I am so frustrated I could spit nails...

[GOOD_GRIEF]

Saw my rheumy this morning in New York.. This was our second consultation. My prior rheumy, her partner, transferred to a practice office too far away for me, so I switched to her. (I was none too happy with him either, so no loss there.)

All she would talk about was reducing pred and insisting that what I have is Late Onset Rheumatoid Arthritis. I told her in our initial consultation and in today's meeting that I have never had any pain, stiffness, swelling or redness in any joint in my body in my entire life unless I had injured it, that I have not injured myself in any way for years, that none of the sites where I had once injured myself have given me a moment's trouble in all the time since they healed, and no joint had bothered me since the onset of my symptoms in late October/early November last year. All of my symptoms have been in my upper arms (specifically biceps), then my fingers, then my thighs (front of both early on), then my Achilles tendons and calves, and lastly in my outer right thigh.

From the onset of symptoms, it took me 10 weeks to get a rheumy appointment. I was prescribed 10mg for 2 weeks which did help some (I could bring myself to a sitting position without moaning.) Then I was given 15mg for a month (I could manage to dry myself after a shower but walking was very hard - pain in front of thighs). In March, I was finally given 20mg which made the real difference in clearing out the inflammation. In May, the original partner told me to start reducing going from 20mg to 18.5mg.

Immediately, my Achilles tendons and calves seized up. I went back up to 20 and waited almost 3 long months for that to improve enough to try another reduction. I went from 20 to 19.5 in mid-July, only to have the outside of my right thigh inflame. I went back to 20, and by the 2nd week in August, that resolved itself and I started my .5mg reductions. So far, so good on this try. As of this morning, I'm down to 18mg, stepping down by .5mg a week to 10 days

Both of these dr's have ignored my reports that none of my pain or symptoms are in my joints. The new one is calling my symptoms "referred pain" from LORA and/or osteoarthritis, and is pushing methotrexate, leflunomide or plaquenil while reducing pred. (I'm never going to take the first 2 suggested. Not ever.)

No matter how I explain to her that my joints don't hurt, are not swollen, are not inflamed, are not stiff, and retain the range of motion (even with muscle and/or tendon pain) I've always had since I was a kid, they don't get it. They insist I have LORA and/or osteo, not PMR.

Is there a way to convince her otherwise? My blood work (which I don't have in front of me right now) shows a decline in inflammation from pretty high levels in October to near normal just before I tried the reduction in May. I didn't have any blood work since then, (though I have a prescription for a full slate now).

There's no evidence I can see or feel that I have LORA or osteo. There's nothing on my xrays except what would normally be there for a 62 year old female. Yet she wants me to take medications that have their own set of risks to treat conditions I don't think I have, while fighting me over the medication to treat the condition I do have.

How do I get through to my doctor? Or do I just have to find someone else? I don't want to have an argument every time I see her. I want to work with someone I can trust, and who won't discount my experience in and of my own body.

[Rowboat]

Hi,

Nice to meet you but sorry you are unwell. I do not know a lot about PMR having just been diagnosed withe Temporal Arteritis. I do know a bit about the RA drugs you have mentioned though as I have had sero-negative inflammatory arthritis for around 30 years. Methotrexate made me lose a day every week with extreme nausea and body pain, ( helped with pain and stiffness on other days ) basically I never got out of bed on a Thursday. I have not been on plaquenil but I do know that when you are on it you need to have regular eye checks as it can affect your vision. Leflunomide ( Arava ) i was on for a while, it did not help my pain or make me sick. I have been on Imuran (Azathioprine) for about 15 years or so now, it helps me with the stiffness and pain. It has made some of my blood tests weird but not so much so that I have had to come off it. Over the last 2 years I have had pneumonia 3-4 times due to having mild emphysema as I am a smoker ( the quit plan is now getting a lot closer ) and during those times the Imuran was stopped as being an immune suppressant itwas stopping my body from healing. In saying that i have been walking around since last April with undiagnosed TA. The above meds can be useful in TA GCA as pred sparing meds. i have no idea if that is the same with PMR.

Hopefully someone with some knowledge of PMR will be on here soon. In the meantime keep up the good fight, I fought for over 18 months and a lot of tests, i now have a diagnosis (one I wished I didn't ) and can try and move forward in to hopefully a remission.

[GOOD_GRIEF in reply to Rowboat]

Hi Rowboat. Thank you for your response.

I'm not ever taking the mtx or the leflunomide. The side effects would make me lose my job, and as a result, my health insurance, and I'd be homeless inside a year. ( Health care provisions over here in the USA being a bit different than in the UK.) Having had cataracts removed a few years ago, and knowing that Plaquenil can have a detrimental effect on eyes, I did see my opthomologist in July when contemplating the Plaquenil. I'm all cleared with my eyes to take it if I need to, provided I have exams every 6 months if I'm taking it. But I've decided to leave Plaquenil alone until someone can show me a scientific reason why I need it. I'm not adverse to taking medications I need. I'm adverse to taking medications I don't need for conditions I don't have.

I am sorry to hear about your RA diagnosis. I hope you can find a way to manage it into remission without too much suffering.

My best wishes to you. Keep up the good fight...

[SheffieldJane]

I don't know what you do faced with such intransigence. Except change your doctor pronto. I am with you all the way in your assessment of your condition. They get us so lost that we can't find the way back. Wishing you all strength in this epic battle.

[GOOD_GRIEF in reply to SheffieldJane]

Hi Jane:

Thanks for your response.

The kicker is, now that I've looked at the rx for blood tests, that she's testing for Lupus in this set of bloods.

Really? No gastro problems, no depression, no thyroid issues, only fatigue comes from a 12 hour work day + a 3-4 hour round trip commute, no edema, I have my hair, no signs of kidney trouble, no shortness of breath, no heartburn if I take my medications with food, no swollen joints (again), no drymouth or gritty eyes (Sjorgen's), no skin rash.

I wonder what the heck she's fishing for. I have good insurance but she can't be that hard up for fees.

[SheffieldJane in reply to GOOD_GRIEF]

She just doesn't know does she? You have listened to your body and you know that the decrease in dosage did not work the first time because the inflammation hadn't quite died down. Now you are confident of doing a dead slow nearly stop in tiny decrements.

Your 12 hour working days and 3-4 hour commute sounds so punishing and impossible, good grief, Good Grief - it can't go on, surely?

Respect and good wishes Jane x

[GOOD_GRIEF in reply to SheffieldJane]

Actually, Jane, that represents a cutback from 14-16 hour days in the office. It's always been like this. Now I leave earlier at the end of the day and work at home dressed in my jammies.

This is NYC after all. "The city that never sleeps". There's more than one reason why that's our motto.

[SheffieldJane in reply to GOOD_GRIEF]

Well NYC is headed for a breakdown. Were you too busy to vote?😧

[GOOD_GRIEF in reply to SheffieldJane]

NEVER too busy to vote. In fact, today is Primary Day (when our party selected its final candidates for offices), and I voted before I came to the office.

[PMRpro Ambassador]

I think you need someone else who doesn't have preconceptions as to what you have. But even then you may meet the same problems - because finding it very difficult to reduce from 20mg is a red flag that maybe, just maybe, this is something else. And these are all drugs that are used as so-called steroid sparers - which plenty of US rheumies have a fixation about.

[GOOD_GRIEF in reply to PMRpro]

Thanks for your reply PMRPro.

I think the "something else" was reducing too fast and/or at the wrong juncture. Because this time around, dropping .5mg every 7-10 days is working. My symptoms are not getting worse or spreading this time around. I think the PMR just wasn't ready.

But I am not adverse to poking around to look for a different cause. I am not adverse to taking the proper medications to treat any condition or disease I have.

I am adverse to taking another line of meds without a logical reason, when all the logic points to PMR.

[PMRpro Ambassador in reply to GOOD_GRIEF]

Yup - sounds reasonable!

[GOOD_GRIEF in reply to PMRpro]

Thanks. Coming from you, that's doubly reassuring.

[kulina]

Hi, your circumstances are very similar to mine. Last summer, my local rheumy diagnosed me with RA even before doing any blood tests and recommended methotrexate for the rest of my life. I bulked, I was never sick in my life and now he's telling me to take a very serious medication for the rest of my life. I didn't believe it so I did my own research. When I suggested that it might be PMR, he refused to listen, I was too young for PMR. He did a lot of tests, including the one for Lupus, and I thought that was an excellent idea, to rule out any other issues. The tests came back negative all around except for the inflammation, which was high. He prescribed 20 mg Pred for one week and then reduced it to 10 mg. Needless to say, I was in pain all last summer hence, I took all my test results and went to a rheumy in Boston. They diagnosed me with PMR and we have a very constructive relationship since they listen to me and we work well together. They put me on 20 mg. Pred for 2 months and then reduced it to 17 mg and so on. I'm finally down to 7.5 mg. but at this stage, it's harder to lower it. I get stiff and tired. Keep track of all your test results and get a second or even third opinion if necessary. You need a doctor who will listen to you. You also said you didn't have any test done since May? And... your doctor expects you to reduce your Pred? I don't understand that. My doctor tests my blood every 2 months and if there's any slight increase in the inflammation she won't reduce the Pred. I don't see how your doctor can reduce your Pred without knowing what your inflammation status is. Also, it seems this doctor is causing you a lot of stress and with PMR you're supposed to avoid any kind of stress. My opinion is: get another doctor. Good luck and I hope you feel better.

[GOOD_GRIEF in reply to kulina]

Thanks for your response, kulina.

I am now shopping for another doctor. We'll see how that goes. It's not like there aren't any other rheumys in NYC. Her office was convenient to home, but I am looking around for someone reachable from the office. That will probably work out better anyway because she only works from 9-noon, Mon-Wed. Nice life, eh?

[GOOD_GRIEF]

Thanks for writing, Elizcarroll

I think I have a good diagnosis. I have PMR.

Now all I need is a PMR doctor.

[camerashy]

well gone on your tapering...I know it is a very slow process.

Good Luck

[GOOD_GRIEF in reply to camerashy]

Thanks, camrashy.

Hope you're doing well.