First Rheumy appointment (since PMR diagnosis by GP) totally disappointing! Sorry no question just bringing myself back to reality!

[Surami2020]

Sooooo.... Long story short after a telehealth visit- according to the rheumatologist I was too young in March 2020 to be diagnosed at 51 years old with PMR. Really! Was I expecting something different? I lived in the hope that maybe my case would have a different outcome to so many others diagnosed of a similar age. According to the rheumatologist you need to be older than 60 to be considering PMR as a diagnosis. I have pain on both sides of my body in neck, shoulders, upper arms, glutes, thighs and now my knees seem to be affected too.

He told me he thinks I have inflammatory arthritis.

I am having problems tapering and that is another reason for his diagnosis and because I have a lot of pain and the fact that I could get out of bed and I can't say that stiffness is bothering me ( due to pain levels mind you). I couldn't get up stairs at 8mg prednisolone and am struggling getting up stairs on 9mg.

So tomorrow I start methotrexate with some trepidation. By rheumy's comments he is looking at RA but I have no physical signs in my hands or feet or other joints. I have really good movement in my hands which impressed him. I struggle to get my arms above my head and he could see the agony I was in getting them up in the air. I have osteoarthritis in one knee.

What is really annoying though is that because I have a couple of cows and 3 horses I am to have blood tests for Q fever, brucellosis, and also rheumatoid factor all of which I have been tested for 3 times in the last 14 months. I do not have fevers but am having sweats which last about 5 minutes at time throughout the day and night. While you are at it he says let's do a chest x-ray and a mammogram.

So I continue with the frustrating merry-go-round of tests and see what happens next. Sorry about the rant. I wish you all the very best in your journey with PMR and who knows I may be back here when I turn 60...hahaha.

[PMRpro Ambassador]

He is WRONG - on all international guidelines he is wrong. Even NICE say over 40! I would be ranting too.

This was today? And you start methotrexate tomorrow? No screening tests for liver first? At least he is doing a chest x-ray.

I had a rheumy who wanted it to be inflammatory arthritis - absolutely no sign of any joint problems at all. Or psoriasis - that was one of his guesses. And 11 years on - still none. Nor any sign of the osteoarthritis that his colleague was so adamant I had 15 years ago ...

[Surami2020 in reply to PMRpro]

My GP had me do a full run of blood tests 2 weeks ago, I would say in preparation for this next step. I did mention I was concerned about my kidneys as during each pregnancy I had symptoms that eluded to kidney issues which may eventuate later in life but the rheumatologist said he had test results to say that kidney function was fine. My latest ultrasound on my kidneys was late last year.

He did look at my elbows for psoriasis but didn't ask if I had it. Because I do have some on my scalp which I only have trouble with when I use hairspray or the same brand of shampoo for too long.

I should be happy he didn't drop the dose of prednisolone! I am shall, we say a bit nervous about starting methotrexate as I have of issues with a couple of other drugs. I will give it a go and hope there are no side effects.

[Suffererc in reply to PMRpro]

So we are supposed to have tests before going on methotrexate . I was told (through my husband, who was talking to Rhuemie on Phone) she can look it up on the net. I haven't been prescribed it yet. He also said can she do her own blood test. Begin to wonder if they are real people .

[PMRpro Ambassador in reply to Suffererc]

MrsNails is the person to tell you the protocol but liver function must be checked before starting it and then (I think) weekly blood tests to start which spread to monthly over time.

[Surami2020 in reply to PMRpro]

I am to have a blood test at 3 weeks and email the rheumatologist for the results. Then another lot of blood tests 3 more weeks later and then see the rheumatologist again.

[CarolF1312]

I feel so sorry for you. It much be incredibly frustrating for PMR to be discounted, when you know there are many ladies on here that are under 60. Are you able to consider a private consultation with a different Rheumy ? That's the only way I managed to get a firm diagnosis during lockdown as GP was reluctant to confirm diagnosis and prescribe Pred in view of Covid. I have to say it was the most expensive telephone conversation Ive ever had but well worth £200 to get his diagnosis and recommendation to GP that I start 15mg Pred immediately. Good luck

[Surami2020 in reply to CarolF1312]

Hi Carol, thank you for your reply. I don't mind so much that PMR has been discounted. It is more that inflammatory arthritis covers a lot of conditions and I am really frustrated that he didn't name exactly what he thought what I may have. He obviously didn't have my previous test results in front of him. I only saw on the blood test request later that he was testing me for rheumatoid factor again.

Living rurally it is quite some distance to get to my next nearest rheumatologist and considering the one I saw is in Sydney and my next option is heading north; with the Queensland border closed I imagine that Rheumatologist will be from Brisbane and would be a telehealth consultation too.

I will be going back to my GP in a couple of weeks time and have a face to face consult. Hopefully he may be able to shed some light or give me a referral to someone else over here you can only see a rheumatologist by being referred by a doctor.

If I get no help there I will be going back to my original family doctor but he is going through the process of retiring and is on call at the local hospital so only available a couple days a week- the waiting list is a bit long which is why I changed doctors this early this year.

[Louisa1840 in reply to Surami2020]

Hello Surami,

I am in Oz too but down in Tasmania which is effectively living in a safe bubble atm! I do feel for you with this controversy of diagnosis. If it's any help I have had PMR for over three years and am currently on 6 and a half mgs of pred. some time ago the pred seemed to stop working and I saw a rheumy. He said I have PMR on top of inflammatory arthritis and prescribed me a slow release anti inflammatory for that (mobic or Meloxicam here in Oz). It helped a lot..

Just saying........

[PMR2011]

I was 51 when diagnosed so little faith in that Rheumie’s knowledge! You have only been diagnosed for 5 months or so I just can’t see they’ve given the Pred a chance to work considering you started at low dose end of the recommended and have tapered to below 10. From listening to folks on here Methotrexate is no picnic. Many GP’s manage PMR quite well on their own. Any chance of that?

[Surami2020 in reply to PMR2011]

15mg of pred worked amazingly with a 90% reduction of my symptoms just leaving between my shoulder blades aching. When I went down to 12.5mg the upper arm pain started back and at 10mg that pain was worse. I was hoping to go back up to 12.5mg and drop 1mg at a time to see if that helped. Rheumatologist was all about weight gain as I am over weight but I have not gained any weight and now that my osteoarthritis in my knee seems to have settled I am walking faster and have lost 2kgs in the last 4 weeks.

I am going to my GP next week to get more clarification. The bit of research I managed to do yesterday gives me little confidence with my new diagnosis. It seems to me that the rheumatologist has just ruled one thing out and put me on methotrexate so I am taking something that might work in all inflammatory conditions.

When I search inflammatory arthritis it comes up as a general heading for lots of condition's. I am going to request a copy of the report being sent to my GP and see if we can come up with a plan.

Methotrexate is going to be a problem with my work as a teacher's aide in the current spring and summer in Northern NSW. I get a tinge of sunburn walking between classrooms once summer is here and I imagine playground duty will probably not be a wise thing to do either.

[Amkoffee]

Your rheumatologist couldn't be more wrong. Time to look for another one. The steroids will cause the hot flashes.

[benhemp]

I read your symptoms with interest and wonder whether your rheumatologist is thinking you may have psoriatic arthritis (you mentioned he checked your elbows and that you have had a bit of psoriasis; psoriasis may be an indication of psoriatic arthritis). I have been diagnosed with both psoriatic arthritis (due to past history of sausage toes, slightly-pitted nails, and costo-chondritis) and PMR which responded initially to prednisone but came back during my wrongly-managed taper. Like you, I also experience random sweats (something no one has explained to me; I don't know whether that is from psoriatic arthritis, PMR, neither, or both).

After the prednisone ended and my pain/stiffness levels went way up, my rheumatologist wanted to put me on MTX but we have decided to redo the prednisone following what I've learned on this forum. That should start mid-November (I've been getting vaccinations - shingles and flu - out of the way while still not taking prednisone). I'm hoping that prednisone will be all I need; I am not keen on any more drugs than necessary!

Did you start MTX and is it helping? Any side effects?

[Surami2020 in reply to benhemp]

Hi Benhemp- I have no psoriasis on my elbows and the rheumatologist doesn't know about the little bit on my scalp so at the moment I think he is covering his bases. I have no other symptoms for psoriatic arthritis.

I have started MTX and having shocking nausea, vomiting and motion sickness. So far I have tried taking it at night, with food, increasing the folic acid and after having to take another Monday off work went to my GP who said to split the dose. So tomorrow I will know if this will work.

This is just to get me through to my next appointment with the rheumatologist in nearly 2 weeks time. The rheumy has said I can go on to injections or change DMARDS as there is plenty to choose from.

I hope your new prednisone journey goes well. This forum is amazing with lots of information and empowerment.

[PMRpro Ambassador in reply to Surami2020]

Having a history of psoriasis isn't required - the arthritis part can appear before the skin part.

"The rheumy has said I can go on to injections or change DMARDS as there is plenty to choose from."

For psoriatric arthritis or PMR?

[Surami2020 in reply to PMRpro]

For his diagnosis of inflammatory arthritis.

[PMRpro Ambassador in reply to Surami2020]

OK

[benhemp]

Very sorry to hear of your negative reactions to the MTX. I hope you can soon find treatment that works well for you, and be feeling better!

[Richnroo]

I too was initially thought to have PMR and I was just shy of age 50. This was in May. My symptoms sounded very similar to yours. I did respond to prednisone but 40 mg still wasn’t enough to control symptoms. I saw a board certified rheumatologist whom I have complete faith in. He did not tell me it was NOT PMR, in fact he sent me for MRI to rule out extra cranial GCA. But he did say he thought it was an inflammatory arthritis. And that regardless, treatment for all inflammatory arthritis is basically the same, and depends on the actual patient. I guffawed at that and thought “ but it’s not affecting my joints”. Well turns out I have the lightest psoriasis on my scalp , Which I always thought was my shampoo or some other thing. Scalp psoriasis is the most common area for people that have psoriatic arthritis to have their psoriasis. Long story short, I’m on methotrexate , but can only tolerate 10mg. I’m still on 30 mg pred and will start a biologic soon. Diagnosis: psoriatic arthritis. I’ve come to realize that I had been so consumed with all the PMR like symptoms, I had discounted other things that I had been experiencing well before the severe pain and stiffness. I credit my rheumatologist with seeing past what I was telling him ( I was telling him it was PMR) and digging deeper. He’s the one with the knowledge. It was hard for me to let go and have faith in him but I did. And by golly, I think the man knows what he’s talking about. Just a different perspective. I know we are not all the same and you may very well have PMR. But just consider.... your doctor could be right.

[Surami2020 in reply to Richnroo]

I responded really well to 15mg of prednisolone with a 90% reduction in my symptoms but when I got to 8mg my symptoms escalated.

I would have more confidence in my rheumatologist if I had a face to face consult. Hopefully this will happen at my appointment as our restrictions have been reduced. I am also hoping he can narrow down his diagnosis or at least tell me a couple he might think it is as I find it disconcerting having such a wide range of diseases under that heading of inflammatory arthritis..

I am glad you have a definitive diagnosis and your rheumatologist found the critical differences from PMR and was interested in your past health. My rheumatologist was only interested i n prediagnosed conditions and allergies and the symptoms from when they had escalated to rendering me barely able to function.

[Richnroo in reply to Surami2020]

Ah didn’t realize it wasn’t a face to face. Also I must have thought your prednisone dose was higher. Totally agree with you about there being so many diseases under the inflammatory arthritis header. And yes- I too had the symptom escalation to the point of rendering me being unable to function too, and that’s where I had focused all my attention. But he went further and ran so many tests. Also he never discredited my theory about it being PMR, even agreed it very well could be, despite me being “ too young” ( which he said is not true) . This is One of the reasons I feel confident in his diagnosis. I hope you get resolution for your situation. No matter the diagnosis, the suffering is great and the patient symptoms must be controlled. Good luck!

[Surami2020 in reply to Richnroo]

I have had over a year of doing blood tests which have included RF, every mosquito borne disease in Australia, several cancers and the usual autoimmune markers for lupus etc. I have had an MRI on my knee for osteoarthritis which is what triggered the avalanche of blood tests and showed inflammation in the bone. Thanks for your good wishes.

[PMRpro Ambassador in reply to Surami2020]

"I responded really well to 15mg of prednisolone with a 90% reduction in my symptoms but when I got to 8mg my symptoms escalated."

Which is very typical of PMR - you aren't reducing straight off and relentlessly to zero pred and 8mg is a common dose to get stuck at in the first couple of years. That sort of response is rarely found in patients who have an inflammatory arthritis with a polymyalgic onset. The problem arises when the rheumatologist thinks that PMR is cured which a short course of pred or that it is in remission in a year. It isn't ...

But "showed inflammation in the bone" - PMR doesn't involve bones.

[Richnroo]

Can’t say I disagree! Either Enbrel or Humira, whichever my insurance approves.

[Richnroo]

And I think that’s key. Finding what works for you. All I know is I was on 40 mg pred with no end in sight if something wasn’t done. I can tell the methotrexate is helping because I can tolerate 30 mg which I couldn’t before. But it’s not going to be enough. Hence the biologic. Trial and error of course. But in the beginning I was dead set against it being anything other than PMR. I’ve come to realize there’s so much more to it, for me anyway. So I’m team whatever works. Who knows. My story may change. But for now it’s where I’m at. Glad the actemra is working for you!

[benhemp]

I appreciate your thoughts! Thanks for sharing them, and I will keep them in mind as my treatment unfolds.