Dearest Angels,
When I saw my Immunologist in December she asked me to taper my Medrol each month. I stay at the full 2.5 mg daily in the week before and the week after my IVIG, then taper until the third week after my IVIG, I am at 2 mg alternating with 1.5.mg. Then I return to the 2.5 mg daily in the week before the next IVIG.
GUESS WHEN I HAD MY FLARE? Bingo. My flare occurred in the third week after my IVIG. And I increased my Medrol to 2.5mg on Friday. Then the flare lifted.
I'm sure the combination of the travel and the taper produced a strong flare. So, mystery solved.
At least in part. We NEVER solve the mysteries of our Immune System Disorders, do we?
Hugs, Elaine
Your doctor seems obsessed with this Medrol...always has been. You have been going back and forth with tapering small amounts (on days when not actually receiving your IVIG) since starting the IVIG. I remember you commenting about this many times and her desire to cut back here and there.
I just don't understand why she's worrying so much. It's such a low dose, and at your age (no offense, really) there should not be concern of 'long term' side-effects...and your bones are strong for your age.
She just needs to let this go and keep you on a steady dose daily so you don't have swings, which will certainly bring on flares.
I would have a frank conversation with her and ask for a steady dose. If she says no, then ask for a detailed explanation and her points of concern so you can discuss each one.
Dearest Anita,
I agree entirely, but I am amassing data to back up my request to continue on a steady dose. And I will also discuss this with my husband, and IF HE AGREES that I should stay on a steady dose without concern for my adrenal glands, I will take him with me to the appointment in June.
If he doesn't agree, I won't take him with me. Since he is a research Immunologist and former Medical School professor, i think his opinion will count for a great deal, IF he agrees. If not, I won't include him. 8)
And for me, Quality of Life is my primary concern. As it is, my Quantity of Life has exceeded my expectation by 16 years. It's all good, but honestly I would 'exit, stage right' without regrets. Well, my regret would be inflicting loss on my younger grandchildren now. Later would be better for them.
But there's never a 'good time' is there?
Thanks for your clear and marvelous advice, Anita.
Hugs, Elaine
PS, my age at 73 is a source of great amusement to me, and not a touchy subject at all. I can't even imagine being 83, but it will all be interesting and surprising!
Glad you came to a conculsion about your flare. Sometimes, it's one little detail and it hits ya with a big Ah Ha moment!!! I hope you can find a happy medium. Steroids are quite the mixed blessing.
How in the world can you keep all that info straight! I got confused
just reading through your taper! Lol
Hope all goes wonderfully at your appointment!
:D :D lori
Oh Lori, I have my schedule on an excel file, and I fill 6 weeks of med boxes at once.
The hardest part is that the pills are about the length of a long grain of rice and flat and about 1/3 third as wide as they are longs. I have to break them in half AND then into quarters. Because each tiny pill is 2 grams, and I take 2.5 grams at the most and 1.5 at the least, so this 3/4 of a pill. Which means a half and a quarter. sigh. They ARE scored in quarters actually, but I use a pill cutter to cut the half in half. Then they pop all over because they are tiny!
I know I have to keep going over the boxes.
And the quarter of a pill, which is like a tiny little bead, is half a gram! AND I can lose them so easily. Which isn't good at all.
But, I'm hoping to get 2.5 daily even tho that means all those all those tiny little quarters of pills.
I do NOT see how most people manage conditions, medications, etc.
And never MIND feeling bad??!!
Hugs, Elaine
Elaine, I hear you about the Medrol and your dosage issues. You know I have a love/hate relationship with it, and trying to wean down was so hard over the last 6 months. Especially now, after my shingles, dental, and foot issues, I added a bit more back in.
I felt better too. Now, I have to try and start cutting down again.
I still cant believe how bad I felt cutting down from 8mg of Medrol to 4mg.
Im glad you figured it out..even the slightest change in meds can affect our health. We have to be vigilant don't we???
stay well sweetie!
Gursie
Dearest Gursie,
YES, we manage our meds so carefully. And I am grateful that I came to all of this beginning at 60, and when I finally was prescribed the Medrol I so clearly knew would improve my QOL (quality of life) I was over 70.
The difference our ages (you are 50 and I am 73) is in my FAVOR! My age plus lack of 'negative factors' for Medrol means I will go to bat for continued higher Medrol with confidence when I see my doctor in June.
You know, we rely upon our Meds, Gursie. And yet when I suggest a Med to someone who is suffering, people often recoil in horror! They refuse to consider taking any med for any condition. My granddaughter suffers from crippling anxiety, panic attacks (she's 19) but her father (my son) and her therapist feel that 'taking a medication' will only blunt her feelings and keep her from 'truly recovering'.
I want to shake them all! But they are in Paris, my son is 50 years old! So who am I to tell someone YOUR age, Gursie, how to manage the health of their child?
So, we KNOW that meds help with so many aspects of the miseries of our Immune System Disorders. Imagine if we tried to deal with the depression that accompanies the flares that are the result of the inflammation of our disorders as if we could 'truly recover' with psychotherapy!
My heart always breaks when women are told they are 'depressed' and should get therapy, instead of discovering and addressing the possibly underlying Immune System Disorder and helping them.
Oh well, I don't run the world, now do I?
Hugs, Elaine