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Depression (Read 6912 times)
MastoGem
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Depression
08/08/11 at 08:47:18
 
I'm new so forgive me if I'm missing something, but I'm surprised I don't see depression listed anywhere here under symptoms.  MASTO causes inflammation, no?  And depression is an inflammatory condition as proven from recent meta analysis, right?

http://www.biopsychiatry.com/immunesystem/index.html

Maybe I just missed other posts about this.  I can't be the only person curious about this or suffering from this.  

Is anyone taking anti-cytokine drugs for depression or MASTO?
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"People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within." — EKR
 
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kimtg68
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Re: Depression
Reply #1 - 08/08/11 at 09:58:53
 
MastoGem-I don't want to speak for others by name but I can tell you that YES many of us go through/suffer from depression. Up in the right corner of the forum page you can type in the word depression or depressed and search the different posts discussing this.
My personal opinion in that depression is EXTREMEMLY common for multiple reasons. Some because of a chemical imbalance due to the misbehaved mast cells and also to add to it the constant run around most experience in trying to obtain a diagnosis for the awful things our bodies go through and getting no where with doctors. Not to mention feeling robbed of the quality of life we wish we had. I do know I have heard many people talk about being on anxiety meds. This is something I want to check out. I am not currently on anything for depression or anxiety but I should be. I would guess that MOST of us going through this and those going through any type of chronic health issues experience depression. So please don't feel alone and always feel comfortable venting here! We are all one big, caring family here and will always so our best to comfort and help you!
I'm sure others will respond to your question.
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Riverwn
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Re: Depression
Reply #2 - 08/08/11 at 11:58:26
 
Yes most of us have issues with depression but we strive to gain enough control of our lives so that it becomes a lesser issue and more positive Smiley The 2 most common meds for masto depression are Doxepin, starting at 25 mg and Wellbutrin. There are things to consider with both of them .

Doxepin does really well with people who can take it--it effects the Seritonin level and most of us have problems maintaining a normal Seritonin level--the only way to know is to try it for a few days and see. You either do really good on it (taken at night before sleep) or you stop taking it pretty quickly. It gave me nightmares but alot of people do good on it--Im not a good example is what Im trying to say. The Wellbutrin has some other properties and reasons that we do well on it, like a more stable less reacting mode, lesser pain level, etc.

I take pain pills for neuro bone pain and Im a pretty positive person usually. I have had my bouts with negativity dealing with this disease but Im pretty good right now. The brain fog doesnt help (Im on Vistaril for that 25 mg twice a day)

also Im on prednisone frequently. Im due to come off of it again in 2 days and ive been on it more than off of it, the last year and a half due to my frequent anaphylaxis. A side effect of that long term use, is depression, too... but it saves my life when I need it.

I read your stpry in the other thread and I can feel for you. I see youre on GastroCrom but what other antihistamines are you taking?? You would need both h1 and h2 blockers, luekotriene blockers like Singulair or Zyflo, possibly proton pump inhibitor like Prilosec and mast cell stabilizers. The common thread of thinking by DRs who treat mast cell disorders is, people who really have a mast cell problem will respond positively to antihistamines.. those who dont respond well to it have something else going on.

Heres hoping you find some answers soon and start feeling much better about your life--I can say that we have all walked in your shoes and know what youre dealing with--and we will all be here to "have your back".. we believe you--you arent alone anymore!
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Ramona
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kimtg68
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Re: Depression
Reply #3 - 08/09/11 at 02:45:46
 
Ramona- I'm curious about your mention of neuro bone pain. What is that? I too have MAJOR bone pain and as you know I am not yet diagnosed so I'm gathering as much info as I can that is similar to myself. Would you mind sharing?
Kim
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Riverwn
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Re: Depression
Reply #4 - 08/09/11 at 05:23:23
 
Sure Kim Smiley

I have pain, starting in my lower back, down both hips and legs, down to the ankle area. Now I have so many reasons that it could be other types of pain but I think its the masto bone pain. Mast cells are created in bone marrow and any changes in the marrow, result in some pretty bad pain. I had this pain before I even knew that I have masto. Its under control now (usually) but it would get so bad that it would wake me up because I was crying in my sleep (sucked LOL)...

I  also have restless leg syndrome, sciatica (nerve going down the spine that splits and goes down both legs), joint pain all over (I had a diagnosis of fibromyalgia before the masto but I think its all masto with me, not fibro). I am diabetic also so I have neuropathy (the bottom of both feet go numb).

Mast cells also create neuro pain because they are in every part of the body and stimulate inflammation. Plus mast cells are necessary for communication between cells--especially in the brain (hence brain fog). They can cause 'shorts' in the electrical part of cells communicating which results in us being confused and our pain levels increasing, among other things.

Ive learned one really important thing to go with all of this--if you are not in good enough control med wise (of mast symptoms) your pain level will also be worse. The more your symptoms are well medicated, the less pain you will have and the pain you do have will be easier to control with less medication.

I take vistaril 25 mg twice a day for many reasons; helps IC spasms stop, helps clear brain fog, helps control mast cells in general for less reacting and it seems to help keep my pain under control because of all the other reasons. I also take a pain pill--very carefully cause it can cause mast cells to degrade.

Also since I started Allegra twice a day it has made a huge difference in how I feel too.. I hope some of this helps you!!
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Ramona
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kimtg68
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Re: Depression
Reply #5 - 08/09/11 at 09:44:41
 
Thank you so much for sharing and explaining all that. My bone pain differs from day to day or week to week. I can have in in my fingers, wrists, (occasionally) elbows and shoulders, HIPS( so badly at times it hurts to walk), the long bones of my legs, knees, ankles and feet. As time goes on it gets harder to step onto the floor early in the morning when getting out of bed and walk (huh...more like hobble/limp) to the bathroom. Some days the pain comes and goes and other days it settles in for a long visit and will remain a day or several days.
What I didn't understand is the role of mast cells in the bones. SO having the bone pain doesn't mean it's spreading or perhaps worse then, say, someone with just skin reactions right?
Gotta run, will right more later. Sorry!
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Re: Depression
Reply #6 - 08/09/11 at 12:16:38
 
Sorry for the abrupt sign off. My 21 (soon to be 22) year old son had open heart surgery and can't drive for six weeks so I am his taxi to his appts and so forth. He had just finished an appt and was ready to go.

What I was saying was that I've been worried that because my bone/joint pain has gotten so bad over the past almost two years now that I have worried, like with cancer, that it meant it was spreading or something. NOW I am wondering if it's just a matter of going undiagnosed so long that once I DO get a diagnosis and start getting treated properly that many of the symptoms will ease tremendously. What confuses me is hearing others who HAVE been diagnosed but still struggle with their symptoms. Am I making sense to anyone else. I think I may be sliding into the brain fog phase tonight. Better sign off!
Thanks for reading and sharing.
Kim
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Patricia
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Re: Depression
Reply #7 - 08/09/11 at 12:29:48
 
YESSS!!!! how can one not get depressed, this disease can be life changing and impossible to deal with! We have noticed that when my husbands gets reactive, an infection or somethings about to happen he gets really depressed, hopeless and totally down. I try to tell him that its not him, the masto monster is trying to reemerge, I make him rest and up his meds. I def feel like its inflammation in the brain thats getting through and causes him to get depressed.
Hes normally a happy and positive person and when he starts to go the other way I know somethings going on.

He has been taking 25mg of doxepin and he did well with it except the dx at NIH say its not a high enough dose to have anti depressive effects. We just went to NIH last week and they said his IL 13 cytokine was elevated and prescribed Wellbutrin because it blocks the TNF that causes inflammation created by the elevated IL 13. We just started it yesterday and no side effects so far.

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Re: Depression
Reply #8 - 08/09/11 at 12:49:25
 
oh which anti cytokine medication are  you talking about?
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Patricia
 
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Re: Depression
Reply #9 - 08/10/11 at 03:27:54
 
Patricia,

As for the name of an actual "anti-cytokine" drug - I'm really new and still pretty clueless, so I caution you to remember that -  but I read about a med called "Canakinumab" that seems to be this kind of drug.  Here's a couple of links that discuss it working for gout patients and I just can't help but be curious if it would work for us.  

http://www.medscape.com/viewarticle/731708

http://www.internalmedicinenews.com/specialty-focus/pain/single-article-page/can...

Patricia, I was so touched to hear the way you are with your husband.  How wonderful that he was your support and understanding!!
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"People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within." — EKR
 
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Patricia
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Re: Depression
Reply #10 - 08/10/11 at 08:46:46
 
Interesting the link was for sufferers of gout attacks and my father in law (tryptase 55, IgE 150, ANA 1.4) suffers from frequent attacks. The attacks always follow a stressful situation like if he has to travel or if he gets run down.We just found out that he too has elevated levels of IL 13 which cause inflammation.

I too am new and clueless...sometimes Ill be talking to these researchers and I tell them "I hear you speaking English but I have no idea what you're saying!!!" or the time one was saying that his cells werent communicating... "what do you mean not communicating??? are they not returning text messages, not responding to voice mails"...its amazing what the body can do automatically and its awful what happens to the body when it stops doing things automatically!

For months I thought my husband was dying and I was so afraid they were going to make a mistake or misinterpret something. At times i felt like I had post traumatic stress and would have recurrent dreams of me running down hospital corridors chasing after doctors trying to get them to read the labs I was clutching in my hands!!! He has gotten much better, is more stable and trying to learn and understand as muh as possible.

We try and have a sense of humor about it, enjoy the little things and blame everything on mast cells! Smiley

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Re: Depression
Reply #11 - 08/11/11 at 02:57:17
 
Patrica:
I'm going to steal this thread for a minute. As my fellow office workers miss days with a real bad intestinal flu going around. I'm at work yet another day, missing 1 day of work in 10 years due to illness. I'm tired of being superman when it comes to my immune system. All us supermen & women pay for this status by symptoms that mortals can't even imagine handling. Some us chronic pain because we can't even take aspirin, some stomach or sensory issues that defy the imagination, & worst of all those us whose lives are threatened with shock & ER room visits. Our bodies are so unique that studies like being done by Dr V at MD Anderson Cancer Center, wonder if they can harness our symptoms to work miracles. But in the mean time we throw meds at our symptoms, we often go to a multitued of doctors before if we get lucky one realizes what we have, we are thought to be either crazy or at best ecentric by most of the mortals around us. If we are lucky our families actually believe us. We have to control our emotions as they can be triggers. How could we not suffer from depression. Some of us are disabled forever but none us  haven't  had to face the total change of who we are & what we thought we would be & wish we were just regular mortals. Sorry for the downer post just having a bad patch.
MikeV
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Re: Depression
Reply #12 - 08/11/11 at 05:22:42
 
Mike
I can totally relate to your post.  I have worked through all of this and with IC, but I do have a mostly desk type job thank goodness.  Yesterday I stupidly ate something at a work cafeteria and that afternoon while sitting at my computer here came the brain fog blues as I call them.  I am sure I sat at my computer for a few minutes semi-glazed.  Summer is always tough for me as I am very heat sensitive.  I guess I didn't realize the expression on my face most of the time, but the other day one of my co-workers stuck his head in my office and asked if I was okay that I had seemed kind of down lately....I appreciated him asking, but I guess I thought I was presenting a good face (I am not depressed, just in PAIN!).  Come Fall, I will be better with symtpoms here and there...so I know this level of pain is temporary and that really helps me hang on until cooler weather.  Missing only 1 day of work IS pretty superhuman.  Also, identifying who should know at work and who doesn't need to know are important issues.  I have a few trustworthy colleagues who know, but others don't.
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Re: Depression
Reply #13 - 08/11/11 at 06:06:33
 
Tex:
You are lucky mine is always there is some degree. My skin is the effected organ. I've tried to explain it to my close friends & coworkers but they really can't grasp it. As a true leaker w/mutation that's the way it is. I'm lucky that I found gastrocrom & that I could take tramadol & liquid tylonal so they help . At first mine was so bad the people at work thought I was on speed I was so jumpy. Couldn't touch a metal door without discharging myself first, so have come a long way from there. But have never shocked once, to me that's scarier. Not knowing. Good luck when weather cools.
MikeV
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Re: Depression
Reply #14 - 08/11/11 at 06:26:39
 
Thanks!  My neuropathic pain will def be better then.  I should say the IC never goes away, but is so much better than when I was first ill...could barely get out of bed and walked with a limp from the pain.  Lost about 30 pounds, etc., it was pretty bad.  But, through meds and knowing triggers, I am so much better.  My main nemesis is summer!  Arrrg..the neuropathic pain goes crazzzy and that is on antihist and lyrica!  I always do have the neuro pain, but it gets way better in the cool...if i could only live in Antartica  Cheesy.  I hear you about improving from where we first started...I really thought my work life was done, but turns out I was able to weather it.  Superwoman...umm I kinda like that, but spandex would not be my friend.
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