If you had low/normal range blood markers at diagnosis, could you tell me:
1) How old were you when your PMR symptoms first appeared (not when you were diagnosed)?
2) What was your starting dose? How did you respond?
3) How long have you now had PMR?
4) Have you had an easy journey? Has it been easy/difficult to reduce the dose of pred?
5) Did you have any symptoms that could be thought as GCA symptoms? Any claudication of any sort - jaw, legs, upper arms for example?
6) Is there anything your doctors suggest isn't typical of PMR? Do they ever say "It can't be PMR." Is there anything that makes you wonder if it isn't PMR?
Thank you!
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1. Started with symptoms about 52 years of age. Diagnosed at 54.
2. Started at 15mg but went up to 20mg and then responded ok about 70% improvement but not immediate.
3. Diagnosed February 2018.
4. Last reduction from 12.5 to 10 has been the most difficult so far. Two weeks of increased pain, stiffness, fatigue, loss of appetite, nausea. But, feeling ok now.
5. Yes, GP thought I had GCA, headache, neck pain and stiffness, sore temples.
6. Did wonder if it was RA. Hands and feet problematic for over 10 years. Been told OA. Have swelling in whole hands, stiffness and pain. Pain in feet lime walking on stones. Both get incredibly hot. Tested negative for RA. Felt crap for a long time. Still feel pretty crappy now but better than I did. Have no idea what else it could be.
Too add ..my first dose of pred enabled me to get from sit to stand within hours and to turn over in bed the first night. I could also for the first time in months touch the floor. Suffererc
My last ESR 3 months ago was 13. Before I began taking prednisolone it was 120. My symptoms started in Dec 2014 /January 2015 I was diagnosed in April 2015 when I was 55.
My starting dose was 15mg to which I responded quickly and was virtually pain free within a week.
I have had PMR for 3 years.
I have had a relatively easy journey, but have reduced very slowly and am now at 3/2.5 mg using the very slow reducing method advised on this site.
I have not had any GCA symptoms and apart from my age the doctor did not question the diagnosis, I think because of the way I responded to the prednisolone.
2. 20mg. Super response in 4-6 hours. By 18 hours and second dose, nothing could stop me! Clear of pain and able to walk easily, including stairs.
3. 15 months (plus about 6 months of build up prior to that)
4. Flares followed GP and rheum instructions for reducing. No probs after doing it my way.....until 7mg, suspect that’s adrenal lassitude rather than PMR resurgence.
5. I’ve had achey jaw, sometimes when eating something chewy, and often when talking (!). Legs, muscle pain for instance if attempting too many stairs, unsure if claudication or just PMR muscles. Same with arms if they do too much, took 5 shirts off washing line yesterday and folded them, arms said that was enough thank you! Blood pressures different in arms, this got me an urgent contrast CT of aorta. No dilatation or stenosis seen.
6. My GP didn’t (still doesn’t?) believe I have PMR due to ‘normal’ CRP and ESR. I think he was surprised at my rapid improvement on pred. He terms me ‘atypical’ because of normal bloods and ‘young’ age. To me it seems fairly typical text book stuff. My rheum agreed it was PMR, she stated that some people have ‘normal’ bloods and said she doesn’t know why.
Do I think it’s PMR? Yes, mostly, so did my chiro prior to diagnosis, but then she was puzzled at normal bloods, wasn’t something that she’d encountered. On bad/flare/supremely fatigued-not-controlled-by-pred-days I start to have doubts. Granny had dreadful RA, grandma (I suspect) had PMR (called rheumatics) and type 2 DM, so AI possibilities are in my genes....so yes, I have PMR.
Aged 62 (October 2015) when symptoms first started. Big battle with GP about diagnosis. Did not even want to do bloods.
ESR normal CRP 11. So GP insisted it could not be PMR despite textbook, bilateral neck / shoulder, hip/ thigh symptoms.
Eventually agreed to give me 20 mg pred in January 2016. Pain free in 6 hours.
Fatigue a big problem, necessitating near-retirement last July.
Followed GP advice on tapering....too fast so I could not see the wood for the trees symptom wise, and ended up going back up to 15 mg about 15 months ago. DSNS since then, and now down to 7/6.5 with little problem.
I have NO doubt at all that I have PMR. I see a different GP since my early fracas. She lets me do what I want, through lack of interest rather than any intrinsic trust in my knowledge. No blood tests at all since the beginning!
2.starting dose of 10 mg unsuccessful, 4 weeks later went to 15mg but 5 weeks later, went to 20 mg due to severe neck pain and headaches. Oked by Gp.
3.PMR since January 2018
4.Not easy journey and yet to start reduction ( from July 5th approx). Since on 20 mg (5th June) not many headaches and neck pain thank goodness. Upper Arm and shoulder pains arise if doing too much. Fatigue still about daily.
5.Jaw pains, neck pain but resolved in the main on 20 mg.
1. I was 60 when my symptoms first appeared. My blood markers were normal until about 18 months thereafter.
2. Started at 15 mg and I had no miraculous response , more a gradual improvement.
3. Approx 4 years
4. I’ve had few problems except around 6/7 mg when I felt like death and it has taken 18months to get from 4 to 2 mg.
5. Earache (both sides) was my first symptom and continues on and off. I had usual neck/ hip /arm and leg muscle pain. I also had excruciating pain especially in my calves within a few minutes of being immobile especially when I lay down in bed and had to get up and try to move to get some ease.
2) Started at 15mg, after a few days symptoms got so much better
3) 2 years
4) Not an easy one reducing Preds once I reached 12mg, had to go up to 15mg three times. Tapered 1mg a month and managed to get to 10mg. After that it was difficult again. So went even slower. Now on 7mg and having difficulty reducing again.
5) I did have a lot of headaches and jaw pain, also blurred vision but that eased so not too concerned about GCA at this point.
6) I am under the care of a Rheumatologist who said I have text book symptoms for PMR. I was the one who questioned it as my bloods were normal. He told me to start steroids for 2 weeks, then come off for 2 weeks. He was right, pain returned, so the test proved to me it was PMR. Recently I saw my Rheumatologist, he now believes I also have a new secondary condition, Fibromyalgia. So have to get that under control with medication, before I start tapering further on steroids for the PMR.
Just to ask the obvious, why are you asking ? I remember that I saw a rheumatologist very quickly because I had the typical symptoms, but he said that my markers were not typically high, 32 I think for sed rate but all PMR symptoms were present. I was 70 when it started and have been on pred nearly 4 years. I'm now on 3 mg and "steady as she goes"
Not sure what it’s in aid of, I’m sure all will become clear in due course.
However it’s an interesting read. If I may exclude you Pastit, as you’re the only male that’s answered so far....the rest are female, and the oldest 62. I’ve oft suspected it’s the younger group that have normal bloods, which for years probably fed into the ‘over 60’ age for diagnostics. Thankfully that’s now reduced to over 50, but should never be a hard and fast rule IMO. I hope there are more responses to come.
Because a rheumy and I have a theory and we wondered - as Soraya says - if patients with low/normal ESR/CRP tend to also be the younger ones. This seemed to be a good place to start to see if we are barking up the right forest...
Do you think that possibly this is because older people have raised markers ordinarily, just because they are older, without necessarily having any 'conditions' When they then become unwell with an inflammatory condition like PMR the already raised markers go higher- so they are starting from a higher place....not sure if I have explained that well?
I think it's now being recognised that raised inflammation is bad, no matter how old. But it makes sense that older people are more likely to have something wrong even before PMR/GCA strikes.
Oh yes I do understand that it's not good to have inflammation, and shouldn't be accepted just because people are older, I just meant that they probably have never had it tested until PMR pushes them to seek help, so starting with more inflammation + PMR inflammation means the readings will be higher.
As Heron says - it is slowly being reconsidered that it is "normal" for the markers to rise with age. If they are raised then there is something not right. However - quite a few of us have well within normal range markers - and it often contributes to a delay in diagnosis. Mine were never out of range - in single figures for a long time. But when I was in hospital a few years later and really unwell with PMR too they ranged around 16-18 - but no-one ever associated that level with an inflammatory disorder.
Re my reply to Soraya above I had textbook symptoms but had to convince doctor to let me have 40mg tabs as I didn't have any blood markers I was completely free of pains next morning on waking and I am 84 years old.
I am a 43 year old female still undiagnosed. I think I have had PMR for 4 years maybe more and now I’m experiencing GCA symptoms. No one will listen to me because of my age and labs. I find it interesting that my ESR started out at 8 back then and is now showing 18,19 but that doesn’t mean anything to my doctors. My CRP has been elevated at times but only as high as 2.4. The rheumatologist saw me once did labs and now won’t even see me, that was 2 years ago. I was in the ER tonight, head, face, jaw pain, bulging temporal artery. Scary part is my BP is getting high now with episodes 140/105 today. The ER doc is trying to get a TAB for me but it’s difficult. My GP called a rheumatologist last week and the rheumatologist said she’s too young and her labs are normal. I was told to stop the prednisone (60 mg) even though I had remarkable improvement. Therefore symptoms returned, and I landed in the ER. I’m home now and will have to wait until Monday to hear what the surgeon says. I’m textbook symptomatic for both PMR presenting first and now textbook GCA symtoms. So I’m still waiting, and running out of options. I’ve been accused of drug seeking, having anxiety, among other things. I always found the drug seeker part funny. What drug seeker goes to the ER asking for tordol( anti inflammatory injection)?
NSAIDs rarely help for PMR/GCA. But it sounds as if you have something - what type of doctors have you tried so far? Eye specialists may be some use since you complain if visual symptoms.
I thought I had a difficult time here in Denmark with the doctors but I am sorry to read your story. Although I have also had a reumatologist phoning GP and others stating that I do not have PMR and should go off pred.!
I was 48 when I first had symptoms and 49 by the time I was diagnosed.
My starting dose of Pred was 15mgs. Within 12 hours I had my life back and would say 99% of my symptoms had disappeared.
I have had PMR from October 2015; diagnosed in May 2016. Therefore 2 years and 9 months.
My journey hasn’t been too bad. I got from 15mgs to 5mg (May 16 to Dec 16) quite easily, however at Christmas 16 I flared and eventually ended up back at 10mgs by March 17. I reduced 1mg per month until I reached 5mgs and then 0.5mg per month until 2.5mgs. From 2.5mgs I have been taking it very slowly, maybe 0.5mg over 6 to 9 weeks. I found it hard to get from 2.5mgs to 2mg but have got from 2mgs to 1.5mgs quite quickly (5 weeks) and painlessly. I will think about going to 1mg soon. I have been using my own version of DSNS, just listening to my body.
No GCA symptoms.
Of course because of my age when the symptoms first presented my GP thought it couldn’t be PMR and because my bloods weren’t raised that didn’t help in getting to a diagnosis. I saw a rheumatologist privately as the NHS waiting lists in Northern Ireland are horrendous, she diagnosed PMR immediately. I have now seen 3 other rheumatologists as a NHS patient and, after extensive questioning, they have all agreed its PMR.
4. Compared with others, I have it easy; I'm coping. Reductions are manageable (but only because of this forum and excellent support at home and work).
5. No.
6. No, because I rarely see the doctor (twice in all); we have telephone appointments.
Hi. Don’t recall ever having my ESR or CRP checked before, until I had them done when I presented to the GP with the pain I got 2 weeks earlier & was thought to be sciatica went into my shoulders and I felt totally crap. Had the bloods done within an hour of speaking to her & got results & started on Pred all on the same day. Bloods had returned to normal 3 weeks in December. Haven’t had them checked since. Going next week. Should still be normal as tapering on 10 to 9.5 of Pred at moment. X
2. Started on 10. Pain and stiffness disappeared within 2/3 days.
3. 2 1/2 years
4. Practically impossible to reduce, managed to get to 8 twice but it returned with a vengeance. At the moment on 15 highest I’ve been on. Last few months life has been very stressful, pain reappeared in my thigh muscles. Doctor increased the dose.
In November 2015 when I first visited the doctor complaining about pain and stiffness in my upper arms and shoulders the blood test revealed, ‘A slightly raised level of inflammation, but nothing to be concerned about.’ I quote! I waited another four months in increasing difficulty with movement in my arms and shoulders, plus the dreaded fatigue, until another doctor diagnosed, reluctantly, that I had PMR. He prescribed 10mg Pred which I know is less than recommended but I was fortunate and it worked. The rest as they say is history.
2. Rheumatologist prescribed 15mg prednisolone responded well within a couple of days. Not always pain free but nevertheless a big improvement to symptoms. Symptoms followed a 3 week bout of influenza in December 2017 so started January this year.
3. Rheumatologist tapering plan failed so now following the DSNS plan and currently taking 13.5mg prednisolone.
4. All blood markers within the normal range
5. No indicators for GCA
6 Because of the normal blood report the GP did not believe it was polymyalgia and was annoyed when I explained that 20% of people who have polymyalgia have normal blood counts. She told me I did not have polymyalgia and referred me to a rheumatologist who diagnosed PMR in April this year.
Thank you for all the support and extremely useful information that you give to this group.
5. 6 months from diag. Plus 3 months when Drs would not treat until seen by Rhuematologist
6. Started on 15mg reduced after 6 weeks easy enough then 2nd taper not so easy. Increased to 30 by GP when jaw ached.
7. Jaw ache, ache around ear (but told not ear ache)
8. No from Dr. BUT yes from me.
Add on to 8. I have never felt like crying with pain. In fact the pain I have/had is more like a pulled muscle or dull ache. But all were in the right areas for PMR. Had various X-rays all clear
I was wondering whether we are all fit people previously or had strenuous hobbies or work they may be a common factor. Has research ever been done into PMR GCA. It seems to be very common.
I think it is that we notice it more! Lots of less active and older people just accept it as part of getting older - my grandfather was a martyr to his rheumaticks and I am positive it was PMR. But in the 50s there wasn't much option.
I misunderstood your intent. My ESR was 67 at diagnosis, so may want to discard my response. Assume now that you meant that blood markers were normal before treatment. Sorry. My Internet went down while I was sending my response, so it appears you may never see it anyway!
ESR was 34 when diagnosed- GP assuming high end of normal
ESR was 5 last September after zero Pred for a few weeks.
1 I was 55 when symptoms started to appear.
2 Starting dose was 40mg Pred for a week, then 20mg for a week, 15mg for a week then to 10mg, then to decrease 1mg per month. A few hours after first dose I felt a miracle had taken place!
3 I have had PMR treated for just over 3 years, in retrospect probably had it over 4 years.
4 Had a wobble between 9mg/8mgs but then started on DSNS and been under 5mg in first year of treatment. Had 6 weeks at club zero last autumn -returned to 2mg and now on 0.5mg Pred or zero -and feeling good! Prednisolone was excellent at clearing any pain but the fatigue/flu feeling has been my main problem throughout. Been luckier than most.
5 I did have scalp pain and constant but mild headaches when diagnosed but didn’t realise significance-similar to a couple of episodes of jaw pain when chewing. Also now understand the cramping pain in my thighs that improved when I slowed or stopped walking was probably claudication-it magically disappeared for good about 5 months after diagnosis.
1. Symptoms first appeared probably about 6 months before diagnosis- difficult to do up bra, difficult to turn to see traffic in car so I was 64
2.Starting dose was 15mg. I immediately felt better- no stiffness or pain in upper body. Appetite back and didn't feel so low.
3. 3 and a half years
4. My journey has not been easy. Went down to 11 mg with not much trouble but found it very difficult to go down further to 10mg. and then 10.5 mg. At 10.5 mg I began to have terrible headaches at the side and back of head( searing, boring type of headaches that got worse at night) Went up to 14 mg and then caught a bad cold and everything got worse and eventually went up to 20 mg.
5. The above symptoms led me to believe that I was having GCA symptoms. GP disagreed as not in temporal region. Went to see Consultant Rheumy privately who diagnosed cranial GCA. This has never really been acknowledged by GP.
52 years "young" Diagnosed with PMR September 2017. ESR- normal but CRP was elevated. Symptoms started in Summer 2017 before diagnosis.
Starting dose 30mg, and felt almost 80% better in 2 days.
10months with diagnosis. Blood work has been normal ever since being on Prednisone.
My journey, has been a roller coaster. I got down to 9mg in February and symptoms persist with challenging day to day activity. I have a great employer that has allowed for modified work schedule, 3 days a week. Back up to 20mg recommendation from GP, and Rhematologist now wants me to go back, reducing by 2.5mg every 2 weeks, until 10mg. Starting 12.5mg today, and feeling symptomatic. Also on Methotrexate.
No claudications.
Because I am so young, this is atypical, and has done several blood tests to rule out other diagnosis.
1. Symptoms appeared slowly over 4-5 months then developed acute symptoms after stopping maximum strength steroid asthma inhaler (Advair 500/50) which I had been on for 3 years. That was in September 2017. Age 66 when symptoms appeared.
2. I have never had elevated ESR/CRP though I do have elevated ANA which is non-specific for PMR.
3. Started at 10mg prednisone in October 2017. Increased to 15mg and added Methotrexate 7.5 mg- 3 tabs/day in Dec 2017. Increased to 20mg prednisone & 5 tabs methotrexate in Feb 2018. Decreased to 15mg in March and 12.5 in April 2018. Major flair at 12.5, went up to 15mg May, down to 14 mg in June--another flair, back up to 20 mg + 7 tabs methotrexate which is my current dosage. Plan is to titrate down in 1 to 2.5 mg increments over next several months.
4. My symptoms first started in March 2017 with diagnosis in September 2018. Total time is 14.5 months. So far, this has not been an easy journey at all with a lot of up and down with Prednisone, pain and feeling unwell. I am a very active person and am the Board President of a non-profit. PMR has interfered with my ability to both physical and mental things at the level/pace I like.
5. No GCA symptoms.
6. My rheumatologist has said that my presentation is atypical--I have buttock, leg, and foot pain and presented originally with acute tendonitis in elbows, wrists and hands. When I am having a flair, I not only have pain, but feel very unwell with low-grade flu-like symptoms (joints and body very achy though no fever) and "brain fog"--hard time focussing/ concentrating, and fatigue. I do occasionally wonder if it is not PMR only because I am not sure what other people with PMR experience--especially the brian fog when I am having a flair.
I'd suspect your "atypical" buttock leg and foot pain is due to piriformis syndrome affecting the sciatic nerve and causing the leg and foot pain. The rest of it ISN'T unusual - I bet there are loads of people on the forum who'd identify with you. I can - I had tendonitis in my forearms that was put down to RSI.
I'd also suspect your ups and downs are because you have been made to reduce 2.5mg at a time - far too much. More than 1mg per month is predictive of a flare. And if you continue to reduce at 2.5mg at a time - you will flare. Sure as eggs is eggs...
Hi- Appreciate your response. So good to find out what others with PMR experience and how my symptoms fit into that picture. The buttock and leg pain seems to be due to a couple of things, but not piriformis or sciatica--I do have lumbar spinal stenosis, upper hamstring tedonopathy and tears on both sides. I had a minor fall in January that resulted in a major avulsion tear in my right proximal aductor longus tendon. I am curious whether PMR makes tendons more susceptible to injury.
When I first had major PMR symptoms, I had acute pain and stiffness in my legs, knees, achilles tendon and foot tendons making it difficult to walk or stand up after sitting even for a few minutes. Aside from tendon pain in my elbows, wrists and hands, I have not had the shoulder pain that others describe.
Thank you for the information regarding titrating pred. Will be going much more slowly. I am in the USA and wish that we had PMRGCA chapter here. PMRGCAuk is the only such site/organization I have found. Very grateful.
I also "Feel very unwell with low-grade flu-like symptoms (joints and body very achy though no fever) and "brain fog"--hard time focussing/ concentrating, and fatigue." This came much before the pain in arms and legs, and was keeping me from working. Pain I can handle better (NASID). On pred, now so I am fine If I strain my self though, physical or mentally I still get these symptomes.
1. Symptoms started at 53/54, due I believe to months of stress at work.
2. Gp suggested starting at 30 mg to "blast it out of the system" sigh. I secretly started on 20 mg (having started researching this and the other forum). Good response within 2/3 days.
3. 18 months in now.
4. Reasonably straightforward journey. Took 3 months off work initially, mainly to manage huge fatigue and total inability to make any decisions. Managed reductions and one flare myself, feeling I've more knowledge than GP who I haven't seen for 16 months, so I'd rather keep a low profile haha. On 6/5.5 mg now.
5. No suggestion of GCA symptoms
6. Very typical PMR symptoms but never raised blood markers .. had 2 blood tests initially. Then recent "well woman" assessment - bloods taken to test everything under the sun. No raised markers again.
Hope this helps. Just to add I was very fit when pmr crept up on me. Now struggling to keep even a basic level of fitness...for me anyway!
Like some of the others here I was told the inflammation markers were normal (for my age), but in fact they were somewhat raised. Sorry, don't know the numbers.
1) Symptoms shortly before turning 67, diagnosed about 14 months later.
2) 15 mg. Mild response within hours, complete pain remission within a couple of days
3) Since May 2014.
4) Relatively easy, thanks to DSNS, until getting down to 2 mg area, flare 1.5 attempting to taper to 1, taken about nine months to return to 2. Not easy to taper now.
5) Tender, sensitive scalp, this went away when I started pred. I thought it was because I coincidentally changed shampoo at the same time, but as that symptom came back with last year's flare, and went away with increase in dosage, I'm not so sure. One of the later symptoms to develop was an extremely stiff, painful neck.
6) No, not once diagnosed by new doctor, and never mentioned before.
1. I believe symptoms started at least 4 years ago, when I was 57/58.
Diagnosed March this year, aged 62, after an on-off battle with GP mainly because of no raised markers at all. So she wouldn't prescribe and I had to wait for Rheumy appt.
2. Started on15mg and almost immediate 70% relief of symptoms. Reduced to 12.5 after 6 weeks, then 10 but went back up to 11 after two weeks as symptoms began to return/worsen. Now back down to 10 again and seeing Rheumy next month, but I don't feel I can reduce any more at the moment as neck/shoulder pains are starting to be problematic again.
Have had intermittent jaw/ear pains, temple/sinus type headaches almost constantly, will discuss again with Rheumy- she didn't feel they were severe enough to be associated.....I am convinced they are! Cramp/heavy leg type pains and arm pain/weakness of exertion.
Sometimes I can feel my whole body 'throbbing' usually early hours of the morning. I have a high pain threshold and try to 'struggle' on and live a 'normal' active life, and although I have now returned to doing many of the things I want to do- cycling/ horse riding/badminton/dog walking etc I am by no means as well as I was pre PMR. Fatigue is still a problem.
Yes I am atypical. My blood markers have been absolutely normal - except following surgery (see below) but then go back to normal.
1. 66 years old. Treated nine months later.
2. 25mg and after 3 days I could fly after barely walking.
3. Had it for 5 years. Treated for four and a quarter years.
4. Journey not as bad as some. I’ve had flares and ups and downs with Prednisolone. When flares were bad I had Depo-Medrol injections to supplement oral Prednisolone. Also managed two knee replacements and a shoulder op over the last two years. It’s not easy but I am now managing on 5mg. Can’t seem to get lower.
5. Had some jaw problems and a sensitive scalp but my GP, who is really good, says no GCA. Those symptoms have been with me for a few years but haven’t got worse. My eyes have been thoroughly looked at by a specialist too and he ruled out GCA.
6. Yes my specialist and I have this conversation but due to my excellent response to steroids and that PET scans and so many blood tests have all been negative - PMR it is!
CRP & ESR were both only slightly above normal around 3 & 6 months after symptoms initially appeared & as a result of this PMR wasn't diagnosed. I had a multitude of tests resulting in a diagnosis of hip bursitis ( which I now know is part of PMR) & the shoulder, neck & arm pain left unexplained. Crp& esr were highly raised on diagnosis.
1) 65
2) 20mg which was raised to 40mg after a week
3) Symptoms started 16 months ago
4) have recently had a flare trying to go from 16.25 to 15.
5) it was GCA symptoms that lead to diagnosis 6 months ago. At this time CRP & ESR were highly raised. The temporal artery biopsy was negative. I was unable to eat before early afternoon due to jaw & teeth pain, had a persistent headache behind one eye, & tender scalp. I'm not sure how claudication pain differs from other, but couldn't lift arms due to upper arm pain, had severe neck & shoulder pain, thigh, lower back & calf pain. Was also having sharp intakes of breath ( now gone with pred) & had 2 episodes of fainting.
6) Both my GP & Rheumotolgist said that my symptoms werent typical PMR as CRP & ESR werent raised. I now have issues with one foot & the Rheumotolgist has suggested this might be RA, but he's not sure. However he did say that some people initially diagnosed with PMR are later rediagnosed with RA. However this not the case with GCA sufferers & there are a small group of people who have all 3. My GP also explained how difficult it is to diagnose specific autoimmune diseases as need to rely on clinical symptoms due to the lack of specific blood tests.
I think I had PMR at age 68. I was not diagnosed until I was 70. That was last September. I then started on 10mg prednisone morning and evening and was painfree in less than 3 days. I am currently taking 6mg prednisone daily. I have not had any GCA symptoms. I have however, struggled with anxiety and depression as I started to taper. I saw a mental health specialist and am working with on that. I still have some pain in my biceps, thighs and hips.
Bloods normal when doc suspected possibility of PMR.
Four weeks later bloods for Rheumy at 18 and 88.
1. I believe I had low level symptoms from age 54, ot at least an immune dificiency evolving. Following trauma of Mum' death, and three infections in one week symptoms become severe over a three month period and could hardly move. Aged 58 at diagnosis.
2. 15mgs - 24 hour miracle 85%
3. 1 YEAR
4. Up and down. Down when severely fatigued for no apparent reason. Difficulties reducing from 15mgs to 10mgs on alternate days as advised by Rheumy. So started dead slow. Now at 8mgs.
5. Scare three months post diagnosis due to eyesight episode. Checked for GCA or TIA at A&E all fine.
6 At full stregth -Typical PMR by time I saw rheumy. Though initially GP diagnosis thrown since symptoms started below waist so had x rays on knees, MRI scan on spine. Pain in both buttocks persistent and severe. Only when symptoms started above waist in arms, shoulders and neck did Internet throw up possibility of PMR, which GP concurred with. Referral made to Rheumy.
In answer to your question, bloods 6 weeks ago were ESR 1 CRP 2
1. 59
2. 30mg and felt immediate relief(within 12 hours). Oh I remember it well? felt like a miracle 😀
3 . 1 year
4. Tapered to 9mg (for 1 week and struggling )
Struggled to taper particularly when reaching 15mg. Up and down doses on GP's advice. Saw Rheumy in Dec 17 who put me up to 40mg and been tapering on his advice since. Saw another Rheumy May 18 (on 10mg) who wants me down to 7mg by next appointment in 3 months. He said I had fibromyalgia and osteoarthritis as well which would account for much of my pain.
5. Rheumy in Dec 17 said I may have low level GCA which is why he put me on 40mg. Pain and numbness on one side of head, ear pain and scalp tingles.
6. When diagnosed PMR, as well as typical symptoms I also had dreadfully painful knees...felt as if shards of glass were caught between bones, muscles, tendons etc every time I moved and GP said this was not typical. This occurs often when I taper but certainly not as intense as when first diagnosed.
Also hands puff up of an evening...not too painful but uncomfortable.
GP or Rheumys have all said PMR with first rheumy suggesting possible inflammatory arthritis of knees going on.
I do understand that some pain is down to pre conditions ie osteo, bursitis, tendonitis etc but do sometimes wonder if there is anything else going on.
Thank you PMRpro, that was quite cathartic. Hope this helps and that you are in a good place 😀
1. 70 years old (taking NO medication of any kind..never had save for an ibuprofen here and there or a multivitamin) normal blood markers (I assume) then up to 59 ESR and right away down to 11 a couple weeks later then up to 22 and last time was at 24. I am working now with anti inflammation diet to lower the numbers. will retest in 6 more weeks.
2. 15mg.- instant relief within hours
3. 9 months. (8 months on medication)
4. I have had a very easy journey ...so far... only once have I had to go up 1 mg during a stressful time and taper. Have had an easy journey in great part because of you and other knowledgeable contributors on this forum. I am now at 8.5mg. and going to go to 8 next week. (Have also just changed diet to power green smoothies..and hoping to get the inflammation lower with the diet. Have a friend who swears she cured her lupus.)
5. Nothing that could be considered GCA
6. Nothing to think it is not PMR. I think I have a very easy case also. I still have energy pretty much, and I am able to walk a lot and take tap and do yoga. I respond WELL to prednisone and it makes me feel great except for the terrible side effects.. hair coming out and thin bruising skin and brain fog and chubbiness. (that's going away with diet) but basically it makes me feel good! I am one of the lucky ones. and so grateful!
4. I feel it has been a relatively easy journey, compared to others. I rarely let it stop me. I do Yoga and Pilates ( which I truly believe have helped greatly) and if it is a bad day, I just do the beginners versions. Few flares along the way, usually when immunity is low, or when poorly informed doctor insisted I reduce much too fast!
5. Have had many problems with eyes in the last 6 years. Since pmr, had a couple of times I was worried and saw my optician. I had first cataract in 2013 age 52, followed by a detached retina 18 months later which left me with slight double vision. Second cataract last year. See my optician regularly and he is very thorough.
6. Rarely see the doc 're pmr, they are happy with my regime. Have regular blood tests and bone density scans due to steroids and long term use of omeprazole, all good. Have never seen a rheumatologist.
2) Diagnostic dose was 25mg. Response was 70% relief almost overnight.
3) Have now had PMR one year, 7 months.
4) Have had difficulty reducing from 15mg to 11.25 (has taken 6 months)
5) No GCA symptoms, but pain in calfs.
6) 1st rheumy said that unless my c-reactive/sed-rate is elevated to such-and-such a level, "there is zero chance you have PMR." Given that I tested a mild positive for RA he went with that diagnosis, regardless of the fact that I exhibited none of the classic RA symptoms, but had nearly all the classic PMR symptoms.
The 2nd rheumy disagreed, and went with the symptoms, rather than the blood markers.
1) How old were you when your PMR symptoms first appeared (not when you were diagnosed)?
62
2) What was your starting dose? How did you respond?
15 mg. AMAZING improvement. Afternoon of first day felt like a human being again. I cried most of the afternoon because it felt so good to not be in pain.
3) How long have you now had PMR? 3 years
4) Have you had an easy journey? Has it been easy/difficult to reduce the dose of pred?
It has NOT been an easy journey. Reducing the pred has not been easy at all, but I have not followed the dead slow method to the letter, either. I get impatient and try to push. I am at 10 mg now, but am not pain free. Some days are worse than others. I have occasional days where I have almost no pain and my brain says "maybe you are going into remission!" ha. no such luck. The roller coaster ride of days of pain and then days that are nearly pain free, can be discouraging.
5) Did you have any symptoms that could be thought as GCA symptoms? Any claudication of any sort - jaw, legs, upper arms for example?
I had a little bit of jaw soreness and fleeting pain in left side of head. It's always random and brief, so have never even discussed with doctor.
6) Is there anything your doctors suggest isn't typical of PMR? Do they ever say "It can't be PMR." Is there anything that makes you wonder if it isn't PMR? Only slightly elevated CPR/Sed rate at diagnosis (before pred). Explosive onset of swelling and pain in hands and feet (happened overnight literally). This was about a year ago. Still have peripheral pain and stiffness but swelling/pain is very minor now. What I read about continued PMR research, though, is that there are many (over 40%?) who may have hands,wrists, feet,knee involvement with PMR. Yes, there are doctors I've seen that say PMR is gone in a year so it can't be. One doctor I saw in the beginning and saw again recently said she does not think I've ever had it. LOL. Won't see her again. I've seen about six different rheumatologists. Now I have microscopic hematuria and anemia, so a fresh new set of various tests being done. So far all negative. I have never used any drugs except prednisone. Refused to try methotx, plaquenil, humira, etc. I read and read and read, but never seem to find enough information to make me feel like this is REALLY PMR for sure. There is something called RS3PE that I've sometimes thought might be what I have. The more I read about that, though, the less I am convinced. Multiple x-rays of hands and knees have come back negative and the doctors scratch their heads.
My Partner (male) has suspected PMR/GCA, but I'm the 'researcher' and I'm really keen to get to the bottom of this. In answer to your questions, PMR Pro:
1) How old were you when your PMR symptoms first appeared (not when you were diagnosed)?
65
2) What was your starting dose? How did you respond?
50mg. From being unable to turn/move in bed in the mornings - (severe pain in arms, shoulders less severe inhips) to the day after taking 50mg pred: getting up before me, (first time ever!) bringing me a coffee, then jumping up and down on the bed with arms swinging in circles... (bonkers!)
3) How long have you now had PMR?
Now wondering if the symptoms of pain in shoulder, especially at night & mornings, for over two years has been PMR. He's had severe symptoms (muscle pain) for 3 months.
4) Have you had an easy journey? Has it been easy/difficult to reduce the dose of pred? Very early days, starting on 50mg cos GP isnt sure if its GCA too. Symptoms arent 100% disappeared, GP thinks they should have gone completely. My feeling is that the difference since taking pred has been so dramatic that even there is a residue, it is surely a clear case for PMR? GCA diagnosis less easy, but we're waiting to see what happens this next week.
5) Did you have any symptoms that could be thought as GCA symptoms? Any claudication of any sort - jaw, legs, upper arms for example?
He had complained of pain in his jaw while chewing for a few days while in the phase of having no idea what was wrong.
6) Is there anything your doctors suggest isn't typical of PMR? Do they ever say "It can't be PMR." Is there anything that makes you wonder if it isn't PMR?
Blood test was normal. At the moment GP thinks its 99% likely PMR and maybe GCA, but symptoms much less clear cut for GCA, although some present (pain in jaw, headache in temporal area but not severe). Hoping to get a referral to rheumatogolgist on Monday so he's seeing a professional with experience, rather than GP who's never seen PMR or GCA in his life.. After having seen osteopath, chiropractor, Physiotherapist, GP.. none of them mentioned PMR.. it was only my process of elimination and as time went by and it was just getting no better after massage, manipulation.. I was perplexed as to how the muscle pain could be so severe for so long. Discovering PMR and the fact he's responded so positively has really ifted me, even though its obviously not great news, at least we know what it is!
How long may the referral be? ?GCA should be an emergency referral but that is like getting blood out of a stone in many cases! Be firm! Where are you? And I've met rheumies with no experience of GCA either!!
I am in Durham, UK, and have been advised (by the incredible Mavis Smith of PMR-GCA UK North East) to ask to be referred to QE Gateshead to either of two specialists who are patrons of the charity. So we feel very lucky to be close to an expert or two.
I'll have a look at the article you posted now. Thanks again!
Good - I'll not worry now. Mavis is my best mate...
I lived in Fram and then Pity Me until I moved here, OH worked at UHND. I gather UHND has no rheumies at present which after my experience is no bad thing - so be firm about a phone call to QE and an emergency referral.
Ah ha! The circle has been completed! Mavis spoke about you, and I've read some of your posts on the other forum Patient Info.. you together are a force to be reckoned with! (At least as far as PMR&GCA are concerned!) Pleased to meet you
My step son lives in Pity Me - and he moved there from Fram! What a coincidence.
Tomorrow we'll be going to docs, armed with the guidelines & Fast track pathway hopefully there'll be no arguments, but we (my partner and I) are social activists too, so not frightened to fight for a cause, whatever that may be!
Thank you again for your support, its humbling to know other people have your back. It reminds me of the huge spirit and fundamental goodness of human beings. We are one.
Where in Durham are you yourself? Which practice do you use? I was at Chastleton - and the guy I usually saw was hopeless! Hadn't improved by the time I left - I asked him, what do you do with ?GCA? "Large dose of pred and pray..." was his response! One of the women there then was excellent re PMR but was part-time when she wasn't on maty leave!
Well today didnt go as well as it could... managed to get an appt to see GP at 3.40 (OH went down to the surgery to stand in a queue to get what appts are dished out each day..). Doc didnt seem to grasp the 'emergency' bit, she's booked an appointment on 23rd Oct at QE, even after assessing his temporal arteries as being swollen/pressurised. I've left a message on Rheumy nurses helpline explaining the situation, after speaking to someone there who said to do that and they'd ring back. I don't know, maybe we're being over sensitive, but I really would rather be safe than sorry. He's already taking 50mg pred, and still experiencing symtoms - albeit 90% less severe than before. Maybe he should take the initiative and take 60mg (without approval from docs)? Just to be on the safe side? Or is that just plain crazy..
We're in Sherburn Hill.. Belmont & Sherburn Surgery, they're down to three doctors, and you only ever see one of two of them. Dr Farley is very amenable, and open to patient suggestions, but he saw a different one today who , well.. am I worrying un-necessarily?
I think an improvement of 90% is pretty acceptable and you must always remember that some people never achieve total freedom from symptoms. I think you should post this question as a new thread - so that Dorset Lady and other GCA patients see it and can say how they responded to whatever dose they started on. DL had already lost vision in one eye so was on a very high dose of pred to reduce the chances of the other eye going but I don't think she was totally pain-free even at 80mg.
The worst thing about her waiting 2 weeks is that the theumy won't have much chance of finding any confirmation. Silly woman. Hope she doesn't do that with patients who may have had a heart attack or stroke...
Good idea, Ill post a new thread. I'm really interested in finding out what the beginnings of sight loss 'look' like and how long it takes to lose your sight once the symptoms appear. Thanks for all your help so far!
No answer to that "how long" - a small number of people simply wake up blind without ever having had any identifiable symptoms beforehand. Others have PMR symptoms for some years and then develop signs of GCA. No one size fits all I'm afraid from beginning to end of the journey - and that applies to the symptoms too.
Not really Soraya - it was just something I wondered about - it is said that younger patients are more likely to have "normal range" acute phase markers but there are a lot of 60/70 year olds with low markers too - though of course for a lot of doctors that counts as young for PMR!!
Wise and experienced 2nd rheumatologist said he always goes by symptoms over blood tests. Now have anemia; low iron, low potassium, low chloride, high WBC, high RBC. Taking iron supplements, potassium prescribed. Even with prescribed potassium, it is low end of normal. This disease can really knock one around.
2. 15mg 3 days huge improvement in classic bilateral upper arm stiffness. Could not raise arms past halfway, roll of the bed, couldn’t tie laces do socks etc
3. 4 years
4. No, tested for everything else and come back negative. Rheims doesn’t think I have pmr as too young and no inflammation on tests xrays etc. Now at 9mg and kn v slow taper 1mg month. Doing ok but not like my old self.
5. None upper arm and hip pain and stiffness mostly
6. Yes mainly due to normal bloods. Gp is ok about me taking pred though. I also have some nasal crusting which seems pred sensitive. Have had biopsy but just plain inflammation and nothing sinister. Also get pain in both Achilles which is pred sensitive ie increases as I taper to lower doses. Hoping that one day will improve but at least can manage life ok for the moment.
I have only just seen this thread so sorry about the late response.
I am still waiting for formal diagnosis but am pretty sure I have PMR as I have had all the symptoms for nearly 1 year now and getting no better.
As I first go symptoms at 45 and my ESR was only slightly raised at 23, my GP said she would rather I see a Rheumatologist before diagnosing as I was a typical. The first rheumatologist I saw did not think I had PMR and diagnosed me with arthritis even though I was very clear my aches and pains were in my muscles and not joints!
I have just seen a 2nd rheumatologist for a 2nd opinion and had had MRI and further bloods taken and am awaiting my follow up appointment. However in the letter he sent to my GP after my initial apt he stated, 'that whilst my symptoms are indicative of PMR, he thinks it unlikely due to my age and relatively normal ESR'.
I really do not want a possible diagnosis to be ruled out on the basis of age and bloods as I know from this forum that many of you have been diagnosed with low ESR and some under 50.
PMRPRO, you mentioned a study was done that showed that people who are diagnosed at a younger age are less likely to have a high ESR. Can you provide me with a link to this study if you have it as I am struggling to find it and I would like to discuss it with the consultant when I go back to see him on Friday. Many thanks.
Sorry no, can't remember where I read it and it may even have been part of a discussion with rheumies.
But I fear that second rheumy is misinformed - this fixation with the 50th birthday and "normal" ESR annoys me. However, I assume they are looking to see if there is any sign of anything else? Bear in mind that inflammatory arthritis CAN have a "polymyalgic presentation" and some 1 in 6 patients first given a diagnosis of PMR have it revised at some later date and often to an inflammatory arthritis.
But what does he mean by "relatively normal"? Do you know the figures over time or just that single figure? My ESR ran at 16-18 for weeks while I was having a major flare but no-one picked up on it because it is "in normal range" - but MY personal normal is in low single figures. For someone under 50 an ESR of 23 is high - it might be you have a normal ESR of 19 and it is slightly raised - but you could usually have an ESR in single figures and it be raised quite a bit.
How open minded is your GP? Would they be willing to try a short course of moderate dose pred to see what happens? This article aimed at GPs to help them manage PMR may help:
I have had 3 historic ESR readings, below, and am waiting to get the results of the one taken in Feb. I recall I was feeling a bit better in September 2018 which makes sense of my low reading at that time. But you can see that it was raised either side of this.
17/07/2018 ESR 23
06/09/2018 ESR 13
27/09/2018 ESR 24
Thank-you for the link to the article, I will read it later.
It would be great to hear from anyone else, who like me has symptoms below 50 and with low ESR Readings. Please could you contact me if you fall into this category.
Whatever - that really does suggest that mid-20s is significantly raised for you. Of course, other things will raise ESR too - but I don't know of anything except less inflammation that would reduce it!
You would be better to start a new thread to ask your question because only people who actively followed this thread will have seen it. People leave and join all the time and a lot of people only read threads they find interesting from the first post.
Seems you started this inquiry a year ago and I missed it. I was 69 when incorrectly diagnosed with GPA b/c of low tire PR3; after dramatic and fast response to 16mg Pred, diagnosis changed to PMR after consult at Johns Hopkins during which GPA dx discounted; Sed and CRP normal until recently; last blood test showed still normal Sed Rate, but now at 72, CRP elevated. Maybe age has something to do with it or better lab. Can't say it's been easy going, but have good days, and occasionally a few good weeks, but seem to backslide afterwards. It's been up and down. No rhyme or reason as to why and when.
1) I started symptoms at about 50 years old (Dr. are still debating the diagnose)
2) 15 mg pred. per day. In 2-3 days all symptoms where almost gone - like a miracle. After a months, I realised that I have limitations still
3) Dr. are still debating the diagnose. I think 1 year or more, I started pred. on august 2019
4) I have been down to 12.5 mg for 3 weeks now. I can fel less energy and slight stiffness in the morning, and pain if I use my muscle to much. It is still a hard time as i rheumatologist has told my GP that it is not PMR. They have checked everything else, so I say it must be -
5) I have blurred vision and morning headache, I have muscle atrophy of shoulders and front of my thighs - left is whose. Eye symptoms went away with pred.
6) They say that I am too young and with normal ESR/CRP It can't be PMR. I began seeing a Reumatologist, but she wanted me checked for other diagnoses first. She did do a PET/CT scan (normal) . Yes, the atrophy and the muscle twitching made all think of Lymes, ALS or MS. They checked that in vinter 2019. BUT I am officially with out diagnosis now. I live in Denmark. My physiotherapist says she thinks there are nerve damage, so sometimes I still think of MS
addition. : I also fit this description from someone else: "Hands and feet problematic for over 10 years. Have swelling in whole hands, stiffness and pain. Pain in feet lime walking on stones. Both get incredibly hot. Tested negative for RA"
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If I strain my self though, physical or mentally I still get these symptomes.
Blood tests reveal high ESR whilst CRP in normal range
ESR and CRP normal - is damage still being done to my blood vessels?
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