I am relatively new to this site, having recently been diagnosed with PMR. I have had RA for eighteen years, very well controlled with methotrexate. As I read the posts here, I am somewhat puzzled and concerned by the fact that individuals who are suffering are trying to relieve their pain seemingly by trial and error, increasing their prednisone dose, then decreasing, then increasing again. I’ve had prednisone prescribed when I first was diagnosed with RA, to alleviate severe joint swelling, and years later when I had a stubborn respiratory infection. The prescribing physicians stressed that prednisone was a necessary evil, and the dosage was to be carefully controlled, and decreased very slowly before discontinuing the drug, In my current situation, my rheumatologist has outlined the same approach, a dosage to relieve the symptoms, and then a gradual decrease. I will see him on a monthly basis. From what I have learned about prednisone, I would be quite leery of self experimentation, yet it seems quite common among people contributing here. Why is that? Thank you for the information.
Prednisone roulette: I am relatively new to this... - PMRGCAuk
Prednisone roulette
It is normally increased when someone’s PMR flares, and unfortunately for some people that happens quite regularly…usually because they are being asked to taper too quickly.
As you rightly say a gradual decrease is the right way to go, but there are too many Rheumies out there that aren’t as sensible about that as yours appears to be.
One issue seems to be that because PMR is a self limiting disease unlike RA, then the Rheumy’s approach is different - many seem to think the illness only last around 2 years, which may be true for some, but not for all….and therefore give an unrealistic tapering plan which inevitably leads to a flare which need addressing.
Some more experienced patients have authorisation from their doctors to monitor their illness and to adjust their doses according…..so it’s not quite as gung-ho as you may think.
As a relatively new patient to PMR you might like to read this - healthunlocked.com/pmrgcauk...
In the vast majority of cases here where you see adjustment of dose it is because they have flared as reducing their dose, which we all aim for. Unlike in RA, in PMR it isn't a case of taking a course of pred to manage a flare, reducing the dose to zero on a fixed schedule and stopping, You start on a dose that is enough to control the symptoms - but that is almost always much higher than you will eventually need ongoing - and then you taper, or titrate, the dose to find the lowest effective dose, the lowest dose that achieves the same result as the starting dose did.
Unfortunately many doctors try to reduce the dose too quickly before the excess inflammation is under control or in too large steps so they overshoot: 10mg may be plenty to manage the symptoms, 5mg is not but it could be anything between. So you edge down, if symptoms return, you go back up. But you don't want to stay too high and over time the disease activity will fall away further and you will need less pred. To find out you try another step down. If it works, great - but if it doesn't then you develop symptoms again and have to go back up because trying to tough it out just doesn't work, the unmanaged inflammation will build up like a dripping tap fills a bucket sooner or later and overflows. Then you are back where you started and need more pred. The dose must be raised a lot.
Managing PMR is rather different from managing RA. Pred is our DMARD - and so is used in a different way.
Hi & Welcome 💐
I can only concur with PMRpro & DorsetLady so l won’t repeat what they have said.
You’ll find PMR is very different to RA & if the Forum sounds a bit gung-ho with its view to Prednisolone you really have to dig a little deeper.
I’m a long term PMR’er but generally seek advice from My Rheumy Team if l need to increase & get blood tests to back it up. Many people don’t have that option, l’m fortunate that because l also take MTX I have that benefit.
You may find browsing our FAQ’s informative…
healthunlocked.com/pmrgcauk...
Once again Welcome
MrsN
Thank you to all of you who replied to my question. I am particularly reassured to know that people are not randomly adjusting their own dosages. (I actually live in the “Wild Wild West”, and it sounded like there was a prednisone Wild West.) Your own experiences and the information you have provided will allow me to have an informed discussion with my rheumatologist when I see him in a few weeks. I appreciate your help.
That is interesting information. I was surprised to read that the only treatment for PMR was prednisone. Good to know there is another option. I think PMR treatment is not a high priority, as the disease mostly affects old women (like me). We are not highly valued. It’s unfortunate that you are mixed up with an unpopular crowd! I wish you pain-free days.
My goodness! You are between a rock and a hard place! Prednisone for 13 years. I am sorry for your situation, and I hope your current med regimen provides some help. May I ask why a medical panel had to authorize Actemra for you? Is it an off-label use? Was it an insurance issue? I’ve never had experience with a medical panel.
In 2004, I ate some almonds from Costco. The almonds were tainted with salmonella, and I got very sick. Shortly after, I had swollen joints, and could not walk. Our family doctor, who happened to be a rheumatologist, did blood tests and diagnosed RA. He prescribed prednisone for a very short time, then gave me methotrexate, which has worked remarkably well. I do have some rheumatoid nodules on my wrist, which I plan to have removed, but otherwise I am fine. I have complete blood tests every three months. My current rheumatologist talked about my trying a biologic, but I prefer to keep things as they are. The PMR came on suddenly, about two months ago. I was exposed to covid, and I wonder whether that triggered the PMR. My rheumatologist prescribed 10mg prednisone, and my pain is gone right now. Have you thought about choosing original Medicare, and keeping the VA for medications and routine visits? Of course you would have to have the premium taken out of your Social Security check, and perhaps would have to pay back past premiums for the last two years, but there is so much more availability and flexibility of care. My husband and I have Medicare, and since he spent his career in the Marine Corps, we have Tricare as a supplement. As we have gotten older (and sicker!) it has proved to be a good choice.
My dosage has been dictated by my doctor.. 5mg daily then up to 10 for flare ups then back to 5 when the flare up is over.. if you take less then 7.5mg then possible side effects are slim.. also your body does not stop making its own version.. above 7.5 your body will stop making its own version and side effects are more likely.. I don't stay at 10 for more then a week, then I do 7.5mg for 3 days then back to 5mg.. I never go higher then 10mg no matter how bad the flare up is.. my mother had pmr and was on the same dosing that I do.. I have been on this dosing for about 4 years. Does my explanation help???
Hi allI'm new to PMR it came on out the blue some months ago? I've just completed a 4 day trial of predesalone to try and establish if it is PMR as my ESR and CRP were in normal ranges. My pain gradually reduced and was gone by day 4 . I've been off predesalone now 3 days and my pain is slowly coming back although at present doesn't seem as severe. The plan agreed with my GP is to have my third covid jab tomorrow wait a couple of weeks then restart predesalone and taper. The trial dose was 15mg for the 4 days. After reading some of your posts Im wondering as the pain was gone completely after 4 days if I should ask my GP to re-start at 10mg and taper from there? Just like everyone else I'd prefer to be on the lowest dose possible. Just thought I'd ask opinions from people who have experience of PMR before speaking to my GP.
Kind regards to all.
Hi, l suggest you copy this reply & make your own Post as it’ll get ‘lost’ & not many people read all Posts & Replies. Kind Regards
MrsN
Most people need to start at 15-20mg to keep the pain away, stay there for a month then start to decrease 2.5mg a month until 10 and then 0.5 to 1mg thereafter usually with a minimum of a month between decreases.
I don't think that is a good idea really. It makes it much easier to reduce if you have cleared out the inflammation to start with and then you have a bit of leeway as you go down. By the time you restart in 2 or 3 weeks I think you are likely to find you are in considerably more pain than now, don't be misled by a few days making you feel so much better. If under 10mg is going to be your end dose you will be able to reduce really easily from 15 but if it isn't, you might find yourself going backwards. Creeping up the dose is always playing catch-up and often end up with you taking more pred than if you go in with a firm hand from the start.
Ditto to MrsNails comments about reposting -and PMRpro about restart doses
I responded really well also and had a similar question, after the fact. However I stayed on 15 mg for 4 weeks to clear out the inflammation. Then my doctor had me taper by 1 mg a week. Which probably horrifies everyone who hears that. However I was fine until I got to 9. I went back to 10 for a couple or three weeks, then thereafter tapered using a dead slow method. I was, therefore, at 10 mg two months after starting pred and down to 3 mg by the end of the first year. You may find, unfortunately, that the trial, followed by a break and then restarting, makes the initial progress a little more difficult than it was for me. There was no break for me, it was seamless. I responded well, the blood tests had ruled out other conditions, so I went directly to daily pred. So, much as you might want to start at a lower dose, it is probably much better to start with 15 again, and taper in the usual way. In the long run "it isn't slow if it works".
I haven’t read all the replies but I will add that many of us have fallen into the reduction trap with doctors that SAY slow reduction, blah blah blah, but when it comes to actuality, they push and force way too quick of a taper which result in flares. Some doctors adhere to the notion that this disease should burn out in a year and by golly if your bloodwork is normal there is no reason you cannot continue to taper. There are more of these doctors out there that you’d expect. So many of us are left to our own devices, trying to successfully taper while maintaining a pain free life!
Thanks for the replies. It appears the general consensus is re- start at 15mg and taper from there. I think the doctor's rationale for the trial and break was to establish if I did actually have PMR as all relevant bloods were normal plus I also have 2 different blood cancers so I guess he may have thought the pain may be connected to one of them. The break was also, I think, for me to have my third covid vac ? With regards not being misled re current pain level I'm under no illusions and am anticipating the pain will return.
Many thanks again for the replies.
Am so with you Dad2Cue. I have found it so difficult to work out what PMR flares are and like you have upped (to 25mg) believing I was covering these fizzings, inflammatory sensations, what could be Mast Cell Activation Syndrome (MCAS) which I have only just discovered, arthritis and of course GERD and inflammation in the digestive tract which is an old pre PMR story. I have a new doctor who is absolutely firm on dropping. As he says, you wouldne't take Steroids for GERD, you are taking it for PMR. And he says that what you can get from long term high steroid use is far worse the conditions I was complaining about. And of course steroids are covering a multitude of stuff one doesn't even know about. I am taking my courage in both hands and have now dropped to 18mg from being on 20mg since back in May this year with various attempts to drop. Am not experiencing much in terms of pain - periodic (which reminds me time to take my daytime 12mgs) taking vit C and other vits and minerals to help with inflamm responses which have calmed a lot now post drop on Monday.
What I find difficult is the fact that we are told on this site that inflammation must be at all costs avoided. To my mind inflammation is the equivalent of a flare so if I find a burning pain in my oesophagus I am translating it as a flare/inflammation. However my tough doctor says no - you wouldn't take prednisolone for an inflamed oesophagus would you? And he is right. So i am grimly continuing - using diet (actually currently all meat for 2 weeks which has helped enormously) and lots of vitamins, especially C, and D. And it seems to be working. Odd outbreaks of histamine reaction, some stiffness but less now in the mornings and red knees at night when I don't take enough vit C. Also less brain fog andmore energy with the meat diet. I was told by someone I was queuing with outside the butcher's this week that a friend had a brain op and was advised to go on an all meat diet to help the brain recover more quickly. Interesting. Now on 18mgs and very pleased (for the moment - which is all we can be!).
The inflammation of PMR - not other inflammation.
Inflammation strictly in the PMR places - shoulders/elbows, hips you mean PMRpro. That was never made clear to me until this very firm doctor took me in hand recently.
Right on!
Thanks for asking that question. I felt the same way. But, because I’m new to all of this, I figured the people on here knew a lot more than I did since they all had the experience. I’m glad I got their view because even though I really like my rheumatologist and he seems to know his stuff, I still feel like he wants me to reduce too quick. I don’t want to go up and down on pred. After taking some advice from here, I’m not going to be so fast on reducing
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