Aa
steroid dosage
hi just a question about steroid use. I dont have MS but was recently diagnosed with Autoimmune Encephalitis after having a brain biopsy 3 weeks ago. Several months ago I was on IVIG which really didn't help my symptoms, so now I'm going to try a trial of prednisone. My neurologist wants to start me on 60mg then slowly taper my dosage. I'm so nervous because I've been reading all the side effects to this large of a dose. I know many MS patients are also treated with steroids thats why I decided to post my question here. Can some tell me their experiences with prednisone especially if they were on such a high dose? I know this sounds silly, but I really dont want to be puffy, have excess facial hair along with the unpleasant other reactions. Just worried. Havent started yet should have started 3 days ago please respond if you can. Mary Beth
I see. I don't know if that is different. ADEM is also considered an autoimmune process, likely triggered by a viral infection, but it may be on the MS spectrum.
Yes, I would follow the instructions of your doctors and deal with side effects later.
We be here for you.
Quix
Yes, I would follow the instructions of your doctors and deal with side effects later.
We be here for you.
Quix
I really appreciate all the wonderful responsed I have recieved. The information was so helpful. Quix, after the open brain biopsy the neurologist I see at NYU who is also board certified in pathology did not say Acute Disseminated Autoimmune Encephalopathy, rather he said Autoimmune Encephalitis or Inflammatory Encephalopathy. That may be similar but according to the brain biopsy pathology I have extremely rare immunolabeled cells, along with microglial activation (moderate). I also have seizures (taking lamictal and topomax) as well as cognitive decline and memory issues. The biopsy was done in the right frontal lobe because the neurosurgeon did not want to biopsy the area where the seizure focas is because too deep and a dangerous area to get to. What is of concern is the biopsy area (random area) although distant from the seizure foci is so distant from the biopsy site and still showed these abnormalities.
I'm feeling relatively well, was having 7-8 complex partial seizures daily then increase after biopsy which was to be expected. But have decreased somewhat after meds change in hospital. I guess the big concern now is to hault the inflammatory cells progression.
I will take your advice and the advice of my family members to take the prednisone and will watch for side effects carefully.
Thank you all so much for all your help. I'll be in touch. What a wonderful group you all are!!!!
Mary Beth
I'm feeling relatively well, was having 7-8 complex partial seizures daily then increase after biopsy which was to be expected. But have decreased somewhat after meds change in hospital. I guess the big concern now is to hault the inflammatory cells progression.
I will take your advice and the advice of my family members to take the prednisone and will watch for side effects carefully.
Thank you all so much for all your help. I'll be in touch. What a wonderful group you all are!!!!
Mary Beth
Hello Quix..
Absolutely!! Actually, I posted a little while ago about the two, and my feelings that I have always felt I had MS and NOT lupus. However, right now, they are ONLY focusing on lupus (GP and rheumie), and are chalking up neuro symtoms to lupus. I believe this may be wrong, but - I am not a doctor!! My story is an interesting one, for sure, and fits right in here with the years of going UNDxd....I have such strong feelings about this issue, and have even tried starting a blog asking for peoples stories of UnDiagnosis and MisDiagnosis. I am aware that in the field of neurology, this happens too often, but in the rheumatological field - it is HORRIFIC....I have learned that there are many reasons for this - and I would be glad to talk about them in another thread if you like...although, as a doc - Im sure you are QUITE aware of the lack of knowledge amoung docs regarding autoimmune diseases.
In ANY case - I will post my story (I will try to "nutshell" it - lol...) on another post.
Also, I would like to say that I love this forum, and I think its wonderful that you take the time to answer us "laymans" questions with not only accurate knowledge, but compassionate as well. What a blessing you are to everyone here!! Thank you...
lauri
Absolutely!! Actually, I posted a little while ago about the two, and my feelings that I have always felt I had MS and NOT lupus. However, right now, they are ONLY focusing on lupus (GP and rheumie), and are chalking up neuro symtoms to lupus. I believe this may be wrong, but - I am not a doctor!! My story is an interesting one, for sure, and fits right in here with the years of going UNDxd....I have such strong feelings about this issue, and have even tried starting a blog asking for peoples stories of UnDiagnosis and MisDiagnosis. I am aware that in the field of neurology, this happens too often, but in the rheumatological field - it is HORRIFIC....I have learned that there are many reasons for this - and I would be glad to talk about them in another thread if you like...although, as a doc - Im sure you are QUITE aware of the lack of knowledge amoung docs regarding autoimmune diseases.
In ANY case - I will post my story (I will try to "nutshell" it - lol...) on another post.
Also, I would like to say that I love this forum, and I think its wonderful that you take the time to answer us "laymans" questions with not only accurate knowledge, but compassionate as well. What a blessing you are to everyone here!! Thank you...
lauri
Yes, you have helped, and thank you for jumping in. Failure to be able to come off steroids is not uncommon in some inflammatory diseases, even when they are using "steroid-sparing" drugs like Plaquenil. I have had patients like that. I'm sorry you're going through that.
I appreciate you comments about how the taper and few courses have fewer side effects and definitely fewer long term effects. Its important for the members here to know that steroids are never used continuously or longterm in MS. The standard of care is to use them in short (3 to 5 day) courses, with tapers when a patient's symptom-response shows they need it. The intent, in general, is to keep these courses spread far apart - except for the occasional time when very aggressive disease mandates 2 or 3 courses closer together.
Yes, steroids are miracle drugs - but have to be managed carefully. I'm pleased that you have been able to have the relief you have and I second your desire for better symptomatic and less toxic drugs - realizing that we have VERY "toxic" diseases.
Lauri - would you be willing to start your own thread and tell us your story? Lupus and also possibly MS???! Bummer.
Quix
I appreciate you comments about how the taper and few courses have fewer side effects and definitely fewer long term effects. Its important for the members here to know that steroids are never used continuously or longterm in MS. The standard of care is to use them in short (3 to 5 day) courses, with tapers when a patient's symptom-response shows they need it. The intent, in general, is to keep these courses spread far apart - except for the occasional time when very aggressive disease mandates 2 or 3 courses closer together.
Yes, steroids are miracle drugs - but have to be managed carefully. I'm pleased that you have been able to have the relief you have and I second your desire for better symptomatic and less toxic drugs - realizing that we have VERY "toxic" diseases.
Lauri - would you be willing to start your own thread and tell us your story? Lupus and also possibly MS???! Bummer.
Quix
Hi all -
I am new here and have not been Dxd with MS (many symptms) but I do have SLE. When my flare began again last fall, docs tried me on a steroid taper - starting at 80mg and gradually down. I felt great - until the dosage got to a certain point where my symptoms came flooding back. They tried this twice over a 3 month period. There are times with autoimmune diseases that a patient may need to STAY on a dose of prednisone daily to manage symptoms. The goal is to take the LEAST amount possible and still keep a flare under control. They started me on 20mg daily, and I have been better for months. Steroids ARE a miracle drug - WHEN taken safely.
Now, my rheumie is not comfortable with me being on 20mg, even though this isnt considered TOO TOO high. It can still cause long term effects. I have just tried to taper down to 15mg, with no success. (I am also on Plaqueinil, which will enable me to lessen prednisone as well, but it takes up to a few months to really kick in). Our next step is to taper the prednisone, and ADD a DMARD (in this case Imuran). These drugs are also called "steroid sparing drugs" as if they are on board, you can go down to a lower dose of prednisone.
As for side effects, this is what Im going thru right now: Yes, I am PUFFY!! My face is really round (called moonface), and my belly is a little swollen. I have not put on THAT much weight (maybe 10lbs?). At first, I was wired and had brutal insomnia. I was also very irritable and perspired alot. These symptoms went away after a while. Unfortunately right now, I am in another flare, and am on a taper again, starting at 40mg ot get symptoms under control.
For me, the symptoms that have to do with out appearance, are definately NOT fun. HOWEVER....I am able to get out of bed after being SO SICK for months on end. My pain level went down to a 3 from a constant 10. It does WONDERS for inflammation. So, for me today, Ill deal with the puffy face, because I feel good!! But - everyone is different. If the prednisone was not making that much of a difference in the way I felt, i would feel differently, Im sure.
Any time I have done a taper - no matter how high the dose was to start - I did NOT get the weight gain, puffiness, moonface. THat only happened when I went on a constant daily dose. You will probably get insomnia for a bit, and feel irritable, but hopefully - the good outweighs the bad.
I hope Ive helped in some way...Its too bad that all the drugs for these diseases are toxic!! I cant believe in this day and age, they cant come up with a med that helps with symptoms, but doesnt cause new ones (and dangerous ones at that!!)
Good luck
Lauri
I am new here and have not been Dxd with MS (many symptms) but I do have SLE. When my flare began again last fall, docs tried me on a steroid taper - starting at 80mg and gradually down. I felt great - until the dosage got to a certain point where my symptoms came flooding back. They tried this twice over a 3 month period. There are times with autoimmune diseases that a patient may need to STAY on a dose of prednisone daily to manage symptoms. The goal is to take the LEAST amount possible and still keep a flare under control. They started me on 20mg daily, and I have been better for months. Steroids ARE a miracle drug - WHEN taken safely.
Now, my rheumie is not comfortable with me being on 20mg, even though this isnt considered TOO TOO high. It can still cause long term effects. I have just tried to taper down to 15mg, with no success. (I am also on Plaqueinil, which will enable me to lessen prednisone as well, but it takes up to a few months to really kick in). Our next step is to taper the prednisone, and ADD a DMARD (in this case Imuran). These drugs are also called "steroid sparing drugs" as if they are on board, you can go down to a lower dose of prednisone.
As for side effects, this is what Im going thru right now: Yes, I am PUFFY!! My face is really round (called moonface), and my belly is a little swollen. I have not put on THAT much weight (maybe 10lbs?). At first, I was wired and had brutal insomnia. I was also very irritable and perspired alot. These symptoms went away after a while. Unfortunately right now, I am in another flare, and am on a taper again, starting at 40mg ot get symptoms under control.
For me, the symptoms that have to do with out appearance, are definately NOT fun. HOWEVER....I am able to get out of bed after being SO SICK for months on end. My pain level went down to a 3 from a constant 10. It does WONDERS for inflammation. So, for me today, Ill deal with the puffy face, because I feel good!! But - everyone is different. If the prednisone was not making that much of a difference in the way I felt, i would feel differently, Im sure.
Any time I have done a taper - no matter how high the dose was to start - I did NOT get the weight gain, puffiness, moonface. THat only happened when I went on a constant daily dose. You will probably get insomnia for a bit, and feel irritable, but hopefully - the good outweighs the bad.
I hope Ive helped in some way...Its too bad that all the drugs for these diseases are toxic!! I cant believe in this day and age, they cant come up with a med that helps with symptoms, but doesnt cause new ones (and dangerous ones at that!!)
Good luck
Lauri
OOPS!
However, I would like to add that when I recently had a 5-day course of much lower steroids by mouth, I felt like a zillion bucks!!
Tammy :)
However, I would like to add that when I recently had a 5-day course of much lower steroids by mouth, I felt like a zillion bucks!!
Tammy :)
Dowma:
I just bumped up a post from March of this year that has some more information about Solumedrol/Steroids in it for you...It's titled, "Solumedrol, Am I supposed to feel this bad?"
Just a few more opinions to add to your already wonderful ones!
Take Care,
Tammy
I just bumped up a post from March of this year that has some more information about Solumedrol/Steroids in it for you...It's titled, "Solumedrol, Am I supposed to feel this bad?"
Just a few more opinions to add to your already wonderful ones!
Take Care,
Tammy
Wow! Yes, we should all listen to your cautionary tale! While my comments might have been too blithe, I was trying to make the distinction between a temporary side effect and possibly major improvement of the brain lesions to a course of steroids. High-dose IV steroids are the appropriate treatment at this point for Dowma given the failure of IVIG.
Ncc - that "doctor" needs to be incarcerated for the criminally stupid! My comments on the dangerous way he used steroids on you are these:
We should not believe any doctor that offers us a "smooth course" of the MS by using steroids very frequently or in prolonged courses.
The current accepted course is IV 1000mg daily for 3 to 5 days. Longer courses have not shown to be more effective and the side effects climb exponentially!
Steroids should not be used in the presence or just after a fever (or any sign of infection) until the source of the fever/infection is identified and treated!!!!
Ten days at 1000mg day is very dangerous. That kind of treatment, if EVER done, should be done only in the hospital and under continuous monitoring for blood pressure, electrolytes, respiratory rate and weight. The fluid overload can, indeed , cause heart failure, an MI, and I could probably name about a dozen others. That high a dose would likely cause the osteo necrosis you suffered.
At that dose for 10 days (I'm still shuddering at that) mandates a taper. 10 days at a normal oral dose (40-60mg/day) might not, depending on the prior usage of steroids.
I never mean to speak of steroids lightly. When used judiciously the side effects are manageable and even osteoporosis is not likely.
For all, please read the Health Page "Steroids - Friend and Foe" to understand more of the risks of steroids when they are used CORRECTLY.
Ncc - thanks for jumping in here.
Quix
Ncc - that "doctor" needs to be incarcerated for the criminally stupid! My comments on the dangerous way he used steroids on you are these:
We should not believe any doctor that offers us a "smooth course" of the MS by using steroids very frequently or in prolonged courses.
The current accepted course is IV 1000mg daily for 3 to 5 days. Longer courses have not shown to be more effective and the side effects climb exponentially!
Steroids should not be used in the presence or just after a fever (or any sign of infection) until the source of the fever/infection is identified and treated!!!!
Ten days at 1000mg day is very dangerous. That kind of treatment, if EVER done, should be done only in the hospital and under continuous monitoring for blood pressure, electrolytes, respiratory rate and weight. The fluid overload can, indeed , cause heart failure, an MI, and I could probably name about a dozen others. That high a dose would likely cause the osteo necrosis you suffered.
At that dose for 10 days (I'm still shuddering at that) mandates a taper. 10 days at a normal oral dose (40-60mg/day) might not, depending on the prior usage of steroids.
I never mean to speak of steroids lightly. When used judiciously the side effects are manageable and even osteoporosis is not likely.
For all, please read the Health Page "Steroids - Friend and Foe" to understand more of the risks of steroids when they are used CORRECTLY.
Ncc - thanks for jumping in here.
Quix
This brings mixed emotions for me. The steroids can be a wonderful tool in fighting the symptoms of inflamation but there are grounds for concern as to the side effects.
This is my story:
I was diagnosed in my late 20's by a young Dr that I thought was the all knowing and the end all of Drs. He assured me of a normal life and that all I would need would be drugs and periodic steriodal treatment. He prefered the IV to the pills and that was ok with me as I am not scared of needles and I trusted him. He was my Dr for 5+ years and there were a couple of times that I needed the treatments due to optic neuritis. Things took a turn for the southwhen I began to get terrible side effects from a treatment that I was administering to myself once a week: fever,(102.2+) chills, intense pain. He seemed to think that I needed to be on pain management and started to prescribe pain medication to treat the side effects. Well, after a severe fever I had some of the vision problems again and he gave me 1000 mg of Solumedrol IV for 10 days and no taper. This almost killed me. I went into congestive heart failure not to mention the way that I looked. I could not walk, I could not do anything on my on for months. Needless to say, he split town taking all of my medical records for fear of being sued. To this day I have had to have a shoulder replacement due to the massive dose and will eventually have to have a hip replacement due to osteonecrosis all because of the "steroid poisening". Please do all of the research that you can do and go with your gut as to what is right for you. Looking back I knew that something was not right and that is a red flag. Yes, Drs are trained and are for the most part smart but do not trust someone simply on that alone. Steroids are a dangerous drug and they need to used with caution. If you have these concerns ther might be a need to get a consult. I wish that I had.
This is my story:
I was diagnosed in my late 20's by a young Dr that I thought was the all knowing and the end all of Drs. He assured me of a normal life and that all I would need would be drugs and periodic steriodal treatment. He prefered the IV to the pills and that was ok with me as I am not scared of needles and I trusted him. He was my Dr for 5+ years and there were a couple of times that I needed the treatments due to optic neuritis. Things took a turn for the southwhen I began to get terrible side effects from a treatment that I was administering to myself once a week: fever,(102.2+) chills, intense pain. He seemed to think that I needed to be on pain management and started to prescribe pain medication to treat the side effects. Well, after a severe fever I had some of the vision problems again and he gave me 1000 mg of Solumedrol IV for 10 days and no taper. This almost killed me. I went into congestive heart failure not to mention the way that I looked. I could not walk, I could not do anything on my on for months. Needless to say, he split town taking all of my medical records for fear of being sued. To this day I have had to have a shoulder replacement due to the massive dose and will eventually have to have a hip replacement due to osteonecrosis all because of the "steroid poisening". Please do all of the research that you can do and go with your gut as to what is right for you. Looking back I knew that something was not right and that is a red flag. Yes, Drs are trained and are for the most part smart but do not trust someone simply on that alone. Steroids are a dangerous drug and they need to used with caution. If you have these concerns ther might be a need to get a consult. I wish that I had.
Hi, and good to see you. I don't think I knew about your diagnosis. Is the full name of it Acute Disseminated Autoimmune Encephalitis? ADEM? If so, DO what the doctors recommend, please! Even if there are side effects like a puffy face and weight gain from prolonged use (a month or more) they will subside when you go off the meds, at least the puffy face will. As for the wieght gain, with careful eating and increased activity you can prevent most of that.
What is most important is to take care of your brain. If the prednisone is considered your best option, then please do it! If it could help your lesions heal, then why worry about some side effects? I found that after 4 months of steroids have a puffy face, which was gone within a month of stopping the steroids.
One of our members is diagnosed with ADEM and I'll go rustle her up.
I loved being on steroids. I'm like Wanna. I feel great on them and when I was careful, I didn't gain much weight. I would recommend if you are going to be on them a month or more, that you ask if you should have a baseline DEXA scan for bone density and if you should be on supplemental calcium and Vitamin D.
I also wrote a Health Page on Steroids talking about becoming steroid dependent. If you are going to be on them for more than a couple weeks, your adrenal glands will be dependent on outside steroids for a while. So I recommend that you read that.
Good to see you!
Quix
What is most important is to take care of your brain. If the prednisone is considered your best option, then please do it! If it could help your lesions heal, then why worry about some side effects? I found that after 4 months of steroids have a puffy face, which was gone within a month of stopping the steroids.
One of our members is diagnosed with ADEM and I'll go rustle her up.
I loved being on steroids. I'm like Wanna. I feel great on them and when I was careful, I didn't gain much weight. I would recommend if you are going to be on them a month or more, that you ask if you should have a baseline DEXA scan for bone density and if you should be on supplemental calcium and Vitamin D.
I also wrote a Health Page on Steroids talking about becoming steroid dependent. If you are going to be on them for more than a couple weeks, your adrenal glands will be dependent on outside steroids for a while. So I recommend that you read that.
Good to see you!
Quix
Hi there!
I do hot have MS but do have connective tissue problems, and I am taking predinsone as part of my treatment. I have been on it for 6+ weeks now, and I have had an IV of Solu-Medrol during this time time period as well. I have not have any adverse side effects from the treatment. I too was a little concerned about weight gain, but that has not been an issue at all for me.
I guess I am a poster child for prednisone. I think it is WONDERFUL.
Maybe my experience is not typical, or maybe we just don't hear about the good stuff, but I just thought I'd tell you how much it has helped me.
Good luck to you...good health!
Wanna :o)
I do hot have MS but do have connective tissue problems, and I am taking predinsone as part of my treatment. I have been on it for 6+ weeks now, and I have had an IV of Solu-Medrol during this time time period as well. I have not have any adverse side effects from the treatment. I too was a little concerned about weight gain, but that has not been an issue at all for me.
I guess I am a poster child for prednisone. I think it is WONDERFUL.
Maybe my experience is not typical, or maybe we just don't hear about the good stuff, but I just thought I'd tell you how much it has helped me.
Good luck to you...good health!
Wanna :o)
Hi...how long does the Dr want you to take the Prednisone? I don't know that much about it...I know people with MS, I'm not yet Dx... do take it by IV at Very High Doses...much higher then 60mg...
I took it for 6 days a few month ago at 50 mg... it helped with some of my symptoms, but when I stopped it...I didn't taper down.. the pain, and other stuff came back the next few days..?
I really think it's different for length of time etc...
check out our Health Pages...up on the right corner..you will see a link to them..
I'm sure someone else with more experience will pop in to discuss...
good luck
andie
I took it for 6 days a few month ago at 50 mg... it helped with some of my symptoms, but when I stopped it...I didn't taper down.. the pain, and other stuff came back the next few days..?
I really think it's different for length of time etc...
check out our Health Pages...up on the right corner..you will see a link to them..
I'm sure someone else with more experience will pop in to discuss...
good luck
andie
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