Hello....I am back again and would like some help. Last summer 2021, I was off prednisone for about a year. Could not get off the toilet seat and I knew it was back. I was on 4 milligrams all winter through May, 2022. When I was in Florida during the winter, rheumatologist wanted to put me on an infusion of ACTEMRA once a month to get off prednisone and also insisted I have rheumatoid arthritis, which I do not think I have will all blood levels normal. I told dr. I will try reducing myself. Was able to get down to 1.5 dosage of prednisone slowly. Then the pain came back. Up to 5 mg. of prednisone now and think I need more because my hips hurt when I walk for over a week. Didn't want to call dr. so he would up the meds.
What is your opinion of my situation? I would be happy to hear what you have to say. Thank you.
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cmybabyblues
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If I was OK on as low a dose as 5mg I would be reluctant to swop for Actemra - biologics are heavy duty drugs and they also have adverse effects. There is also no 100% guarantee it will get you entirely off pred - in GCA it only gets half of patients off pred as there are at least 3 different mechanisms which may be involved in creating the inflammation in GCA and Actemra only works for one of them, the others require pred to control the inflammation they cause. I'm not decrying Actemra, I'm on it too, having been stuck at nearly 20mg for some considerable time. My rheumatologists who has participated in clinical trials for both GCA and PMR and he only expects me to get to 5mg and will be satisfied with that.
The hips MIGHT be bursitis due to the PMR but that may respond better to more targeted treatment than just upping the oral pred. And there are other things it could be,
Thank you for your answer to my question. I didn't go on the Actemra because of all the side affects and especially because I have a stent near my intestine. Tonight I had to take another pill because the pain hips going around to my tush hurt when I walk or do anything. After taking a total of 6, I still have pain. This is so frustrating!!!@!
That may ease the hip problem - I have something similar despite being on pred and Actemra. They aren't the answer to everything we develop alongside PMR!
Thank you for your knowledge. I am on 6 and feel ok.. just a little slow. But not limping. I know that prednisone is a very dangerous pill and will eventually do more damage than good.
Oh I wouldn't say that. If it did more damage than good it would never be used for longterm treatment. As we have nothing else, I'm grateful. But I've always been very conscious that I need to find, and then take, no more than the "lowest best dose" to control symptoms.
Can't totally agree with that thought. Most medicines have the capacity to be dangerous if misused, however, Pred is the only available medication for our particular disease so it's something we don't have much choice about. I do know that it allowed me to go from someone who was virtually carried into hospital to someone who is able to lead a relatively normal life so I am extremely grateful for my little white tablets. As HeronNS says "lowest best dose" which controls the symptoms.
I wouldn't go that far by any means - it is a powerful drug yes, but not dangerous used properly. You can't commit suicide with it - you can with paracetamol/Tylenol if you want to and it doesn't take much effort believe me. It saves lives and, in the case of PMR/GCA, sight. And for many of us here it gave us our normal lives back, not perfectly perhaps but pretty well.
“I know that prednisone is a very dangerous pill and will eventually do more damage than good.”
Not necessarily true as others have said -not particularly pleasant to take, but don’t believe all the bad hype about it . No worse than any other medication and much better than a lot!
Saved the sight in my remaining eye after I’d lost the sight in right one -so Pred was my champion.
I don't want to misinterpret....are you staying on a consistent dosage or taking a like one would take a Tylenol to get rid of pain? You have to get to a certain consistent level of almost any med...in your bloodstream...to get relief. I know pred has it's side effects but I lost the sight of one eye and don't want to lose the other. The 'side effects' of that would be much harder to deal with for me and my family. I've been on it for three years plus Actemra...but I can see.👀💕
Hi PMRpro, I think you have a point about my pain in the left hip being bursitis. I forgot I had the same problem two winters ago and was not on meds, Is bursitis part of Polymyalgia? Do I need prednisone for bursitis? I had physical therapy to get rid of thepain two years ago. Now, it is only my left hip. Doesn't Polymalgia work on right and left side together?
It can be part of PMR but each can happen alone. I was given stretches and the local rehab chap is using his favourite toy on it: extracorporeal shockwave therapy. It is good but oh so slow because the waits between treatments is long at present, too much work and not enough appointments. I have had local steroid shots for hip bursitis, oral pred isn't so good, you tend to need quite a lot. If you have a history of bursitis, PMR tends to like to attack your weak spots. Mine starts on one side as part of greater trochanteric pain syndrome because that involves back muscles too. The wait meant it spread to the other side too! Plus the achilles problem probably made it worse as I was walking squint.
I believe you are correct about PMR attacks your weak spots. When I first was diagnosed, I had a hammer toe that become deformed and sticking up in the airI really do not know how to navigate this site, but I found something interesting....your profile. You are from Italy??? My name is Karen and I live in Brooklyn,NY. USA
Not from Italy - I now live here, I was born in England, spent a lot of my adult life in Scotland, had a foray into Germany for 10 years, and moved to the north of England for a few years before we retired and moved here.
I try to answer all questions - and say if I don't know!
====== I understand why you are the "pro". Unfortunately, you have been fighting the dragon way too long. I commend you for wanting to inform people about PMR.And deal with your ups and downs. I am happy that you answered my questions so far.
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