Help Again

[Razzle Dazzle Brazell]

Hey guys your opinion: My doctor is considering putting me on prednisone to treat my overactive immune system. I am scared to death to take it again because it made me very ill last time. Tachycardia and extreme restlessness and unresting mind, prednisone made me stay awake for days and landed me in a mental hospital with hallucinations. Why? Is there something else that i can take to calm my haywire immune system?

[bartfull]

You have DH, don't you? If I am correct, that is the only reason I would even consider going on prednisone. I understand the itching can drive one crazy, and in that case it might be worth it.

But my doctor and his nutritionist told me that MY immune system was in hyperdrive too. I was reacting to everything, not just grains. I couldn't eat ANY fruit except bananas, no veggies except broccoli and cauliflower worked for me. I was almost afraid to eat.

It took almost a year on a VERY limited diet, along with some vitamins before things improved. I have been able to add a few foods back just recently. I would like to try adding a few more, but I'm going to wait a few months. I am not going to take a chance on anything and ruin my newly found good health.

So if the DH is too much to handle, maybe prednisone is the way to go. But if not, I would just give it some more time. I know that's hard to hear, but believe me, this past year just flew by.

I hope you're feeling better soon.

[GF Lover]

Hey guys your opinion: My doctor is considering putting me on prednisone to treat my overactive immune system. I am scared to death to take it again because it made me very ill last time. Tachycardia and extreme restlessness and unresting mind, prednisone made me stay awake for days and landed me in a mental hospital with hallucinations. Why? Is there something else that i can take to calm my haywire immune system?

I've gone the steroid route myself for controlling autoimmune disorders. You can try methotrexate, Dexomethosone. And I'm sure there are afew more. Take the smallest amount possible to get the desired effect. I hated every pill I had to take and for me the best outcome was not enough for me to confine for over a year. I just stopped mine in Feb this year. But also since going gluten free alot of the inflammation that the steroids are supposed to control has greatly reduced, so that is good for me, no steroids, no inflammation. Good luck with water your going thru. Be well.

[roxieb73]

Not a lot of options with steroids. I wouldn't go back on it after that kind of a response. Ask about Dexamethasone.

[Razzle Dazzle Brazell]

You have DH, don't you? If I am correct, that is the only reason I would even consider going on prednisone. I understand the itching can drive one crazy, and in that case it might be worth it.

But my doctor and his nutritionist told me that MY immune system was in hyperdrive too. I was reacting to everything, not just grains. I couldn't eat ANY fruit except bananas, no veggies except broccoli and cauliflower worked for me. I was almost afraid to eat.

It took almost a year on a VERY limited diet, along with some vitamins before things improved. I have been able to add a few foods back just recently. I would like to try adding a few more, but I'm going to wait a few months. I am not going to take a chance on anything and ruin my newly found good health.

So if the DH is too much to handle, maybe prednisone is the way to go. But if not, I would just give it some more time. I know that's hard to hear, but believe me, this past year just flew by.

I hope you're feeling better soon.

Thanks for sharing your own experience. That is very encouraging. I was hoping things would settle down but i was never this haywire until porpuseful daily glutening for the celiac test. I just dont know what is safe myself as if gluten free isnt hard enough already. I guess i need to just eat like a bird and slowly introduce foods and see what my body likes and what it doesnt like. I do have several IGE allergies: oats, ragweed, oak, walnut, and a bunch of other pollens im allergic too. Dairy goods make me bloat too. The biggest problem for dealing with all this is that i get sooo very hungry it is crazy how hungry i am. Gluten diet will do that to me and idk how long until that calms down. This is all causing bad anxiety and i am depressed

Today i have taken a huge downswing and feel like i just want to give up, like im wandering nowhere in life and will never find my way out. I havent felt that way in a long time. I know those feelings will pass though so im trying to hang in there

[Razzle Dazzle Brazell]

I've gone the steroid route myself for controlling autoimmune disorders. You can try methotrexate, Dexomethosone. And I'm sure there are afew more. Take the smallest amount possible to get the desired effect. I hated every pill I had to take and for me the best outcome was not enough for me to confine for over a year. I just stopped mine in Feb this year. But also since going gluten free alot of the inflammation that the steroids are supposed to control has greatly reduced, so that is good for me, no steroids, no inflammation. Good luck with water your going thru. Be well.

Thank you. I will ask my doctor about those and see what he says. I really hope i can get back on the right path with that little boost

[Razzle Dazzle Brazell]

Not a lot of options with steroids. I wouldn't go back on it after that kind of a response. Ask about Dexamethasone.

I know. I honestly would rather die than go through that again. I wouldnt wish it on hitler. It was really horrible. I was awake but it was like being in a night terror everyday which was worsened by my lack of a memory and a severe UTI infection with I.C. (that pain and i didnt have the ability to express it as i was doped up) They put me on resperidone and it took months to wing off of it and months to recover afterwards. I told him no the moment he mentioned prednisone lol.

I will only take a small dose and it definitely has to be something beside prednisone.

[Skylark]

Look into low dose naltrexone. It didn't do much for me but some people find it really helpful.

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[Razzle Dazzle Brazell]

Look into low dose naltrexone. It didn't do much for me but some people find it really helpful.

Open Original Shared Link

Okay i will mention it to my doctor most definitely will ad it to the list of potentials. Thx Skylark

[Marilyn R]

Hi Razzle,

I've only had steroid ointments, never have taken prednisone, but have 2 girlfriends who road that roller horror coaster.

I keep xanex .5 mg on hand. I don't take it very often, a prescription of 30 pills will last me 4 months or longer. I cut them in half when my skin is crawling, take a whole pill if something major happened. My friend says Ativan is better but xanex generic works so I never tried the

Atovan. I have a hard time with meds. Most OTC stuff makes me break out in hives, has for years. Benadryl makes me climb the walls! In case you aren't familiar with that drug, it's an anti-anxiety drug.

I'm not saying that will work for you, but it's been a lifesafer for me.

GL!

[~**caselynn**~]

I've only has prednisone a couple times, but I loved it! It made me feel a thousand times better and I had more energy than super woman lol the things I accomplished on it was awesome! But the highest point was how awesome I felt, just amazing...but I didn't get any sleep...that's a downfall.

[ravenwoodglass]

Hey guys your opinion: My doctor is considering putting me on prednisone to treat my overactive immune system. I am scared to death to take it again because it made me very ill last time. Tachycardia and extreme restlessness and unresting mind, prednisone made me stay awake for days and landed me in a mental hospital with hallucinations. Why? Is there something else that i can take to calm my haywire immune system?

If you can be patient (I know that is hard) being on the diet will calm down your immune system. Your immune system is in hyperdrive because of the antibodies and once those resolve you will be feeling a lot better.

I was allergic to 98 out of 99 things my doctor tested me for pre-diagnosis and that was one of the biggest clues my doctor had that despite my false negative tests I was celiac.

With the reaction you had the last time you took the drug I am surprised your doctor is even suggesting it.

edit:

I just noticed you mention being on gluten again for testing. Are you still on it? If so why as you are so clearly reacting badly. If you have recently stopped the challenge it will take some time for the reaction to pass but it will. Go with whole foods to satisfy the constant hunger. That will pass also as it is likely your bodies need for nutrients that is causing it. It is common for those of us who are newly diagnosed.

[squirmingitch]

Razzle gal, IMHO Ravenwood makes a lot of sense. I had been on Dexamethasone when i was misdiagnosed as hives for my dh. THEN, later I got an epidural in my spine & the doc gave me Dexamethasone (Dex). Effed me up real good! He didn't tell me he was going to use Dex or I would have told him to back off Jack!

Anyhow, even when I was on the dex pills --- I even cut them down to 1/8th & I was bouncing off the walls big time. Awake for 7 days & 7 nights straight. Yep, I felt like Superwoman only there's no place in this world for Superwoman with an attitude & I mean a BIG attitude! MEAN, MEAN, MEAN!

Everyone is different so I'm just telling you how it affected me. I have a girlfriend who gets bad poison ivy & her doc gives her a cocktail shot containing Dex & it does the same thing to her as me. Oh yeah, it gives both of us "D". She cleans the house spic & span at 3 a.m.

[Razzle Dazzle Brazell]

If you can be patient (I know that is hard) being on the diet will calm down your immune system. Your immune system is in hyperdrive because of the antibodies and once those resolve you will be feeling a lot better.

I was allergic to 98 out of 99 things my doctor tested me for pre-diagnosis and that was one of the biggest clues my doctor had that despite my false negative tests I was celiac.

With the reaction you had the last time you took the drug I am surprised your doctor is even suggesting it.

edit:

I just noticed you mention being on gluten again for testing. Are you still on it? If so why as you are so clearly reacting badly. If you have recently stopped the challenge it will take some time for the reaction to pass but it will. Go with whole foods to satisfy the constant hunger. That will pass also as it is likely your bodies need for nutrients that is causing it. It is common for those of us who are newly diagnosed.

Yes i did stop the gluten challenge. I could not handle it anymore I was in so much pain. I hope my immune system will calm on it's own because money is an issue. I am just concerned that I am getting glutened still because of CC issues. Im in the process of buying my own kitchen supplies right now.

Eating whole foods is a good suggestion. Should i be wary of condiments like mayonnaise? I am trying to increase fats in my diet because my skin shows evidence of a severe lack in natural oils but more fat means a more sluggish system.

[squirmingitch]

If you can stay away from condiments all the better! Mayo has dairy & often soy unless you get Hellman's Canola Oil mayo but it will still have some dairy & further it IS a processed food. If you can't live w/o it then use it very sparingly.

For the fats --- you need those to help process protein. You can stir fry in canola, or olive oil. Use olive oil & vinegar for your salad dressing. Eat nuts = fat + protein.

Another note on the condiments is that unless they're squeeze bottles then if anyone sticks a gluten knife in it then you have cc in the mayo, catsup etc....

[Razzle Dazzle Brazell]

Razzle gal, IMHO Ravenwood makes a lot of sense. I had been on Dexamethasone when i was misdiagnosed as hives for my dh. THEN, later I got an epidural in my spine & the doc gave me Dexamethasone (Dex). Effed me up real good! He didn't tell me he was going to use Dex or I would have told him to back off Jack!

Anyhow, even when I was on the dex pills --- I even cut them down to 1/8th & I was bouncing off the walls big time. Awake for 7 days & 7 nights straight. Yep, I felt like Superwoman only there's no place in this world for Superwoman with an attitude & I mean a BIG attitude! MEAN, MEAN, MEAN!

Everyone is different so I'm just telling you how it affected me. I have a girlfriend who gets bad poison ivy & her doc gives her a cocktail shot containing Dex & it does the same thing to her as me. Oh yeah, it gives both of us "D". She cleans the house spic & span at 3 a.m.

Haha squirmingitch was like the hulk! Yeah it sounds like steroids are something i would ha e to be extremely wary of. I know my liver has to be quite slow because medicines stay in my system a lot longer at minimum effective concentration and takes a while to get out of my system. Then you have meds like these that effect hormones and all that. I may consider natural things like ginseng and licorice.

[Razzle Dazzle Brazell]

I've only has prednisone a couple times, but I loved it! It made me feel a thousand times better and I had more energy than super woman lol the things I accomplished on it was awesome! But the highest point was how awesome I felt, just amazing...but I didn't get any sleep...that's a downfall.

Yep that is pretty much how I felt with it. I guess all steroids are like that idk. The ER doc put me on six for six days, five for five days, four for four days and so on. I think that was just excessive.

[Razzle Dazzle Brazell]

Hi Razzle,

I've only had steroid ointments, never have taken prednisone, but have 2 girlfriends who road that roller horror coaster.

I keep xanex .5 mg on hand. I don't take it very often, a prescription of 30 pills will last me 4 months or longer. I cut them in half when my skin is crawling, take a whole pill if something major happened. My friend says Ativan is better but xanex generic works so I never tried the

Atovan. I have a hard time with meds. Most OTC stuff makes me break out in hives, has for years. Benadryl makes me climb the walls! In case you aren't familiar with that drug, it's an anti-anxiety drug.

I'm not saying that will work for you, but it's been a lifesafer for me.

GL!

To be honest Xanax is a pill that kind of concerns me to take too often. I don't want to develop a dependency. This hydroxyzine helps a lot but I have found myself taking it more and more and I don't want to get addicted. Sometimes it makes me a little slepy and sometimes it wakes me up and that is really annoying; like you I try to take it only to avoid having to take an epipen and go to the emergency room if my symptoms are worsening.

[Marilyn R]

Babe, whole foods don't involve processed mayo.

Sorry, mayo comes later. Hang in there, it gets better.

[Razzle Dazzle Brazell]

If you can stay away from condiments all the better! Mayo has dairy & often soy unless you get Hellman's Canola Oil mayo but it will still have some dairy & further it IS a processed food. If you can't live w/o it then use it very sparingly.

For the fats --- you need those to help process protein. You can stir fry in canola, or olive oil. Use olive oil & vinegar for your salad dressing. Eat nuts = fat + protein.

Another note on the condiments is that unless they're squeeze bottles then if anyone sticks a gluten knife in it then you have cc in the mayo, catsup etc....

Yeah im greedy when it comes to my condiments i guess because i bought my own.

I think I may find it challenging to cut out all condiments. Can i make my own?

Another question kinda off topic kinda not: How can I increase my water intake safely because i choke on thin liquids very badly now and i cant add metamucil to everything? I know it just sucks the fats out of my colon but i have been surviving off of it for a while now to keep my gut from completely stopping up. All that weight on my gut kills my back muscles and makes proper posture impossible. That is not something I need with a degenerated disc in my spine. Thx squirming

[Razzle Dazzle Brazell]

Babe, whole foods don't involve processed mayo.

Sorry, mayo comes later. Hang in there, it gets better.

hehe i guess not. Thx for the encouragement though. I just keep beating myself up saying why did i have to do that gluten challenge....that was so stupid! Anyway at least now i can move forward and never look back until im on my new mountain top :-) it has to be awful high if the valley was so deep and the climb is this steep.

[squirmingitch]

You can make your own mayo but it doesn't have a long shelf life. It's oil & egg & mustard powder I think I remember rightly. You can look for recipes on the recipe forum.

I don't have a clue about the water issue. Hopefully some smart person will come along with an answer for that. Someone must have encountered it before. ..... eat a lot of celery? That's full of water & you get your fiber too!

[Razzle Dazzle Brazell]

You can make your own mayo but it doesn't have a long shelf life. It's oil & egg & mustard powder I think I remember rightly. You can look for recipes on the recipe forum.

I don't have a clue about the water issue. Hopefully some smart person will come along with an answer for that. Someone must have encountered it before. ..... eat a lot of celery? That's full of water & you get your fiber too!

Mmmkay. And dont say sum smart person like ur not cause ya are :-) i happen to be eating celery rigt now. It is one of my staples. Usually goes in stirfries and soup or whatever else. I had run out bougt i just bougt some more. My throat is a lot better today so i kinds doubt my glands swelled and "deflated", if i can use that term, that fast. Dont know but glad to be better. I feel like i am headed the right direction just maybe not on the right track. Thx friend, and everybody else for your input i appreciate it guys!

[squirmingitch]

Glad you're feeling a little better.

Hey, I sure enjoy your humor gal so don't go anywhere on us! (((HUGS)))

[Pac]

Yeah im greedy when it comes to my condiments i guess because i bought my own.

I think I may find it challenging to cut out all condiments. Can i make my own?

Another question kinda off topic kinda not: How can I increase my water intake safely because i choke on thin liquids very badly now and i cant add metamucil to everything? I know it just sucks the fats out of my colon but i have been surviving off of it for a while now to keep my gut from completely stopping up. All that weight on my gut kills my back muscles and makes proper posture impossible. That is not something I need with a degenerated disc in my spine. Thx squirming

Mayo is relatively easy to make - whisk egg yolk (room temperature) with oil, then add lemon juice, salt, mustard seed powder. Add oil and lemon juice slowly - drop by drop.

As for the water issues - I eat lots of iceberg lettuce and I'm pretty sure it has lots of water too (and almost nothing else :-) ). Would eating soups help you?