Prednisone not helping!

[Sharon]

Jasper and Tharrell- I'm so glad to hear you both found treatments which are bringing you relief.
I would love to try biologics but they are not approved for SJS where I live. My blood results are non-specific so every rheumy gives me a different diagnosis, though I have all SJS symptoms, even scoring a zero on the Schirmer's. I put off trying the steroids for over a year, but that's all they'll prescribe me besides the Plaquenil I can't tolerate.

Good to know the Prednisone might be effective at higher doses Jasper.
Gives me some hope for the future.

For now I think I'm going to taper off instead of continuing to raise,
especially since I've just been scheduled for some SOS gastro procedures
so I don't think the timing is right to continue experimenting. 

[irish]

Most doctors will use a burst and taper of prednisone for illness needing treatment for inflammation. This usually starts with 60 mgm for 3 days and then 50, 40, 30, 20, 10, three days each and then off the drug. Every doctor has his variation of this.to shock the system into quieting down. For example, when my life is normal I am on 10 mgm every other day because of my myasthenia gravis. When my hubby was ill my stress level was so high that I had to increase my prednisone to 20 mgm every day. Then I would have to start to taper off 1 mgm every 2-4 weeks to get back to my normal dosage.

It is not good to be on this high a dose, but I am one of those people who don't respond to any other meds at this point. The 10 mgm every other day is considered safe as it is a physiological dose that works well with the body without causing much if any side effects.  Do not panic when you need prednisone but ask doctor lots of questions and do your research.

I am presently taking 1000 mgm of solumedrol (type of steroid) once a month in what is called steroid pulse therapy. This is usually given once a month over a 1 hour period of time. It goes in very fast in an IV and is out of the body fast so there are few side effects. The worst thing is the first 24 hours which makes you hyper and blood sugars go up especially in diabetics. I am getting this for my autoimmune ear disease. I lost my right ear hearing totally about 18 years ago and have lost about 1/2 the hearing  in my left ear. The only treatment for this is the high dose solmedrol pulse therapy. It was scary but not bad when all is said and done.

Sorry, I just like to share some of my experience with the steroids for those who are new to it. Good luck to all. Irish

[gurs]

10mg is not alot...also, I found a huge difference from prednisone to medrol. I was taking 10mg of pred daily for years and my doc added 4mg of medrol to it, and noticed a huge difference right away. You can get the 4mg Medrol from any pharmacy.

Gursie

[Sharon]

Thank you Irish and Gurs for sharing your experiences.
Even on 15mg there is no relief and my joint and stomach pains seem even worse if that's possible.
The rheumy wanted me on a 1 month trial of 10mg but I don't see the point if after a week even with raising nothing is improving even the slightest.
From what you have all written I conclude that the dose may be too low for me to begin with.
I will bring this up with the next rheumy I seek out and perhaps in the future begin a burst with a higher dosage and see how that goes.

[Tharrell]

Sharon, my joints were not responding enough to the 10 mg prednisone either. I badgered my doctor for over a year before she gave me back my seronegative ra diagnosis. That was the only way to get approved for biologics. You may want to discuss seronegative ra with your docs to see if that will get you better treatment.

[cccourt1942]

Sharon:
     I talked with a long time friend today....and all of a sudden I had a thought...about YOU.  I asked him if he had ever recovered from his "condition."  The "condition" came on about a dozen years ago.  It ordinarily subsides.  After we hung up, I went back to find your summation of what bothers you most.  Sharon: Google "facial nerve palsy".  What my friend has is Bell's Palsy.  Over the years I had helped with therapy for two people who had suffered the condition.  As stated, there is almost always spontaneous recovery.  For a person's face continue to droop is VERY unusual.  However, I had not ever differentiated Bell's from "Facial Nerve".  It surprised me when I looked it up: it actually states hypo salivation accompanies it.  I know we are not supposed to be diagnosing...and really don't mean to.  As stated, a condition I'd long ago forgotten..and NEVER associated with Sjogren's.  Since you always go back to your watering eye, the lopsided eyelid....well..it's just too close.  You said this is what bothers you the most.  This answer should be in your other post..but it's been buried now..and this is on top.  Hope this is ok.
c3

[Sharon]

Tharrell- Indeed, getting an RA diagnosis may be the only way I can get approval for the biologics. I don't know if they will give me the dx without positive bloodwork for it, but I will try.

C3- Thanks so much for thinking of me! I've been to neurologists with the eyelid condition, but it has been deemed an "allergic reaction" since there's swelling beneath the eyebrow and the eyelid droops usually after it too has swelled up. The muscles can't seem to hold up under the massive swelling. This happens as the day goes on and the eyelid itself worsens it specific environments. This is why I was also looking into Mast Cell Disorder.
I also complained in the past of what looked like drooping on my face, but that has been discovered to be related to salivary gland swelling. In short, the swelling has been causing the appearance of drooping.