Prednisone??? Any Input Or Experience????

[jenglynn]

Hi All,

Just saw a new neurologist and he wants me to start a 2.week dose starting in 2 days. I've read lots of reviews- most say that it "works" but the side effects are so awful they aren't worth the benefit of it. I've taken a lot of bad drugs over the last year so at this point I'm willing to try something that even gives me a chance to get better.

So if anyone has tried it or had loved ones try it, if you could share experiences I'd be so grateful! I don't care- good, bad or ugly! I've read the online reviews which are terribly negative in general and I get that and I know what steroids do to a body. I also know what my body has been through over the last year and I'm willing to put up with a LOT for a chance at improvement.

Thanks so much in advance who takes the time to reply!!!

Jen

[Chaos]

First time I did a 6 day burst it was a miracle drug. Couldn't believe how much it helped. Second time wasn't as profound but still helped. I've been in such a slump I'm seriously thinking of calling my doc in the morning to ask if I can try it again.

[jlmahon]

I've taken prednisone on and off for the past ten years. I've mainly taken it for joint inflammation (RA) but I also noticed it helped to keep my bp up. Since finding a new rheumatologist a few years ago, I've been given medrol shots in the office for flares. I've got to say I really prefer the shots, as don't seem to get the normal steroid side effects (weight gain, bloating, anxiety). The problem is, I can only get the shots 4x a year for some reason, and they only seem to help my bp for about 6 weeks. It really depends on the person. You could always try and see what happens. Good luck to you.

[Katybug]

I was put on a medium high dose (40 mg/day) about 2 months ago (we have figured out that the underlying cause of most of my problems is some sort of immune-mediated inflammatory connective tissue disease but just don't know which one). I did not taper. Within 36 hrs of the first dose, I felt great for the first time in 4 1/2 yrs. All of my symptoms were gone or lessened to the point of not being restrictive. At the 2 wk mark, I had a bad reaction to this dose (severe swelling, skin turned red and felt like bad sunburn, severe bone pain, flu type feelings) so I had to stop. It took about 3 days for really bad side effects to wear off and a total of about 3 wks for all to return to normal (and by normal, I also include that all my usual nasty symptoms came back too). I should also note that I was also on Florinef at the time. We stopped that too to try to get the swelling down as quickly as possible. (And, when I say swelling, I don't mean I was a little puffy. It looked like I had been stung in the face by bees.)

BUT, it worked so well, that I am now trying a low dose (10 mg only at bedtime.) I have felt a slight blunting of my symptoms, although not enough to make an impact on my activity level. However, I have made it through week 3 without any bad reaction. If all goes well, we will probably up the dose another 5 mg next Tuesday. We are trying to find a balance between reducing my symptoms enough to get me off the disability list while not causing a bad reaction. We are pretty sure, given that my POTS/inflammatory symptoms came back at full throttle within 3 wks, that burst therapy will not work effectively for me and I will need more constant suppression of my immune system. One complication that I will have to bring up next Tuesday is that I think I need to be back on the Florinef because I can not get and stay hydrated no matter how much and what I drink. That could complicate things again. I suspect both steroids at the same time contributed to the major swelling during the reaction. We'll see.

I am glad I tried and even though our first attempt failed, it also gave me some insight into which symptoms were really holding me back. I had gotten so used to feeling like I can't breathe/air hunger that I didn't really realize how bad it was and how much it was affecting me. Feeling well, then ging back again has helped me identify some things that have given us new leads to track down as well as reminded me what I am shooting for. It was really great for those two weeks!!

[rubytuesday]

I was taking a low dose daily for nearly a year for arthritis inflammation (only because I cannot take NSAIDS and aspirin/ibuprofen products). It really really helped me. I stopped them when I got massive doses of steroid injections in my back/SI/buttocks over the course of a couple of months. In that period, my hair was falling out, my fluid retention was way worse, I would get hypertensive very easily (yet still have orthostatic hypotension/syncope), I looked moon faced for months (my PCP swore I looked rheumatoid to her). It seemed to take my body almost 7 months to clear all those steroids out. I've taken the medrol dose packs for bad allergic reactions/asthma attacks and they helped. I hope and pray I don't have to go back on the daily dose (as much as it helped). Another thing with me, whenever I am on steroids, for some reason, I diurese--get up to pee a lot throughout the night and sometimes it makes the insomnia worse. I don't think I had the 'mood swings' that can come with steroids, (but you'd have to ask my family about that).

[dsdmom]

If I were you I wouldn't take this drug!!!! I don't post here often but saw this and felt compelled to warn you. I was given a five day dose almost four years ago and have been unable to get off it. It's been really awful and is the bane of my existence. I now have osteoporosis at 35 years old and it is so hard to deal with. The problem is that we don't know what exactly the prednisone is treating but my endocrinologist believes that the reason I can't get off it is because it is treating some underlying neuroimmune issue. And until we can treat that with something else I'm stuck. I have been doing ivig for over a year now and it did help me get lower on my prednisone dose initially but i then got sick and had to go back up on my dose. So I'm waiting to hopefully start a new treatment soon but please do not play with this drug. In my opinion it is so not worth it.

As a side note, before I became ill with dysautonomia/cfs I had taken short courses of prednisone for allergic reactions and the like and NEVER had problems coming off. So I know it is related to whatever is now going on in my body.

Edited April 17, 2012 by corina
medical advice

[jenglynn]

Thank you all! My doctor is sure this is the way to go to calm my aggressive autoimmune disease down... But what if it doesn't? It had me in complete rejection of IVIG in 4 doses.... I've had many, many people tell me this is a wonder drug and lots of others tell me it was their worst nightmare.

My illness is so rare or the combo (autonomic dysfunction neuropathy, autoimmune disease of unknown origin meaning they've never seen or heard of it before- but it destroyed my bidy's thermostat at some point so I never get fevers- and as quickly as my body was in rejection of the IVIG (which for immune therapy according to my neuro says us pretty safe and benign) for my to have an anaphylactic reaction (thankfully that nurse was there) and blood tests revealed that night whole body in rejection- all systems. Kidneys were functioning at 25% or something like that, liver, thyroid, bladder, bowels severely affected, m hemoglobin, hematocrit and RBC all changed about 69%... WBC higher, and my ferritin went from an 8 when they checked my iron - 2 weeks before was an 8- by this time I been transferred to the local hospital acute rehab unit- I'm not able to walk due to my multiple syncope- they said it was WONDERFUL- and was in the 80's or 90's I couldn't remember. They were celebrating telling me that it was working- my body was finally absorbing vitamins- and thus was fantastic news. I've yet to find out why- but apparently high ferritin is a false reading that indicates rejection (so maybe do them weekly to be sure???) I had been calling my neuro from Mayo all week and he finally called me back and I told him I felt awful but just as a "BTW" comment said at least it raised my iron. And he very quietly said... What do you mean? I told him about the ferritin test and he said for my husband to take me the our local ER and he was faxing an order and NOT to leave and wait for a call ob my cell. Sure enough- that's how we found out about the rejection. This was in Jan, by the way, almost to May. All of my organs are pretty good now except my kidneys. They haven't gotten worse ( good) but have not gotten better either (bad). So wait and see. Oh, and my wonderful iron???? Lol. First week off IVIG went from 85 or something to 58. Week later @39. You get the point. Now we are getting closer - @ 11. Oh 3rd illness genetic connective tissue disorder- they think EDS.

So yes, I'm very nervous lot about taking this. I know that even if they try, they can't really know how I will react. The side effects sounds sound awful. I have a LOT of cognitive dysfunction from my many concussions- now up to 12- but shows how many really?

I'm waiting and doing My research before I start. We have to. Some doctors are wonderful- some not so much- because they all are humans and I'm the last one to be such a hypocrite to expect them to know and understsnd a mutant like me just be honest.

So, I will keep you posted either way. Life's just so complicated. That's about 10% of my story and tried to keep it concise. Not possible I've decided. Wish me luck!!!!

Jen

[corina]

Good luck Jenn, hope this one will work for you!

[ramakentesh]

I was taking a low dose daily for nearly a year for arthritis inflammation (only because I cannot take NSAIDS and aspirin/ibuprofen products). It really really helped me. I stopped them when I got massive doses of steroid injections in my back/SI/buttocks over the course of a couple of months. In that period, my hair was falling out, my fluid retention was way worse, I would get hypertensive very easily (yet still have orthostatic hypotension/syncope), I looked moon faced for months (my PCP swore I looked rheumatoid to her). It seemed to take my body almost 7 months to clear all those steroids out. I've taken the medrol dose packs for bad allergic reactions/asthma attacks and they helped. I hope and pray I don't have to go back on the daily dose (as much as it helped). Another thing with me, whenever I am on steroids, for some reason, I diurese--get up to pee a lot throughout the night and sometimes it makes the insomnia worse. I don't think I had the 'mood swings' that can come with steroids, (but you'd have to ask my family about that).

Ruby do you have Ank Spond because that sounds pretty darn similar (back?SI/buttock pain).

[RichGotsPots]

becareful. They gave me it in the hospital to help with breathing, it did maybe 5% but it took me 4-5 months to get off of it. It's synthetic cortisol so your adrenal glands stop making it naturally and they shrink and then you have to pray you wake up and go back to normal of else take prednisone for the rest of your life

[anaphylaxing]

Love hate for me. Was put on it to help anaphylaxis. Helped but turns out there would've been better meds and it shut down my adrenals like Rich said, so Ive been fighting to taper off for almost a year now. The adrenal insufficiency symptoms were not fun. I also got Cushingoid a few times whilst on high doses.

I'm hoping my adrenal function returns but only time will tell.

[Debbie Rose]

3 months after my first "flare my MD put me on 40 mg for a month, tapering by 10 each month with a dose of 10 mg my goal as regular dose. IT WAS GREAT!! I was cured!! Little fatigue, clear mind!, good memory, no blurred/double vision and normal bladder function....Ran out once I moved to NC and new Neuro ruled out MS and would not perscribe it...Shortly after that I started to have more symptoms which continue to keep adding up

[anaphylaxing]

Sounds like you've run out of options and need to try it.

Just to give you my negative experience--needed it initially for anaphylaxis, then I couldn't get off it, it shut down my adrenal function and I was on steroids for a year. I became Cushingoid a few times, had loads of weight gain, POTS flares, acne, gallbladder issues...close to most of the possible listed side effects. I will never take it unless forced to again. That being said sometimes we are stuck between a rock and a had place. If you want to know any more details just message me

Let us know how it goes and I really wish you all th best.

[Friedbrain]

Interesting how many people here have both dysautonomia and autoimmune problems.

I have been on cortef (cortisol replacement) for about 9 years. My new Endo wants me to wean off the cortef because he doesn't think I need it for adrenal insufficiency (diagnosed 9 ys ago); my rheum and famdoc both think maybe the cortef has, at minimum, helped with inhibiting inflammatory process and may be responsible for being free of the MS like symptoms I had 9 ys ago (similar to what DebbieRose mentioned), and are being cautious about taking me off without a replacement. Their suggestion, fwiw, is to replace it with a more specific immune inhibitor azothioprine (?) if the endo insists on taking me off the cortef (their fear, and rightly so, I think, is that I will start having neurological and peripheral problems again if I go off cortef without anything else on board).

As an aside, there is a risk in taking high dose steroids even though they can help immensely. I was on solumedrol in the hospital for the mysterious MS-like symptoms (loss of balance, couldn't urinate, couldn't move eyes, etc) and tapered when I got out. I did not experience negative side effects to the solumedrol or taper; however, I later was diagnosed with adrenal insufficiency. Was the adrenal deficit (well, pituitary-secondary) an initial problem, or the result of being on high dose steroids? Impossible to know at this point. Most likely, though, autoimmune problems were there before and after. However, since I was incapacitated at the time solumedrol was administered, it's hard to argue against their use!

Anyway, I'm seriously considering trying the azothioprine, but am worried about changing the status quo...... as bumpy as it is, it's the bumpy I know versus the bumpy I don't

[anaphylaxing]

Very well put friedbrain. It seems there are a number of people diagnosed with AI at some point after a course of high dose steroids and it just makes you wonder doesn't it.