Hi
I’ve had a few comments re my post ‘Omg Prednisolone’ telling me that getting to 0mg in 18 months is somewhat rapid. I was wondering if there are any other members on the forum who managed to achieve this, how long have they been at 0mg and have they had any set backs?
It is quick but not unheard of. Only time will tell and unfortunately, interesting though it is, other’s success or not can’t predict yours. I’d say, if all is well, great! If problems creep in, don’t ignore them or persistently explain them away and pounce early. So, ride off into the sunset but with Pred in your back pocket. Good luck!
As we know, many people who have a straightforward journey with PMR - a. don’t need help from this forum, and/or
b. are apt to leave forum once they have recovered….
….not all I know, before I get an avalanche of people saying ‘I’m still here”….
I’m not leaving just yet as I have only just arrived at 0mg and as mentioned in my post am very aware that I could encounter a relapse. For now happy to be where I am and hopeful.
Good….please hang around, it’s good for any patient, new or not to hear success stories.
Sometimes it seems all bad news, and we “oldies” know that’s not the case, so any reinforcement that there is life after PMR (or GCA in my case) is important.
Good luck.
It is thought that about 20% of patients are able to get of pred in under a year - and a third of patients are off pred by 2 years. If you are one of those, then it isn't "too fast" and as long as you have been tapering and NOT having problems it was obviously fine for you. It is when an attempt to force a reduction is made and it leads to a flare that you have to consider the reduction is too fast, either in too large steps or with too short intervals between drops. If your target "lowest effective dose" is low, something you don't know until you get there of course, then the tapering will usually go well whatever you do at the start. On the other hand, if the disease activity remains higher and falls off more slowly, then tapering will also be harder.
The research group I am part of, is all of the opinion there are different versions of PMR and they are distinguished to some extent by the tapering process. Some struggle to get things under control from the start, others do well initially but get stuck at lower doses and yet others just taper away and have no problems. It does help when you identify which version you appear to have because it does help recognise when you are running into trouble.
I have a few friends over the years who were off pred in 2 years for both PMR and GCA. And to be honest - I bet a lot of the "that was awful fast" cries are from people who are just envious it isn't them!!!!
Thank you very much, Liby57! I was just about to ask whether anyone ever recovers from PMR, given that many of the posts refer to very long-term illness. I now have renewed hope that my rheumatologist’s timeline was accurate. I am happy you are better.
The average time is 5.9 years, but some go into remission within eighteen months and others still have PMR after thirteen years or more, just hope you are on the eighteen month side!
I read the report of the UK study mentioned by Dad2Cue: large sample size, 26-year time frame. Median treatment time was 15.8 months. Those results give me encouragement.
The shoe that fits one person, pinches another. Unfortunately there is no one size fits all and that’s the same for PMR/GCA. Everyone is different and some will take longer than others to recover. I am hopeful that I am in remission and feeling positive right now but appreciate that remission isn’t guaranteed. It’s early days yet , only 6 weeks.
My Rheumy probably read the report with the average time was 15.8 months and either hasn’t read or doesn’t accept the 5.9 years. I’ll be bringing him a copy for my next visit in 2022.
If I hear his comment that should have been off Pred in 2 years (will be 3 this June) I’ll either scream or beat him to a pulp. Seriously, I indicated to my GP I may be begging her to take over and let me continue since literally following the 10% rule and using 0.25mg drops I faring well. She said lets wait and see, doubting the Rheumy would refuse refills at such a low dose and I am progressing.
The trouble is just because they think we should be off pred in two years the PMR may not agree!
Thank you. There is no set time line, everyone is different. Listen to your body and go at a pace that is right for you. the very slow taper especially at lower levels is really important. You will get there.
Are you at zero pred. And no symptoms, no inflammation at all????
Yes I am at zero, had a couple of minor twinges at first but these were tolerable and thought to be withdrawal symptoms and for now these have disappeared so I’m feeling fine at the moment. It’s early days, I have only been at zero for 6 weeks so far.
I have been off prednisone for six months, I still have inflammation in my body, which my doctor says is not aPMR, she explained it as prednisone does a great job, but it also masks other conditions, so you have arthritis which causes inflammation and so now I am dealing with that with diet and exercise, for the most part quite tolerable
How long were you taking Prednisolone for. I do have muscle weakness but I saw rheumatology nurse on Tues and she has recommended physio and suggested swimming etc. also more bloods tests to check how things are progressing. I don’t have RA.
I've received the same advice, lots of water to flush out the anti toxants and inflammation that goes along with that. I generally feel achy and stiff and I go to physio and massage therapy. I had PMR for 24 months. I'm still on a waiting list to see a rheumatologist , no one seems to be taking on more patients at this time. Still attempting to adjust diet, best one for me would be vegetarian, but cna't quite get there.
Does the massage therapy help? I was thinking of trying that myself but wasn’t sure if it is too soon.
I have been quite lucky getting to Rheumatologist this year, it is a postcode lottery I think.
I must admit it is difficult to avoid all those things that taste good but are not good for you. I bought The Anti-Inflammatory Diet slow cooker cookbook by Madeline Given and the easy Anti-inflammatory diet by Karen Frazier which are both quite good and easy. My muscle weakness is my problem, I don’t have much strength in my arms at the moment but this will improve with physio and exercise.
Yes, massage helps, my massage therapist is excellent and she tells me when she notices swelling or very warm skin indicating inflammation and when she does she lessens the pressure, so it’s a very soft touch. I will check out those cookbooks, the one I bought was not good at all, just wanted me to have a smoothie. My friend has doen the “ideal protein diet”. And has had remarkable results, loss of weight and inflammation, but have been unable to find a recipe guideline for that, she did it through a program, I’m just being frugal, but may have to go that route. On another note, I did find keeping busy helps the body heal, we built a house during my last year with PMR, good accomplishment considering I’m 68 and my husband is 78…
Hello 3 years ago I was diagnosed with PMR. ESR rate 28 started on 20mg steriods I managed after 14 months to be 0 steriods. I was 0 steriods for over 13 months then it suddenly came back my ESR 54 new GP started me on 15 mg steriods now 9months on this new journey down to 5 then 4 but pains returned back to 5. My greatest problem has been terrible sadness sometimes I feel hopeless with tears this has been the situation on both journeys. On 5mgs till after Xmas then a review. I wish you well on your jouney.Take Care Sauntergirl
HiI’m so sorry you have had a relapse but 14 months to get to 0 seems incredibly quick. Did you really feel ok at this point with no symptoms at all? I arrived at zero at 18 months which I’m told is also very quick. I’m aware I could have. relapse but am hopeful. I had terrible side affects from Pred at the higher does i.e. 20mg to 7 mg. I suffered with terrible anxiety, depression, headaches and was very tearful, For some the side affects are terrible but these do get less as you reach the lower doses. Have you told your GP how you are feeling? You also have many friends on this forum who share your experience and know what you are going through and will support you through it. It certainly helped me knowing that I am not on my own. I wish you well, you will get to zero again, take it slowly. 💐
Hello thanks for your reply. Yes I felt very well when I reduced to zero I had no symptoms at all. I really thought it was all over not realising that this illness could come back. During those 14 months I was very good with my diet ate maximum fruit veg no red meat plenty of fish almonds and brazil nuts. Drank 8 glasses of water a day. Managed to keep fit by sequence dancing and plenty of walks. I put no weight on. I have not been as good this episode we have moved house into a bungalow which needs renovation not ideal all round. I have reduced this morning to 4 I really want to try and get back to some sort of an ordinary life. I wish you well and everyone on their journeys. Sauntergirl.
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