Yes, I was told to stay away from the topical steriod creams I was using for my eczema. I wonder if the steriods many people with secondary EM have to take for their primary condition may actually be worsening their EM.
I'm on Prednisone for my Crohn's Disease and I'm so much more anxious and temperamental, plus I think the constant pain from the EM keeps me on edge. I feel bad for my husband, even though he says he knows it's the medicine talking, not me.
I've also noticed my EM is much worse on Prednisone, as anyone else had to take this drug, and if so, did it make your EM symptoms worse? I feel like I'm about to lose my mind, ugh....Good luck to each of you....
Judy, talk to your doctor about prednisone to see if there is a substitute that won't stimulate water retention/sodium channel activity. There may be a couple versions of steroids out there that may not stimulate your EM as much.
http://en.wikipedia.org/wiki/Corticosteroid -
"Typical undesired effects of glucocorticoids present quite uniformly as drug-induced Cushing's syndrome. Typical mineralocorticoid side-effects are hypertension (abnormally high blood pressure), hypokalemia (low potassium levels in the blood), hypernatremia (high sodium levels in the blood) without causing peripheral edema, metabolic alkalosis and connective tissue weakness.[7] There may also be impaired wound healing or ulcer formation because of the immunosuppressive effects."
Funny you posted that Iâm getting tested for cushings as Iâve gained heaps of weight, canât loose weight and have cushings body like appearances. Thatâs the main telling signs/symptoms dr sees as cushings.
Don Jones said:
Judy, talk to your doctor about prednisone to see if there is a substitute that wonât stimulate water retention/sodium channel activity. There may be a couple versions of steroids out there that may not stimulate your EM as much.
http://en.wikipedia.org/wiki/Corticosteroid -
âTypical undesired effects of glucocorticoids present quite uniformly as drug-induced Cushingâs syndrome. Typical mineralocorticoid side-effects are hypertension (abnormally high blood pressure), hypokalemia (low potassium levels in the blood), hypernatremia (high sodium levels in the blood) without causing peripheral edema, metabolic alkalosis and connective tissue weakness.[7] There may also be impaired wound healing or ulcer formation because of the immunosuppressive effects.â
Thank you Lauren and Don! I was able to get the Prednisone switched to Cortef today. It's suppose to have less side effects. Does anyone know if this will be better on my EM symptoms? This is a new drug to me, just hoping it continues to help my Crohn's but doesn't hurt my feet like the Prednisone did. Time will tell, I suppose. I'm still very irritable and anxious. I hope these side effects go away soon. I also look like a Pumpkin on toothpicks! I have gained so much weight in my upper body, and my face is the shape of a mushroom:+( I look like a freak, but I'm alive.....
Lauren said:
Funny you posted that I'm getting tested for cushings as I've gained heaps of weight, can't loose weight and have cushings body like appearances. That's the main telling signs/symptoms dr sees as cushings.
Don Jones said:Judy, talk to your doctor about prednisone to see if there is a substitute that won't stimulate water retention/sodium channel activity. There may be a couple versions of steroids out there that may not stimulate your EM as much.
http://en.wikipedia.org/wiki/Corticosteroid -
"Typical undesired effects of glucocorticoids present quite uniformly as drug-induced Cushing's syndrome. Typical mineralocorticoid side-effects are hypertension (abnormally high blood pressure), hypokalemia (low potassium levels in the blood), hypernatremia (high sodium levels in the blood) without causing peripheral edema, metabolic alkalosis and connective tissue weakness.[7] There may also be impaired wound healing or ulcer formation because of the immunosuppressive effects."
Let us know if the change helped.
Good luck!
Judy Hoffpauir said:
Thank you Lauren and Don! I was able to get the Prednisone switched to Cortef today. It's suppose to have less side effects. Does anyone know if this will be better on my EM symptoms? This is a new drug to me, just hoping it continues to help my Crohn's but doesn't hurt my feet like the Prednisone did. Time will tell, I suppose. I'm still very irritable and anxious. I hope these side effects go away soon. I also look like a Pumpkin on toothpicks! I have gained so much weight in my upper body, and my face is the shape of a mushroom:+( I look like a freak, but I'm alive.....
Lauren said:Funny you posted that I'm getting tested for cushings as I've gained heaps of weight, can't loose weight and have cushings body like appearances. That's the main telling signs/symptoms dr sees as cushings.
Don Jones said:Judy, talk to your doctor about prednisone to see if there is a substitute that won't stimulate water retention/sodium channel activity. There may be a couple versions of steroids out there that may not stimulate your EM as much.
http://en.wikipedia.org/wiki/Corticosteroid -
"Typical undesired effects of glucocorticoids present quite uniformly as drug-induced Cushing's syndrome. Typical mineralocorticoid side-effects are hypertension (abnormally high blood pressure), hypokalemia (low potassium levels in the blood), hypernatremia (high sodium levels in the blood) without causing peripheral edema, metabolic alkalosis and connective tissue weakness.[7] There may also be impaired wound healing or ulcer formation because of the immunosuppressive effects."
Judy,
I hope the Cortef does help. When my sister was on the prednisone, it masked the symptoms of her Raynaud's syndrome because it cause vasodilation. I've only ever had hydrocortisone (the generic name for Cortef) IV and in high doses, so it caused my EM to go off the scale. As I was having a massive allergic reaction, it's difficult to say if it was the drug or something else.
I really hope it helps and your EM calms down. It's so hard to keep up the balancing act, taking a drug to help your EM makes another disease worse and what helps the other disease makes your EM complain loudly. Good luck, I hope that you achieve a good balance.
Anxiety!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I didn't know there was another Jane in here! Nice!
I get fussy and emotional, more than mad (just because, I think, I'm in an ancient habit of stuffing anger). It DOES break out sometimes, though.
I think Drs. will gradually get more familiar with EM as it becomes more understood, and the people with it find out what they have. As for PAIN, I think folks without EM think "pain as in a cut or a headache", in other words, pain from other causes that is carried by the nerves to the brain as a message about, say, the cut or whatever. But EM pain is the nerves themselves going nuts. Since nerves are the messengers of pain (and other stuff), imagine when the pain is the messenger itself! Gaaaghck!
And I also think you're a champ, Gary. Bless your heart.
And you, Will, are a character! You'll be a Dr. like House, on tv. AND a great grumpy advocate!
(the other) Jane
Hi Jane,
Sorry- dont know how that got through. Registered 2012. Would you like us to notify the 'other' Jane to change her nick, or would you like to amend yours? Add a 1 or DNA. I always remember you as investigating ANS and epigenetics. Jane DNA sounds amazing lol! ;)
Glad to see you back posting. We missed you. Hope you keeping 'comfortable'
God bless
mads
Yeah, what gets me is how uninformed my neurologist is when he is treating me for small fiber polyneuropathy and I tell him about my increasingly red and burning feet he just looks at me blankly like he never heard of that and I'm some kind of a hypochondriac. He also never heard of the burning going all the way up my legs and into my backside. It hurts to stand, to walk, to sit, and to lie down. These doctors have no idea what this pain feels like. I get angry a lot because I wish I could have just one day when I didn't have pain. I don't even remember what it was like to walk without pain, or sit without pain or sleep without pain. And no offer of anything but gabapentin. I know there's got to be some other meds, but there is not much of a desire shown to be of help. It does make me angry and feeling like a fool when I go to the doctor because they can't see or feel anything. And I am so tired and cranky most of the time, especially at night when I feel I should be loving to my husband but all I want to do is flake out and watch TV then take some xanax and hopefully fall asleep. At least I am grateful to have this forum where I can read and share with others who KNOW and I don't feel so alone and crazy. Thanks for letting me vent and thanks so much for all your research and reaching out. Love you all.
Serena
I know I am one of the odd men out on this one but his isn't a complication that effects me. ( anymore)
I have always been a very emotional person throughout my life but EM has actually changed this in me. I am now a very calm person who rarely lets anything get to me. I have a friend who has told me she wishes that she could be more like m e in this respect and I am so proud of her because she set out to change this in herself and se has made a remarkable difference! I am not suggesting anyone needs to make this change themselves. I just know it has helped me immensely.
I learned long ago any strong emotion good or bad only increases my pain and quickly! It takes over your body as if you have just walked into a 90 degree room. The first thing I tackled was my reaction ( crying and or anger) to my pain. It happens100% of the time when I d these things I hurt so much more which just makes me cry and get mad more which jus hurts more! You can see how this can e a vicious circle. I just made the decision to stop , take deep breaths with my eyes closed and stop it from hurting me more. I had to do this for myself. In my new terrible world where I have almost no control over anything anymore not even my own body I had to take control of what I could. It took some practice but I am now a naturally calm person that still loses it occasionally but for the most part I am as calm as a sleeping baby.
This is just the selfish reason I made these changes the other reason was like Oqxmjuozi2tsf pointed out my husband is having to live with this too. I know he doesn't feel the physical pain I do but believe it or not I think sometimes his emotional pain is worse. It breaks his heart to see me suffering...I mean really breaks his heart. He lives with this emotional pain everyday as if his loved one is taken hostage and is being tortured in front of his eyes every day. I already have enough guilt that I shouldn't have just because of the ways this has changed his life too so I want to make the same effort he makes for me in making us both as happy as possible. He shows such restraint when he just sat down and I need just one more thing to help me on top of the 100 things he just did for me upon walking in the door after working all day. It is as if he is a single parent taking care of a baby all night and working all day. He shows me such patients and this helps me feel some happiness in a very difficult life. I simply want to do the same for him.
That being said I am not perfect in this respect all of the time and it is something I continue to work on. I couldn't do it without his showing me the same favor. I am aware many of you are not blessed with the same patients from your loved ones and I am truly sorry. I wish you all the calmest of days as I have found they are just a little less painful.
Take care,
Alina
Dominique said:
Dear Lauren
Thanks for starting this discussion, it's very interesting. I do find that I feel short tempered when having flareups and I know it comes from the pain and probably a combination of medication. However, I tried never to snap at my son and husband as I am so grateful for their presence in my life and also so sorry that my husband has to life through this debilitating disease while he is in good health and could enjoy a more "normal' life. I don,t know if you understand what I'm saying, I know it's horrible for me to experience constant pain but he's the last person I should be taking it out on. The doctors however, that's a different story, if they are trying to help, fine, but if the are patronizing without knowledge of the disease I feel enormous frustration and anger. Hope this helps...
It happened because Ning doesnât see jane and Jane as the same name and we have had the problem, if problem it be, before.
mads said:
Hi Jane,
Sorry- dont know how that got through. Registered 2012. Would you like us to notify the 'other' Jane to change her nick, or would you like to amend yours? Add a 1 or DNA. I always remember you as investigating ANS and epigenetics. Jane DNA sounds amazing lol! ;)
Glad to see you back posting. We missed you. Hope you keeping 'comfortable'
God bless
mads
I seem able to control my emotions much more in regard to my own health problems than ill health afflicting any of my children or grandchildren which will leave me feeling really anxious to the point of tears and the older I get the worse that anxiety is. The greater the pain I am feeling the quieter I get and the more I withdraw from company. Probably goes back to an unhappy childhood when I got used to having to deal with things by myself.
I am snappy quite a lot of the time. Anxiety and slepplessness from burning/anxiety do not help. Add in prednisone tablets and I switch from snappy to absolutely no sleep at all, adrenalin tearing through my body and I go slightly looney tunes. I recognise it and tell those close to me what is happening and why so they dont think I've gone nuts for good.
blue
I don't know how or if it is possible to ad a link to tis discussion so I am just posting again to get this o the 1st page to help address another members post. :)
Cronic pain makes most people edgy. I know Iâm no saint especially trying to describe to doctors whatâs happening to me and relate it in a way that will be fully understood. Trying so hard myself to keep balanced. I have four children and although they really try to understand, they donât really .