Dear Sjogren's Angels,
I have been taking Medrol 4 mg daily for about 4 days now.
What are your experiences with prednisone or Medrol? Is anyone on a maintenance dose? If so, how much?
I have had almost constant inflammation for perhaps the last 2-3 months.
Like with Sjogren's, my Immune Disorder can produce a great deal of inflammation which causes pain, fatigue and depression. This is a FLARE.
I have very severe arthritis. My knees should be replaced, but I cannot have the surgery due to my profound peripheral neuropathy. Both shoulders need replacement, but I have not discussed that surgery yet with a specialist. My cervical spine (neck) has been deteriorating for 30 years, I had an MRI last week and I see a surgeon on Thursday to discuss a surgical solution.
With this level of arthritis, my inflammation puts me in agony. Every movement reverberates through my body, I am in a fog of pain. I feel like I'm dragging myself through every day and night.
I finally wrote and called my Immunologist for help and she prescribed 4 mg of Medrol, daily, for 14 days, with 11 refills!
As soon as I took the first dose, my pain and fatigue lifted, and with it the depression.
Should I stop taking the 4 mg and see if the inflammation is gone? I still have pain, even with 4 mg of Medrol, but not like before.
I've never had a flare last so long, and it is discouraging.
I know I'm rambling, but I'm not sure what to do. I guess if there were no negative consequences I would take 4 mg of Medrol forever.
I know all of the side effects of steroids that are possible, and they are terrible. But I can't live the way I felt for the last few months.
Please let me know your experiences and what you are doing, if anything, with steroids.
Regards, Elaine
Caroline, This is really an issue that none of us like to have. I have only taken the Medrol taper dose packs several times many years ago. I have been on Prednisone since about 2006 or so and was given 10 mgm every other day for my Sjogrens at first and my neurologist kept me on it for my myasthenia gravis as a protection I'm case of a myasthenia crisis. This is when one gets so more muscle weakness and the diaphragm become so weak one goes into respiratory arrest.
Anyway, I have been on higher dosages in burst and tapers and when my husband was sick and I was caring for him the stress increased my myasthenia weakness and I had to increase to 10 mgm a day. I have tried to taper down to the 10 every other day and got down to 7 and 10 and had to go back up to 10 mgm again. So, like you I am in a quandary......can't decrease cause the inflammation and pain gets worse. Some of my doctors are upset about me taking prednisone and yet my one immunology FP told me that if I got down to 10 mgm a day she would be thrilled if I did well and could stay there.
So, I have typed a lot of words and I have no clue what I am going to do either. I am sure that I do not suffer like you do but I have pain of many kinds a lot of the time. I think my Adrenal glands have long since quit working much and at my age I think, what the heck.
I know I haven't given you much satisfaction with my answer but I do hope that your doctor can help you sort this out. Also, someone may answer who has had different experiences that may give you some new ideas for treatment. I hope that you can find some better comfort and will be thinking of you as you travel this difficult path. Hugs./ Irish
Oh Carolina, you suffer so, I am sorry to hear that you are again.
First I know just this, it is unwise to just stop taking a steroid. A taper is usually best and your doc is the best person to advise on that front.
Second, I've thought "oh I took that med, I feel better, I'll stop and see how I feel." I learned my lesson having done this several times, now I don't stop until the med is done unless it's having negative side effects. That goes with something I read once about the course of a disease or flare, it typically takes a while to get into the situation, it also typically takes a while to get out of it.
I just started a Medrol pack myself and am already experiencing less inflammation but I'm sticking with the 15 days. Maybe I'll have some lasting results, even if lasting means only until I can take a vacation in a warmer climate.
Wishing you good care by caring people.
Thanks Irish and SjoGirl,
I think my doctor expects me to manage the use of the Medrol on my own.
I'm not on a taper package, I just have 14 tablets of 4 mg of Medrol, in addition to the regular dosage I have at 2 mg every other day. So I added the 4 mg tablets for 5 days, and had the magic relief that made me so happy!.
Last night I cut the night time added amount of Medrol down to 2 mg. I had a reasonable night, and the terrible inflammation didn't return.
I'll take 2 mg at night for a couple more nights, then maybe 2 mg every other night, and then no more.
Then I will wait to see if the inflammatory flare returns.
Always understanding that I take 2 mg every other morning, always, and have for 5 years.
What I was wondering is whether there was anyone who took 4-6 mg regularly for a very long time. I guess that is what you are doing, Irish, because of your MG diagnosis. You need to keep breathing!
And, Irish, you said: "So, I have typed a lot of words and I have no clue what I am going to do either. I am sure that I do not suffer like you do but I have pain of many kinds a lot of the time. I think my Adrenal glands have long since quit working much and at my age I think, what the heck."
And that's exactly what I'm thinking, now.
My adrenal glands are probably ok, since 2 mg every other day for 5 years isn't THAT much (but who knows how any part of my body is doing at this point). I have to try to do what will ease my pain at this point in my life. The key has been convincing my Immunologist that at almost 77 I have fewer long term side effects worries than if I were 40, or 50 or even 60.
I have the same issue with my RX for Estrogel. My new primary care physician doesn't want to prescribe Estrogel for me, because of the concern for breast cancer.
I've been using Estrogel (and other combinations of Hormone Replacement Therapy drugs) since I went through menopause at 41. I have used Estrogel alone for probably 20 years, since I had a hysterectomy! I'm supposed to be tapering off Estrogel now, since she won't renew my RX.
I will have a mammogram this month, to see how I"m doing. I've never had breast cancer and there is no family history. Of course I have almost no family to provide history since my father and mother were only children and everyone in the family I do have died very young, between 59-65 except my maternal grandmother.
At this point, assuming the mammogram is fine, I will seek a different Primary Care Provider if the one I have now continues to refuse to prescribe Estrogel.
I have to pay for my Estrogel RX, which I actually get from a compounding pharmacy as estradiol. No prescription insurance will pay for estrogen replacement therapy for a woman over 65!
I use it to increase my sense of well being, because it correlates with better coronary health, and may help with memory. And because it clearly helps skin tone according to all the research.
Thanks again for all the help with my decision making about Medrol. Of course, now that I feel better, the misery I was in is fading as a memory! It's wonderful that we forget pain once it's gone.
Regards, Elaine
I also have a family history of breast cancer. The only estrogen supplement my doctors will approve is Vagifem. It is a tablet that is inserted vaginally twice a week. I have been on it for years. It has gotten expensive so I order it from Univeral Drugs in Canada.
Katie1111
Elaine,
Thanks for the info regarding estrogen. I too have taken estrogen since my hysterectomy at age 36. I am now 63 and had no idea insurance would not pay for my prescription once I turn 65. Whenever I?ve tried to decrease my dose I get excruciating migraines and extreme fatigue. I am just one of those weird people that still needs estrogen.
Hope you stay flare free for awhile.
Anna
I often think of doing LDP- Low Dose Presnisone for the long term.
I don't know the correlation rates to Medrol, but 7mg and under is considered "low dose" for Prednisone.
I felt and looked my best when I was on Pred though coming off it was heck.
Nothing helps my eye inflammation- only Prednisone.
It's a tough call.
These illnesses fill our lives with such difficult decisions.
Hi Sharon,
4 mg of Medrol = 5 mg of Prednisone
so
5.6 mg of Medrol = 7 mg of Prednisone
I find several things when I do research:
1. Glucocorticosteroids like Medrol and Prednisone are far and away the most effective drugs for inflammation. They work like magic to stop the inflammatory response.
2. Glucocorticosteroids have a horrendously long list of terrible side effects, which is why doctors almost always refuse to prescribe long term usage.
3. If Glucocorticosteroids are taken every other day, the damage from immunosuppression and the damage to the adrenal glands can be almost completely avoided. I'm not aware if there is a reduction in the other multitude of negative side effects.
4. Even in doses of less than 5 mg/day of Prednisone there is clearly a statistical increase in fractures over a very long time (20 years), as well as an increase in many other steroid use related negative side effects. .
5. I cannot find that there is a need for greater and greater amounts of steroid to get the same effect over time. There is no 'dose tolerance' effect that I can find. So that is encouraging.
Perhaps others know more about this?
I have taken 2 mg of Medrol every other day for just over 5 years. That is the equivalent of 2.5 mg of Prednisone, every other day.
I take this dose of Medrol so that I can tolerate my IVIG (every four weeks for the rest of my life). Without the Medrol I have a flare that starts 48 hours after IVIG and continues for several days.
I don't think I could convince my Immunologist to increase my every other-day-dosage from 2 mg of Medrol to 4 mg of Medrol, even tho' I think that would improve my pain I clearly have a level of inflammation now that makes my severe osteoarthritis so painful it negatively affects my quality of life.
I have an appointment with the Duke pain specialist who prescribes Low Dose Naltrexone for me, and Wellbutrin. I will discuss my questions about my inflammation and Medrol.
I would never consider increasing my dosage of Medrol if I were not turning 77 in March. Of course much younger people with life threatening illnesses have to take 'steroids regularly to live.
Regards, Elaine
Thanks for all the helpful info Elaine!
So interesting what you wrote about taking it every other day...doesn't that cause a flare on the day you don't take it since you're suddenly stopping it for that day?
One of the side effects that concerns me is thinning of the skin since my dermatologist warned me that my skin is already thin.
Any experience with that one?
As far as pain- have you tried medical cannabis? Speedy relief and none of the side effects you get with steroids.
Dear Sharon,y
Withdrawal: No, I actually don't notice any withdrawal, day to day, with 2 mg every other day.
I have had withdrawal symptoms after several days (sudden fatigue, faintness, dizziness for about 15 minutes at a at a time) when I've tried to stop the 2 mg every other day. My Immunologist is so worried about long term side effects, which of course she should be.
But she is resigned to the current regimen. And did allow me additional Medrol when I called about this awful flare. She understands that I 'know what I'm doing' (as much as anyone does) and that I'm compliant and careful with meds.
Anyway, I took the 4 mg for 5 days every day, which interrupted terrible flare of Inflammation I was in. I wonder now If I could have stopped the 4 mg after two or three days? I was so exhausted by the flare that I was afraid to stop, but the flare hasn't come back, so maybe I could have stopped earlier?
I'll find out next time.
SKIN: You asked about skin, and I do have more fragile skin, but I'm also a month away from turning 77. I have developed actinic purpura (sun damage purple spots) which occur in my forearms where my skin has been exposed most to sun.
https://www.aocd.org/page/BruisingHandsAndArms
Actinic Purpura occurs because the cells of the skin are damaged by sun exposure and then when there is a scratch to the skin that draws blood, the blood pools into the damaged skin causing large purple spots. They aren't dangerous and painful, but when it first happened it was scary.
It started when I developed Small Fiber Neuropathy which caused my skin to itch and burn, sting and tingle. At night I would scratch my forearms in my sleep, so the purple spots are only there.
I diagnosed the cause, but it was confirmed by my doctor.
Now I take 4200 mg Gabapentin a day to control the worst of the SFN, and most of the purple spots have reabsorbed and are gone.
So, perhaps this has occurred because my skin is more fragile? I also have more skin blemishes on my legs and face, than I had 5 years ago. Again not dangerous.
I'm not fair skinned and have brown eyes, so I've had some protection over the years. I always tanned very easily and almost never burned. And I spent hours and hours in the sun from age 10 on. Not now of course!
Medical Marijuana Medical Marijuana is ONLY approved for epilepsy in North Carolina.
I imagine that will change fairly soon, because the state can make so much money from taxes on Marijuana. But we're not there yet.
Regards, Elaine
Thanks for the info Elaine, a lot to consider.
I also suffer from itchy skin but was told it waas atopic dermatitis.
Such a shame about the medical cannabis...it's the safest treatment for pain.
I imagine you wouldn't consider moving to a state where it's on label for pain issues?