I’m new. So happy to find this forum. I have been dealing with PMR for 13 months. At least it is something that will leave my body eventually. Thought it was going to be sooner than later. WRONG. I am 65 with no other problems. Boom, I woke up one morning and couldn’t roll over in bed., couldn’t get up out of a chair and lying flat could not elevate my legs. Painful to just walk. Running a distant memory. Took five months to get a diagnosis. 20 mg. Of Pred and the miracle happened, I had my life back. At least 75 per cent of my old self. Now, the difficulty of tapering down. At 10 started one down every two weeks. Got to 6 and symptoms coming back. Made the mistake of trying 5 . Disaster as very sick again. Flu like and fatigue along with stiffness , aching. Rheumy put me back to 10. Fourth day at 10 and there’s improvement but not like before. Now I don’t know where to go. 60 per cent of my old self. I do believe walking helps, but if you have no energy easier said than done. She is talking about putting me on methotrexate. I am scared of that as already fatigued and scared of nausea amongst other things. That’s is. Thanks for letting me vent.
Venting , first post . PMR: I’m new. So happy to... - PMRGCAuk
Venting , first post . PMR
Oh dear, you appear to be a victim of the all too common enthusiastic and optimistic tapering plan of a rheumatologist. You almost certainly need a bit more pred for a few days to get this flare under control and then a slower taper plan. I very much doubt that mtx should be considered at this point as your earlier taper had been positive and successful. Trouble is, the smaller your dose the bigger percentage a drop tends to be, therefore it is wise to take much longer at each level to make sure it's going to be enough, and also the amount tapered should be reduced. So a taper every two weeks when below 10 mg was risky in itself. And I understand completely about going a step too far and inducing a flare having done that myself, albeit at a lower dose. From sad experience I advise you to bite the bullet and take a large enough dose to catch all the inflammation, stay there a few days, then drop quite quickly to just above the last dose at which your symptoms were well controlled, then stay there a few weeks before starting a much slower taper. "It isn't slow if it works." Being brave and zapping this flare will help you avoid a yo-yo situation where in the end you take more pred rather than less.
Vent all you like. And now people will make some suggestions that might help. We all know how you feel!!!
Below 10mg you slow down the taper. 1mg every 2 weeks was far too fast, you really need at least a month at a new dose to know it is still enough.
Unfortunately this is a common effect of a flare due to overshooting the dose you are looking for, the lowest dose that gives the same result as the starting dose did, it seems harder to get under control again. Top experts say add 5mg to the dose where you flared - and since you say symptoms were returning at 6mg, I'd suspect that was really 7mg since you were reducing so fast which is a common cause of missing what you are looking for. So maybe 12mg is what you need for a few days and then drop to 10mg and start the taper again. Just slower/
I would resist the rheumy's desire to shove you onto mtx after only one overshoot-flare. Tell her you would like to try again with the sort of taper approach we suggest all the time - and which works for almost everyone who has tried them. This is mine, being used in a clinical study in the north of England:
healthunlocked.com/pmrgcauk...
At the same time look at your diet - if you haven't already done so, maybe cutting carbs, especially sugar many help. Sugar is pro-inflammatory, take it out and it may help. It is always worth trying. Lots of people have found they feel better just with that - and the pred seems to have less to do.
Remember that 20mg gave a much bigger effect but it was way more than you were going to need. 10mg isn't as much more - and it will take longer to clear out the inflammation that had built up. You are also upset at having the flare and that probably doesn't help either.
Thanks, I took my 10 mg. an hour ago , and just added 2 mg. After reading your reply. I know you are correct. I still feel the flare up and need to get on top of it. I will go back to 10 in a few days if I feel better. Quite a shock as I had been doing so well. Even had my calendar marked with a 0 for the end of summer thinking I would be done. I must come to terms with the fact that it could take another year or two to taper completely.
It really isn't a good idea to plan out the future of a taper - you just get down when it doesn't happen. We have all been there at some point.
I am really UP and OPTIMISTIC now , thanks to your reply. Took 12 mg. and a copy of your tapering plan. It makes so much sense and I will avoid the methotrexate. I do watch my sugar intake, but could do even better. You are a pro.
Most rheumatologist I have found are optimistic. I have had PMR for 5 years a was down to 2mg for about 3 weeks and have just had a flare. I went Back to 7mg for 3 days an have just returned to 3mg. After 2 days on that I feel fine, but will have to see if I caught the flare in time. I'm sure you will get along fine by following the advise you are getting on this forum from the experts. Always remember that they are not Doctors or rheumatologist, but I know who I take advice from.
Thanks for your comments. I can’t believe I could have this for five years or more. I actually thought that most people got over it in two years. So slow to diagnose and yet finding out there must be thousands of people that have this too. Wish I knew how I got it, but no one knows. My education is coming from this forum. I guess the rheumy doesn’t want to scare me with how the taper works and the possibility of a long time before free of it. At least we can live half decently with the right amount of Pred. Wish you the best.
I had also had PMR symptoms for over 5 years before diagnosis. I still have pMR symptoms if I don't take enough pred.
A study found that the median duration of management of PMR with pred is 5.9 years - only a third or so are able to get off pred in under 2 years. 40% are still on some pred after 10 years. Really not quite the so often quoted 2 years is it?
The figures of a few years are based on Rheumatologist guidance notes , not the experience and figures compiled from all patients experience , which is probably why they confuse us all , and themselves by trying to taper us too quickly to fit what is written .
The experience and time it lasts is also very different for each individual with GCA or PMR and depends much more on how severe your symptoms were to begin with , what physical condition you were in when the Syndrome began , and if you have other underlying health issues or chronic conditions.
Therefore , it is possible for some patients to get Pred and symptom free in the time quoted by Rheumatologists , but it is equally possible to take much longer.
It is not accepting the possibility of the latter that makes Rheumatologists and GPs make knee jerk decisions on the progress of tapering and adding new medications too quickly to assist those speedy reductions .
Or it gets them confused when all patients don't respond the way they think they should.
A case of , " Computer says NO!"
It would make it alot easier on us all , and make our recovery go alot more smoothly , if Doctors were willing to learn the same Lesson of Acceptance that is recommended to their patients.
Take some of the advice on patients experience that you learn with you to your next appointment .
Ask to follow try following the slower taper method endorsed by patients and the Disease Charity to see if it works for you before beginning on MTX , although tell them you are open to considering add on treatments in the future if the slow taper also doesn't work for you.
Also , politely educating them on what you have learnt from other patients about how tapering cannot always hold to a rigid timetable if it is going to have chance of being successful and quicker is helpful ( print off some more interesting formal documents that you can find links to through many forum posts to show them if it helps).
The reality is that you don't just keep tapering by the calender on a wall but the body clock , and sometimes , when that clock is ticking overtime because of extra stress or activity in your life , or if you have an illness or injury, a new taper shouldn't be started until the clock has had chance to reset again.
Or the taper you are managing to continue may need to take more time , and you might need to rest on that dose a little longer before you start to step down again.
Otherwise , as you have found yourself if you just keep pushing on rather than reducing you end up falling down the knobbly pain snake and having to increase again.
It would help Doctors if they would accept this as a fact of recovery rather than an anomaly.
Think PMR . Think Tortoise , not Hare , if you want to win the race.
Good luck . Good Rant . Keep coming back , Bee x
Hi and welcome
Would say at only 13 months in your Rheumy is pushing you too fast - if she gave you a bit more time she wouldn’t need to be thinking about methotrexate either!
Have read of the link at the end of this reply - then you realise this is going to last longer than your Rheumy thinks.
It still amazes me that Rheumies don’t seem to have moved on yet in respect of the time PMR lasts or the ideology of slow tapering.
Please come back with further questions as and when.
healthunlocked.com/pmrgcauk...
Thanks, I am getting the picture. Not even sure how I ended on this forum during my research, but certainly the best info I have had . So many similar stories . I will taper so, so , slow.
You seem about the same as me. Reached 70, not a days illness in my life. Did all the DIY, gardening carer for my husband, who was partially paralysed in a road accident. I went to bed a youngish 70 year old and woke up an old woman who couldn’t even lift the bed clothes. Started on 15mg of prednisolone got down to 4mg and the pain came back so doctor put me back up to 5mg. I’m due to see my rheumatologist in August. I’m hoping he doesn’t suggest coming off it. It’s given me my life back. I’m hoping to be on it a bit longer then trying to come off it again.
The pred has cured nothing - it is managing the inflammation. You weren't tapering to get off pred, you were looking for the lowest dose that manages the inflammation as well as the starting dose did. You have found it - 5mg. PMR burns out and goes into remission for the vast majprity of patients. But only fewer than one in five are off pred in a year, about a third in 2 years. It might be a big bit longer.
I think most of us know it's not a cure, it damps the immune system to prevent it from over reacting, which means basically we need to come off it by tapering. I think we all need a bit of hope to think that one day we'll be able to stop taking it.
No - my point was that you are tapering to find a lower dose, the lowest dose that manages the syptoms. Life at the starting dose would be great if it weren't for the adverse effects of higher doses. There are 2 aspects to tapering: the first is to find the right longer term dose until the underlying cause of the PMR burns out. Then you wait patiently, always trying small reductions. If you are successful, you repeat the process. And eventually you will get to zero. Only then do you know the PMR has gone into remission.
But no - in my experience over more than 10 years is that many new members of the community are unaware that pred isn't a cure, even some doctors don't know. They think all they have to do is give a dose of pred, in some cases that starting on a higher dose of pred will do the job better, and then stop taking the pred. Irrespective of what happens on the way down. And that when the patient is unable to reduce the dose of pred it isn't because the PMR is still active after more than 2 years but because the patient has failed in some way.
Are you okay on 5mg...?? I went from 20 to 5 and then had to go back to 10, actually 12 . I am finally doing better on 12 and will stay here for a few days , go back to 10 and use the reducing plan from PRO on this forum. It is so, so, slow. I don’t want another flare. Like you said, we have our lives back on the right amount. Last week I could barely walk from one side of the room to the other. Emptying the dishwasher was a big deal. Just not a life . You won’t be taken off, as there is nothing else. They can try to add .
I needed this forum to confirm the fact that I am only keeping the PMR under wraps until it burns out. I kind of knew that as I can tell it is still in there. We just need to feel well with the right amount until then. My great aunt had PMR for 6 years and way back then the doctor said she would know it is gone as she would have wax in her ears again, . I don’t have any wax in my ears so wondered if any truth to this??
Best wishes!!
Okish on 5mg. I did take myself back to 7mg three weeks ago. That completely settled pain, went to 6mg for a week. Been on 5mg for 3 days and ok, although I did have 1 co codamol this morning for a slight pain and the pain has stopped away so far. It's difficult to know what to do. Is better to stop on the lower dose and let the pain killer deal with the rest or take myself back up?? Decisions, decisions. One of my problems is I've been diagnosed with Folic Acid deficiency too and it's difficult to sort out which is that and which is PMR.
It is hard to know. I have access to blood tests every two weeks so I see the CRP number higher when I am not feeling well. My rheumatologist is very caring and phones me at home. I can call her anytime even though appointments are every two months. She has been reducing me too fast but she is trying to get me well again. It is a difficult disease and everyone is different. Even though your appointment is way off in the future you should speak to someone. Start with the dr.s advice and go from there. I am still learning too.
Watching our diets is also important. Good anti inflammatory foods like walnuts , etc. And low carb, no sugar . Easier said than done, but I am back on track there too as pointed out by another forum reader. Good luck!
If a pain killer deals with the pain it is probably muscle soreness rather than PMR pain. I put a gazebo together yester and got help to raise it. I take most of my 6mg at night at the moment and my shoulders and upper arms were painful and stuff this morning (not unexpected) so I took painkillers and it's gone.
Darn, I was hoping to have something concrete to look for, unless of course your is gone. Wouldn’t that be something, ?
I took your advice and feel better already. Scared, but better. 12 for a few days and back to 10 . I love the chart you made available. Thanks.
PmrPro makes the point clearly in her post above. The key to managing this diabolical condition is finding the level of dose that keeps the symptoms at bay. I made the mistake of thinking the steroids at 10mg ( from a 15 start point some 7 months earlier) weren’t working. Reduced to zero then over a couple of months, everything returned...pain, lack of mobility, couldn’t turn over in bed...
It proved, to me, that the underlying disease is still there. I struggled to get it back into control. GP suggested restart at 20 for a week. I did that with no improvement. So, I decided to up to 25mg. It really kicked everything into touch. Not quite as well as the original 15mg hit 12 months earlier, but > 70% improvement and able to function again.
My main point from this horrendous learning curve is that it seemed to need a short sharp shock to kick it into touch again. I told GP what I’d done and she was ok with it. The good news is that I only took 25mg for a couple of days, then 20mg for a couple of days, then 17.5 to 15 over a couple of weeks and now at 10mg and contemplating a very very slow reduction over a year or two from here. I’m not advocating this as a plan, because we’re all different. But I felt I’d messed up and, for me, it was worth trialling a couple of days at the max recommended to see if it worked. It did and I learned a really valuable lesson about how insidious the disease is...it’s opportunistic and ever ready. Don’t let it take hold😀
I have upped by 5mg for a couple of days a few times. PMR just likes to show it's teeth occasionally and you have to show those pred teeth back. I think that people feel better and because it's pain think if pred as just a pain killer type drug. So once the pain goes it's get rid of pred asap. It's like that itch you can't quite scratch......it's shows itself sometimes and other times it sleeps. But once it itches it has to be stratched , but you can't do it yourself. Pred is your back stratcher.
Yes , you are right,. I will be at 10 in a few days and I don’t feel like moving from there as I can live my life quite well there. I plan on moving down about a half a month. I will not allow it to overtake me again. Been there, done that. I am supposed to be going down 1 per two week period. Already tried that and it doesn’t work. I will just tell her wasn’t feeling well enough to move that quickly and try it my way. I should say the way of the majority on this forum. I am happy about this. Hope you will be too.
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