This is my first post. I have been in this group for about a yr now. So, I was diagnosed last Saturday w/ Bronchitis. They gave me Prednisone, the steroid. I swear since I started the medication that my flare up’s are more than bearable then ever. No burning but i still get the tightness and warmness. Please let me know if anyone noticed that. I want to tell my neurologist to put me on steroids to treat my EM. I just don’t want to gain weight. BUT, if it drops my pain 70% then i will definitely do it.
I recently had to go on prednisone for a bad allergic reaction. I actually found it made my flares a lot worse!
Hi there, very interesting you say that about the Prednisone. I have a presumed diagnosis of EM currently and the doctors are still trying to figure out if I do have primary or secondary.
My rheumatologist just trialed me on a 2 week course of prednisone 2 tabs of 20mg once daily and I also found it helped reduce the flares significantly (it was nice to be able to stand in a hot shower without being in horrible burning pain).
And just like you I don’t want to be on it long term because of the weight gain but I’m currently looking at it as if weight gain is going to be an issue at least I know how to make that better, rather than the other end of the stick of burning and being in alot of pain and not sleeping because of it.
I’m seeing my rheumatologist on Monday so I guess see what he says from there :).
I hope this helps you in some way.
Selena
Corticosteroids (first a direct cortisone shot and later high dose prednisone) were unhelpful for me. Without getting into too many details, I suspect the steroids worsened my symptoms and may have played a role in triggering them. I’m now symptom free.
There is data from the mayo clinic that about 30% of folks who received steroids within the first year of their symptoms improved. They noted just 5 days could be enough in the patients they saw.
For me, I have been on steroids a couple of times. I have some other inflammatory problems, though. When my symptoms 1st started, my ears would flare at night, every night. As soon as I started steroids …next day…that completely stopped even though other aspects in my feet did not change. I was on for 6 weeks, dropping by 5 mg every week.
THis time I went on a very slow taper of prednisone, over 4 months. Initially I started on a higher dose but dropped quickly to a lower dose, 15 mg and then very slowly dropping by one mg per week. Now that I’m off steroids, the ear flaring has not returned . At lower doses like 10 mg, weight issues are not typically seen. The feet are better as well, but I think that occurred independent if the steroids
So if you are steroid responsive, and symptoms return when you stop steroids, consider discussing with your doctor a very, very slow wean of the steroids at lower dose range to avoid side effects.
just watch for nausea, it was all day everyday when i took them for a wk. prolly need to eat something b4 u take it
My father had swelling and edema but had something that caused him great pain and swelling so much that the one rheumatologist stated my father had “Pseudo gout” and gave him Prednizone/steroids for that. Pain killers didn’t help my dad and steroids helped him out a bit but didn’t cure it in five days and there was a reason for that. Pseudo gout was NOT his problem. But that treatment and some resolution was a sign he had something different and MORE PREDNIZONE at higher doses but taped off after 30 days or more cured it. I think it was 30 days, I think it could have been as long as 3 months if the case was bad for dad’s case, but I’d have to review old notes, this was some time ago. . . like 8 years ago.
THE PREDNIZONE helped and that reduced my dad’s edema and extreme pain he had in his hands.
The Prednizone helped the Pseudo gout symptoms in a minor way but the five days of that dosage didn’t help him resolve and it returned with a vengeance. We went to a highly rated second rheumatologist and I relayed the problems my father had and mentioned that the steroids helped a little but they didn’t cure it in five days. The second rheumatologist said that was an important clue and showed an intern my dad’s symptoms and how the treatment helped and said he knew what it was and how to cure it. My dad had RS3PE.
The second specialist looked at the results, first they gave dad pain killers then treated him for pseudo gout which was so bad his pain and swelling in his hands were so bad he could not even use toilet paper to take care of himself when going to the restroom. That was how bad his edema or swelling was. He said my father has RS3PE, and said he had to have a higher dose of Prednizone and be on it and have it taper off over 30 days not five. This solved and cured my fathers problem and his RS3PE resolved and he has a normal life since that time with no resulting RS3PE problems.
What is interesting of course is swelling and edema and pain can be a secondary result from up to 880 conditions according to web MD so many cases of EM or flare or swelling like symptoms may have a cause that is something like RS3PE. Perhaps some who have EM like symptoms have this kind of problem. I believe in the old days when they said EM could be secondary to other diseases, they listed Arthritis as one of them. I’m certainly not saying that is the cause of dad’s RS3PE but that the specialist in that area found that that was the cause and Prednizone was the solution to his condition. My father is quite old now and at times has had edema from other issues like sleeping in a lazy boy with his feet down for two or three nights. Anyone can have swelling in their feet if they mistreat their feet of course although with EM at least most of the versions we hear about on this board, sometimes is due to nerve damage or some other damage to the nerves. It’s usually related to some kind of nerve damage to be pure EM but at times it’s a side effect of other things like vitamin deficiencies in soldiers starving in Japanese prison camps, etc. There is also a rare form of EM that supposedly was caused by a POX VIRUS and a monoclonal Antibody supposedly cured it. I have found little evidence or information about that rare Chinese outbreak but there are POX VIRUS samples given to test animals and an monoclonal antibody for animal research that can give and cure EM in test mice, rats, etc. So the cause can be many things to cause burning or swelling. In some cases small or large fiber neuropathy where axion damage is supposedly happening which is like the opposite of the damage to nerves from sheath damage which is called MS. There is also side effects from more than one neuropathy which simply means nerve damage. So there seems to be a lot of different casues. I have a theory that Seritonin damage to certain receptors happened in the case of my mom from Risperdol but that particular pathway of damage Irreversable antagonism or damage to some 5HT receptors is just my own layman pet theory which our MD didn’t agree with. He felt she’d have more widespread damage from that and it would not be limited to her feet mostly and rarely other parts of the body. I of course know that Risperdol and her MD at the time she developed it knows that pill caused the damage and started the onset of a lot of flares since 2002 never really resolved at all by any treatment, only some reduction in pain. But that is specific to her particular and peculiar damage. Some say well you can be predisposed to receive the damage from the drugs that may cause you’re flares or EM to start. That is kind of like passing the blame to “genetic” predisposition and almost sounds like a liability defense. The truth or falsity of such a statement are difficult to judge, but doctors opinions hold way more ruling in cases of law and blame and liability if something seems to cause EM. What is strange of course is many drugs that help some may help about a third of those making statements as to their efficacy and not affect a third and make a third get worse flares. These are perhaps hints and clues to the damage or type of damage a person has that causes their flares, but it’s strange as well for the outsiders who don’t understand or know of the rare diseases and they almost think a 1/3 reaction in different ways is a sign of a placebo effect in all ways for EM. In other words with rare diseases involving pain and pain management which is chronic pain, the patient is sometimes blamed for mental health problems and their pain is denied by people who think they are mental health experts. This can happen with some chronic pain rare diseases like fibromyalgia. I read a fibromyalgia treatments work book and ended up giving it to a neighbor who had a daughter and grand-daughter who suffered from those problems. I made a mistake of mentioning that some think these are mental health related problems, not as a way to slander or slam the neighbors daughters but to say “it happens” and try to say don’t worry about that. But the way I said it seemed to imply I didn’t believe her daughter suffered from a real chronic pain disease. It’s important to realize people can sometimes state stuff and things can affect mental health but the professionals with compassion and expertise will be able to separate and treat the physical problems and differentiate the differences between a mental health challenge and someone who has real physical problems. And of course people can also have both. If someone for example is schizophrenic, we wouldn’t want them to be turned away form a hospital when they had a broken arm, we’d want that treated as caring humans. So sometimes with people as they get older, we get more and more problems of different kinds dragging us down and it’s a challenge to treat diseases and rare ones, as the person gets older.
Hope some of this has helped, but this is just some of my experiences. I also met a guy who was a nurse who had EM in his hands and talked about it when he saw my moms EM condition which is mostly in her feet, but can flare up in her nose and hands once in a great while or even flare up where her brain feels cooked with some drug side effects like Metropolol or blood thinners and some contrast agents for her like Cat Scan Contrast agents. For her there are a variety of drugs that can make it worse. Xanax, Resperdol, Metropolol, CAT SCAN CONTRAST, Potassium, blood thinners, and some therapies like asperin/Tramadol didin’t work at all. I think this is because her form of EM is different than some others of course. She has large fiber neuropathy from nerve velocity tests as well. Also in our case my sister may have a kind of burning foot like reaction called BURNING EAR and also had BURNING SCALP syndromes so we might have a genetic link with their issues and an heart arrhythmic drug seemed to resolve the “burning ear” syndrome which were symptoms present but she was not confirmed and verified with that diagnosis which supposedly has only be verified in 32 people in the entire planet. So ironically my mom and sister may have a rare version of EM or something related to it. And I’d say the RS3PE was just a rare thing my dad got that was unrelated to the EM, but it had swelling, edema and pain for him. (And I can’t say it had heat related flares for him from my recollection of that event.)
I also want to mention that no drug is a miracle cure in all situations and I know a guy who was an old guy who had stunted growth and his bones were very small but his body inside wasn’t. He had a bad reaction to steroids and they gave him steroids twice when he was 10 years old. So he had many operations as his bones stopped growing from that and he had many surgeries. He is a really nice guy but had extreme pain as a result of a drug reaction and bad side effect. He was allergic to steroids. So no drug is a cure all of course and in that case, the drug reaction caused great pain and crippling limits on this guy. Imagine having a body where all the bones are still the size of a ten year old and they have to operate and cut on the bones and expand the body a bit and you’re crippled with pain and you’re internal organs are growing to be adult size but you’re body isn’t growing in it’s bone structure. So some people suffer greatly from drug side effects and others of course go the opposite route sometimes with luck relying on as few drugs as necessary and live long lives. Still others of course need drugs for some reason and reject them and suffer from the lack of care. So obviously, well this is just my additional post to say my observations are just that not medical advice but just based on some things I’ve seen and heard from people I know and interact with. Ask a doctor or professional and find the right care team that can help you live life to it’s fullest.
Steve-EM. It’s been a while since I read you’re posts and I’m being a bit lazy but I think you’ve said in the past you have genetic primary EM. That I find interesting because perhaps my mom and sister could have EM symptoms and genetic causes but they haven’t been tested for it. I found the comments about the burning ears interesting as my sister experienced that. Anyway I should probably search you’re other posts. But if you have a few moments, you might be able to respond in this thread and mention if you have the genetic version of EM or “primary EM”. I think you or another EM patient here mentioned this before to me.
I should probably work on getting mom the genetic test to see if the NAV1.9 or NAV1.7 sodium channel defect is happening or whatever that particular set of DNA genetic primary tests would be. The cost of the tests of course can vary depeding on the lab and the insurance one has. They used to have a study that did testing of families that had EM primary from genetic defect but the information I heard about that a long time ago, like 2016 was only 30 familial groups in the entire world were verified to have primary EM in their genes. Which is quite rare.