I think I am having a flare.
I am exhausted and I am back in love with sleeping again after feeling less fatigued for the first time in years.
My right cheek is sore to the touch from my salivary gland there. I keep pushing on it and rubbing it hoping to move gunk out and make it feel better but that hasn't helped.
My pain has gone from a daily 3 to a 5 or 6 as the day goes on. I have Tramadol and Gabapentin but that just makes me sleepy and doesn't do much for pain. I also have Tylenol and use essential oils and Tiger Balm.
Does this sound like a flare?
I started PT yesterday to try to help (I asked my PCP for a script for it) and I have a call in to my rheumatologist's office. I emailed him last week about the pain issues and didn't hear anything back so I called and left a message with the nurse today.
If you are in a flare do you take Prednisone? What dose and for how long?
I have only ever taken it for my MS and I took large amounts then, 3 days of 1,000 mg or 1 gram with no taper.
Thanks for any advice or suggestions anyone has.
B
Hi Brooks,
My flares are: Profound Fatigue, total body pain (where ever I have arthritis), and depression I feel like I have the flu, a very bad flu. But no fever. For me I also have burning skin, itching, and tingling, especially my face.
I take Benadryl (for the itching and burning, and to sleep).
I can't keep my eyes open, I can't really read or watch tv. I just sit and stare into space or with my eyes closed.
I want to be out of my own skin.
A prednisone taper for a flare is as follows;
4 mg tablets:
Day 1 6 = 24 mg
Day 2 5 = 20 mg
Day 3 4 = 16 mg
Day 4 3 = 12 mg
Day 5 2 = 8 mg
Day 6 1 = 4 mg
The idea is to have a burst of prednisone and then wean yourself off quickly.
This is what I've had for a severe allergic reaction to an insecticide used throughout my house.
And this is what I've had when I had about 150 Fire Ant Stings on my feet.
When we have any flare it is a sudden increase in the attack mode of our immune system which produces a great deal of inflammation.
It is inflammation that causes the fatigue, pain, depression and other symptoms.
Ask your doctor if he/she would RX a taper dosage.
It really works.
Right now I"m on 2mg of Medrol (like prednisone) but when I had the Fire Ant Stings, it wasn't enough to prevent and horrible flare.
Good luck. Let us know what happens.
Hugs, Elaine
Elaine - I think different people use different flare protocols. I know mine is different. Just wanted to clarify that you were giving was your example?
But the principle you described is the same for all of us.
Quote from: Carolina on July 30, 2014, 10:26:26 AM
Hi Brooks,
A prednisone taper for a flare is as follows;
4 mg tablets:
Day 1 6 = 24 mg
Day 2 5 = 20 mg
Day 3 4 = 16 mg
Day 4 3 = 12 mg
Day 5 2 = 8 mg
Day 6 1 = 4 mg
Hugs, Elaine
re: gland massage.
You can pull up a diagram on the action....I call it an upside down J movement...starting just about the jawline and moving your finger or fingers up to in front of the earlobe and doing the J crook. It does not always actually push anything out of the gland itself, but will smush some of the stuff to relieve you a little bit. Meds for a spell are between you and your physician. Also Brook, I use warm compresses. It will help and you will be tempted to heat the compress a "little" more. I've burned my neck twice!
Hope this is a better day for you.
About the jaw gland pain:
Hi, I just wanted to add to the, "gland massage and heat for the outside of the face." I also sip warm drinks, and soups for the inside help. Sometimes I can barely open my mouth to eat, the pain is so excruciating. I get T. N. too, so it's hard to decide which pain is from which disease. Good luck, SS Lady (Newbie)
Caroline is on Medrol and there are 6 ways to skin a cat with the taper dose of that drug. Most people are on Prednisone and there are 12 ways to skin a cat with taper doses of that drug. Every doc has "their favorite" way to do it. The main thing is that the steroids are used to decrease the inflammatory response by hitting hard and decreasing the dose or tapering down over a certain number of days.
My hubby was on so much prednisone over the past 3-4 years of his life and he was not put on a daily dose until the last 10 months or so. I took care of all his meds and I had permission to start him on his 16 day taper the minute he had increased breathing issues. Many times he would finish the 15 days and in one week he was back on the taper dose again. His pulmonologist said that as long as we could keep him comfortable an somewhat controlled on the taper dose that is what she wanted to stick with.
I have to admit it worked, but it is really a bugger to keep track of. I finally took a sheet plain paper and drew lines on it with the name of the steroid at the top and then on the lines underneath I wrote the date, the day of the week and the number of pill and mom that he took each day. I had them in an individual 7 day container that was well marked and sitting right next to the sheet of paper. When he took the drug he then crossed off that date. This reminded him to take the pills after he ate and I could check the pill box and the sheet of paper to see if he had crossed it ofof.
I did that with his antibiotic also as they were really a bugger to keep track of. This really ended up being a good way to get the job done without tearing my hair out. I also kept the sheets of paper and I could go back and see what med he took when. Oh, I also scotch taped the paper to the counter top so that it would not move and get lost. I did this also with any other new med that was short term cause it was the easier way to make sure. Just a suggestion. Irish
Oh Yes Irish!
We have so many ways also to keep track of what we're taking, and when and how much and how it changes.
I often have to open every compartment of my pill boxes and re-allocate. I fill six boxes in one go! Yikes. Yes, so I have six boxes (with morning and evening sections) which I fill at one time.
Of course if I'm tapering, I'm breaking infinitesimally small medrol pieces into even more infinitesimally smaller pieces.
If I've been told to stop something (not often) I'm removing things. It is a full time job. I keep lists.
Thanks GOODNESS Duke has every medication and every supplement (cross my heart they have them) on a list that takes more than one full page. Just like my conditions take one full page.
One day I'll make an 'image' and insert them here for people to see.
At every meeting the doctors print out a new copy, dated for the day I see the doctor or have the infusion I then carry that four page document in my purse at all times.
You know, Irish, it just becomes a way of life. I don't even think it's odd or a burden any more. Just like I have about three creams, and three sprays I just every night, along with my night time meds.
We are a traveling circus or at least a pretty funny side show. right?
Hugs Elaine
Thanks friends.
I finally heard back from the rheumatologist after emailing him last Tuesday and calling this Weds. and Thurs. The nurse said this doesn't sound like a Sjogren's flare and just to keep doing what I am doing which isn't really working.
I saw my PCP and he thought it might be a flare but he's not willing to get involved because they are so busy trying to work all the angles of my GI problems.
I give up.
I went through this exact same thing last year without a diagnosis and I am officially Sjogren's now after the lip biopsy. I guess I must learn to live with the pain and hope that when I go back to work in a few weeks that I can hang in there.
Sigh...
And thanks for the responses,
B
If you can't have a prednisone taper (or burst or whatever it's called) for the pain,fatigue and depression.
I usually add more NSAIDS, some Benadryl because I have itching and burning skin.
The I try meditation and relaxation although that is really hard to do in a flare.
I take any sleeping medication I have since sleeping, or being 'out of it' is preferable to the flare.
What ever soothes you. If there is such a thing.
It is really hard. I was very lucky to have my Immunologist who prescribed a prednisone taper burst without even seeing me.
It takes time to find the right doctors. Just hang in there.
Having credibility with doctors is a major effort.
Remember I am 72, have an MBA and an Immunologist husband...and I have worked very hard to get to Duke Doctors and to a state of credibility that gives me what I want. Some times.
AND it is partially just plain dumb luck.
Don't give up Brooks.
Describe your flare symptoms to me. That will help me understand what you are experiencing, tho' no one really 'gets' what we are going through.
but I can try.
Hugs, Elaine. You are not crazy or off the mark here...it just takes years to get this thing managed....if ever it gets managed.
H. again