Anyone have a similar experience? When I first experienced symptoms of PMR I went to my Primary Care Physician who prescribed 40mg of Prednisone for 6 days, then 20 mg for 12 days. The pain went away immediately. At the end of this course the pain returned, so she continued the Prednisone at 5mg and had me complete bloodwork. There were no markers in my bloodwork to indicate PMR so she kept me on 5mg and referred me to a rheumatologist. The first appt I could get with a rheumatologist was in three months. I tried to keep optimistic as the time passed and the pain increased. When I finally got to see the rheumatologist he ordered more bloodwork and a series of x-rays. Again no markers in the bloodwork and nothing outstanding in the x-rays. He got the results of the tests, but wouldn’t prescribe a higher dose of Prednisone until we meet again. I told him how well the Prednisone had worked previously but he wouldn’t increase the dosage. I am still waiting for my 2nd appt because he had to go on vacation for a week. The pain started in March and my 2nd appt is in Aug. Rheumatologists deal with people in considerable pain; is it common for them to appear to care so little about how debilitating the pain is. Prior to the outset of the pain I worked out religiously because I have suffered two heart attacks. I haven’t been able to do anything since March. Even stretching has become difficult. I have no quality of life while I sit and wait for my rheumatologist to make time for me. Sorry that I’ve been so long winded but I’ve never experienced this kind of treatment by a medical professional before and I am angry and frustrated. Is this out of the ordinary or are most rheumatologists like this? Please respond!!
Rheumatologists : Anyone have a similar experience... - PMRGCAuk
Rheumatologists
I'd stand well back - you might get flattened in the rush to reply! It is an appallingly common experience, particularly I dare to say in the USA. They simply don't understand how PMR works ...
I agree, Facebook groups are full of people from the USA who have been 'treated' by rheumatologists who think PMR is over in a month if you take steroids, or that it'll magically go within 18 months. Sadly it also happens all too often often in the UK too, particularly the 'you can't possibly have PMR you're too young' or 'bloods show you haven't got PMR' lines.
I'm in the US...I was diagnosed by my GP in 5 minutes and put on prednisone. The doc allows me to taper at my own rate. I'm at 3mg after 2 years...he has no problem with me staying at this dose for an extended period.
That's fantastic, please if you're on Facebook share your good experience on the PMR- Polymyalgia Rheumatica Support group and other groups, they could do with more positive stories. The most common problem is people doing the fixed taper their doctor told them to do of going down by 1 a month and encountering problems. What do you attribute to your success, was it going slowly? Did you ever have to go back up for a flare? Any tips to pass on?
Thanks for your kind reply! I did have one flare early on due to tapering too quickly. This was before I discovered this wonderfully supportive group that taught me that the purpose of tapering is not a relentless race to zero, but to reach the point where the lowest dose of prednisone controls your symptoms. My doctor has been cooperative. I have occasionally shared on FB...I'll try to contribute more.
Yes, here in the USA they do not understand how PMR works. I had to switch to a different rheumatologist because the one I was referred to by my GP had no empathy about the pain I described. The rheumatologist I see now is more lenient and understands that 1/2 mg prednisone can make a difference. I am still on 10 mg and not able to lower without fearing a very painful Palindromic RA flare up.
You have obviously been left high and dry. Is there any way you can return to your GP and get a normal dose of prednisone? You might do very well at 15 mg, a better starting dose than the 40 you received, or perhaps 20. But whatever happens you don't stay at that dose, nor do you stop it abruptly. You taper slowly to find a maintenance dose that continues to manage your symptoms properly until the disease eventually goes into true remission - several years perhaps. Often a very low dose with no significant side effects works well for someone with PMR. If you have no complicating issues there shouldn't be any reason why a GP couldn't prescribe your pred and give you occasional blood tests.
Up to 20% of patients never have raised inflammation markers.
As it is you are taking 5 mg pred with no benefit which sounds like very poor medical practice to me. Your doctor is being negligent.
Little need for me to say a word,the first four words of PMRpro sums it up. I don't suggest they are all a pain in the proverbial but mine demonstrates a level of arrogance it would be difficult to match. Even my G.P. accepts that her main problem is,now listen to this, she doesn't listen !!!! Serious,how the hell does anyone get past that ? I do feel sorry for you but I'm not surprised,in fact I am still in shock to find that so many people have this fight when suffering from a terrible disease. Good luck.
I am so sorry that you have been put through this. Your “treatment” does not equate with any treatment protocol I have ever seen. We would all respond in exactly the same way as you. I will never forget the pain and stiffness and the sheer lack of mobility, I experienced before appropriate treatment.
As Heron has said, you need 20 mgs per day immediately, probably for about 6 weeks, then a very slow taper of never more than 10% of your dose, using one of the taper plans that appear on here as a pinned post.
Firstly though, you need a doctor who knows what he or she is doing in relation to PMR and GCA as a matter of urgency. Stick with us for trustworthy advice on each stage of your disease and start searching for a good doctor. I wonder if any of our American members have recommendations in your part of the US?
Sounds horrendous. I am lucky as my GP really listens and is happy for me to dictate pace. I have told her about the advice from FB group and here to go really slow tapering and alternate as you go down. Rheumatologist has stalled my tapering advicing me to stay on 8mg for 8 weeks as I was going too fast!!!
Thank you all so much for your responses. You have more than validated my thoughts on how I’ve been treated. I didn’t think my PCP handled things properly, but I really expected more from a specialist in the field of rheumatological illnesses. I had thought that, with the info I gave him at our first meeting, my records from my PCP and the results of the additional bloodwork and x-rays, he would start me on a higher dose of Prednisone. Instead I got an appt to review the test results after he returns from his vacation! I’m not even sure he’ll confirm a diagnosis of PMR and prescribe the Prednisone I need. I’m a pretty passive person, but I may lose it if I don’t get some relief soon!
20mg is probably all you need - 15mg might be enough. But 5mg is NOT.
Sounds like you need 15-20 mg and a new doctor, maybe 2 new doctors.
Well this is just awful! I’ve been in a similar boat in that I’ve been waiting to see a rheumatologist for almost 3 months. Mishandled prednisone, long story, but my doctor has not allowed me to suffer thankfully. However my markers were negative too. The problem I just experienced is that I went to the ED last night with a GCA scare ( blurred vision, headache, etc) and the practitioner gave me a script for additional prednisone so I can increase my dose until I see the specialist. Well the pharmacy won’t fill it!!!!!! They say I have more than enough Pred and shouldn’t be seeking more. I tried to explain that I have an autoimmune condition and that my very sight can be threatened and my dosages may change frequently. Nope. Won’t fill it. So in my case it’s not the doctor but the pharmacy!!!! Well I made some calls and got myself fast tracked an moved up my appt with an out of town rheumatologist rather than waiting around for the locals. I will now see the rheumatologist on this wed. I hope my experience there is better than yours. I’m in the United States too. I will report back.
I don't believe it - anyone would think it was a listed drug! And that a pharmacist argues with a doctor's prescription - I don't believe it. He was potentially putting your sight at risk.
Oh believe me, I told him!!!!!!!!!!!!! And I could not believe it!!!! You would think I was trying to get narcotics! I was appalled. But I got my appt moved up!
This is insane!! Do you not have access to another pharmacy??
Oh yes but the pharmacist called the emergency room to “ clarify that they knew I already had some prednisone “. Well I had gone the night before and this was the next day. So the practitioner wasn’t there. They decided it must have been a mistake and cancelled the prescription. So not only did this pharmacist refuse to fill it, but he got it cancelled. I will definitely be filing a complaint. This man has no business treating people this way. Narcotics are the only drugs they are supposed to police.
Even more insane! A complaint is definitely in order. As if you weren't stressed out enough all ready. I hope you get what you need ASAP.
Fortunately I really do have enough prednisone, at least for the moment. But the practitioner wanted to make sure I had enough to increase the dose even further if necessary. That pharmacist could not understand that it’s not something you take “ one tab daily”. The dosage may fluctuate. He literally could not get past it. He kept saying “ this is a duplication”. This whole thing has been hard enough without having to fight with a dimwit pharmacist. I’m not going to let it drop. I had to calm down but I will file a complaint. And after I see the the rheumatologist I’m sure I will have yet ANOTHER prescription, which I will fill at a different pharmacy!
Not that this was your situation, but . . . Sometimes it’s the fault of the insurance company. My insurance wanted prior authorization from my doc before they would fill my script. I asked them if I could get it filled without insurance, and, if so, what would it cost. I didn’t want to have to wait so I just paid without insurance. It was a minimal cost.
Oh no this wasn’t insurance. It was the pharmacist. I specifically asked if it was an insurance thing as that was my first thought. Nope. He said I already had plenty. He was calling it a duplication despite my explaining the reason. Made me so mad!
He's overstepping his role! If your Doctor deems that you need more prednisone it is NOT up to the pharmacist to dispute it. I'd be seething mad.
Since when can a pharmacist refuse to fill a prescription written by a doctor! I think perhaps his pharmacist needs to be reported to our insurance company at the very least!
I had no idea they could do that. I’ve emailed the pharmacy to find out how to file a formal complaint. If they don’t respond I’m going to write a letter and send it to the local pharmacy where it occurred as well as corporate headquarters. I want it in writing, not via phone call.
You need to report the pharmacist,he needs to be overseen for a while or receive re training.
My pain started after a hernia op..in 2017... GP... suffered ever since whilst GP and Rheumatologist tried to diagnose the issue... initially thought PMR but went down the Ankylosing route and medication that had no affect... only recently have they gone back to PMR and put me on Prednisolone which has certainly helped. However typical appointments are 3,months apart.. though now on taper program I don’t have another appoint until Jan 2021.
Dreadful experience you are going through! You desperately need to go back up and start again - get your life back. I tapered way too fast because of fear of Covid and was down to 3mg. Terrible flair. My Doctor put me up to 10mg - didn’t work. Then 17mg - bit better but still pain. She has now done 30mg for 4days - all now great and I start again dropping tomorrow to 25mg. This is what you need. Hope so much you get sorted soon.
You will have received all the advice you need here but I just want to to say how very sorry I am that you've been treated so appallingly. You are within your rights to ask your GP to refer you to another rheumatologist as you should NOT be expected to wait until your current one returns from his holiday when he will likely have a backlog to deal with. Tell your GP that he/she will understand that stress is excacerbating your symptoms and that you need help NOW.
Thank you! I’m going to see
what happens this coming Monday when I have my 2nd appt. if I leave without a script for at least 15-20 mg of Prednisone, I will be doing exactly what you suggest! There’s no excuse for the delay in treatment. I understand being cautious, but at who’s e Penske?
At whose expense- not at who’s e Penske. “Auto correct” corrects nothing!!
You can edit posts on this forum. Just click "more" below the reply you want to edit for your options. 
But if she didn't do the blood work until after you had been on pred for 18 days, you may have had raised blood markers before these high doses of pred reduced it!!
Absolutely! And when I had my second round of blood tests I was on 5 mg of Prednisone, not enough to rid me of pain, but enough to suppress my SED results. I think the people in this group are more knowledgeable about PMR than some doctors!
Well, we've earned our t-shirts!
Suggest you go to an established Clinic. I was treated very well at Marshfield Clinic in Wi. I also like Mayo Clinic. My Rheumatologist at Marshfield did an excellent job of guiding me through the process. He diagnosed me immediately and I will have my last appt August 10. First appt was in January 2019.
Yes unfortunately my own dealings with a rheumatologist were not good luckily I just deal with my gp now, my one regret is that I didn’t report him he was so rude and arrogant and would not listen and quite frankly didn’t have a clue about PMR I hope your able to find one that does
Really sorry to hear that you've had such bad treatment and you certainly don't want extra stress! I would ditch the rhuematologist, go back to the doctor armed with the evidence of PMR research and how to manage the symptoms.
Hope you get sorted very soon.
You certainly have my sympathy, I started on 15mg about 5 weeks ago and am struggling to reduce slowly, fortunately doctors in this part of Scotland are more attentive. I could not see a pharmacy arguing with a doctors prescription but they may refuse to issue more if they thought excessive stockpiling was taking place.
The doctors simply DONT FEEL YOUR PAIN
Agreed! A good doctor should be able to listen and give credence to what we are telling them. Too many doctors lack an empathy gene.
I would try to find another rheumatologist, says the girl who is not happy with hers and about to ask her PCP to take over her treatment. Mine refuses to dx PMR because I am under 50. (49, yes way under age 50) So we are constantly at odds with my treatment. I have reduced from 20mg to 6.5 in 1 year. That is tremendous progress and yet that is not good enough. I have to justify my dose at every monthly refill and now they are forcing me to try RA drugs to keep my prednisone. It is ridiculous all because she refuses to see the obvious. Yes I am 49 but my symptoms match PMR 100%. They do not match RA. I have tried both rheumys in my area and the second was worse than the one I have now. That said, I have to make a change. Either travel to see someone who will listen or convince my PCP to manage the rest of my taper. Hang in there. Educate yourself and fight for what you need!
For what it's worth - and I realise it isn't your difficulty - this is the 'paper' that I aim to send to my rheumatologist just before our next appointment (together with an update on my symptoms and progress). I should say that I do not know how much he knows about PMR but I am assuming the worst, just in case.
Start
Very slow tapering from 10mg to 5mg Prednisolone.
The latest BSR/BHPR guidelines (2009) recommend 'reduction by 1mg every 4-8 weeks or alternate day reductions (e.g. 10/7.5 on alternate days) after a dosage of 10mg for 6 weeks. And the guidelines continue ‘there is no consistent evidence for an ideal steroid regimen for all patients. Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course. Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes'.
This is supported by studies summarised by Ameer (2014)[1] and by Hernandez-Rodriguez (2009)[2]. Ameer states that slow tapering of the dose reduces relapses. Hernandez-Rodriguez recommends “a tapering rate of less than 1mg per month” after reaching a dose of 10mg.
What has become known as the Bristol regimen (Quick and Kirwan 2012)[3] suggests a reduction of 1mg per month following a programme of 15mg for 6 weeks, 12.5 mg for 6 weeks and 10mg for a complete year. The writers point out that published evidence suggests that “stopping PMR treatment is feasible from two years onwards”.
Members of the PMRGCAuk Forum consistently remind members that people with PMR should not reduce prednisolone by more than 10% of the previous dose per month after reaching a dosage of 10mg. The Forum contains many stories of relapses due to tapering too fast.
Guidance to American medical practitioners (updated May 2020)[4] also quotes the Hernandez-Rodriguez article, advocating tapering of less than 1mg per month. “A slow tapering of the prednisone, less than 1mg/month, was associated with fewer relapses. Once prednisone is tapered to 10mg/day, a slow taper by 1mg every 2 months until treatment discontinuation was associated with optimal control of disease activity.
Professor Bhaskar Dasgupta is on record (in a webinar presentation to members of the PMRGCAuk charity on 20th June 2020) as supporting a lifetime of medication at 2mg for some patients. There appears to be wide international support of the Dasgupta article of 2012[5] which recommends 15mg for 2 weeks, 12.5 mgs for 2 weeks, 10mgs for 6 weeks followed by alternate days of 10mgs and 7.5mgs for 4 weeks, then 7.5 mgs for 10 weeks then tapering ‘according to treatment response.
Mackie et al (2014)[6] reported that “there is substantial variation in time to cessation of glucocorticoid therapy”.
Finally, I would like to quote from the seminal work by Kate Gilbert (2nd Edition 2016[7]: “Are you having trouble getting down below 10mg per day of prednisolone? If so, you are not alone! Coming down from the initial higher doses for PMR, and even for GCA, at 60mgs a day, may not be difficult, but once we are down below 15mg things may start to get harder. Many of us find it incredibly hard, and discover that when we try reducing from, say, 8mg to 7mg, all our symptoms seem to come back with a vengeance.....At the first international symposium on PMR and GCA, held in Chelmsford, Essex in 2012, an Austrian consultant said that he puts his patients on a very gradual reduction indeed. His patients, when getting down from, say, 8mg to 7mg daily, will spend a week with six days on 8mg and one on 7mg. The next week, five days on 8mg and two on 7mg (not together, say, Sunday and Tuesday). And so on until the whole week is on 7mg per day. This means that the reduction is a bit slower, but the body gets fooled, not really noticing the drop, and adapts itself to the lower dose. This is also a good way to 'switch on' the adrenal glands that have been dormant during the steroid treatment, when the dose gets really low, less that 5mg per day. If you think this kind of reduction programme might suit you, and prevent you having flares and suffering pain and stiffness while you are reducing, why not discuss it with your GP or consultant?”
I would like to follow this regimen and taper now from 10mg at 1mg every 7 weeks until the dosage reaches 5mg when I feel it should be reviewed in light of developments.
[1] Ameer: 'Polymyalgia Rheumatica: Clinical Update' in Australian Family Physician 2014.
[2] Hernandez-Rodriguez et al: 'Treatment of Polymyalgia Rheumatica: A Systematic Review' in Arch. Intern Med. 2009
[3] Quick & Kirwan: 'Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell (temporal) arteritis' in Journal of Royal College of Physicians, Edinburgh. (2012)
[4] Saad & Diamond: 'Polymyalgia Rheumatica' in Medscape. (2020)
[5] Dasgupta et al: 'Provisional Classification Criteria for Polymyalgia Rheumatica: A European League Against Rheumatism/American College of Rheumatology Collaborative Initiative' in Arthritis & Rheumatism Jnl.(2012)
[6] Mackie et al: 'Outcomes of Importance for Patients with PMR' in their report to the Special Interest Group at OMERACT 11. Journal of Rheumatology (2014) Vol.41 no.4.
[7] Kate Gilbert: Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd Edition pp94-97. (2016)
End
Something like this at least gets it into our record that we know what we are talking about!
Do hope you get better treatment soon.
Thank you for sharing this- I imagine that, in the not so distant future, this will be highly relevant to me.
Should have said - the articles I referenced, and many more, have informatuion that can be used at any stage. Obviously I was selective to my condition. And I tried to write it in a 'non-threatening' way!
Interesting and clearly written. One thing I might have referenced more strongly is the fact that the disease is very idiosyncratic and we are all different and our ability to taper varies. I, for example, was not able to manage an alternating dose, And would never have considered one like 10/7.5. Some manage it, but with a much smaller variance between the daily doses.
Also, it's important to get your doctor's blessing but you don't want to lock yourself into a taper plan which looks good on paper and works for many but turns out not to be the one which is going to work best for you.
I took in copies of a couple of slow taper plans to my doctor, one was Tortoise not Hare, the other Dead Slow Nearly Stop. Another often referenced on here is DorsetLady's Simple Taper which I think may be like the one you want to try. I didn't at that time have a copy of it. or I'd have taken that in too. Anyway, what I did was show her the tapers and ask her opinion, telling her I'd like to follow one of them. I fully intended to follow DSNS no matter what she said, but in fact after looking at them she said the plans looked fine. I wanted her on my side, and she reacted as I hoped. I also left that appointment feeling that my options were open if I needed to change something. About five years later I'd say this relationship has been mostly beneficial for me and I've felt supported.
Thank you. I accept your points and will amend. May be a good idea to ask his opinion but state my preference.
I usually copy anything I write to my GP and plan to do so. I think (!) he's ok but may not be up-to-speed on PMR. He is not good at paperwork/admin. One thing I cannot get my head around is the protocol between Consultant and GP - but I am proceeding carefully and expect the rheumy to refer me back soon anyway (only a guess). If that happens I feel I can 'manage' my GP.
Yes, it's always best to be a little deferential I find 
. What you really want is establishment of trust: you that you will receive the support and the prescription you need, they that you know what you are doing and are competent to manage your own condition. After all, none of us wants to be on pred, so it's in both the doctor's and the patient's interest to make the taper to the lowest effective dose as (literally) painless as possible. Good luck!
Thanks. If only I had been able to meet the rheumy face-to-face! Body language is soooo important, especially for those of us who have hearing challenges and rely on lip-reading to some small extent to pick up the f's, s's, b's etc .
Thank you. You have truly nailed my feelings on the subject.
Unfortunately, it takes many months to see a Rheumatologist. In 2007 it was six months before my first appointment.
Are you on Medicare? If so, you can see any rheumatologist you wish, without a referral. You obviously need more pred NOW. You should call as many Rheumys as you need in order to get an appointment ASAP. In the interim I would make my case strongly to your gp, assuming you have some kind of relationship with him. Sorry to say, but in today’s world, you have to be very proactive concerning your health, and do not take no for an answer!
I was diagnosed by my GP (in U.S.) on December 12 2018. As I was in great pain, in my quads, couldn't sleep at all, he prescribed 40mg for 3 days then down to 2omg. It worked. I asked him if I should go to a specialist and he replied that it was up to me. He did have several patients with PMR. He has let me manage my own tapering. I am down to 3mg. I think I would, perhaps, be a little lower if I had not tripped and fallen in the garden 2 months ago, which caused severe tendinitis in left quad. I stayed with my GP, because he had helped me manage my body for 15 * yrs, so after me knows it well.
I am so sorry this is happening to you. I am not sure if you live in an area where there are more than one choice for a Rheumatologist. I happen to be very fortunate when I found my Rheumatologist. Please see if there is another one available. Not all MD's have a good bedside manner.
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