The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Adrenal fatigue/MCAS/hydrocortisone intolerance

Discussion in 'Adrenal Dysfunction' started by Jasper80, Aug 26, 2017.

  1. Jasper80

    Jasper80

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    hello World,

    I'm a very Bad vicious Circle and have no ideal How to get out. Maybe some of you have any idea.

    I have a very Rough combination from MCAS, several Adrenal Fartigue and mitochondria dysfunction, which all together Ende up in CFS and MCS.

    Now I ve tried hydrocortison which gave me adverse effects (as nearly always). The good effect of the hydrocortison: energy, clearer mind, my muscles started to relax and so my spine segments stoped blockading everyday (which they do since 20 years. Because the muscles have to less energy to relax properly), I could sleep and so on.

    On the other hand my mastcells went crazy and after 2-3 weeks and an additional flu I nearly got an anaphylactic shock. So I had to stop the cortison and now I'm bed bound.

    I'm fighting since I'm 17. now I'm 37 and it took me 17 years to understand what s going on. Unfortunately it's to late now. It feels like.

    Does anyone has any ideas or experience with mastcellactivationsyndrom/disorder and taking or not tolerating cortison? Is it the cortison ? Is it the fillers ?

    Thank you so much for your help and ideas.

    Jasper
     
    Last edited by a moderator: Aug 26, 2017
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  2. bspg

    bspg Plant Queen

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    I suffer from MCAS but was just diagnosed so my knowledge is limited. I don't know anything about how hydrocortisone may affect MCAS.

    Are you taking a mast cell stabilizer? Or any antihistamines?

    Also, for what it's worth, there are many people on PR who suffer from MCAS and there's even a forum dedicated to mast cell issues. It can be found here: http://forums.phoenixrising.me/index.php?forums/mast-cell-disorders-mastocytosis.126/

    Tagging @Gingergrrl @Misfit Toy and @Strawberry in case they have any knowledge to share.
     
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  3. Jasper80

    Jasper80

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    Hy,

    Unfortunately I didn't tolerate any stabilizer yet. I hope I'll find something in the future.

    Thank you very much
     
    Last edited by a moderator: Aug 27, 2017
  4. Gingergrrl

    Gingergrrl Senior Member

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    I have been taking Cortef (hydrocortisone) for over two years and my doctor started me on it mid 2015 in the hopes that it would reduce the allergic/anaphylactic reactions that I was having to food at that time. I take 15 mg per day (10 mg AM and 5 mg afternoon) and the dose has never changed for me. My two attempts to taper off (not recently) resulted in me being allergic to all food again within one week.

    I did not have an MCAS specialist at the time that I started Cortef, and we were desperate to find anything that would help, so I fully understand why I was started on it but now wish that I could safely taper off of it. The problem, according to my Endo who monitors my thyroid and other hormones, is that I am now in secondary adrenal insufficiency from the Cortef and tapering off of it could lead to an adrenal crisis and would be very dangerous. So as much as my Endo hates me being on Cortef, even he has advised that I need to stay on it.

    It has caused weight gain which is the #1 reason that I want to stop it, in addition to other long-term negative effects that it can cause (like diabetes, osteoporosis, etc). My Endo said if we ever attempted a taper it would take about a full year and reduce by a sliver of a pill once per week. My main doctor and MCAS doctor, however, prefer that I do not mess with any part of my regime right now and I understand their perspective, too.

    So, long story short, if I had found my MCAS doctor a few months earlier in 2015 and learned about Ketotefin and Atarax (which saved me at that time), and later about IVIG, I believe that I could have avoided ever being put on Cortef. But what's done is done and I cannot go back in time. I do plan to eventually taper off of it and ideally my doctors will be in agreement!

    In re: to your question about the fillers, I take the actual brand "Cortef" which is dye-free vs. several generics that had dyes and fillers that I could have reacted to. But with all meds, it is possible to react to a filler or dye vs. the active ingredient itself. Hope this helps.
     
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  5. Jasper80

    Jasper80

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    Hello Gingergrrl,

    Thank you so much for sharing your story with me. Right now everything may be helpful. Unfortunately I don't have a Mcas doctor here in Germany and my attempt with Ketotifen didn't work out. I'm not sure if it is the liver itself or the mastcells, which for sure are influenced by the liver and impaired detox.

    If I could stabilize my mastcells, my adrenals would possibly recover on their own, but with all those inflammation and mastcells Problems, they have to fight like wild everyday. I'd give a fortune for a mastcellstabiliser I could tolerate.

    It's so complicated and hard to tell what came first, chicken or egg?

    Greetings jasper
     
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  6. NotThisGuy

    NotThisGuy Senior Member

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    I'm in the same place. Liver impaired and severe MCAS.
    I was there and actually got better through mehtylation. But something there stopped working and now I'm at the beginning.
    Have u done anything related to methylation?
    Since your liver seems to be impaired it might be the only way out.

    Also there is this product:

    https://www.heilpilze-berlin.de/Aga...lpilz-/vitalpilze-extrakt-bio/60-Kapseln.html

    That mushroom is supposed to inhibit mast cells quite strong. Haven't tested it yet.

    Another possibilty what helps with mast cells and histamines:

    Vit. C (really great if u can tolerate it)
    quercetine, rutin, luteolin, mangosteen (all diuretics so I cant take them, but they definitely stop mast attacks)

    and of course Vitamin D.
     
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  7. Grigor

    Grigor Senior Member

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    I haven't had any anaphylaxis attack but the extreme sensitivity is really annoying. Also for hydrocortisone but all meds. It's driving me nuts. MCAS could be the issue...
     
  8. Jasper80

    Jasper80

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    @NotThisGuy

    Hey,
    Yes I ve tried a lot for methylation and had my success with it too. But honestly, without a proper guidance it seems impossible to be successful on the Longrun. Every vitamin i take or what ever I do with methylation is either to weak or to strong, or something is still missing. I'm sure methylation is a big key, but I cannot imagine staying in this stadium for months with ongoing trial and error till it gets better (maybe).

    I've done a lot trial and error (and reading. As you guys do), but now my adrenals are in such a bad shape, than a) my Mcas and allergies go nuts, because they don't have any competitioner (cortisol) b) I'm not able to to anything anymore because of my adrenals (being anxious to get morbus Addison. It feels very very close). And every over or undermethylation trial weekens the adrenals more.

    So without helping the adrenals in a good way, I don't know how to change the other roots like Mcas, impaired liver and methylation, which are the roots for the adrenal fartigue. I feels like the end of the road right now. :(

    Thank you for the hint with the mushroom. I will have a look.
    The others I can't take either, because of salycilates I guess.

    @Grigor

    Hey,

    Yes like me. It's really a horror trip. I think it is the combination of impaired liver, methylation, Mcas and the adrenals. It took me 20 years to really know what's going on. An 17 with tons of wrong threatments which made it worse and worse.

    It's a vicious cyrcle, that has to be stopped somehow. 1) cortison to strengthen the adrenals and to be strong enough to care about methylation (didn't work out because of the liver) 2) something, that really stops this Mcas (haven't found anything yet) or a wonder.
     
  9. NotThisGuy

    NotThisGuy Senior Member

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    yeah I'm pretty much in the same place like you.
    Feels like the end of the road and I also can't risk to experiment anymore...

    There were two things that helped me very much, but as soon as I felt better I overdid it and was in a worse place than before.

    1. sun light -> was a great help for MCAS
    2. keeping window 24/7 open to avoid any mold.

    I whis I haven't overdone it after those 2 things that helped me so much....
     
  10. Grigor

    Grigor Senior Member

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    I'm a bit scared of hydrocortisone to be honest.
     
  11. Jasper80

    Jasper80

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    I'm quite scared about nearly everything to take. There is no chance that I could tolerate hydrocortison anymore. Mcas and all that other stuff is just... pfff
     
  12. bspg

    bspg Plant Queen

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    @Jasper80 have you tried NeuroProtek or any of the flavinoids in it (Luteolin, Quercetin, or Rutin)? These come from plants and are supposed to be good at stabilizing mast cells. They might work better for you since you have not tolerated many pharmaceuticals.

    http://algonot.com/product/neuroprotek/

    Also, my doctor wants me to start on hydrocortisone now for low cortisol and after reading this thread (and a few others), I'm really nervous. I don't want to make myself worse or go through hell trying to taper. How do I know if it's worth it?
     
  13. Jasper80

    Jasper80

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    Hy bspg,

    I've tried quercentin as far as I can remember. Unfortunately I don' t tolerate salycilates. And quercentin etc. are plant based. I' be read about NeuroProtek and even the low Phenol version is made with olive oil, which peaople woth salycilate intolerance can't take :(

    We are all different. I know some people with Mcas whir take hydrocortison and do well with it. And I know some, including me, who don't. Give it a try. If you you don't tolerate it, you have some other options left for the adrenals. Adrenal gland, pregneolon etc. I've recognized that I can't take it after the first pill. It gave me energy and mastcellproblems at the same time. What made it worse is, that I didn't stop (I thought it's was so,etching good at first).

    Greets jasper
     
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