Choosing my poison...

[Sharon]

Thanks Warmwaters, I'm also extremely sensitive to meds
and believe that hot baths are therapeutic.

How often do you need to do the burst?
I imagine you suffer no side effects from such short-term and low dosage use of Prednisone?

I may ask my doctor about giving the idea a try.

Trejonina- Yep, all the meds for AI come with possible serious complications.

[Deb 27]

I think your title is perfect. I guess you just have to take a deep breath and try a medication. I am ok so far with plaquenil. I've done ok on small doses of prednisone in the past. I am very sensitive to medications and the older I get, the worse I get. I hope the plaquenil keeps me stable and I don't have any damage from it. Eye check coming up soon.

What happened when you took LDN? Did they start you on a very low dose? I am trying it right now mostly for my auto immune thyroid.

I really think the biggest change in my joint pain happened when I got off wheat, potatoes and other nightshade veggies along with MSG. I ate some bread last night and boy am I paying for it today... Wish I hadn't done that!!!

[Sharon]

Hi Deb- diet helps my joint pains as well, along with Vit. D3.
What is MSG?
I began on the lowest dose of LDN (0.5mg I think), and was unable to increase it at all.
It "sensitized" me even more than usual, and suddenly I was suffereing from IBS pains I hadn't felt in many years!
Oh well, we try.

[warmwaters]

I can do the burst up to 4 times a year. However, I've been cautioned to try not to do it that often. And I am taking other meds as well.
I tend to do the burst after 2-3 weeks when I am so tired that I cannot do basic things like make a sandwich, read, hold a conversation, and have pretty much been either sleeping for 12 hours a day or just drowsing in front of the tv most of the time. Usually there's a fair amount of pain associated with this too.

So the burst is to try to break the cycle of "it's really really bad".  If my normal "feeling bad" number runs between 4-6, this is for 8+.

Thanks Warmwaters, I'm also extremely sensitive to meds
and believe that hot baths are therapeutic.

How often do you need to do the burst?
I imagine you suffer no side effects from such short-term and low dosage use of Prednisone?

I may ask my doctor about giving the idea a try.

[Sharon]

Thanks Warmwaters, I understand.
Did they tell you why you must limit this burst to up to 4 times a year?
What are its dangers being so low-dose and short?

[warmwaters]

I'm sure it was explained to me, but anything like this should be checked with your doctor. We're all so different.

[Sharon]

My doctor first wants me to give Prednisone a longer trial (at 10mg) to see if it gets
my symptoms under control (which symptoms respond more/less to the treatment)
as part of my diagnosis.
But I'm thinking what happens if it actually does work?
Maybe your "burst" could help down the road or maybe a constant low-dose?
I don't trust my doctors 100% (for example, they didn't suggest tapering!)
so hearing how others are being treated helps a lot!

[cccourt1942]

what drives me crazy personally is the strange inflammation I get on my eyelids (which causes them to swell, droop, look deformed and uneven) and inflammatory tears (causing my eye to become bright red and face to burn if I cry) and my skin looking like it's breaking down

Sharon:  Lots of good info with this thread.  I am quoting the above as to ask, are these really your worst symptoms?  And does the prednisone help those issues? 

I was dxed at age 71 (almost 72).  I estimate from the time I was about 45 I was prescribed Medrol pacs (at 4mg tablet) for 1 to 2 times a year.  They were given to me for sinus infections.  The physician who Rxed these pacs would tell me I couldn't have anymore than that as " would need them when you get old."  Boy was he right.  As I read this thread...and many others...I am beginning to wonder if those Rxes of Medrol are what kept my SjS tamped down (or tolerable) for decades.  I remember going on some vigorous trips and asking for a pac...and were given to me if I hadn't had the magic number of 2 in any given 12 month period.  I had no idea they could be considered "bursts".  Now listening to you, and thinking of the symptoms which bother you most, I wonder if MY symptoms (sinus) which bothered me the most are the equivalent of someone else's symptoms...such as the one you describe. That is:  the symptom which bothers us most.   Each of us perceives pain (and pleasure) in unique ways.  I am saying this as for decades (and still now) I have suffered what I call "allergic eye".  My eyes will swell, itch, and generally bother me.  My acuity has never been affected thru any of the decades.  Just what I "felt".

Now: I am one on LDP (low dose prednisone).  In Feb it will be two years.  I was on 5mg per day for a year.  The last year I have maintained at 3mg per day except for about 6 weeks at 2mg per day.  My rheumy really wants my maintenance at 2mg.  I would too.  I can barely walk at 2mg..in the dead of summer.  I upped my air con so my home wasn't as cold (75) but I was still miserable.  btw:  in dead summer in Texas I was wearing fall clothes.  I recall us discussing your mid 40s age, and you have a long time before you are my current age ...74.  If...IF...you could get to 1 to 2 mg per day, I think it would be worth the trial.  Your goal would be to get off it for certain periods of time.  And that is hard.  btw: Even on the LDP I have had to use prednisone bursts three times in two years.   (for costochondritis attacks).  These bursts start at 30mg @ 3 days, 20 @ 3days, etc down to the 2 1/2 mg per day.  During those doses, I don't take my other dosage.  Another thing about my bursts: all three of those were followed by ER visits for pain injections.  Saying that to let you know why that dosage is so high.

Anyway:  the prednisone is scary.  I've been scared (or respectful) of the long term side effects for about 30 years.  At my age and stage, I have surrendered my body to it.  I can live independently and function taking care of a home.  Am I fearful of bone loss, etc?  I am terrified of falling since I have osteoporosis in one hip.  You probably know many "old folk" falls are not falls, yet a bone crumbling and then crashing to the floor.  When I am out and about, I find myself shuffling.  When I am traveling I wear secure ankle braces and tennis shoes and can't do that shuffle.  I take smaller steps.  I'm aware of it constantly.

So now...I've given you new thoughts to worry over.    Sorry.

Have a nice day,
c3

[MAT51]

Hi Sharon. What a dilemma for you.

I was initially misdiagnosed with RA too so tried Sulfasalazine (anaphylaxis after 3 weeks) , Methotrexate by pill and injection for 2 years until I could bear the sickness no longer, Plaquenil for 18 months (anaphylaxis) and Imuran last year, which caused Pancreatitis. I'm very confused now about whether I would try further medication. My SFN and ganglionopathy plus tinnitus, problems swallowing and longstanding rotten taste are my constant companions and I would try Cellcept if my rheum agrees I think.

Taking Cellcept would be an act of desperation though because this is what I think: SjS means that many of us are unable to tolerate these medications. I believe that this is because the systemic lack of moisture means the toxicity is more concentrated and can't flush away as it needs to. So it's a balancing act between toxic build up of drugs or the eventual destruction of our bodies through lack of moisture.

No drug will help with the classic symptoms of SjS and therfore it depends which organs the disease is affecting and how severely - and on the likelihood of the drug being effective enough to risk potentially serious, even life threatening side effects. Very hard and to my mind there are no right or wrong answers - it's a question of the the lesser of evils I'm afraid. And you have the childbearing issue to factor in too so I would avoid Methotrexate, although I believe it's the drug that chased away my secondary RA symptoms, but not my Sjogrens sadly.

[Sharon]

Thanks for your input C3 and MAT. Your stories do give me much to consider.

I'm just 40, and the symptoms are actually many: the fatigue is nearly always there, joint pains come and go, salivary gland swelling of the accessory glands, difficulty concentrating, can't tolerate any exercise, can barely eat because of gastro symptoms, and then there are the allergic reactions to the environment in general, burning red eyes and swollen eyelids with angioedema.

I've been put on 10mg of Prednisone for a trial of a month to see what it does for me.
So far I'm on Day #5 and...NO CHANGE! 
I still feel (and look) just awful.
When can I expect any improvement on this dose?

[MAT51]

Sorry but in my case steroids give me terrifying psychosis - although my inflammation levels drop dramatically in my blood. It should be working by now if your problems are autoimmune in origin I'd have thought? Five days is sometimes when people start to taper off - usually they kick in fast. Could it be allergy - let's say even a mast cell related rather than systemic inflammation? I had blood poisoning from a cat once and then again I had anaphylaxis from Sulfasalazine and Plaquenil. In which case you probably need double the quantity of steroids I would assume - or a steroid shot in the bum would be better? How are your bloods and esonophils?

[cccourt1942]

what Mat said:  Your inflammation should have decreased by now.  Especially your major complaint--the eyes.  Do you see an ophthalmologist?  Have you ever see a dermatologist?  I know I am seem to be going through the "ologists" but really...if your eyes are your major concern, and that much prednisone hasn't reduced your description...i'd be wondering if dx is accurate...or treatment.  It goes to show you and others each of us is different!
c3

[MAT51]

Yes I agree - has Uveitis been excluded yet? I'm concerned that your eye problem hasn't really been diagnosed yet - unless there's stuff you haven't mentioned here?

[Sharon]

I've been to numerous eye docs, dermatologists and allergists.
I scored a ZERO on the Schirmer's test and take Restasis though it doesn't help.
Nobody could figure out the swelling and it was deemed "something allergic".
I have not been able to get a diagnosis of Mast Cell Disorder (though I have many of the symptoms) since they only have the Tryptase blood test here. In any case I have tried every single antihistamine already but none of them help at all.
My blood shows nothing allergic and neither did prick or patch tests. IGE is even normal-low side.
I would think even in MCAD the steroids would have helped at least somewhat, but I feel worse and fatigued than ever. My eyes hurt from dryness and look inflamed and droopy. I also feel nauseated and terribly weak.
I have positive ANA, RNP, RNP-A and APCA (anti parietal cell antibodies)
So there's no doubt something autoimmune is going on.
I'm at a loss for options....

[irish]

Have they checked blood for immune deficiencies or for any possible genetic issues that could be clouding the picture. My immunologist will occasionally check people for these genetic diseases as they are more prevalent than one would expect and there are literally hundreds of these diseases and they can be so weird in their symptoms. Irish