Confused & frustrated!

I wrote a post on here and had one reply, so obviously I'm not doing something right. I'm so upset right now I thought I would give it one more shot for advice of any kind.

I was referred to a dr for nerve testing by my GP and after he completed this and looked over all my additional blood work said he felt I had PMR. He said I matched all the criteria. He put me on 10mg of steroid twice a day for 5 days, then once a day for 5 days until I had my follow up with my GP. I had been on a steroid once before, a month ago after seeing a fill in dr for arm/shoulder/neck pain and this time I had the very same results, two pills in, all pain/stiffness gone.

I saw my GP today as a follow up. He totally disagrees with this diagnosis, does not want me taking a steroid due to side effects and ordered even more blood work. He feels I need to see a rheumatologist and called to refer. First available appt. is September 13th!!! I am to stop the steroid and I know for sure what is going to happen as cutting back from 10mg x2 to x1 a day has brought back the pain/stiffness this morning already. I have had one week of feeling human again since starting the steroid and I'm so frustrated right now.

I live a very rural area, no sick days from work and starting over with another GP is really not an option at this point. I don't know any practice taking new patients. I'm at a loss. Can anyone advise at all?

37 Replies

  • Is it worth paying for a private appointment with a rheumatologist?

  • I have an appt with a rheumatologist but can't be seen until September.

  • Yes but privately you'd be seen next week!

  • How do you get a private appointment?

  • You're in the USA aren't you? Your system is entirely private isn't it? It is different for most people on this forum who are in the UK.

    Not entirely sure how your system works but usually you call the office of the doctor you have decided you want to see - you need one that is covered by your plan or you can presumably choose to be billed for the entire cost. You'd have to discuss that with the office receptionist. Or you call your insurance helpline and ask them.

    I've just read through the rest of the thread - SusanEleven has posted 2 replies further down that are very pertinent to you and she is in the US. If you already have been referred, call that office and discuss it with them and see what they can offer.

  • not in the US.

  • Why does your latest gp dispite diagnosis. I fo sympathise I lived for 14 month with pmr before my rheumatologist conceded that my GP was right. Can you not see original GP? A lot of Drs disute diagnosis because blood tests are normal 20% of pmr patients have normal bloods, I was unfortunate that I was "too young" as well. Is there another GP at the practice that you can see? PMRPRO is very good at providing literature to educate the ignorant GP. Have you enough Prednisolone to continue? I wish I had answers, keep fighting your corner, take care x

  • My GP says my blood work does not show PMR. Normal SED, but high end of normal, can mean lots of things.

  • I don't know what your GP's reaction will be if the rheumy diagnoses PMR, but if the rheumy is clued up he is going to know that 1) around 1 in 5 patients with PMR never have raised blood test markers, and 2) in the absence of raised markers if a trial of steroids reduces the pain by around 70%, then that is usually taken as confirmation of PMR, especially where other conditions have been ruled out.

    And I see on reading your first post a few days ago, you mentioned your CRP was 28. The normal range is 0-10 (0-5 quoted by some labs). So contrary to what your GP has said, that could be a sign of PMR.

    If another GP is not an option and as you have such a long wait for the rheumy appointment, would a private appointment be an option?

  • I specifically said I thought 28 was high for my CRP & he disagreed. He said typically with PMR it's in the 100s range so I'm still normal. I'm not sure what a private appt means. I'm in the US. Your GP must refer you to a specialist, then you wait for their availability.

  • mo3go7,

    Just for your info, my CRP was 26.5 and PMR 56 when I was finally diagnosed with GCA. That's was after18 months of being undiagnosed - fatigued and in extreme pain, and losing the sight in one eye!

    As others have said you have a few options - keep going back to him, if he called for more tests presumably you have a follow up appt taking someone with you who can confirm your symptoms and maybe be more forceful on your behalf, see another GP within practice, contact Rheumy's office requesting cancellation appt if one comes up. Obviously if symptoms become really bad, then visit Emergency, nearest hospital.

    Sorry, but there are lots who have been in your situation, and yes it is very frustrating, but you just have to keep battling on - at least you have a Rheumy appt albeit 3 months away.

  • I'm also in the US. Your GP sounds woefully uninformed. My CRP was 38 and the rheumatologist said that was high. I had difficulty walking because of hip/groin pain and could not raise my arms to do things like brush my teeth, comb my hair or put my jacket on. Within six hours of my first dose of steroids I put my cane away and could raise my arms.

    My rheum doc said there is no testing that can definitely diagnose PMR. She ran blood work that she said ruled out some other possibilities. Based on the physical symptoms I reported (which she said were so classic with what she hears from other patients) and my fast response to the steroids, she was comfortable/confident in treating me for PMR.

    You can call the rheum doc's office and ask to be notified of any appointments that open up because someone else cancels. And your medical group may be like mine, with several locations, with the rheum docs working different days at different offices. Sometimes you can get an appointment sooner at one of their different locations.

  • Also, I've often respectfully and successfully pleaded with the "gatekeepers" at a medical office, whether the receptionist or a nurse who responds to incoming patient calls, for more timely appointments if I felt like I was being ignored or not taken seriously. The rheum doc's office you're being referred to might not even be aware of the extent of your pain issues, just that they've been asked for a consult which your GP may have said was not urgent.

  • I did call back in today to the rheumatologist practice. No appointments available at any location until September 13th, I offered to travel wherever. They will add me to cancelation list once I receive, fill out, send back their new patient packet. She could not make any promises of an earlier date. I also called a second practice in a larger city within driving distance. Same story, end of August or September wait. :(

  • I'm in the U.S. As well. My insurance allows me to see doctors that I want without a referral, although some of the doctors want them anyway. Call the insurance company and check. I needed to wait a month to get an appointment and was given pain pills and muscle relaxants that did nothing. I had been taking Aleve ( naproxen) but was told to stop because it was masking symptoms. However it was the only thing that allowed me to move! If you return to the GP once you're off the prednisone and the pain has returned would he reconsider giving you another prescription until you can get to the rheumatologist? Also, if you fuss at him, can he call and get you an appointment sooner? I was not happy with the treatment I was getting locally and have chosen to drive 1.5 hours to a rheumatologist at a well known teaching hospital. It took 3 weeks to get an appointment there but I was on medication so it didn't matter. The other option, although it's expensive is to go to the hospital when in pain. They will have to treat you and have rheumatologists on staff.

  • Oh my what an unpleasant place to be in! Is there a second GP at the medical office who you can turn to? Have that person look at your results for a second opinion. You're going to have to advocate for yourself, it's hard to do within the system, but don't give up. It's your body and life, fight😃

  • Thank you for your reply. I just don't think anyone will do anything different within that practice. But if the pain comes back I certainly will try. My GP also said PMR is more weakness but the pain I'm describing. His opinion is completely different than everything I've read so far.

  • I wonder if you have someone who knows the condition you are in who could accompany you to an appointment with the gp? I'm shocked that you are not being taken seriously, and that the level of knowledge about PMR is apparently so poor. There is some literature that has been published, maybe you could take a copy to the doctor? And the presence of a friend or family member could concentrate your doctor's mind a bit. Nothing like having someone sitting there quietly, taking notes. (Nothing aggressive, of course, you want to get that doctor on your side.)

    (especially the Bristol Paper)

  • I'm no expert but I would have thought the magic response to steroids would make some impression on your arrogant and unfeeling GP. I have, or have had what would be mild PMR and the first rheumatologist, far from discounting pain as a symptom, was very irritated by the fact that I couldn't be persuaded from my calling it a very unpleasant ache rather than a pain. Like many others with PMR I had the magic response to preds within hours of taking the pred . If you can take a friend or relative, they can be alert to any departure from listening mode on the part of the GP. I have the impression he is one of those who are over ready not to really believe what the patient is telling them due to never having had any real illness themselves. A clue might be whether he prescribed any painkillers or not ?

    If you want to go private , your GP has already referred you so I think it is just a question of ringing the Rheumatologist in question and most probably you will get in earlier and get more time to explain your symptoms and have them explained to you in a private appointment. This does not mean you cannot revert to the NHS S ystem immediately thereafter.

  • Do you have enough prednisone to take the prednisone you feel keeps you comfortable? If so I would have have to keep taking it? If so, I would have to keep taking it.

  • I have two pills left of 10 mg. After decreasing to 10 mg a day my pain/stiffness has returned. This morning I can hardly walk and can not lift my arms without pain.

  • Mo3go7 what a horrible experience for you and certainly not something you should have to contend with on top of having PMR. As others have suggested I would ring the rheumy and get a private appointment. I was lucky in that I had private medical cover in my job and was seen within 2 weeks, I was the one who couldn't get to the appointment sooner! I'm now paying to see the rheumy at £100 a time but well worth it for the depth of knowledge along with the support and time o explain everything. The steroid regime your doctor put you on was also strange as I believe the normal is 15mg once a day and most people get a dramatic response, mine pain went within 8 hrs of taking the first dose. This all started for me about 2 & 1/2 years ago and I have recently taken ill health retirement at age 59. I wish you luck on your journey.

  • He's talking utter rubbish - there are very few people who have an ESR in the hundreds and more often than not they have GCA. And PMR is denied by most rheumies to be "weakness" - many patients describe the feeling as weakness but it is the feeling of lack of power which probably comes from the stiffness and pain that prevents us doing things. As someone else has said - arrogant and ignorant I'm afraid.

    I'm sorry you didn't feel answered in your first post but in the absence of another GP to see or a way of seeing a rheumatologist privately (and I think you said that quite clearly then) there is very little that anyone can advise. If that is so you have little choice other than to wait for that rheumy appointment in September. Many of us did wait a long time to see a doctor who recognised PMR. It took me 5 years!

    None of us has a miracle way of managing the pain and stiffness - if we did, none of us would be taking pred! I did make some suggestions that make it a bit less uncomfortable if they work for you so if you look at your other post you will see them.

  • I did see your suggestions and appreciate so much your reply and help in any way. It's just so frustrating to be on the steroid and feel so pain free then be told that isn't the answer at all & stop. I don't know how insurance works for others, but my employer plan is you pay for all tests, dr appts, etc until I meet a high deductible, so more tests mean more money coming out of my slim pocket. I have three pills left, so I know by the weekend I will be in full pain again and that's hard to think about. Again, I know no one has an easy answer, I'm just upset. Thank you all for listening!

  • It isn't an issue for most of us, in Europe we have state-funded healthcare so no deductibles to meet.

    I know you are upset - but your only answer at present would be to go back to the doctor who decided it is PMR. Can he not continue to supply your prescriptions? Pred is cheap as chips in any country, even the US I imagine. It is getting the prescription that is your problem.

    But I wouldn't stay with your GP who seems a poor clinician and apparently not particularly caring. Just because he is scared of using pred - and many inexperienced doctors are - it is unfair to make you suffer when someone has made a diagnosis. Were his allegations about ESR and symptoms true it would be fair enough - but they aren't. But if you live in the sticks I do realise it is difficult.

  • My suggestion may stir up a hornets nest with your doctor, but I would search the internet for Info abut PMR that contains details of ESR readings if there is such a thing and I would then print it out and stick it under his nose and ask him why, when the steroids took the pain away straight away and tests show raised readings and no other apparent cause, does he say that the other doctor was wrong? And then tell him that you want to go back on 10mg of pred daily at least until you have seen the rheumatologist. But that's me. I can be very bolshy when my buttons are pushed. Good luck.

  • Your situation takes my breath away. What a useless GP - he is wrong on just about every level. If the pain gets bad enough, would it be possible to admit yourself to the Emergency Room and hope to see a doctor who will actually listen to you and take you seriously?

  • The return of pain so quickly sure is an indicator of a problem. Consider printing off some of the many materials available pertaining to PMR diagnosis and see the GP again and/or go to the ER.

  • Ehi there, I had exact same reaction from my internist, didn't agree with my Rheumy on diagnosis but I had all the same symptoms and since Feb of this year pain free on the pred after trying every other anti inflammation drug out there. I personally would not stop the pred until I saw the Rheumotologist, especially if you were feeling better. I have seen three different Drs, now with an excellent one who is so on top of all the latest regarding PMR and G CA and he said it can take up to a few years of the pred for some to put this illness into remission. I'm not suffering with any major symptoms, not everyone does and the few that may be there are well worth not being in pain. Yes my eyes are not as strong but they said my vision is the same as before starting the pred and at least Im not losing vision. Good luck and try to stay positive as this can be very frustrating at the beginning.

  • It is really difficult when the professionals cannot agree. I find it difficult when you found the steroids had an impact on pain release that a drink has stopped them. I know if you take them for any length of time you will also have the problems of withdrawing from them. If it was me I would be tempted to ask for a second opinion. I went through pain and stiffness for 2 years before steroids were prescribed

  • Mo, where are you in the states, I'm in Michigan? You need to be on Prednisone, no doubt!!

  • I'm in rural Ohio.

  • You need to find a Rumy that will get you in now, you need a recommendation of a good one that will help you and not make you wait. Plead your case with the girl that you talk to on the phone. With PMR Prednisone is your only hope, nothing else will work as far as I know, and I've been on it for over 5 years.

  • I think you have all the symptoms of PMR,

    And Prednisone is the right medication.

    I was diagnosed a year and a half ago,

    Had got down to 2mg a day , had a flare up, back on 10mg s day for 10 days, have titrated down to 5mg per day and will stay

    On that dose until Sept. I do see a Rheumatologist. Two blood test results

    That are pretty accurate in diagnosing

    PMR are the ESR and the C Reactive Protein.

    I go to a Rheumatologist at the Mass

    General in Boston and they are s teaching

    Hospital for Harvard Medical so one of the best. Side affects minimize with a dose

    Of Prednisone under 5 mg so that is my

    Doctors goal. Good luck

  • I too see a rheumatologist at MGH . I see him in a couple of weeks. PMR and on Prednisone for 3 years. Trying to get off the

    Meds, but can't seem to get below 5mg without symptoms.

    Tired and lots of heartburn, along with stiffness in the hips and legs.

    Think my Doctor is the Best!

  • PMR lasts for an average of 5 years according to the standard German rheumatology textbook - and that certainly fits with what I see on the forums. It is the Uk and USA who have a fixation with shorter duration.

  • Where do you live?

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