Katybug Posted February 16, 2012 Report Share Posted February 16, 2012 So during my immunologist appt yesterday, he realized he was under the impression that I had been unsuccessfully treated with steroids. Once we worked out that that wasn't the case, he said, "Well, you really look like crap and are always plagued by these symptoms, so I think we should try you on a course of Prednisone while we are waiting for your rheumy appt in March. It's much safer and much less expensive than anti-TNF drugs, so what have we got to lose. And, I don't like the way you look. You're getting worse." He made me laugh and I told him I'm glad one of my docs noticed that I wasn't having a good time of it. He gave me enough Prednisone to take home and get started so I had time to get the script filled for today. I feel amazing! I don't feel perfect but I haven't felt this good in 4 1/2 years. I have energy. I don't feel drunk and unbalanced. I don't feel shaky. I don't feel like I have a hundred pound weight on my chest. No OI today! I was able to take the dog to the park for 1/2 hour, put away laundry, and dust the lower level of the house, and, I'm not paying for it (yet )! (Normally, I'd be on my knees right now if I tried all that in one day.) It did take me 4 1/2 hrs to fall aslee last nigt (as oppose to my normal 2 1/2.) My joints are still on fire and my stomach is still a bit iffy, but, if I can stay at least like this, I could get back to my life. I am soooo hoping this is not a temporary reprieve. I don't want to get my hopes too high but it's really hard not to hope that this is my "miracle" pill and that treating my chronic inflammation is the key to the whole thing . Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 16, 2012 Report Share Posted February 16, 2012 Fantastic response and actually fairly typical for many people. Im about to try and talk my specialist into letting me try the same. Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 16, 2012 Report Share Posted February 16, 2012 Yeah! Always glad to hear someone is having some luck with some treatment!! That's great news. Hope it continues. Keep us posted. Is this just a prednisone burst (like 6 days) or are you on a maintenance dose until March? Quote Link to comment Share on other sites More sharing options...
DoozlyGirl Posted February 16, 2012 Report Share Posted February 16, 2012 So glad to read of your reprieve, Katie!!! Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 16, 2012 Report Share Posted February 16, 2012 That's wonderful Katie! Let us know how it goes... Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 16, 2012 Report Share Posted February 16, 2012 OK, that's amazing - after only one dose? You've obviously hit on something. Hope you continue to have good results! and please keep us posted. Quote Link to comment Share on other sites More sharing options...
kluesyk Posted February 16, 2012 Report Share Posted February 16, 2012 Yes, I am one that has an amazing response to steriods also. I keep telling my drs that this is the fix for me, but none want to be responsible for giving me long term high dose steriods due to possible side effects.I feel the same way when I get a steriod shot.....wow.... have my life back for a while....but sadly it does not last and the side effects of high dose steriods can be bad, too......just wish someone could figure it out. Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 16, 2012 Author Report Share Posted February 16, 2012 Hi everybody,Thanks for the kind words! Still getting good relief although my level of activity between yesterday and this morning did catch up with me a bit this afternoon and I had to rest for a while, but, I still don't feel completely trashed.rama - I hope your doc lets you try and it works for you. I know you have been feeling pretty bad lately.Chaos - He prescribed it as a burst but when I called him today to give him an update, he said to stay on the day one dose instead of reducing it until we meet again this coming Tuesday so we can see how much improvement I can make by then. So it's 10mg 4x/day, then we will discuss what we'll do for maintenance.kluesyk - My doc talked about keeping me on a low dose of the steroids for maintenance. Have you tried just low dose but orally so you can take it daily and keep a more consistent level of it in your body? Would your docs be more willing to dicuss that? I know there are serious risks with taking them long term but we were talking about trying drugs that are even more dangerous than steroids so the steroids were the lesser of the evils for me. Quote Link to comment Share on other sites More sharing options...
kluesyk Posted February 17, 2012 Report Share Posted February 17, 2012 Katybug,Yes, I am currently taking 1mg Medrol(longer acting steriod+not synthizined in liver) plus my replacement dose of hydrocortisone for the Addison's at 35mg. I recently decided to try a different way of taking the hydrocortisone as it seems I don't absorb it well orally. (Example: took 30mg hydrocortisone in AM and at blood draw at 1pm blood level of cortisol was only 2) If I get a intramuscular steriod shot I feel good for about 2 1/2 weeks, so I think mine is partly an absorbtion problem....so I am chewing up the hydro and letting it absorb sublingually. It is a bit unpleasant tasting and I have to really coat up my throat after with milk as it seems to be irritating a bit, but it is a world of difference....I am getting my hydrocortisone much better. My adrenals do not produce hardly any cortisol....last AM cortisol test without medication was 0.7 so I am in big trouble if I can't get the cortisol replaced. I do have a history of autoimmunity 20 yrs ago, so I think autoimmunity plays into this also.Hope you continue to do well.....it is so wonderful to be able to do things again when I get a steriod shot. Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 17, 2012 Author Report Share Posted February 17, 2012 kluesyk,Wow, doctors never cease to amaze me! I can't believe that they are giving you a hard time about the steroids at all given that you have Addison's. I hope they cut it out and let you have some peace and comfort. I hope you do well too.Katie Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 17, 2012 Report Share Posted February 17, 2012 For everyone that has had success with prednisone, I don't understand why none of the doctors try methotrexate. It is a very powerful immuno suppressant and if prednisone works, in theory, it should work as well. You could take it forever with a lot less side effects then prednisone. Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted February 17, 2012 Report Share Posted February 17, 2012 kluesyk,Wow, doctors never cease to amaze me! I can't believe that they are giving you a hard time about the steroids at all given that you have Addison's. I hope they cut it out and let you have some peace and comfort. I hope you do well too.Katiekatie,Do you mind if i ask you what reason your doctor prescribed the prednisone? The reason I ask, is I just started a high dose taper down 2 week regimen in order to attempt to stop an mcad attack or suppress the symptoms..... we were going for stopping the attack altogether. My dosage was/is 30mg twice a day first 2 days then 20 mg twice a day for 2 days then 10 mg twice daily for 2 days and so on tapering down. I'm on the 4th day and I am seeing good results, albeit still very exhausted and tired, but i finally feel like my body can rest and IS resting FINALLY again. But i had the really wicked and harsh side effects at first and still having some. I know the results will be short term, but if it lessens the attack and/or stops it, it will be well worth it compared to how i have been feeling. I know i will never chose to take it daily long term, my aunt has been on it for years, many years for lupus and i have seen first hand what it can do, so it scares me. But anyways, I was just wandering if you were being prescribed it for the same reason or different? thanks!glad it's helping you too! Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 17, 2012 Author Report Share Posted February 17, 2012 Tennille - We are trying the prednisone because I have extremely high levels of C4a, an anaphylatoxin that is considered an inflammatory marker for chronic Lyme and a handful of inflammatory autoimmune diseases. We can't pinpoint a specific dx because I don't test positive for the things that have specific tests. Our theory is that getting the infammatory process under control could be the answer to getting me back to a functioning life.Julie - Thanks for mentioning the methotrexate. This was an experiment and my doc is pretty open, so he may be open to the switch if this continues to work.I didn't feel too great this morning but I think that was still residual over-doing it. I took a nap in the early afternoon and feel pretty good again. Still better overall than prior to the prednisone. Quote Link to comment Share on other sites More sharing options...
blueskies Posted February 18, 2012 Report Share Posted February 18, 2012 Hi Katybug,Glad to here that you have seen some improvement on prednisone. I use it for allergies and for my when my skin on my face goes red, burns and swells. It always works for the allergies, but only works sporadically for facial redness/swelling.My sister in law has been on prednisone for 17 years now. It saved her life (she has sarcoidosis, not dys) and she has a very active life -- travels, looks after grandkids etc. but does rest for weeks in between. She's learned how to pace herself. There was no going back to work for her. But she has suffered some of the harsh side effects -- lot of weight gain, crumbling teeth -- but it's either dead or take the prednisone in her case. It also got rid of her regular migraines from day one which was a bonus. Without prednisone she would have been dead at 50 very probably. She's lived 17 more years and has lived them pretty well and it looks like she will live to a ripe old age.Personally I can't handle the side effects enough to take it on a regular basis. I just use it as needed. Short, usually 5 day doses, decreasing down to none on the sixth day. It causes me to have more sleeplessness (already a problem for me) and I get very jittery and develop a headache that can't be treated. About the 4th day I have a voracious appetite.I've spoken to my sister in law about these things and she tells me that she had these problems but that she has adapted. She can sleep well and the anxiety/jitteriness is gone. Not the voracious appetite. She was started on a dose of 50mgs a day but over the years has been able to bring the dosage down to 2mgs a day. Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted February 18, 2012 Report Share Posted February 18, 2012 I have had a really good feeling day. My body for the first time in i don't know feels 'quiet' inside. Like it's not screaming inside. I am still experiencing some side effects, but the benefits im getting are outwaying the current side effects. Overall strength increase, yet does not touch the 'exhausted' very tired feeling. Also my symptoms have lessened considerably. I could say more about the benefits and side effects today but im tired. I've been up more today and yesterday than in a while, doing a few chores but taking long breaks inbetween. Today i had to take a small nap. i still have a way to go left to see how it all works out.thanks katie for the info Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 19, 2012 Author Report Share Posted February 19, 2012 blue - Thanks for all the feedback. I am having a bit more trouble getting to sleep (a problem in general for me too) but so far that's it for side effects. It is nice to hear someone's story that has made it work for a long time as the long term side effects are a little scary (but I guess no scarier than living with debilitating POTS for the rest of my life).Tennille - I really hope this works out for you. I am still up and down because now I am having to re-learn my limits. I knew where the limit was and now that I am feeling a bit better I have pushed too far a couple of times this week but I'm still better than prior to the prednisone. It would be great if you are able to get through the side effects and continue to gain ground. My best advice so far this week...that "one more thing" you think you can do cause you feel better...skip it and do it tomorrow so you don't crash. Quote Link to comment Share on other sites More sharing options...
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