After 2 days Prednisone feeling good already.

[HIITlover]

I have taken the Pret. for 10 days than 15mg for a week and now 10mg for a week and than 5 mg for a week. Reading some literature from the Royal College of Physicians and it indicates a much slower tapering. I have no or little symptoms after all this time and wonder if it is good to keep the 5 mg for some weeks longer before back to 0.

[DorsetLady PMRGCAuk volunteer]

Hi,

If you have the PMR that is discussed on here then dropping to zero is likely to allow the inflammation caused by the underlying illness to build up again - and you’ll end up back at square one.

However you may by one of the lucky ones who has a different strain and find that 5mg is enough to control it… and if that’s the case then lucky you.

But what do you mean by little or no symptoms?

Your profile indicates that your GP is uncertain of diagnosis and has given you a trial of Pred lasting 4-5 weeks… so follow their instructions- it’s all part of the diagnostic process.

Can you tell us what symptoms and perhaps what went on in your life the few months you had prior to appointment. That all helps to decide if it is likely to be PMR or not.

[HIITlover in reply to DorsetLady]

Hi, I am a runner and a few months ago started feeling some groin and hip problems but after warm-up before my 4 km track run all was fine and this happened the week after similar and also after the 3rd week run but than it became a real problem of aches and pain in the groin and hips and in my legs and neck. Getting in and out the car became painful and the feelings did not go away . I was thinking at that time I strained my muscles and hips by my runs but I felt like a real old man with little sleep possible so i had an xray from my hips as advised by my Physio and went to my GP . He asked to have a blood test done which showed a high of 66 in CRP and he looked at the Xray which did not show any trouble and the blood tests results and decided to have the clinic's pharmacist to ring me and asked if i would like to try the Prednisone.

[DorsetLady PMRGCAuk volunteer in reply to HIITlover]

Okay - that makes sense- to a certain degree… neck not so sure about if just that without the accompanying shoulder and upper arms which is normally typical of PMR. But as both PMRpro and I have said, go with the GPs instructions for now…. And see what happens. But just beware if it is PMR, then you will probably require a higher dose than 5mg ongoing - but good news is, males often come through this condition better than females.

And please keep us informed.

[HIITlover in reply to DorsetLady]

Thank you for your comments and I do agree with you and will see my GP on Monday the 13th and see what adjustments he will make.

[DorsetLady PMRGCAuk volunteer in reply to HIITlover]

If it’s definitely PMR - this link has more info -

healthunlocked.com/pmrgcauk...

[SnazzyD]

Hello and welcome. It looks like the Pred is hitting the spot which is great and will only do so of it is at the correct dose. You are right in that your tapering plan is not normal for PMR and likely your symptoms will come back once you get below what your body needs right now. All the Pred is doing is dealing with the inflammation being caused by your immune system attacking certain bits of your musculoskeletal structure. That will wane in time but very unlikely at the speed assumed by your prescribed plan. The tapering idea is to find the lowest dose that is needed at your level of autoimmune activity. They are guidelines only because the rate at which someone’s disease reduces is variable. Doctors often say 2 years will do it with some being less but most are more.

Ideally you reduce at a rate that doesn’t keep overtaking what you need to avoid yo-yo dosing that tends to see diminishing returns of effectiveness of Pred. What you do need to watch out for is the reduction on pain and the artificial pep you get from Pred (unless it makes you feel off like some) can make you think you can get straight on back to your previous activities. Neither PMR nor Pred are conducive to strenuous exercise and you can end up with issues. This is really frustrating for those who are used to a high level of performance but it never pays to tough it out.

Anyway, others will be along with info and advice.

[HIITlover in reply to SnazzyD]

Thank you for your comments , and yes i do have to learn that no symptoms by a level of Pred does not mean back to training .

[PMRpro Ambassador]

When I first started on pred 15 years ago it was with a similar course to what you describe, 2 weeks each of 15, 10, 5mg and stop - there was no suggestion I DID have PMR as I believed but it was to help me through a business trip to the USA. Within 6 hours of taking 15mg pred I was 70% improved and the improvement continued for another 10 days or so. For the 2 weeks of 5mg I felt fine but within 6 hours of missing that first 5mg tablet I was in bed in tears, in as much pain, if not more, than I had been before. This is actually a way some doctors assess if it is PMR - a speedy response to pred and return of the symptoms in a similar time scale is claimed to be confirmatory.

I had had PMR symptoms for 5 years before that - and 15 years later I still have something going on although the PMR symptoms are well managed on 7mg pred and Actemra/tocilizumab. I didn't get back to 5mg for years and it only lasted a year or so before a massive flare. There are different versions of PMR with different time courses and needing differing doses to manage. Everyone is a bit different.

Just because you feel good at 5mg doesn't mean that PMR will have gone away, it just means you are lucky enough to need a fairly low dose to manage the symptoms very early on. But if that is how your doctor wants to diagnose it, do as he says, It is also possible that you need something above 5mg - it takes a bit of time for the inflammation to build up to a level that causes symptoms and that may not have happened yet.

[HIITlover in reply to PMRpro]

Thank you for your comments, I slowly get to understand the way PMR and Pred works on the body and time will tell how this develops.

[Polygolfer]

dear Hiitlover, Every case is different and only you and your doctor, who have the full picture of your health condition etc. can really recommend and/or decide what and how much drugs you should be taking!

[HIITlover in reply to Polygolfer]

Thank you for your comments and it will be a learning curve in times to come.

[cranberryt]

My story was similar. Started with groin pain and thought I injured something at the gym. Rested for a week. No improvement. They sent me to PT/physio for a month. during that time the pain spread first to my neck, then shoulders, arms and legs. Couldn’t walk, dress myself, get in/out of car without help and it was at its worst after periods of rest. Moving helped. Deep heat helped. I too was put on a trial pack. I was given a second trial pack because my doctor was out of town but I stretched that second one out until he got back and could properly diagnose me and give me a full prescription and plan.

[HIITlover in reply to cranberryt]

Thank you for your comments , it will be a time will tell scenario and a steep learning curve.

[Quag]

I’ve was diagnosed with PMR March of 2022. I was 73. The GP started me on 40 mg of P and then a quick taper (weeks) to 5 mg, and then a slow taper to 2 mg - by the end of the year. My life returned to pretty much normal and I could carry on with my daily activity without much pain or fatigue.

I had a few flares in the 2 mg period but knocked them down by going back up to 7 mg for 7 - 10 days. Finally was able to see a rheumatologist after a year who put me back to 10 mg (because I was still experiencing a lot of pain and stiffness). I was able to taper to 2 mg and then flared again and am now back to 3 mg for the next 3 months.

It’s been a journey and every time I think I’ve got some kind of an understanding of what is going on between PMR and me I get surprised. PMR is a wicked master. It is not a well understood condition, from what I read, and every person presents in their own unique way.

I hope you are fortunate in your prognosis and can successfully quit Prednisone. But be prepared to be surprised.

Best of luck.

[HIITlover in reply to Quag]

Thank you for your comments, I slowly get to understand the PRM and Pred and as we are all different, results will be too. Time will tell .