Relapse into right shoulder pain

[julesster22]

I am consciously trying to ween myself off prednisone since I’ve been on it since 2017. I was visiting my mother and forgot my meds, I used these two days to stop meds. Not the smartest plan for my life or my pain. I went 2 weeks off steroid and now have a frozen right shoulder that is so painful it brings tears to my eyes to lift it. I’m right handed so this makes my day to day a little trying. I have since gone back to 4 mg of steroid and waiting to see if I need any more. I feel foolish doing this to myself and feel all 63 years old every morning trying to get out of bed and get dressed. If anyone sees this post please let me know if what I am doing is correct for me. I have a wonderful doctor that is an internist and she always helps me and gives advice. I just went in for blood panel, high cholesterol and borderline anemic and prompted her to diagnose for iron and Vit C.thank you in advance for blessings and thoughts!! 😌@

[DorsetLady PMRGCAuk volunteer]

is it a frozen shoulder or a return of PMR?

We do often suggest that if patients have a return of pain after coming off Pred, they try 5mg for a week or so to see what happens.

As you are trying similar, then it’s just a matter of wait and see really.. if it doesn’t seem to help after a couple of weeks, then it may be just a frozen shoulder- and alternate pain relief might be required…

But as you have already started Pred give it a chance first …

[PMRpro Ambassador]

You haven't told us what dose you were at when you chose to go cold turkey so I assume it may have been 4mg? If so, you are likely to need more than 4mg to clear out the accumulated inflammation. The usual approach with the flare protocol is to add 5mg to the dose at which you flare - to allow for a decent clear out - and drop back to the former dose after up to 2 weeks.

However - you really were taking a big risk just stopping pred when you were still at 4mg. That is a dose that is plenty to suppress the production of cortisol by the adrenal glands. Cortisol is essential to life but while you are on pred it replaces it for day to day life. You could have developed an adrenal crisis - which potentially can make you very unwell, requiring hospitalisation and possibly time in ICU. If you are unlucky - you can even die.

[julesster22 in reply to PMRpro]

I was just on 1mg a day, thinking I was close to going cold turkey

[PMRpro Ambassador in reply to julesster22]

OK - phew, that's a relief!! But as you have found out and like many others before you, 1mg can be plenty to keep the inflammation below a level that causes symptoms. This is a flare like at any other dose where you overshot - and you will almost certainly soon be back at 2mg or so which is a low dose and one you can really take your time reducing from.

[GrandmaPirate]

Going back to 4 mg prednisolone seems not enough. In my case, when I got a flare, my rheumy switchen the dosage to 8 mg /day and then very very slowly we diminished again but only when pain free.

[Ruins67]

I won’t add to the comments given below re. PMR as PMRPro and DorsettLady really know their stuff. You do have my sympathy if it’s definitely a frozen shoulder and there is a difference. Your doctor may have told you that the chances are high once having one frozen shoulder that you may get another on the other side later on in life. . I had a frozen shoulder on both shoulders. I can only describe a frozen shoulder pain as absolutely excruciating like a red hot poker going up your arm. It will make you cry out in pain if gently knocked. Indeed, I very rarely went out when there was a possibility of crowds as I was so conscious if anyone nudged it at all it would be so painful. However, there is light at the end of the tunnel with frozen shoulders and quicker than PMR. Usually a year to two years at most. I found acupuncture helped my second one a lot as I wasn’t allowed a steroid injection due to a problem with my eyes. To have PMR and frozen shoulder you have all my sympathy. But keep doing the gentle exercises recommended and keep gently pushing the boundaries to extend the mobility once it starts to unfreeze. Good luck.

[julesster22]

update:

I got in touch with my doctor and she prescribed the 5 mg so I can add that to my to get the pain under control. Hopefully with the elevated steroid I can get my pain back under control. It’s just crazy that it’s right at holiday season But I will get Thanks for all your good wishes and information. I appreciate so much.

[DorsetLady PMRGCAuk volunteer in reply to julesster22]

Good, let’s hope it works for you… as for ’It’s just crazy that it’s right at holiday season’ - sounds absolutely typical to be honest.

[Hidden]

You have my sympathy. I had two frozen shoulders, one after the other. The pain was brutal, especially at night. I moved into the spare room as I would wander the house at night crying and getting tea and painkillers. I did have a steroid injection each time which gave some respite. All a distant memory now.

[julesster22 in reply to Hidden]

How did it take to arrest the pain?

[Hidden in reply to julesster22]

The injection, almost straight away but not totally. Much better though for about 3 weeks then it crept back.It's a cruel condition but it went in the end with physio.