system...what army, in my body???

I didn't nick name Dr Castells the Devil Wears Prada of Mast Cells for nothing...she was just like stop waisting time...doing nothing has side effects! That this is the best medicine it's direct cell therapy and we should go into NIH next week and start! Gulp...I need like 3-6 months to work up to getting my husband injections or infusions.

And the more I learn about il13-TNF it's not good and you just feel like you've been punched once again in the stomach. It's not bad enough that a mast cell disorder is a cruel disease and can beat you down and put you into shock within minutes and in my gut I always knew there was some auto immune stuff going on so it shouldnt surprise me. It just sucks when it's there in black and white.

But see I have to stay positive and think thank god we finally know and Ill try my hardest to try and keep him from getting worse. Wether through acupuncture or immune system modulators or whatever...it has to be better to know!

Sorry if I'm venting and being long winded but I know all of you understand!!! Thanks for listening and huge hugs to you all!
Happy Labor Day!

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Patricia

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Joan

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Re: phone call with Dr. Castells?
Reply #9 - 09/05/11 at 06:00:14

Hi Patricia,

I know what you mean. I know of two people who have read immunology textbooks to try to understand what's going on.

I don't know much about accupuncture, so can't comment on that, except that it doesn't seem like it would be curative.

Have you found the results of the clinical trials on Enbrel? Xolair? If not, it will tell you what percent of patients had which side effects. They have to report every single problem of any type that patients had while on it, even if it was just one of hundreds. Of course it's like any treatment, risk vs. benefits. I would definitely consult with the company that makes it and ask them all of your questions. Of course, you will have to be very careful about infection. I would recommend he have a dental check-up and any dental work needed before starting. If he might have a sinus or other infection, that should be cleared up before.

I would want to know if it's possible to start out on a low dose and increase over time, if they can administer the first dose in the hospital and let him wait there 24 hours to see about reactions, etc.

Joan

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Joan

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Patricia

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Re: phone call with Dr. Castells?
Reply #10 - 09/05/11 at 06:09:15

Thank you Joan it means a lot, and good idea about dental work.

Dr Castells said side effects have only happened to very few people and everything has side effects...TB, Kidney Infection, Lymphoma...we have great drugs to treat the side effects...gulp again!

One concern is that my husband gets infections and it takes him twice as long to recover. Oh and heres another beauty...my daughters good friend was diagnosed with Mono and Strep and was at school with her on friday and at my house 10 days ago...thats all I need to worry about is epstein barr!!!

the xolair side effects are worse and its in about 30 % of patients... I believe the enbrel is a less percentage its been around since 1998.

Thanks so much for your suggestions!!!

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Patricia

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Patricia Guiding Light Offline Posts: 164 Washington, dc	Re: phone call with Dr. Castells? Reply #11 - 09/05/11 at 06:16:31 Oh she also said that the IL13 and IL4 can make IgE's and last month my husbands were 8,000 his STAT3 gene was neg for Hyper IgE syndrome so the culprit could also be the IL13
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Joan

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Re: phone call with Dr. Castells?
Reply #12 - 09/05/11 at 11:09:34

This is a real long shot, but in the newspaper today they mentioned minocycline being helpful for about 50 percent of RA patients who try it. Apparently it's an old treatment for it that's being re-visited. It's probably been tried, and I don't know whether or not it would have a positive effect, but I do know that I was put on it for 3 months, and I did think I felt better. Don't know why, and don't know what mechanism causes it to work on some people. I'm sure there's a lot about it on the Internet.

One possible drawback is that doxycycline can cause mast cell degranulation in some people, so it has to be watched closely.

One other thought would be to ask for names of peole who take the drugs, and talk to them. It might give you some more information.

Joan

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Joan

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Patricia

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Re: phone call with Dr. Castells?
Reply #13 - 09/05/11 at 15:02:14

Thats funny that you mention that because theres someone else on this forum that said it helps their masto symptoms. Mary shaman who wrote a really good book living well with autoimmune disorders wrote that she had beginning stages of RA and used antibiotics for a year and was able to hold it off. I believe in her case it was an underlying or stealth like bacteria.

I'm going to NIH and this would be a good question why not antibiotic therapy but maybe it's because they know it's his IL13...I'm going to try and get as many details as possible and if we can start slow and they can have him spend the night there. I don't need another all nighter where I'm watching my husband take every breath!

He needs a flu vaccine, dental work and anything else to make sure he doesn't have an infection anywhere!

I was on the Enbrel patient forum and wow sounds like a wonder drug, people where raving about how amazing it is...sounds too easy for me.
Thanks so much for your ideas and support

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Patricia

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Joan FORUM ADVISOR Offline Posts: 1502 Colorado	Re: phone call with Dr. Castells? Reply #14 - 09/05/11 at 19:19:46 Just hoping to hear sometime soon that you're all doing much better!
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