Nervously starting very high dose of prednisone. Too much?

I'm confident someone other than me will contribute MUCH more information and good advice then I can give you.

But, it seems to me, that starting at 80mg-- which is fairly high; then cutting all the way to 20mg within such a short period is......well, not a great idea.

Again, this is my opinion only. there are many folks on this forum who know much more then I do.

FYI, I started at 15mg (which I think is fairly typical).

good luck and keep us posted.

p.s.......46 is typically a bit young for PMR.....but we're all different.

I agree with Lynda, 80mg is a ridiculously high dose to start with and reducing to 20mg within 12 days?? I've never heard of such a dose to 'find out' if it's PMR!! The 12 days goes over the 5-7 days that you can reduce quickly without much, if any, side effects but to my mind reducing from so high to so low over that period of time would make you feel very unwell! Generally starting at 15mgs can give that 'miraculous cure' effect and if you get that then yes, it's PMR, but then sometimes it takes a few to get the effect. You need to talk to your psychiatrists PA (why are they diagnosing you in the first place, are they a doctor?) and say no to that dose and yes to 15mgs, but also you're a bit too young for PMR, not unheard of but rare. Your pain wouldn't be typical of PMR to my mind, the hip Burstis for 10 years puts you way below the PMR age profile, and whereas your hands can be affected, it's generally the larger muscle groups and is bi lateral. Also what did the massage therapists mean by trigger points? if they were tender, they'd be obvious points for tenderness from stress or bad posture. I've had carpal tunnel surgery and the pain is in your hands and not in your forearms, typically all the fingers except you're third finger and half your little finger if memory serves me, recovery is 6-8 wks. Good luck but to my mind I'd be saying no to 80mg!

PMR starting dose is usually 15-25mg. If the GCA is suspected then the dose is higher 50 -80 or sometimes even higher. Having said that, your symptoms are mixed and not typical for PMR. It would be better to start at 20-25mg and keep it at that level. If PMR you should see significant level of pain reduction within several days and certainly less then a week.

Hi nicole320

I would wait for your blood test results. If your ESR and CPR markers are high then yes start prednisolone but no way start on 80 mg 15mg is the normal starter dose and usually 40mg if GCA is confirmed...

Thank you for the information. Of course, I didn’t give all the information about myself. I know I am young for PMR, but I have been under a great amount of daily stress for 10 years. When I was 36, my 37 year old husband was diagnosed with a malignant brain tumor, had 2 brain surgeries, one left him with several mental and physical deficits from a stroke during surgeries including the inability to use his left side. Our kids were 4 and 7 when he was diagnosed. He is a miracle because the doctors said he only had 6 months to live in 2011. So, basically I’ve been a single mom, I’ve homeschooled my kids, taken care of every parental and spousal responsibility for 10 years by myself. Now at 46, I’m raising 2 teenagers (one of which I butt heads with every minute of the day) alone while my husband sleeps all day and taking care of him, as well. I’m not exactly sure what role stress plays in any of this, but I certainly have it.😩

June 2018 I went to my family practice physician because I was having a Charlie horse like pain in my upper abdomen under my ribs. She assured me it was muscular and not to worry. She told me to start a walking program. I did. Three days later I was in tears from the pain in my hips. I decided I was going to spend the summer stretching my hips and glutes every day. By August, I couldn’t take the pain anymore. FP sent me to the sports medicine walk in clinic. They did xrays of the hips and everything looked fine. I left with steroid injections in both hips. They helped for awhile. In April 2019, we had a friend clear off a lot of brush from our 2 acres. I worked so hard outside. By May 10, I called my doctor again about the swelling and pain in my hands. i still had hip pain. She sent me again to the sports medicine walk in clinic. Xrays of my hands looked great. No signs of arthritis. They did bloodwork to check for rheumatoid arthritis. It came back ok. He started me on oral prednisone 20mg per day for 6 days. First time my fingers didn’t look like swollen sausages. I remember I felt good on the prednisone because my whole family went bowling and I refused to bowl because it was my last day of prednisone and I didn’t want my hands and hips to be hurting from bowling. The sports medicine doctor told me to see their hand surgeon if the pain came back. The pain in my neck, shoulders, forearms and hips were bad again in August but I also developed painful trigger finger in my middle finger. I went to the hand surgeon. They gave me cortisone injections in both wrists and at the base of the middle finger. Those only helped the trigger finger (which now came back last week). Sent me for an EMG which didn’t show anything significantly abnormal but since I’ve tried everything else for carpal tunnel syndrome, surgeon wants to do surgery on the wrists plus the front of the elbow since I have forearm pain.

The PA yesterday is trying to help me get answers before they start cutting on me for no reason. in my state, a physicians assistant can do everything a doctor can do except prescribe controlled substances.

So I’m not going to do her dosing schedule of the 80mg starting dose, but since the 20mg did help in May, I would like to start the prednisone. What is the normal dosing to confirm a diagnosis? If I understood her explanation, she said the ultra high dose of prednisone would confirm PMR because prednisone is the only thing that will take the pain away and we would know within the first few days while waiting on bloodwork to come back. She could then adjust the dose.🤷🏻‍♀️

I'm sorry but that is a ridiculously high dose for a suspected diagnosis of PMR and no, you shouldn't take that much. The recommended approach for using pred as part of the diagnostic process is to use 15mg, at most 20mg, for a couple of weeks at most. PMR is felt to be characterised by responding to a MODERATE dose of pred (up to 20mg). If they use such a high dose as she is giving you then a lot of other things would respond too - so you don't have the characteristic response as a building block in the diagnosis. Nowhere in the medical literature would such a trial be suggested.

The reduction she is suggesting would be OK but it simply isn't necessary and exposing you unnecessarily to a high dose of pred which won;t actually tell her anything.

She may find this paper useful:

http://www.rcpe.ac.uk/sites/default/files/quick.pdf

It was written expressly to help non-rheumatologists diagnose and manage PMR better.

The PA has it entirely the wrong way round - a very high dose WON'T confirm the diagnosis, it will confuse matters further. A much lower dose also won't confirm it but adds to the information in making the diagnosis.

I'm really not sure that you are a typical PMR presentation - especially your mention of "sausage fingers" suggests another form of inflammatory arthritis which can present looking very like PMR. I think it sounds as if whatever you have is mixed up with something called myofascial pain syndrome - which typically forms the knots of inflamed muscle fibres in the large muscle groups. If a much lower dose of pred works then that is a start. But I wouldn't take that sort of dose unless I had suspected giant cell arteritis which threatens your sight and for that you need expert care from a rheumatologist. Not anyone's PA.

Glad you took the much lower dose. Don't taper from that, except maybe as Eileen suggests, to try 20 mg. You would need to stay at that starting dose at least a week to make sure it has the desired effect. It's always best to stay at least at 15 for about a month to six weeks and then start a very cautious taper in small steps to find the dose which continues to relieve the symptoms - assuming that the trial first week did help and the PMR diagnosis is confirmed.

Hi Nicole,

you sound like you have indeed been through alot. I am 48 years old and had kept myself fit until i woke up middle of last year and couldnt move from the pain and stiffness. Like many others on this site with their advice, I would suggest you start around the 15 - 20mg level as you were at this before and it seemed to help. I would also stagger the times of when you take this...if you have the 5mg tablets, i would suggest that you take 3 x 5mg tablets at your normal time but leave taking 1 x 5mg until late in the evening.

There is a chemical reaction whilst you sleep around the 4am time where the inflammation and pain triggers begin, so for me it was helpful to have this blast of Pred so it was relatively new into my body at this late evening stage.

It looks like you have listened to the advice offered, you dont need to be at the 60 - 80mg level of Pred, so best of luck with getting these symptoms alleviated from the Pred and get some normality...or at least pain and stiffness free would be welcomed i am sure.

All the best,

Andy