(I'm creating a new post since this is a new situation for me, though a continuation of searching for the right med)
Five days on 10mg Prednisone now and...NOTHING! :'(
I feel (and look) just as bad as ever...
I have positive ANA, RNP, RNP-A and APCA (anti parietal cell antibodies)
and an endless list of symptoms attributed mainly to AI illness (and some "hypersensitivity" reactions, not "true" allergies) by doctors from varying specialties.
So there's no doubt something autoimmune is going on.
So why isn't the Prednisone helping any? :o
Any ideas, suggestions, experience would be greatly appreciated!
I don't know why either. However, my daughter with Behcet's and IC was very resistant to steroids. What took one round of steroids for me, high dose then taper, would take three back to back for her. Eventually her rheumatologist said no more steroids since they don't work on her and put her on colcrys instead with the humira.
Thanks Tharrell, never knew it was possible to be resistant to steroids!
This was "pulling out the big guns for me", so I'm shocked.
Maybe I need a higher dosage?
What is "IC" and does a rheumatologist diagnose Behcet's?
IC is interstitial Cystitis which is an autoimmune disease of the bladder. That was her first AI. Her gynacologist suspected Behcet's which was confirmed by her rheumatologist and opthalmologist. She had the classic symptoms of ulcers in and around vagina and mouth plus uveitis with negative blood work for any other autoimmune disease.
Google steroid resistance, it's the way I had to figure it out and then got confirmed by new rheumatologist. My daughter had to stop trying to take steroids, because the doses were getting ridiculous especially since she was only 24 at the time.
Wow, your poor daughter...what a plight!
I still wonder if it's worth tring to raise it to 15mg before giving up on it.
I really have no alternative at this point.
An IV or intramuscular injection may help. I was in a really bad way until an ER doctor hit me with a strong dose of decadron via IV - I was somewhat out of my mind from lack of sleep and little food for about a week, but I'm pretty sure I started feeling relief from that dose within 60 minutes.
Sharon, you could also ask your doctor for a medrol dose pack. It tends to knock my joint pain down real quick. I was actually started at a 2.5 mg daily longterm dose of prednisone. I now am, over time, been increased to 10 mg dose longterm. We are hoping that now I am on orencia we will be able to reduce the prednisone soon.
Well, raised to 15mg Prednisone today and still...Nothing! :o
Medrol packs aren't available where I live, only Prednisone.
I wonder if a steroid injection would be effective if the Prednisone was not.
It would be in my system for a few months either way from what I understand.
Still can't believe the Prednisone isn't working. :'(
Sharon give it some time to work! You are not going to feel much better after one dose. Hmm, no methylprednisolone. My daughter also was given a taper that started at 30 mg for three days, 25 for three days and kept dropping by 5 mg like that till it was gone. One time she was so bad they did give her the steroid shot. Her mouth wath full of huge aphthous mouth ulcers and every joint in her body was screaming. I know some members here have been on higher tapers than that. I know it took a bit for my daily prednisone to fully go to work.
Well, it's Day #6 on steroids in general and even after raising it to 15mg
I feel absolutely no change at all.
From what I've heard from others Prednisone takes effect quite quickly if it's going to work at all.
How long did it take for your daily Prednisone to take full effect Tharrell?
Did that steroid shot end up helping your daughter?
I'm no doc, but really do have to wonder if there is something that is non AI going on or something AI that does not respond to Prednisone.
How did the steroid come to be prescribed, did you have an exam or was it a phone call or e-convo with a doc? I'm just wondering whether a physical exam might prove helpful if you didn't have one.
Hi SjoGirl,
It was a regular doctor's appointment with a rheumatologist.
He was the second rheumy to prescribe them, after I could not tolerate Plaquenil.
I finally decided to take them after months of deliberation since the symptoms worsened.
They wanted a 1 month trial followed by a blood test.
I supposedly have at least 2 conditions going on:
One is autoimmune- most likely SJS they all agree, with positive ANA, RNP/RNP-A +APCA
Second condition is Mast Cell Disorder- though still being (unsuccessfully) investigated
The steroids were supposed to relieve symptoms of both conditions.
So...I'm stumped! :-\
I don't remember how quickly they went to work, but you are right six days should have done something. The shot helped my daughter with in 1-2 days. You might be indeed steroid resistant and your rheumy will have to come up with another plan. The orencia shots that I am now taking for my seronegative ra not only immensely helped with the joint pains, but it also has improved my dry eyes and mouth as well. I hope orencia will soon be approved for sjogren's!
My first Prednisone taper started at 10 mg for 5 days, then went to 7.5 mg for 5 days, then 5 mg for 5 days, and then 2 mg for 5 days. Then stop. That did not turn my flare around and it did not affect my symptoms much.
My Rheumatologist then upped the taper dosage regimen to 20 mg for 5 days, 15 mg for 5 days, 10 mg for 5 days, 5 mg for 5 days. Then stop. That taper regimen worked and got rid of my flares and symptoms.
I am relating this just so you can see that the lower dosage had little noticeable effect on my symptoms and flares and I needed the higher dosage for it to work.
I was using Prednisone only for flares, not long term use. I would not want to use Prednisone for long term use.
The reason I am on Rituximab infusions is to keep me from having to take Prednisone tapers so often. Long term Prednisone use has some very detrimental side effects (osteoporosis, gastric and duodenol ulcers/perforations, metabolic problems, diabetes, adrenal inssufficiency, and many, many more. Most Rheumatologists strive to get people off of steroids as quickly as possible.
I saw my Rheumatologist this morning and she informed me that she is using Rituximab more and more with her Sjogren's patients, and with very good results. She said she has one patient who has tried everything and is now on Rituximab and has been able to reduce her Prednisone use from 10 mg to 5 mg per day with the goal of getting off of it completely. So far, all of us (her patients) have responded very well to Rituximab. Especially noticeable is the marked decrease in fatigue, but most other symptoms have also improved, including marked improvement in peripheral neuropathy symptoms, joint pain, saliva, and cognitive function.
My first rheumatologist was like that, only used prednisone sparingly and that's why within a year I was on Humira. This rheumatologist put me on longterm prednisone and fought me for two years before putting me on orencia. I wish I could get off the steroids now, but I'm having severe setbacks from my recent hip replacement so I need something if I have to stop the orencia.
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. :-\
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
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
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.
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.
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
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.