I've been on Medrol since mid-December -Had successfully reduced from 48 mg to 4 mg and was doing well. Reduced from 4 mg to 3.5 mg and have had extreme fatigue, weakness, lightheaded, brain fog, nausea. No signs of PMR flare. Went back to 4 for a couple days, then 6 and still a mess. I felt like I was in crisis on 7/4 and ended up taking 18 mg and 16 the next day! I felt more human and on doctor's instruction, I've been at 8 mg for 5 days but not doing well. Saw Endocrinologist today and he believes I have steroid withdrawal (same symptoms of adrenal insufficiency but is different and not very common?) Switching me to Hydrocortisone - 50 mg (split dose) for 2 weeks and reduce by 5 mg every 2 weeks until I get to 30 mg and we'll reevaluate. I did the conversion and the 50 mg Hydrocortisone is "only" 10 mg of Medrol but I haven't been that high in over 4 months and since I don't seem to be having a flare I hope this is the right diagnosis and course of action. Time will tell. Sorry so long. Anyone have a similar experience?
Medrol to Hydrocortisone for suspected steroid w... - PMRGCAuk
Medrol to Hydrocortisone for suspected steroid withdrawal?
Hello. It’s a bit confusing. So, the Endo said it is withdrawal and not adrenal insufficiency. Did they say what the purpose of the hydrocortisone is instead of just reducing your MPred more slowly? How did they rule out adrenal insufficiency?
When you say you are not doing well on 8mg, what do you mean exactly? Is it possible you were ill with something when it first hit?
Thanks for your message. It is so confusing! I'm still a relative newbie at this. Trying to keep my business going is near impossible feeling as I do. I'm normally very optimistic but starting to feel defeated.
About 3 weeks into my reduction from 4 to 3.5 I had extreme fatigue, lightheaded, nausea, etc. Thought I was run down or possibly coming down with something. Took it easy, never got sick and continued pushing on for another week at 3.5 then bumped to 4, then 6, then felt like I was in crisis and went 18, 16 and have been at 8 for 3 days. Today I could barely walk up the stairs to the doctor's office. Still extreme fatigue, lightheaded, nausea, etc.
Endo said he can't test my adrenals while I'm on the steroid. He said if it was adrenal insufficiency I'd feel much better on 8 mg of Medrol since that should be enough even if my adrenals aren't functioning. Last, he said the hydrocortisone is easier to taper slowly than Medrol. I'm supposed to let him know how I'm doing after 2-3 on the hydro and he wants to see me in a month. I haven't picked up the hydro yet and I only have enough Medrol for one more day. If I don't follow his advice I may need to find a new Endo which is not easy.
What is interesting is that you appear to have needed more steroid to get results at the beginning and for some it doesn’t last 24 hours. To have hit the skids somewhere below 10mg is not uncommon and not surprising. What doesn’t fit is that it took 16/18mg to feel better so perhaps you needed a higher dose than most to have the improving effect. Needing this much may have been why they assumed withdrawal from Pred being the issue.
So say that this is the case and for 8mg MPred is equivalent to you like having much less. Your reaction could be insufficiency. Anyone who is getting insufficiency issues due to the steroid no longer covering daily function, will find they react like you and the only way to ‘re-educate’ your adrenal axis is by being in deficit for prolonged periods. This can take months and requires the person to be careful not to hit a crisis. It is a balance of keeping Pred just low enough but crucially not over-challenging the body. It can be a cruel blow after struggling through higher doses of steroids only to get under 10mg (Pred) and find life feels unliveable.
Running your own business is likely a big deal on top of your other activity/stress you so and I have no answers for that. There is no easy way to get through this period. I lost a year of feeling like a shadow and doing not much in order to keep the Pred dose is low as possible to avoid bumping up the dose just to get through. Doing so just shuts down the adrenals again.
I guess all you can do is try the doctor’s plan. If your PMR is ok they are still doing the right thing to help insufficiency even if they call it withdrawal. The key is how fast they make you reduce and how much you try to force your body to do more than it can right now. The only going against your doctor will be saying it is too fast IF that is the case. Or, IF your PMR comes back that Hydrocortisone isn’t the ideal steroid type.
Have they checked your thyroid?
Thanks for all your input. Interesting things to consider. I too have been very determined to reduce quickly and NEVER increase. Sorry to hear that didn't serve you well. How are you doing now? Sounds like I have so much to learn and I need to adjust my mindset.
When my primary doc first suspected PMR I was started on 20 mg of prednisone. It helped for a day or two and then I was right back where I started. As a result, she told me that it couldn't be PMR. Got in to see a rheumatologist and he said I could be prednisone resistant and he started me on 8 mg of Medrol. Same thing, worked for a day or two and then right back where I started. Then he bumped me to the 48 mg dose pack reducing by 8 mg every 2 days until I got to 16 and then a slower reduction. I had a fairly easy time reducing with a few bumps in the road - until I got below 4 mg.
I was doing well until my birthday weekend. Went out 4 days in a row (dinners, a few drinks, nothing crazy) and on the fourth day I walked 6 miles in the heat but felt fine. I must have over-challenged my body, something I never knew could cause so much misery. The next day I felt horrible and it's been downhill ever since. That was over 3 weeks ago. At first I thought it was my 4 day weekend that caused my decline but after weeks passed with further decline I thought it must be something else. After reading your response I'm leaning more towards adrenal insufficiency than withdrawal too.
Today I woke up with pain in my cheekbones and a bit of a headache. Try not to think about GCA but since I feel so horrid, I am today. I'm going to hold off on switching to the hydrocortisone until next week since I don't want to risk a return of my PMR pain. I'd hate to feel any worse than I do over the weekend.
The last time I had labs was 5/24 while I was feeling really good. Everything was good, including my thyroid. I 'm surprised that no one has ordered any labs since my downhill slide - not my primary doc, rheumatologist or endocrinologist.
Thanks again for all your insight. This group and another PMR group I'm in have kept me from losing my mind!
I don’t mean never increase dose; just to avoid it if it is being done to get a regular pick me up in order to go about one’s life for convenience. The transition period from low adrenal function to a working adrenal axis can mean going through a difficult period when energy is at a premium but you have to keep your cortisol low to trigger the system into noticing it, telling the brain it is low in cortisol and the brain then telling the glands to go go go. It isn’t just the glands that become sleepy, but any part of the process which is why tests don’t tell the whole story but it’s a start. One has to increase the dose a bit if one is teetering on a crisis but the idea of not overdoing it is to stop that happening as much as possible.
I’m ok now. At 4mg my Synacthen test was not great but my 1.5mg it was much much better. The 18 months after stopping Pred was finding out how reliable my adrenal function was in various circumstances. I could be fine on a normal day but given an unusual strain it could be floored. Gradually it look more and more for that to happen.
Generally though, if you have had a bit of a crisis (what you did could well have caused one), extra Pred and rest should have you feeling better, not going down hill 3 weeks later. I am assuming you are not pushing yourself. Is there any possibility that you have had mild Covid; the pain in the cheek bones further down the line made me wonder. However, you do need to speak to someone if you feel you are worsening generally.
Thanks for all the information. I'm happy to hear you're ok now and I hope you'll be 100% before long. I'm learning I need to be more patient and not try to rush my way to the finish line.
I felt like I was getting sick on and off for weeks, but nothing ever materialized. A friend suggested Covid but by that time I was about 12 days into my misery. I took a home test and it was negative but it may have been too late. Is pain in the cheek bones a Covid thing? I'd never heard that before. I hope it was Covid. That would explain everything. I'm not pushing myself but I definitely don't find it easy to slow down and relax no matter how I feel. Nearing 105 today and the next two days and my plan is to stay indoors and try. Thanks again.
Well, twice this year with mild Covid I had a dry sinusitis as did my husband, with extreme tiredness.
Whatever is going on, Covid, low adrenal function, steroid withdrawal, all or other, not slowing down will make likely make life quite difficult. This forum is teeming with go getting lively people who struggle with slowing down. Perhaps it’s partly why we got here in the first place.
From your posts and profile, it sounds like you responded really well to 20mg/dy of prednisone for a couple of days, but then relapsed. Did you stick with that dose for a few weeks to let your system adapt, as is recommended for PMR?
Medrol is a brand name for methylprednisolone, which is about 20% more potent than prednisone. That means 48mg/dy of Medrol is equal to about 60mg/dy of prednisone. That's far more than should be needed to bring PMR under control.
Is the problem with your thyroid hypo- and is it the autoimmune type? What are you taking to control it? Thyroid problems can mimic PMR and drug interactions are possible.
Edit: BTW I can't make sense of the dates in your profile.
I did not stick to the 20 mg as my doctor said to stop. She said if it was PMR it would be working. For 3 weeks I struggled to cope on Advil, Tylenol, muscle relaxers, Lidocaine patches. Of course none of it worked. Then I saw a rheumatologist and started on the Medrol. Yes, the initial was really high and I had one rough ride in the beginning.
I don't have a known thyroid issue and I'm not taking any thyroid medication. My thyroid was tested in November, February and end of May.
Thanks for your reply. Have a nice weekend!
But did you also slow down on the 20mg? It isn't a free pass to go back to normal activities - you have a new normal now and doing too much for that new normal can result in it feeling as if the pred is doing nothing. And for some people there isn't a miracle in 2 days - some need more like a week or even two. Two days simply isn't long enough.
Indeed. After suffering so much pain and stiffness, even a little relief feels miraculous at first. So it's important the patient gives a medication a few weeks to settle down, and for them to work out what they can comfortably do, and what they can't. Some side effects will usually ease off during that period, too.
Thanks for your reply. I'm learning so much more from the group than from my doctors.
I have much to learn. I always ramp up my activity the minute I feel up to it. Often have pushed myself when I really didn't feel up to it. The care for PMR where I live has been lacking. I was given a one page printout on PMR, the prescription for Medrol and told to expect to be on it for a minimum of 1-1.5 yrs, more likely 3 yrs. Thankfully I discovered this group and the Mayo group. Thanks for all you do!
Been there, done that - so we try to share to help others avoid the mistakes. But above all - do try to moderate your activity.
A few days on 20 mg? That really isn't long enough, from all I have read on here. I had to take 30 mg for like 6 weeks to truly get it under control. Just attempting 14 mg as we speak, over a year later. Some of us need more, and also some of us have to split the dose because it doesn't last as long in our systems (it's called being a "rapid metabolizer")
I do realize I am lucky and felt normal on high doses, no physical side effects..now I have the moonface and hair thinning, but nothing else.
I wish I had more advice for you with your actual questions. Hang in there, it'll eventually get sorted out, don't give up
Thank you for your response. I'm grateful for all the information and support. I'm trying to come to terms with the fact that this is not going to be as quick and easy as I hoped/expected. Hope you do well at 14 mg. Best to you in your healing.
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