Hi, just joined up. I'm coming up 48 and my GP has recently diagnosed me with PMR. I've had pains now since May 2021 so been 2 years of pains, scans, bloods, ultrasounds, pregabelin. The ultrasounds showed up I have calcification and bursitis in both my hips (trocherantic) and both shoulders. I've been on prednisone now 9 weeks starting at 30mg (now on 27mg). Have been taking liqourice root and tumeric supplements the last 3 weeks also. Has anyone else been diagnosed under 50? Its been 2 years of constant pain basically which isn't greatly improved still. The prednisone has helped with the overall aches in my shoulder area but am still getting the rest of the body pains. Nights are the worse with waking often in pain. I walk my dog 30 mins daily so still exercising tho holding a wayward Labrador leaves me sore but I refuse to not walk her. Any advice greatly appreciated. Thanks
New to PMR: Hi, just joined up. I'm coming up 4... - PMRGCAuk
New to PMR
Welcome to this forum, although I'm sorry you have PMR.
I assume you are in North America as you say prednisone? There will be lots more people along when Europe and Britain wake up. And although 48 is on the younger side it is definitely not unheard of. It's a bit concerning that even at 30 mg your pain is still troubling you. I'm sure more experienced members will be able to offer some advice - and share their own experiences.
Must point out, however, that liquorice should not be taken at the same time as prednisone. It may lead to increased blood pressure when taken in conjunction with prednisone.
Turmeric has known anti-inflammatory properties and I think quite a few people have taken it. I never took turmeric, but used to have a cup of ginger tea, made with a teaspoon of freshly grated ginger, every evening, and it seemed to help. Ginger being related to turmeric of course.
Hi, thanks for your reply. I'm in NZ actually and I've alerted my Dr that i am taking liqourice root. He didn't make a comment either way. I'm only taking 1 a day at night do a 10 hour gap between that and the prednisone. So a very small dose and I have low blood pressure, I've been on it 3 wks now, not sure if it even is helping!. My Dr believes that as I probably have had PMR for 2 years already undiagnosed that it's taking ages gor prednisone to kick in. I had shoulder/hip ultrasounds done in May 23 that showed i have trocherantic hip bursititis in both hips and bursititis in both shoulders with calcification which I think is common with PMR. I guess I'd like to know if its 'normal' to still be in overall pain even doing simple things like the dishes, hanging out washing, sitting, standing etc with PMR.
Liquorice can cause water and salt retention as well as high blood pressure. I must admit I do occasionally have a liquorice Allsort, I love liquorice! Doctors seem dreadful at knowing anything about supplements. In fact they don’t even know about contra indications of different prescription drugs. It seems it is an area which is not really concentrated on during their medical training.
Couldn't agree more, piglette, especially on the contra indications comment. Over the years, I have constantly had to ask medics about contra indications. You'd think many of them have never heard of them! I am experiencing this again since being diagnosed with PMR last year...
I do blame the medical training. They are really not taught much on pharmaceuticals or nutrition if it comes to that. In fact without the pharmaceutical industry, doctors would still be in the dark ages.
Nutritions an interesting one too. I always had the most unhealthy foods of my life if I ever found myself in hospital, for whatever reason! Particularly since it was outsourced many years ago🙄
I am sure we would have a much healthier nation if there was more knowledge about nutrition.
As HeronNS says don't take liquorice root with steroids. Are you saying you are still in bad pain at 30mg? If so I would go back to your doctor and ask them to check the diagnosis of PMR. Steroids should give you at least a 70% improvement.
Hi, thank you for your reply. Yes, still in pain and now on 27 mg. The Dr started me on 30mg originally then tapered me down over 6 wks to 19mg but when I went for a follow up with him and told him about the pains he suggested I go back up to 30mg and taper off way slower.
Good morning, another very hot and humid early morning here. Agree with Heron NS and Piglette's comments. Welcome to the forum and I'm sure many other thoughts and replies will appear during the day as the UK wakes up. If you have some time to fill a peruse through the FAQ'S wil give you lots of information regarding PMR and it's various ups and downs. The lack of significant improvement after nine weeks of Pred at 30mg, which is a very high starting dose, could well indicate something else going on so a return trip to docs is probably a sensible thought. Take care.
Were you on Pregabalin and then just stopped when you started the Pred?
Hi, Thanks for your reply. I had major pain and had to go to the after hours Dr twice in a fortnight in November 2021. The 1st Dr said I had sciatica and prescribed a short dose of prednisone. 2 weeks later another after hours Dr prescribed pregabelin for nerve pains. That I have to say played havoc with my mind and emotions and I didn't like it but stayed on it for 6 weeks over Christmas then stopped it. I then was on nothing but taking paracetamol really and codeine if it was really bad. Since February 2022 I've had a CT scan, ultrasounds, lumbar back and hip x rays. The main things highlighted are the bursitis issues. The Dr has done numerous blood tests and since 2019 my wbc have been elevated so his guess is 'inflammation'. He was hoping the prednisone would help which would indicate PMR as dubious with my age. (Symptoms started at 46, now almost 48 yrs). Within 4 hours of taking 30mg the shoulder pains diminished heaps and haven't been as bad tho the rest of the pains still. The same.
hi monkey! Welcome to the forum! You will soon realise you have arrived at the safest place for all your sympathies and sensible advice from marvellous mentors.
Thank you, it starts to get you down after a while and lack of sleep doesn't help either. The prednisone makes me very impatient and grumpy too.
Hi and welcome,
Have a look at this from FAQs for starters, and then a browse through others but don’t try and cram in too much info too quickly….
healthunlocked.com/pmrgcauk...
As others have says liquorice is not recommended with pred - bit more info here -
healthunlocked.com/pmrgcauk...
There are a few on here under 50, but have to say if you are still in so much pain, do wonder if you have just have PMR. How is your bursitis being treated?
Thanks for your reply. The Dr has done nothing about the bursitis, his theory is that it's the result of the PMR and that the prednisone should reduce the inflammation and then the bursitis should heal. I've stopped doing a lot of repetitive actions and my teenagers have been on a roster eg hanging, bringing in washing, cleaning etc and apart from walking the dog 30 mins I have really done nothing exertive.
Although the Pred will reduce inflammation, you may also need a targeted local injection of cortisone to help bursitis… and there are exercises .
Found this, but sure you can find other NZ sites which may help -
mrsphysiotherapy.nz/physiot...
..and on sleep, have a look at this - healthunlocked.com/pmrgcauk...
Just for info, where do you live in NZ - my daughter is on Canterbury Plains,…at Barrhill
Thank you, we're in the Manawatu (North island). I'll check out your links. I really had to push for the Dr to even refer me for a x ray and ultrasound as I really want to get this sorted. He hasn't suggested physio or cortisone injections at all, I personally think the pains could be more from the 4 areas of bursititis. I take the prednisone in the morning at 7:30am. The nightime waking is due more to bring sore as it always is between 3-4am, if i take 2 paracetamol it kicks in and i can sleep again.
It's very interesting that paracetemol helps you enough that you are able to go back to sleep. That is another indication that there's more going on than PMR because PMR notoriously responds poorly, if at all, to any other pain relievers. And paracetemol is not an anti-inflammatory so even less likely to help than others like aspirin or ibuprofen (which, btw, don't take while you're on pred - too hard on the stomach).
I found out be accident that taking one of my twice daily doses of calcium near bedtime with a small snack basically eliminated by lifelong intermittent insomnia. The calcium I take is calcium hydroxyapatite (which is sourced from JCD-free New Zealand cattle), but any kind should work, most being more digestible than the usual calcium carbonate. Other people have had a similar benefit from magnesium, which is often recommended to deal with muscle cramps.
However you say you had a good response with your initial dose of 30 mg which is encouraging. If you can figure out what else needs to be managed, you should find it possible to reduce the pred more easily. Can you get an appointment with a good physiotherapist?
Here, for your possible experimentation (don't do anything which hurts you) is a website I found helpful for hip bursitis. I only did the exercise called clamshell, so cannot attest to effectiveness of the others:
myhealth.alberta.ca/Health/...
Thank you. Physiotherapists are generally Dr referred and expensive (unless covered by ACC which I'm not). I think in terms of the bursititis and doing exercises to help then they would help. I'll have a look at your link. Calcium and magnesium a good option.
It always puzzles me why the professions which could keep us healthy are not covered by our so-called universal medical care in Canada. We're lucky, have a plan from my husband's work (retiree) which covers part of physio.
Do let us know how you get on. It's always hardest when you're trying to figure out what to do.
Hi, I had a hip bursitis a.couplr.of years ago and used the Alberta exercises Heron sent you the link for. Found them to be very effective. Good luck. Hope you get sorted soon.
Thanks. I've been doing the clam shell exercises, does hurt especially on left hip but will take it slow and persevere.
Welcome to our group Monkey321. Given your very young age for PMR and that you are still in quite some pain despite a high Prednisone dose, it would be standard practice in the UK for you to be referred to a rheumatologist. I would recommend you push for this. Have you had any MRI scans? Have you been checked out for arthritis?
Thank you for your reply. I haven't had a MRI as very expensive here. I had a abdominal CT scan in April due to possible pancreas issues (which turned out to be nothing). The back x ray just showed slight oestroporisis but nothing concerning, same with hip x rays. Only thing showing is shoulder and hip bursititis which was seen in the ultrasound.
Plain x-rays cannot show osteoporosis - if it is obvious on an x-ray I'd be concerned it is a lot more than slight and you need a DEXA scan to be more sure.
when I had a MRI scan on my back it revealed several areas of arthritis in my back called spondyloarthritis. I don’t think X-rays will reveal arthritis but may be wrong. Spondyloarthropathy affects men more than women and often younger men. It is often associated with bursitis on the hips and shoulders and can give similar symptoms to PMR. I suggest you discuss this with your GP.
I developed osteoarthritis due to taking Pred for PMR. This does not cause any pain but means you are more likely to break bones. A DEXA scan measures your bone density so will identify if you have osteoporosis.
I hope this all is useful. I am a previously fit man aged 64 who was first diagnosed with PMR four years ago.
Do you mean osteoporosis - not osteoarthritis?
Funnily enough - I was also thinking in terms of a spondyloarthropathy ...
I am a newby to the forum to and only had a diagnosis since Nov 22. This is my experience, so may or may not be pertinent to you.
I went undiagnosed for a very long time. I believe that I may have had PMR since around 47 and I am now almost 65. I had a pattern of periods of stiffness, pain and fatigue in hips, thighs, deltoid muscles and neck, and some rotator cuff symptoms that would flare up for a few months and then semi resolve to just about liveable with before re-flaring. I self medicated with NSAIDs. I saw different physios each time and all eventually said that I needed to see a rheumatologist, but my doctor did not take my symptoms seriously, presumably partly because I was considered too young and likely assume that I was peri menopausal and then menopausal. A very bright and alert newly qualified doctor gave me a tentative diagnosis in Nov, now finally confirmed April/May this year. So that may be relevant to age of onset; the duration for me, I do not think is typical, but since I went undiagnosed for so long and therefore untreated, may explain that.
As others mentioned, I am wondering about your diagnosis on two levels, perhaps that it may not be PMR or that you have more than one condition that might be confounding diagnosis and treatment. I have been told by more than one doctor that the symptoms of no other health condition responds as miraculously or immediately to pred. In my case, I was put on 15 mg daily and my response was within a couple of hours. Next day, my stiffness had gone completely, although the effect wore off a little over the next couple of weeks. This is only my experience, but it is what makes me wonder if the diagnosis is correct. I assume that they have ruled out other illnesses that might be confused with PMR, such as lupus, Rheumatoid arthritis etc? 30mg sounds quite a lot for you not to be getting any relief, at all. It is a powerful drug that will knock out most inflammation eventually, though perhaps not as immediate as the effect is when you have PMR.
Also for me, I was still having some symptoms that were not on both sides and it looks like I also have some osteoarthritis in my right hip, which may be responsible, hence my querying whether you have more than one thing going on. Also, it is not unusual for people to have more than one autoimmune condition.
I have a couple of suggestions for you. Read up as much as you can about PMR and then write a list of how you think your case fits the pattern and those that do not. Take them to your doctor and use those to explain why you are unsure. You might wrote a day by day diary of your symptoms for a couple of weeks also.
You might also have a think about your diet. I have seen other threads on this forum on this topic and other forums that I have looked at, some people have said that they have good results. For starters, you might try cutting out all foods that contain added sugar as sucrose and high carb processed snack foods. It won't do you any harm and it might indicate that you are on the right track and deserve more investigation. For me, I am extremely reactive to sugar and I suffer for it the next day if I lapse and binge.
Also, my rheumatologist was adamant that I start on Vit D, 2000 IU. It can help with the PMR symptoms. There is a lot of discussion on this in the medical literature I found when doing my own investigations. It certainly helped my fatigue. I read that a high percentage of PMR sufferers are low in Vit D. I live in Britain and arguably everyone at high latitudes should be taking Vit D in winter, at the very least. I don't know what winter light levels are like in NZ, but guessing it may be similar to here.
Anyway, those are just my thoughts. Your doctor is the best person to advise, but arming yourself with as much information as possible will help you to ask the right questions and query anything that doesn't seem to fit.
Just want to add that I was uncertain of my diagnosis for some time, but investigations have been ongoing over last few months and is still ongoing, but I am more confident in the diagnosis now. I went back to my doctor each time some symptom was not responding to treatment and gradually other options have been eliminated or I have been given extra help where appropriate. I am now starting to understand my condition better and manage it better. I have had some seemingly pretty random symptoms that individually didn't amount to much, but standing back and looking at the bigger picture indicates that it is all connected. So my other piece of advice is that you might have to persist with the doctor as I did to get the right treatment plan for you.
Thank you, appreciate your personal experience and advice. I've been back/forward to the Dr quite a lot over the last 2 years and really now have been quite assertive as to what I wanted and had to 'push' to even get an ultrasound as i just knew there was issues and like you have thought it was hormonal and premenopausal related. The Dr did rheumatoid factor bloods which were neg. He did think possibly fibromyalgia but after reviewing the criteria for PMR and seeing my ultrasound results he is erring on the PMR diagnosis. As you say I probably have more than 1 issue going on.
Same here, fibromyalgia was the first thing that they eliminated for me. I hope you find a way through it all and get some relief soon. It's been a bit of a journey for me to finally discover that I am actually ill and that it is not anything that I did or am not doing. I blamed stress and my mental health and general laziness for a long time for my general lack of motivation and inertia, when really it was due overwhelming systemic fatigue and also muscles that have no stamina and tire easily. Finally getting my head round the fact that I am sick and need to look after myself better guilt free has been an enormous step forward for me. I gave up work 2 years ago, again assuming stress and fatigue and burnout, but now I know that there is an underlying physical reason, and I am OK with accepting early retirement, rather than considering myself on extended sick leave. It would be impossible for me to work with my illness as it is, even with the pred. Sorry I have waffled on a bit, I don't want to hi jack your thread, but I have just realised how much it has helped me to be able to write this down.
Thanks again. I really appreciate you replying. I have a really supportive husband but it's good to talk to hear first-hand ftom someone who has 'been there' and still 'there' as it's personal and real. I don't like to make a fuss and have assumed always the Dr knows what he's doing (given his training and probably 30 plus yrs experience) but it's my body which I know well..so a fine balance.
By the way, well done for sticking to your guns and persisting with the doctor and taking good care of yourself. I do think that you have to do this. The medical profession can be very dismissive of ladies of a certain age and their aches and pains. Hence, frequent under-diagnosis of chronic conditions in women in the past,
Hi, I also had hip pain, luckily only one hip. MRI showed no arthritis just inflammation. But I was on crutches and in agony whenever I moved. I was referred to physio. Then the stiffness started in my knees, hips and back. No shoulder issues. Blood tests showed CRP and ESR both 80+ so PMR was diagnosed, and 15mg pred took away all my symptoms within 24 hours. Even my hip, though that didn't get completely better and I continued with the physio. It is now much better but took a long time before I could walk normally without limping. (I was upped to 40mg pred as I was diagnosed with GCA 2 weeks after being put on 15mg pred).
20 months later and I'm down to 3.5mg, still fine, though my hip still gives me occasional problems. So I think in your case, you have more than one issue going on and that you need to get your Dr to look at these other issues separately.
Thank you. The blood labs here don't test for ESR apparently unless it's for rheumatoid arthritis (expensive test i guess) so I have no idea ehat my ESR would be. My crp was up in Nov 2021 but has normalized generally since. I'm loathe to remain on prednisone if it's ineffective and my Dr did say to return and it would be back to the drawing board...which ultimately he doesn't have a clue!
It is one of the cheapest tests!! And why they would do it for RA but not for PMR is crazy since an older study did find that it is useful in GCA, PMR and possibly RA!
aafp.org/pubs/afp/issues/19...
I don't know why, last time I saw the Dr he told me the labs here wouldn't do it. I've had numerous other blood tests. He won't refer me for a MRI and you can't self refer here. I'm going to have to book an appt this week and go have another chat eith him. Thanks
They'll only do either ESR or CRP here at one bloodwork appointment. My initial monitoring was done with ESR but it's been decided that CRP seems better for me.
Hi. I am 70 now but in my mid thirties I had both GCA and PMR symptoms. I can remember the aches and pains in my muscles and feeling like they were strings some days. I fell crossing the road once when one of my legs just stopped working. I remember how worried I was when my jaw wouldn’t open properly when eating and neck pain. After a couple of years I paid to see a specialist. I am was treated for depression and some time after all seemed well again. I was treated for depression because in the afternoons I could do the moves I was asked to do. I have now had this for 3.5 years and at some point have had most of the symptoms. You name it, I know it. Only now, do I know I definitely had it when I was much younger and I have no doubt about that. Good luck on your journey. I have just remembered that I was sent to the hospital for treatment. The treatment was to lie on a bed with a heated pillow and relax for an hour. It was wonderful I had to leave work early for weeks. Look back I think that’s where the extra rest comes in, Get plenty of rest, as everyone will tell you, it is very important.
Thank you. That heated pillow would be bliss. I felt sorry for you reading your post, how scary having jaw pain like that. It seems from reading posts as you say it's a journey...albeit sn unwelcome one!
What time of night does the pain wake you and where is it? Is the spine worse than anywhere else or is the spine not involved at all?
Calcific tendinitis isn't really a feature in PMR I don't think and like other things in PMR it can happen anyway. Oral pred will resolve a lot of the PMR bursitis although at the standard 15-20mg starting dose it can take a few months. However - with diagnosed calcific tendinitis you would be far better if they treated that specifically - with local steroid injections. Oral pred doesn't reach the bursae particularly effectively. Does that pain improve with NSAIDs which are the more usual approach? As is physiotherapy.
Since you are relatively young and haven't had a 70%+ improvement in symptoms after so long at a high starting dose for PMR I would go as far as to say your GP is out of his depth and you need referal to a specialist rheumy. There are plenty of cases in their 40s - but the other factors are atypical too and need consideration. PMR isn't the disease - it is the name given to a set of symptoms and there are several other causes besides PMR. Your GP has done well to investigate some other things but you may need MRI to get more information.
The problem with licorice is that while it does boost the effect of pred, it also boosts the ADVERSE effects which is not particularly desireable.
Can you find someone to help walk the dog to take the strain of the pulling and waywardness? Unfortunately sometimes we do have to give up such things for a while in order to allow healing to get going.
Thank you again. I really appreciate uour help. Yes, my daughters can walk our dog and yes, she does pull which really doesn't help me. The calification was picked up on ultrasound on my shoulders from memory 3.2mm more on my right shoulder. I pushed for ultrasound as the x ray didn't show up much being only 'bone' focused. Basically from when I lie down in bed its sore and what I'd describe as almost a shaky feeling. (Lying on my left side which is worse) tho lying on my right side is my sorest shoulder. I go to sleep ok but the wake tossing and turning with sore hips, if i lay on my back it's worse. Its not my spine but pains lower back and shoulder blade and ribcage pain down both sides.
Just another link (sorry) re costochondritis - anything sound familiar -
healthline.com/health/costo...
I've read about costrodconditis before and yes, it sounds very familiar and could be that as I fit the symptoms of that. I find that Dr's don't like to be 'suggested' ideas too which is fair enough but I plan to today book in to see him again so will raise it with him. Thank you.
You have to be crafty and make it sound as if it was their idea all along -not always easy -but sure you’ll find a way 🤔
It sounds like your case is more compex than traditional PMR. PMR generally requires 70% improvement relatively quickly after starting prednisone. An it doesn’t generally respond at all to OTC pain relivers or supplements. My most recent dr. had me try turmeric and said if it helps, it’s not PMR. For me it didn’t. I was 48 at diagnosis by my GP. It’s been a fight over 4 years to get a rheumy to acknowledge that diagnosis due to my age. I would agree with PMR Pro… your case likely deserves a specialist and more testing, especially since the prednisone has not been magical at the high end of the dose range.
Thank you. I'm not sure if the tumeric is helping, been on it 23 days only so hard to tell. I think theres more going on so will head back to the Dr.
Hi there, I'm also a Kiwi coming to the end of PMR after five years. Just a comment about the weight gain usually associated with prednisone that I found doctors take for granted and don't usually mention. Moving to a very low carbohydrate diet will counter that effect. Thought it might be useful to mention while you go through the process of clarifying diagnoses. The changed diet is at least something you are able to control. And I also had extra sciatic-type pain after being walked by my tugger dog.
Thank you. I find I'm hungrier on prednisone so will be mindful of weight gain. I sent my Dr a message on my patient portal early this morning and he's just replied and has requested I go and get more blood tests done (ahead of seeing him for a follow up) do that's something at least in the meantime.
Cutting the carbs usually helps the extra hunger problem which is due to your blood sugar level rollercoasting. You can't stop the effect of pred on that but controlling the dietary side really does help. A healthy diet doesn't cut the mustard when on pred - it must be low carb.
I wasn't under 50, but 53..so not too much older. I also had to go up to 30 mg for relief, then 27.5 for 2 months, now just trying 25 this week. I have a little suspicion that the younger one is, the more it takes..maybe faster metabolism than say, someone 75? Just working theory!
I was still 51 when it started, not yet 57 when I got a name and pred. I took 15 mg at 10.15, at 16,00 I stood up without difficulty and walked downstairs, made a cup of tea and carried it back upstairs, Normally. Something I'd not been able to do for over 4 years. What we suspect is the case with younger patients and longer waits for diagnosis and treatment is that it becomes longer-lasting and hard to manage with a lot of relapses.
Thanks, that's probably correct, been a roller coaster of back and forth to Dr. I messaged him yesterday online and he's requested I do more blood tests. I have got an appt 10th July for a follow up. He thinks I'm a mystery!
Mystery maybe, maybe not - but I'd put money on it NOT being PMR. Or at least, not JUST PMR
I'm beginning to think that too. The Dr I guess wants it to be PMR as that's a 'label' and then he can do the prednisone but I'm not convinced at all. My bloods will be all over the show as the prednisone will be affecting them so likely inconclusive. I've already had all the diagnostic imaging (that I had to push for) anyway and possibly he could refer me to a physio but the exercises they would recommend I can get online free. If it is bursititis only then I'd have thought that by now after 9 weeks on high prednisone that it would have helped with bursae inflammation too.
Thanks. I started on 30 mg for 2 weeks then was reducing by 5mg fortnightly as per my Dr's instructions. After getting pains increase and being on 20mg I went back to Dr who upped me back to 30mg and advised me to taper more slower. I'm now on 26mg. Problem is it's not really helping and even at 30mg only pains to diminish were intense upper shoulder pain. I find the prednisone interferes with my sleep and mood (majorally snappy, impatient and tired) which makes for a grumpy mum/wife constantly. If it's not helping with symptoms at 30 or 26mg then I wonder if it is just "taking ages" and i should persevere or if its just not PMR. I do have bursititis in both shoulders and hips fo that alone is painful yho in theory the prednisone should be working on those inflamed bursae too.
Give it a little more time, maybe? I had some setbacks even on 30 (I upped it to 40 mg on my cruise, still lots of pain), and had a week or two I was sure it wasn't PMR..but then it all of a sudden got better. I am still not pain-free, but 80-90% better any given day..worried about tapering and pain coming back with a vengeance. I am lucky that other than weight gain, no side effects..feel better than I have in a LONG time, actually..but with your side effects, I understand your concerns
Thanks. I've got calcification from bursititis also which is half the problem as that's very painful. I've had inflammation showing up in my wbc since Jan 2019 consistently so whatever it is is obviously well entrenched and not resolving or responding fast to prednisone.
I also have a major hip problem, but they never said bursitis. The MRI *kind of* suggested a torn labrum with I get intra-articular steroid injection for, under ultrasound guidance When that pain first hit, I was close to jumping..it was that painful. That was 8 years ago (I till get them every year). I often wonder if that was PMR. From some of the descriptions here, almost could be, but the injection was like a miracle after 10 days (literally climbed the Rocky Mtns 10 days after)..so I guess not.
My blood results so far show my CRP at 4.1 (so fine) and my rheumatoid factor at 10 (also fine). Surely if I had PMR they should be skyhigh?
Not necessarily at all - up to 20% of patients have markers in the normal range - doesn't mean they aren't raised for them though. My personal normal ESR is low single figures, it ran at 16-18 during a flare when I could barely move.
Thanks for the info. The highest my crp level ever got to was 5.8 which was in April this year which isn't even that high. (Never had ESR test). I imsgine the Dr will say that the decrease shows the prednisone is working. I've tapered this morning from 27mg to 25mg as it's been 10 weeks now so will see. I'm still taking tumeric but have stopped the liqourice root.
Heard ftom the Dr today, he's putting me on iron supplements as my iron is within "normal " parameters but on the low end. My wbc and neutrophils up due to prednisone. He's now thinking possibly RA not PMR as been on high prednisone now almost 11 wks with not great improvement. He's referred me to a rheumatologist thru public system which I'm guessing will take a while to get an appt and is deciding whether to do further extensive bloods prior. He also wants me to comeboff prednisone by reducing 1mg every 3 days. Currently on 25mg so will taper off slowly. Ahy advice appreciated, thanks
You should be fine down to below 10mg, at 5mg that may be a bit fast for your return of adrenal function. It is already suppressed after 3 months at high dose pred so will take a month or so at least to settle back to work.
In the UK a suspected RA referral is supposed to be seen urgently as the earlier treatment starts the better - whether that happens at present or not is another thing and I have no doubt it is the same in NZ, You may be lucky, If it is an inflammatory arthritis, you may well get relief with a good NSAID - one range of inflammatory arthritis which I suspect MAY be a candidate responds quite well to Naproxen. Always worth a try.
And do please tell us what transpires.
Thank you for your reply. I'm still seeing Dr on 10th so will follow up then. He said he was "disapointed" it was looking to not be PMR and now back to the drawing board. Re the rheumatologist, not sure waiting times, i know the biggest city near me where he's referred, there's only 1 rheumatologist and "urgent" in NZ is a bit of a joke for anyone with real needs. Took 6 months till I got a letter to say I'd get an an appt with a gastroentologist (and I was classed as "semi urgent" then. Will update and thanks
I got some bloods back overnight, my ESR level is 17, first time the Dr ordered that, its not very high but given high prednisone for 11 wks I'm guessing it may have come down. Dr has ordered more bloods which I'll go and do today and also requested hand and feet x rays so hope that shows up something. He still thinks I'm a "mystery" but thankful he's exploring options.
My ESR wasn't high, either..and yeah given you have taken Pred for 11 weeks..it would be lower. Hoping you get some answers soon, keep us updated! So now on 25 mg for 10 days, my hip and flank pain came back around day 5. My Dr said to keep on it and well do another ESR test, but if it doesn't go away looking like I'll be back up to 30 mg or 27.5 mg again. I guess in a way, it "proves" the PM for me though.
Not really - when it requires that high a dose it needs further investigation just in case. But flank pain is typical of myofascial pain syndrome being part of PMR and it doesn't respond so well to oral pred.
It's the damnest thing. I've had every MRI and chest x-ray and bloods.looking for cancers, tumors, masses, etc) Not one specialist could answer me or even guess what it is. How the waist pain started was I woke up out of the blue with massive hip pain..(then the very next morning, when I turned to wipe my behind), I felt that side tear -on the waist where one would put their hands when yelling at someone. It got better quickly..but then after that 4 hour plane ride on NYE 8 days later, I got up and couldn't barely walk..my entire hip and side was in a 9/10 pain..got the Medrol Pack at Urgent Care and was 80% better 13 hours later. Toughed through the trip, came home..got another MRI and abdominal CT..they can't find anything on these. THIS was the point where since all was ruled out (again), I found this great site! !!..and the GP and I trialed the Pred for PMR (also because I had such an immediate response in Vegas) and I am 90% better all around (neck, hip,knee). Having my normal life back is unreal to me after 1.5 years of constant neck pain and sitting with ice packs on it 24/7..and doing almost nothing but living like an 80 year old...actually a 100 year old because I see plenty of 80 year olds on here who do WAY more than I was able to My husband is 10.5 years younger, and thank God he has been great through me just *existing* for that 1.5 years, not to mention the constant complaining and being upset and frustrated and worried I had a mass they kept missing all the time. I felt so guilty, to boot.
I just think that I since had that waist pain for 1.5 months straight (it took that long to get all the MRI's etc), then it 100% was gone almost immediately with the Pred, that it really almost can't be anything else ..my blood labs were even sent to Mayo for rare diseases/cancers that it *could* be. My neck is still ok, thank goodness..that affected me much worse, actually. This site was a godsend, prayers answered!
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