Just saw my first rheumatologist yesterday, very confused by diagnosis?

[LarMarge6]

Can you have negative rheumatoid factor, negative CCP antibodies, no pain, stiffness, swelling or symptoms in the small joints (hands, feet etc) & it still be possible to have rheumatoid arthritis?

All of my symptoms for the past 5 and 1/2 months seem to be classical PMR (before I started taking prednisone: sudden onset severe stiffness, especially bad in the morning causing me to wake up paralyzed like a stone only able to wiggle my hands and feet & take upwards of 2 hours to get out of bed and bilateral pain in my shoulders and hips so extreme it would cause me to scream out loud) but the stickler seems to be my age.

This is the second rheumatologist that has flat-out stated that because I'm under age 50 (I'm 44) it is not possible for me to have PMR.

The first Rheum didn't talk to me, but did a peer to peer consult with my primary care doctor, who then took away my tentative PMR diagnosis.

Yet despite having none of the symptoms of RA or any of the corresponding markers for it, my new Rheumatologist diagnosed me with rheumatoid arthritis?

He gave me a prescription for 10 mg methotrexate which I'm going to start today. At this point I'm happy to try anything else to reduce my inflammation because as I stated in a previous post I've never been able to taper below 35 mg of Prednisone. For some reason I've been flaring badly for the last couple weeks and I'm back up to 55 mg and it's still not enough. Which is terrifying because of all the side effects.

All I want is to be able to reduce the prednisone and get off of it, but it's also the only thing that provides me any relief.

I was hoping he would be able to prescribe something more fast acting to quickly bring down my inflammation? But he just doesn't seem to be hearing me about how severe and disabling it is.

Instead he told me to start tapering down my Prednisone by 5 mg every 5 days, but he also said it could take up to a month before I start to feel any effects from the methotrexate, so I don't know how this is going to be possible when I am currently flaring and feeling I need more not less prednisone? I would be overjoyed to start tapering again as soon as I start feeling any relief from the methotrexate.

On 55 mg prednisone right now, it's getting hard to get out of bed again to go pee at night or get up on the morning from stiffness, I'm barely able to walk much using a walker, and needing assistance with everything and unable to do daily living activities without constant help of my family as caregivers. The rheumatologist & doctors just don't seem to hear me about how severe it is.

When I first started taking prednisone I got relief from 15 mg, but then every couple of days to a week the pain and stiffness would start to rapidly increase again and I kept having to ramp up the prednisone to try to counteract it.

I got all the way up to 100 mg before it finally felt like it stopped getting worse and started stabilizing! At that point I started tapering down which was going well, but I could not get down below 35 mg.

Also I started losing functioning and going backwards in my progress below 60 mg, however my doctor wouldn't listen to me and kept making me rapid taper. Which seem to precipitate a very bad flare that I have not recovered from to this day.

Honestly I feel like I'm at my wit's end and between the terrible inflammatory symptoms and the scary side effects of high dose prednisone I don't know how much more of this I can take.

If anyone has any suggestions or any other conditions they think I could possibly have I just want to get the correct diagnosis and start the correct treatment quite frankly I'm desperate at this point for any relief. Thank you!

***

I put a link below to a brief explanation I saw on the website that my doctor does telehealth through, mentioning for people who are younger that have PMR symptoms sometimes they can have another condition called spondylitis, but I'm not sure that sounds correct for my symptoms either?

telemed2u.com/rheumatology/...

[piglette]

If you have had to go up to 100mg to ease the pain it does sound like it may be something other than PMR causing the problem. I hope they have diagnosed correctly.

[LarMarge6 in reply to piglette]

Thank you I hope so too, right now I feel like a medical mystery & it's pretty scary. I just took my first dose of methotrexate a few hours ago and so far so good🤞

[piglette in reply to LarMarge6]

Hope it all helps.

[softekcom]

I was about your age when I started having symptoms. I was diagnosed with fibromyalgia, a diagnosis I did not agree with. After trying several pain relief meds my GP put me on Pred a month after my 50th birthday. (This was after years and years of seeing my state, none of which the Rheumies saw.) And the Pred helped like nothing else.

Of the 3 Rheumies I saw, 2 thought I didn't have PMR/GCA, one thought I did and wanted to test for MS. Despite positive for Rheum Factor + joint pain, stiffness, I have no meds for RA - because in their opinion I have nothing. It's all Fibromyalgia.

But this is my experience. Rheumies are extremely cautious with under 50s because of the side effects of Pred.

It is rather odd that they would diagnose RA without a positive RF, but not PMR w/o inflammatory markers. You haven't mentioned your inflammation markers, but I presume they must be high.

But feeling the full force of PMR on 55mg Pred is strange. That's high. So @piglette is right - very possible there's something else going on. High doses of Pred would make one feel unwell on their own. So there is that too.

[cranberryt]

Are you in the US? Doctors here absolutely refuse to believe you can have PMR under the age of 50. They will literally try to diagnose anything else to avoid calling it PMR. I have seen 3 rheumatologists who refuse to even consider the possibility that I have PMR because I was just shy of 49 when my symptoms began overnight.

One of them made a comment that if they call it PMR in the US, they have no other treatment options besides prednisone. By calling it seronegative RA, a bunch of other drugs become available via insurance. While that may be absolutely true, the doctors I saw refused to accept that I really do have PMR and that PMR can take several years to burn out (ie. more than 1), and sometimes require a lifelong dose of 1-2mg to keep flares at bay.

However, your situation is very different. I did respond to 20mg af prednisone and 4.5 years later am at 1mg.

You are still struggling with very high doses. So it makes sense for them to want to try different solutions to get you off doses that high and on to something less potentially dangerous long term. I am not sure methotrexate is the best option these days but it’s certainly the first one rheumy’s like to try.

I had very brief success with plaquenil but I had side effects and had to come off it within two months. But there are things they can try if it’s not PMR or if you don’t respond to typical doses of prednisone.

I hope you find relief soon!

[sidra1968]

I still had pains at 40 mg, but it doesn't sound like they were near as bad at that point as yours. 55 is high, obviously. Took 5 weeks at 30 to sort me out, some days took 35. Nothing else works like Pred on me though, a flare pain goes within 1.5 hours after a dose, sounds like that isn't the case with you. Hopefully you will get some answers soon.

How long did you stay at 35 mg? Once I felt so much better at 30mg after a week or 2 weeks (don't remember exactly) , my doc told me stay on it another month..which thrilled me and I'm glad I did.

[AtopicGuy]

You haven't told us what your CRP or ESR tests show. The vast majority of PMR patients have high levels of one or both. These levels (and your symptoms) should have improved on much less than 100mg of prednisone/prednisolone, if you have a rheumatoid autoimmune disease.

There are several neurological autoimmune diseases that require up to 100mg to bring relief. Patients with those quickly get switched to non-steroidal immunosuppressants to avoid the side effects from high doses. But more information would be required about the onset of your symptoms and blood test results before going down that route.

My first rheumatologist declared he was stumped, because I responded well to 20mg/d of prednisolone, my blood tests were all normal, my symptoms started before 50, and I don't have a diseased joint in my body. He then offered to diagnose RA anyway! I've also lost count of how many times I've been offered a diagnosis of CFS/ME or fibromyalgia, despite the fact neither of them respond to steroids!

I look forward to hearing more about how your symptoms started and your blood tests.

[PMRpro Ambassador]

I really don't think you fit with the criteria for PMR - not because of age but because of the amount of pred you have required. The characteristic of PMR is that it responds well to moderate doses of pred and if anyone needs more than 30mg then more investigation is needed as to the cause.

I think he's being a bit unreasonable about the speed of taper under the circumstances but there isn't much you can do since he is the keeper of the pred purse strings.

Methotrexate is a fairly standard first line approach in rheumatology to be able to access other drugs - once the MTX has failed they have a stronger argument for funding. There is little other than pred that is fast acting, all other options have to build up in the body first. 10mg is pretty low - but as the starter dose means you are less likely to develop adverse effects.