Hello, been on 15 mg since February 18th. I feel 75% better overall..all hip and flank pain is gone, but my neck pain seems to have come back some. I see my GP next Thursday March 30th, and am hoping he will allow me to try 20 mg for week or so (I asked him on the patient portal and he said no, that we will wait to see my blood tests first..although my blood tests were fine to begin with.
I felt the"almost miracle" pretty quickly, so I do think this is the correct diagnosis. We have literally ruled out everything else possible, I have the medical bills to prove it. I am getting worried as I leave on a cruise April 28th, and really want to feel ok, obviously.
I guess my question is, anyone else out there who had to take the 20 mg to get real, true relief? I have read that on here, but would love to hear it again so I can go in there 100% adamant about it to him. I am not small, 5'9 and 199 lbs and don't know if it matters, but logic would tell me it does (that I would need a bit more than say a 105 lb, 5 foot person) to get the desired effect.
Thank you!
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You DID make lifestyle changes to go with the pred? Pred isn't a free pass to go back to your previous level of activity - moderating actions that prod at the PMR is also required.
How much you need isn't entirely related to weight though often larger people do sometimes need more. But if you only manage 75% improvement it is always worth the doctor trying more - and that is what the 2015 Recommendations say - the lowest effective dose in the range 12.5-25mg.
Yes, I basically don't do much. Just putz around the house from the recliner to the kitchen and back mostly. The most I ever do it go to a store for 20 minutes, and that is like once per week. I am very afraid to do anything else, really. Thanks for the quick reply.
Maybe you could do with doing a bit MORE? Gentle exercise is helpful. Before I was put on pred at all I went to the gym every day to do aquafit and the earlier I did it in the morning, the better the day afterwards. I could manage Pilates and Iyengha yoga having done the classes - impossible without. You have to be gentle but exercise of that sort in a WARM pool is very helpful. It also reduces the loss of muscle tone.
ok, I actually looked up the nearest pool where they have a Tai Chi class..maybe I'll try that. I am always stretching the neck and into the shoulder because that is what it feels like I should do for the soreness, but it seems to make it worse, actually. Only thing that helps is lying flat on my back for about 45 minutes. Then is subsides and is lesser for a few hours, until it starts up again. It was glorious not having it for those first few weeks on the pred. Thanks again.
I had serious neck problems at beginning of PMR and also with a serious PMR flare about six years after diagnosis when at very low maintenance dose. I attributed the pain to osteoarthritis both times, but both times pred helped like a miracle. I've done neck exercises for the OA for many years, and continue those (plus a couple more from my current physiotherapist). These exercises didn't help at all, first before I knew I had PMR and then later with the flare. Neck and shoulder issues appear to be one of the key markers of active PMR in my case. Please ask your doctor if you can try the extra pred for a few days to see if it helps. (I have to say in both instances my symptoms disappeared very quickly at a lower dose than 20, but we are all different and you need what you need.)
An important point is how well an individual metabolises pred and I believe I may be very efficient, whereas someone else may only be benefiting 50%, or anything in between. Are you taking your pred with food, but not with any calcium supplement which can interfere with absorption?
Agree with PMRpro that it's a good idea to get some appropriate exercise. You don't want to lose too much muscle strength. Just take it easy and build up slowly and you should be fine.
Yes, I have done all the physical therapy for the neck (got worse each time), went to a muscle guy who tried to get adhesions in the fascia out and spent thousands and drove 1 1/2 hours each way, got better temporarily, but it never went away. The only thing I haven't tried is botox injections in there, but almost no docs do it. Each time I had a medrol pack the first few days I felt like my old self..but as I tapered under 20 mg it came back..hence another reason I think I need 20 mg..at least. Thanks for the reply!
Before diagnosis I was doing more and more exercises thinking that I was just out of shape, because a lot of my pain was just like the stiffness you get after unaccustomed exercise, only it never went away. Sure I made myself worse. Pred dealt with it all, and I was able to go back to exercising and walking without pain.
It was odd, that winter before diagnosis was particularly bad here and I was able to shovel snow, but getting out of bed, even standing from a chair, was agony. I do not know why this was the case. 🤷♀️
If I had a dollar for every pain management guy or gal that said "Have you tried exercise or physical therapy?" Golly gee! Never thought of that! You think I'd be near tears in your office if I hadn't tried it ALL. I have had MRIs, x-rays, PT, trigger point injections, muscle relaxers, painkillers, amitriptyline, you name it...this is the end of the line, Mister!
I note you're in the US. You know how during PBS fundraising they show lots of health-related specials? While I was so ill with PMR I watched that one on "Classical Stretch" and she was so convincing I thought I'd try it. Well, I practically crippled myself! At that point I thought I was dying. And it was soon afterwards I managed to get diagnosed by a new doctor. So I'd almost say if exercise doesn't help or even makes it worse, PMR should be one of the first things for a doctor to think of - although of course they must run the appropriate tests to eliminate other perhaps nastier conditions before confirming the diagnosis.
Agree, I think people (docs and friends, etc) all think you are lying when you say stretching/yoga/ whatever type of PT makes you worse. It's the first thing doctors suggest when you say "muscle pain". And also agree 100% that IF that is the case, PMR should be mentioned. No one knows about it, I saw like 10 different Drs and therapists. I found it on my own by googling "what condition does prednisone make better quickly" after another Medrol pack in 4 months made me feel 80% better overnight in Las Vegas (couldn't walk after flight) and this site popped up, thank goodness. And yes, I thought at that point I had a mass (which they did look for with the contrast MRI) because after ruling out infection and any bone type of condition with an immediate x-ray..that is what the orthopedist surgeon thought, too (a mass near the hip) and then he literally never told me anything again. After I told them my mind after blowing me off, I found PMR on this site and called the GP (again).
When I googled my symptoms I did turn up polymyalgia but when I saw it was treated with steroids I dismissed the idea as I couldn't believe I'd ever have anything which needed such serious medication and promptly forgot all about it. Goes to show how effective denial can be.
To answer your question, I was started on 20mg with only limited pain relief. My GPs put me up to 30mg to get the pmr under control, and that worked. She kept me at that level for three weeks, before tapering down.
oh wow, interesting..Might sound weird, but I have always been fairly impervious to any meds..meaning when others get terrible side effects or can really "feel" it, I never feel anything..whether it be muscle relaxers, a Vicodin, whatever. After previous surgeries they are always amazed how I pop right up with zero ill effects and even after they load me up with things so I can sleep, I am wide awake and 100% normal feeling/acting. Regardless, my gut tells me I need more than 15mg. Thank you for the reply!
I was diagnosed in A&E and had a group of rheumies round my bed by the end of the day. My bloods were so high I was started on 30mg. Still only gave me 70% relief, so I'd never have coped on 15mg.
Thanks, my bloods are fairly normal which I am worried will effect his helping me, but I see 20% have normal bloods..he knows that so I am praying he works with me on this.
Sure appears to be judging by these replies! I knew in my gut 15 mg was probably gonna be too low but I was just happy he trialed it at all..but I have exhausted every other avenue so he did it.
See that is good to know, because I have been taking them all at once at around 5:30 am every morning, wake up fine around 2 hours later (like a miracle compared to when I could barely walk just in early February)- but then around 1:30 pm (right now actually) the neck/shoulder starts getting sore again. And the more I stretch or deep massage it, the worse it seems to get. Thanks!
I had to have 20 mgs as the 15 mgs didn’t mop up all of the inflammation, pain and stiffness. Then I had a great 6 weeks of no issues at all. Then I began a gentle taper, smooth until 7 mgs.
I was the same. 15mg didn't do it. So I took 20mg and also split the dose - morning and evening. After that, relief was swift. I don't suppose that the split was as important as the increased dose
ok, thanks..these answers are all very helpful. I am printing them out for the Doc, I just think they don't know much about this and they cannot see pain like they can a broken bone.
I too started on 15mg end of Feb which cleared up hip and knee pain but after a week shoulders still caused problems sleeping through the night without pain relief. I increased to 20 mg after reading advice on here and that improved to 90% symptom free (enough to swing a golf club). Saw rheumatologist a week later who was relaxed about my self medication decision, suggested I stayed on 20 mg for another week then drop back to 15. I actually dropped to 17.5mg a week ago with no problems and am now dropping to 15 for a month then 12.5 for a month then 10 for a month before my next appointment. Shoulders (deltoid muscles) still have some residual discomfort but doesn’t stop any function. So in a nutshell, 20mg for 3 weeks gave me the kick I needed to feel normal before the taper starts.
Thanks, I remembered you had the same question I believe and we started this around the same time. Glad you have a Dr that is working with it! I pray mine will next week, or I will be sniffing around for a new one. I am printing all of these answers out!
same here, but did not want a big increase…tried 16, a bit better, then 17, which worked perfectly! Doctor advised trying that. I didn’t know this forum existed then!
Thanks for reply..yes this site saved me..I would still be lying here in misery if I hadn't told my Dr about PMR and how it almost had to be what I had (at this point, cleared of all else, even lung tumors they looked for -because one rare one can cause muscle breakdown)
I started on 20mgs and after discussion with doc upped to 25mgs for a couple of weeks before starting a very slow taper to 2mgs now (after about 5years.) Stopped at 10mgs for 3 months on the way down.
I've been on this site for all my 5 years of PMR and as a general observation it seems the patients who have most flares/problems with tapering are those under the closest control by the medics.
At diagnosis in Spain I was given an injection and 30mg for 10 days before dropping. It was a miracle result with no pain in 24 hours. I still need to go to 20mg for 5 days if i have a bad flare. Currently on 13.75mg 4 years later.
Wow, I bet you were thrilled after those 24 hours! My relief in Vegas to a Medrol Pack was in 13 hours (80%), and that eventually led me here after all else ruled out. Thanks!
It took a couple months once I could no longer care for myself to figure out I had PMR fortunately my Dr kept taking blood tests every visit my inflammation markers went from barely high at first to off the charts we started at 40mg within 24hrs I was mostly my old self not until we went to 50mg for a spell did things really settled that was 8-months ago I am currently down to 15mg now dropping 1mg a week I have had a couple setbacks including Covid which stalled my drop in prednisone I totally quit sugar eat a keto diet now please take care I hope your life comes back to you
Thank you for answering me. I am on keto now, too. Wow, 50 mg for you! Shows how different we all are. My blood tests are later today for him to see, but mine were pretty normal (maybe a little high) last month, but I think since he saw every Dr. I had been to and test I had had, he listened to me and trialed the prednisone. I am 75% better, I'd say..and compared to any other thing I have tried, that is a semi-miracle so I hope he rolls with that.
Hello. In my case my doctor started me on 15 mg and my relief was also about 75%. Then we used 20mg of prednisone for 2 weeks and I felt that much more relief. From that point we were able to taper the dose by increments of 2.5 mg until 10mg., subsequently by 1..
I have changed my lifestyle significantly througout the year, including trimming travel and volunteer work..
Thanks for the reply..yeah I don't do much at all anymore, and don't even care as long as I can get this last 25% gone. I too am at about 75% better overall. I am going to suggest 20 mg for 2 weeks like you did and see if he agrees..I already did but he said to wait until my labs are done and I come in the 30th.
My doctor reasoned that going from 15mg to 20mg could get me feeling say 90% relief ( It did ) and then I could know better how I should feel each time I reduce the dose. I keep a journal about specific details of how I feel - like ability to raise my arms, walking distances, pain level out of ten.
My blood tests indicated sharply lower inflammation after the month of 15 then 20mg. It correlated with how I felt.
I think physical activity is important, maybe that’s my personality.
There is a good book recommended on this site: Polymyalgia Rheumatica Survival Guide by Kate Gilbert. Maybe you have heard of it.
Treatment for PMR began with prednisone at 20 mg March 11, 2014, minor improvement; increased to 25 mg March 14, symptoms increased ; increased to 40 mg March 18, relief from all pain in less than 24 hours. Docs had me decrease by 5 mg every two weeks, which caused a major relapse after 6 weeks, on April 30th.
Nine years later, after finding the lifeline of this site, and reducing extremely slowly at .5 mg at a time (realized after struggling to get below 17 mg), I'm at 13.5 mg and struggle with the type of PMR that can flare whenever, and the possibility that my absorption rate of prednisone is only 50%
Wow, thanks for the reply! That is the highest dose I have seen on here for PMR. I am copying and pasting everyone's replies to take in, because it's obvious the collective experiences on here is way more than most Dr. really knows about this.. I am lucky because I "think" my guy is trying for me. Guess I will find out next week.
Hi, I started of 15mg for a few days and my own doctor put me up to 30mg for a week, 25mg for a week then 20mg for a few weeks when I started a slow taper downwards. I was out of PMR pain very quickly.
I know, I am hopeful as he has been pretty good so far..mainly because he saw all the other tests and such I have done and even the obscure ones he ran and sent up to Mayo Clinic.
I started on 20mg of pred at the start, due in part I believe because I was obese and I had worsening PMR symptoms 6 months prior to diagnosis that required mopping up of all that built up inflammation. I also ended up splitting my pred dose (in consultation with my GP) as I seemed to experience morning stiffness when taking just a single morning dose. My pred dose just wasn’t lasting the full 24hrs.
As others have mentioned there are many factors that impact how our bodies respond to pred and our PMR symptoms….and we are all different despite having the same condition. Bioavailability, weight, activity and rest levels, some also say diet.
You will figure it out over time by listening to your body. Sometimes our bloodwork provides clues (ESR and CRP), but not for everyone. Hoping you find better relief soon, especially before your cruise on the 28th.
Yes, at this point I just really, really hope my Doctor goes with the flow that this needs to get to the right dose and such (for me). I am worried he is going to "go by the book" and I will end up having to search for another Dr., especially since my blood work is normal..but to me the fact that I was 75% better quickly is the main thing and the proof I have this. My husband can see the huge difference in me. Indeed, my cruise is with my best friend of 40 years for our 55th b-days. Our trip for hers on NYE was ruined by my PMR. I have told her to not expect me to be dancing much (It's an 80's music cruise!) and that I am not my 20, 30, 40 or 50 year old self anymore and may have to lay down a few times per day to rest my neck.
I started on 15mg, which helped a lot, but after 10 days the GP raised it to 20mg, on the grounds of blood tests, and later on to 25mg, when I couldn't reduce without problems. All the best for your cruise!
Actually my doc started me off on what he called a 10 pack starting at 40mg for 3 days and tapering to 10mg days 9 and 10 then 10mg from then on. I stayed there for several weeks because I came down with Covid my last day of the 10 pack. I finally started the gradual taper over 2 1/2 years to 5.5mg today. There were a few hiccups along the way where I had to go back up a bit even though my taper was gradual.
Everyone's journey is different it seems and we need to do what is necessary to control our symptoms.
Thanks for the reply! I will find out Thursday if he agrees to it..great example of my quandary, I felt great today until about 2 PM, then the neck starts up with the soreness.
Yes, I was started on 15mg and had to increase one week later to 20mg which then started to lower the inflamation. From then on it was a 6 year reduction with flares
Hey thanks..interestingly, I literally just got my new Sed Rate back..and it actually went UP 10 since I started the 15 mg..so I assume he will agree to bump me up this Thursday..kind of relieved..this more proves it is PMR (my blood work was normal before, now flagged)
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