I am so happy I found this chat room. Ty ty! I have no one to talk to that gets it. I've had Untreated PMR for a decade and pred changed my life. I could do things again. Clean, garden, hike, turn my neck to drive etc etc. The lil things I didn't even know I missed. They stopped working about 2 1/2 months though. I built a Tolerance. I was on 12 1/2mg. I'm back to depression and no activity, stretching flares it. Since they aren't working im almost off them. And my Dr. Doesn't want me on them long term. Do any of ya'll build tolerance and how do u get around that piece of taking pred? Ty fellow warriors. Also, my integrative lyme Dr. Diagnosed me. He's a genius im so thankful he caught it bc mis diagnose of fibro the whole time. I'm thinking I should suck it up and go to a rhumo again and they would be more app to longer term pred. Maybe a dose that works for me? Are rhumos more willing to do that usually or waste of my time. I hate going to new Dr.s but I can't go on like this anymore. I need to live life again. 🦋
How would I find a good PMR rhumo so I don't waste my time. I guess do more research to find one.
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MommaLibz
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I know there will be people along with more knowledge and experience to advise you fully, but I'd just like to pick up on your comment; "They stopped working after about 2½mths though. I built up a tolerance".
I may have misunderstood so apologies in advance if I have, but if you have PMR, the steroids don't stop working and you don't build up a tolerance to them. What's actually happening is that your dose has dropped below the amount required to control the inflammation in your body that's being caused by the condition.
The steroids don't cure the condition, they merely reduce the inflammation whilst the PMR remains active.
You have to reduce the dose very slowly and if aches, pains and stiffness return, then you know you've either reduced too quickly or by too much.
Please look at the FAQ'S section where you'll find lots of information to help you understand better both the condition and the medication.
I just assumed I built up tolerance the pain was so bad after a couple months of no pain on them. Seems like I needed higher dose at that time. I'm so new to this. Ty
It is a little bewildering when you're newly diagnosed and takes a little time to learn what's useful to know. Don't worry...we've all been there.
I think as Pro has already said.... either you haven't actually got PMR or you've possibly had a flare and need to increase the steroid dose.
Even if you've felt well for a while on a specific dose, you can still experience a flare, if for instance you experience a stressful time, or become ill with a cold, flu, etc or over-do things. All these sorts of things could cause that current dose to now no longer be enough.
Talking to your medical practitioner would probably be a good idea under these circumstances though.
Following up on what Kendrew says I think it would be helpful to know what your original dose was and whether/how much you had tapered it before it before it became less effective.
How were you diagnosed with PMR? Blood tests? I am not sure that a Rheumatologist will be particularly happier than a GP to offer you more pred. They tend to be keen on tapering down. It might be worth seeking a second opinion on the diagnosis though?
Hi thank you, my Dr. Been watching my sed rate and like inflammation for a long time and my epstein herpes is always high and that can be a cause of pmr. It's much worse when my herpes is flared. Which is alot it's chronic. So with all those things and my back with shading to hips down legs, stiff neck muscle all over shoulders I had xrays on in 2010 thought they were fractured, then it sits top my collar bone and elbows and wrists if really bad.when I stand up I'm stiff and take minute to straighten up to walk. I feel like I'm having baby contractions around the hips and sciatica I'm a classic PMR. He wouldn't diagnose me if it wasn't he's very careful about that esp with mental health. So my labs and my. Symptoms.
I started on 15 down to 12 1/2 within 2 days shoulders,collar bone stiff neck felt so good I chouldd move my neck. My back is the worst so it took another couple days to get relief from back and hips. But it was life changing. Like my kids never saw me paint the wall, or hike, laundry etc. Then the pain started slipping back. I have bad absorbtion in gut so I'm thinking to low dose. Dr. Said if I get my herpes in check it PMR may feel better and I did that with herbals and medicine and he was right. I'm feeling a little better. Idk just learning. If I don't have to be on them I don't want to be. But the pain gets so bad im hunched over a little waking funny etc etc wanting to cry most the day from all the pain.
I am not sure that reduction from 15mg to 12.5mg in 2 days would have helped. I think that most of us would have waited 3 to 4 weeks to do that. How much are you taking now?
Agree with Seacat30 - a couple days at initial total dose is a waste of time. It’s takes at least 3 weeks, sometimes longer, to get the built up inflammation under control. Then , and only then can you start to reduce -bug sensibly because you illness is still producing inflammation every morning.
From the symptoms you describe would say you are definitely not on enough Pred at the moment
I don't have anything to add to Kendrew's post. There are a lot of doctors who will claim that patients build up a tolerance to pred but I don't believe that. In 14 years on the forums, several, not just this one, and coming across thousands of patients there have been quite a few who at points have needed more pred but none with PMR for whom the pred stopped working. Either you aren't on enough OR your PMR isn't "just" PMR but was a polymyalgic presentation of another rheumatic disorder that doesn't respond as well to pred.
I too had PMR that was untreated for 5 years and pred also gave me my life back. However, also probably like you, I have a form of PMR that is persistent and relapsing - I have had the symptoms for 18 years and it is still there and active. After a period of high stress - Covid and a very sick husband who would have died had I brought Covid home to him - I needed more pred to manage the symptoms and remain functional. It wasn't a "tolerance" of pred, it was increased disease activity and stress that needed more pred to manage it.
Now I am on Actemra and have been able to get down to well under 10mg pred - 6mg was too low so I am clearing up that flare to reassess the dose I DO need.
Your doctor may not want you on pred long term - unfortunately there is a limited option for managing PMR, pred and pred alone unless you are able to get funding for Actemra which quite a few in the USA manage for PMR. In fact, pred isn't half as bad as it is painted and not using it is also associated with problems due to untreated PMR and the unmanaged inflammation.
Either it is inadequately managed PMR or it is something else - either way, you need to see a rheumatologist. Not sure they will be any more willing to use pred but they may get you Actemra.
Thank you all so much. Sorry if I was confusing, brain fog. but my Dr never told me I'd build a tolerance. I totally assumed. I have allot of other health issues so things get very confusing for me and I couldn't research PMR really until now. I had appt. With dr And wanted to learn. He has been around a long time and he knows it all. He's saved my life in 2013 and treats my family for lyme, mold, ptsd, dysauto etc etc etc. So when I told him I thought I built tolerance he Smiled nicely not to embarrass me. I've never been on steriods long term so... He is very slow to tell me allot bc of my neuro Lyme and brain injury. It will overwelm me and my Memory is real bad. . I learn as I go. He will treat me long term. Just started again today. I will learn the. Taper up and down game and hopefully be in less pain. Thank you for your info and compassion here.. u guys made it easier to learn. Since I can't read allot. Dr. Said to text him if I need or have any questions. Bc this is all new to me. ❤️ . I pray u all are feeling well and are healed soon. And keep helping others if u can. 😊
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