Corticosteroids for CFS?

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Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 12/26/2012 3:16 PM (GMT -7)   
I just thought to run this by everyone out there.  My doc has suggested trying 3 IV's of this for three months, starting in January.   I would have this done first friday of each month, Jan-March.  The reason for this, according to him is that my immune system is producing a certain anti body at a very high level.  I have been on many supplements for almost 2 years now, and even take adderall in certain instances to give me an exta boost.  All this of course just treats the symptoms, whereas this is intended to re-set the immune system.  He seems to think that bringing this anti body production back to normal ranges should help me.  Has anyone ever tried this before?  I know there are side effects like most drugs, and this would not be intended for continued long term use.  Any comments on this would really be appreciated.  After 2 years I would certainly like to see even modest improvments if nothing else.

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 12/27/2012 2:06 AM (GMT -7)   
Minnesota, I had never heard of this before so I had to look it up online. It is very interesting and from what I read this is a treatment that has been tried over the years for CFS. In each study some people did see a little improvement but one of the side effects makes it not worth it. They found that adrenal suppression is one of the main side effects & so it has been determined that the cost does not justify the means. But it is up to you if you want to try it, it seems that not every patient had that side effect. I would read up on this if I were you & talk it over with your doctor, so you can make an informed decision. Hope all goes well with you, hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

InventingJoy
New Member


Date Joined Dec 2012
Total Posts : 6
   Posted 12/30/2012 1:11 AM (GMT -7)   
Can U say more abt it? Describe your symptoms & what youve already tried. Diagnosis if you have one. Have U done a sleep study? I have chronic pain as well as sleep apnea. I have done 6 epidural steroid injections over 2 years. I don't know if its the same thing. What I do know is that steroids are my go to drug of choice (if it wouldn't kill me, which in all probabilty it would). I have no obvious side effects like swollen face etc from steroids. My body reaction is great! Steroids totally relieve my pain. So it seemed to be a natural for me. It took 6, but it really turned me around eventually. Made my pain a lot better. I was doing other things at the same time. There are a lot of variables, so its hard to be sure what helped but I've been suffering since 1997. Something helped & made a huge difference. So all things being equal like, how, generally do you react to steroids? Maybe take oral steroids & test your reaction first? Make sure you don't have sleep apnea or treat it if you do. If U are like me, have my body etc. I would highly recomend it BUT CAUTION! skull I lucked out! Have you heard about the contaminated steroids that killed a bunch of people & left others with somebody help me. I can't remember the name of the disease/disability they got left with???? Very serious. Fortunately, I did not have the injection of the contaminated stuff. More by luck than brains. You don't hear abt those things til a bunch of people die. Check it out carefully. Find out where the medication is manufactured & being shipped from. Investigate where the contaminated stuff comes from etc. I do think that for me, the excellent result seems to be long acting. But read my words carefully. Dont' rush into it without carefully investingating every part of the medication & your usual body reactions first. Pls let me know what you decide & how it turns out. I really want to know. Puppy love from InventingJoy & the Furry Folk
Puppy Love from InventingJoy & the Furry Folk Caringpro@gmail.com

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 12/31/2012 8:29 AM (GMT -7)   
Thanks so much for the suggestions....a bit more due diligence is needed.  My dx is cfs and hashimotos encephalitis, the later being auto immune.  Main symptoms are brain fog, dizziness, and of course 24/7 fatigue.  I have tried testosterone injections, various supplements, DHEA, vit B injections, etc.  All have helped a bit, but I seem to be stuck at 75% of my "healthy" level of functioning.  These cortocosteroid IV's are just a trial to see if something can re-set my immune system, and shut off the production of this one anti-body.  Being in this state is so hard, part of me would sell my soul to the devil to be fully functioning again, and able to work full time again.  Other side of course says to be patient, and hopefully things will improve over time.  After 2 years it is hard not to be frustrated, something many out here could agree with.  I just hate being tired all the time, always feeling like I could lay down and go to sleep.  My other options according to my doc would be to try something like ambien to get better sleep consistently, or adderall every so often for a boost.  I have tried this a few times when I have had something very important to attend...work related, family vacation, etc. and it does help, you have energy in a weird way.  But, even fake energy feels good every so often.  Any other advice?  Sounds like you had good luck with this, that should make you feel lucky!

InventingJoy
New Member


Date Joined Dec 2012
Total Posts : 6
   Posted 1/1/2013 4:26 PM (GMT -7)   
Have U done a sleep study? search my name & read what I wrote abt me & my neighbor. It gave both of us our lives back. If you haven't, run, don't walk. Get it done NOW! Priority #1 is a working brain. Then U can evaluate other treatments if decide U still need it. I am learning that CFS is often the misdiagnosis given to sleep disorders which are often not considered. I have no idea what hashimotos enc is. Is there an objective method for diagnosing that? If U R experiencing malaise, not pain, I take back my recomendation. It helped my pain. Malaise was only helped by a CPAP machine: which after using it 3 years I am 10 days off & am not symptomatic. Yeah!!!! Excpet today. I went to bed late & my cat woke me early. BAD CAT! Then dogs say "your up. HOw about some attention for me?"They don't care that I'm up yelling at the cat.LOL Pls keep me posted. Happy holidays
Puppy Love from InventingJoy & the Furry Folk Caringpro@gmail.com

Recoveryme2day
Regular Member


Date Joined Jul 2012
Total Posts : 335
   Posted 1/11/2013 6:03 PM (GMT -7)   
Good advice from everyone, I would just add that steroids are nothing nice and can cause both temporary and permanent issues with the adrenal system. From the way you described it, it sounds like your Dr. is spreading the steroids out really well, which would make this trial a lot safer, unless the amount is higher. I would advise to ask a Lot of questions but if you trust the Dr. who's giving you the treatments and he/she is going to monitor you closely,well I'm going on 4 years with this and I'd be willing to participate in a few safe, well run trials. Keep in touch.
Crainiotomy Lg. Meningioma Dec.02, Bi-Polar 2004, SMI 06, Gluten/Wheat/Dairy Intolerance, IBS 06, Migraines w/pseudo-seizures 07, Dev. Septum Sur. Sept.07, 2nd Men./Tumor Gamma Knife Rad. Dec.08, Radical Hysterectomy Sept.09 w/instant Menopause, Fibromyalgia 09, Disability since 09, EBV/CFS 11,Vomiting/Multiple Ulcers, Vertigo 12, Chronic Fatigue Moderator 2013.No meds list I ran out of space.

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 1/12/2013 12:33 PM (GMT -7)   
I had my first cortcosteroid infusion yesterday morning.  Just to reiterate, my doctor is hoping this 3 time treatment resets my immune system to not overproduce the one certain antibody, and to some extent a second anti body that was a bit high. Taking this long term has dire side effects that were completely explained to me. I have to say that yesterday and so far today are the best I have felt since my onset 2 years ago.  I was told I would have a burst of energy that would taper off in a few days, but it is unreal to feel "normal" again so far.  I only slept about 3 hours last night, which again I was told would happen.  My head is clear, and I had more energy yesterday than I knew what to do with.  Man, to touch that feeling again was bittersweet.....to feel what I was missing, and ot know this will most likely be transient.  I actually went out last night with my wife past 9:00 p.m. for once, and got to see what other adults do on weekend evenings.  Fingers crossed for now. Will report back after round 2.

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 1/12/2013 10:31 PM (GMT -7)   
Minnesota, Wow!! That sounds so heavenly, to feel what it is like to be well again. To have that even for a few hours or a few days must be so exciting. I am glad this treatment is going well for you. When do you have the nexdt one? I wish for your sake this would not disipate but would continue. Enjoy what you get okay? Hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 1/18/2013 9:38 AM (GMT -7)   
I just wanted to report in, and 8 days after my infusion I feel like my old self again.  This is the best I have felt in over 2 years.  Not a wired or fake energy feeling, just normal.  Not sure if this is still the after effects of the infusion, or if this treatment has re-set my immune system.  I have exercised more in this past week than I have in the past 2 years, and have clearer thinking.  I guess I will know more as time goes by if this is transient, or the real deal.  The other good thing is that I have not taken all the supplements that have kept me going on a daily basis during this time span.  My comment is for those who have some type of abnormal immune system, it may be good to dicuss with your doctor.  We are all different, but so far this has made a HUGE difference for me.  I all of a sudden want to make up for all I have missed in the past couple of years in the next couple of days!

Recoveryme2day
Regular Member


Date Joined Jul 2012
Total Posts : 335
   Posted 1/20/2013 3:51 PM (GMT -7)   
Awesome News!, so glad you have found something that works for you and you continue to share it with us. :))
Crainiotomy Lg. Meningioma Dec.02, Bi-Polar 2004, SMI 06, Gluten/Wheat/Dairy Intolerance, IBS 06, Migraines w/pseudo-seizures 07, Dev. Septum Sur. Sept.07, 2nd Men./Tumor Gamma Knife Rad. Dec.08, Radical Hysterectomy Sept.09 w/instant Menopause, Fibromyalgia 09, Disability since 09, EBV/CFS 11,Vomiting/Multiple Ulcers, Vertigo 12, Chronic Fatigue Moderator 2013.No meds list I ran out of space.

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 2/2/2013 1:52 PM (GMT -7)   
Well, the it appears the steroid IV I had has finally worn off.  I managed 17 days of what I would call normal health from this......no brain fog, more energy than I had felt in over 2 years.  It was one of those feelings that reminded me what normal folks must feel and take for granted.  I have 2 more of these for my treatment plan to see if this works.  Not holding out hope for that, but looking forward to another break from this at least.  I will be curious to see how often this could be administered w/o worrying about the side effects.  No way this can be done too often, but maybe a few times each year.  Would be nice to plan a vacation around this so I could really enjoy it.  We shall see.  Unreal how it felt though.  Made me a bit sad to realize what it felt like to have a clear head and energy again. 

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 2/2/2013 5:38 PM (GMT -7)   
What a great experience!!! I am so happy for you that you did so well on the treatment. Your right it would be great to plan a vacation around a treatment. To have so many days in a row of clear headed energy, wow. I can see where it would be hard to go back into the illness & have to live there again. Reminds me of the movie where coma patients got to wake up for a limited time & then had to go back into the coma. It was so sad but I guess you should look at this in a positive way, planning things to do while semi healthy. I hope the next treatment works as well as this one did. When do you have it, any idea? Hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 2/3/2013 7:41 AM (GMT -7)   
Denise-Thank you so much for the thoughts, very nice of you. I have my next cortcosteroid treatment this coming Friday, and then again March 11th.  At least I can look forward to a few weeks coming up where I most likely will feel good again.  I am already planning a few things assuming that is the case.  Emotionally it was a weird deal.....experiencing normal health for that time period really made me realize what I was missing.  To come down from that hit me again to the magnitude of this illness, and how it affects your life.  To have a few days where I didn't have to fight the ever present fatigue, or parcel out my supplements throughout the day was heaven.  To just flow with the day so to speak.  It is so tempting to risk side effects to feel normal again for as much as possible, but to do that is short sighted. I can see how people get into trouble with temptation.....the allure can be very strong.  Take care, and thanks again for the kind words!

Happyhelene
New Member


Date Joined Feb 2013
Total Posts : 12
   Posted 2/3/2013 8:53 AM (GMT -7)   
Very interesting to read about your treatment. Did you ever get evaluated for Lyme or tick borne illnesses by Western Blot Test or other? I only ask because I had same symptoms for 5 years and repeatedly tested negative on the Elisa screening test for Lyme but they finally did a western blot anyway because I insisted and I was positive on several bands for Lyme. FYI. I had considered the corticosteroids treatmenent for CFS before I figured out it was Lyme and Bartonella infection, but was afraid of long term use and side effects. Please keep posting and let us know how you are doing. I am only now getting better after 8 long months of several antibiotics and supplements.

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 3/5/2013 12:02 PM (GMT -7)   
Helen-I did have another round of steroid infustion 3 weeks ago, and will have my third and final round this coming Friday.  The second treatment did not have the same effect as the first.  I only had about 2 days of feeling great, and then slid back into my baseline. This has my doctor confused, after responding positively for 16 days after the first treatment, he thought maybe we had identified an inflammation as my main issue.  After the second, he is not so sure.  No clue what will happen in round 3, but I will report this.  As I said earlier, to feel that normal feeling again made me realize how I experienced each day pre illness, and took that feeling for granted.  I have switched to Vyvanse now which is helping me a lot with brain fog issues.  I am on the lowest dose given, but it gives me a clear head for7-8 hours and lets me keep working full time.  When the initial steroid treatment worked, I didn't need to take this to function better.  Really curious if anyone out there has any comments as to the difference in the 2 treatments, yet it was the same fluid I received. 
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