Can an ultrasound scan confirm to my rheumatologist that I no longer have PMR

[JEMOK]

I saw rheumatologist in September & after an ultrasound scan he said I no longer have PMR. I was on 6.5mg & was told to reduce by .5mg every 2 weeks & not to increase dose even if in pain until I reach 3 mg & then have a blood test. I am now on 4.5mg & have pains in my upper arms & shoulders & buttocks & am feeling really unwell. I am unable to shower or dry my own hair. My next appt is in April 25 & I don’t know if I can continue in so much pain. I would appreciate any advice you can give me.

[NewPMR]

I’m sure one of the pro advisors will be replying shortly. I’m new to this but from what I have gathered from this forum, what you have been told is utterly ridiculous! You need medical advice from your doctor straight away, in the hope that someone at your surgery actually knows what they are talking about. You have classic PMR symptoms and do not need to suffer like this, shocking

[PMRpro Ambassador]

I would say that ultrasound can diagnose PMR when shoulders are involved - is that what he was looking at? But I am far from convinced that it can say that PMR is in remission while you are on enough pred and have no symptoms. Being on 6.5mg pred is absolutely LOADS to keep PMR inflammation under control.

My advice would be to discuss this with your GP. If they won't take a decision themselves, I would demand a second opinion though how long that would take I have no idea. Then you only option would be a good PMR rheumy privately.

[Jbobby in reply to PMRpro]

Interesting what you say about 6.5mg Pres being loads to keep PMR inflammation under control. Is that also true for GCA? I’m currently on 7mg - roughly speaking . Slowly reducing to it with 7.5mg thrown in every few days as I’m on gastro resistant so impossible to split pills…. So I stretch the gaps between 7.5 and 7 gradually if you see what I mean. Occasional aches and pain when I’m tired but really nothing to complain about.

[PMRpro Ambassador in reply to Jbobby]

Well it is if the underlying disease activity is less than that! What I really meant was that when a patient is at 6,5mg and no symptoms - no-one can tell if the underlying cause of the PMR or GCA is still there or not whatever they may claim. Not until you get to zero pred for a good 6 months can you say that with any degree of confidence and even then, very low disease activity can hide for months. Even 1mg can be enough but then a few months after trying zero pred the dripping tap of unmanaged inflammation fills the bucket, it overflows and symptoms are there again.

1mg EC may be available - it disappears and comes back every so often and it seems to need a determined pharmacist to find it. However, you are doing what the DSNS taper does and it was partly developed years ago for people who were on EC in the days before 1mg tabs were made because, as you so rightly say, it is a pain to drop 2.5mg at a time of you can't use plain pred to make up the dose.

[Jbobby in reply to PMRpro]

Thanks so much PMRpro. V interesting and helpful as always.

[Bridge31]

if you have enough Pred stock at home I would go back to 6.5 ( where presumably day to day living was manageable ) until you can get an appointment with your GP. There should be no need for you to be in so much pain. However if you are having a serious flare ( it sounds like it ) then 6.5 may not be enough to knock it on the head. Fingers crossed for you that there is a GP in your surgery that understands PMR.

🌸🌸🦋🦋

[123-go]

Jemok, as has been said you have classic PMR symptoms and you need to be seen as soon as possible by a competent rheumatologist. You could complain to your rheumatology clinic that your condition is worsening and you have no confidence in your rheumy but that may take time. Please contact your GP surgery this morning and explain that you are in severe pain that prevents you from performing the most basic hygiene-related tasks. Say that your pain has increased massively since the rheumatologist advised you to reduce your medication and STRESS that you can’t go on like this. Don’t hold back tears. If the GP can’t/won’t help and you have someone who will drive you I would go to A and E where you will be given a correct diagnosis and plan of action. The other option suggested by PMRpro to seek out a rheumatologist for an urgent private appointment will be money well spent if you can manage it.

I am not trying to over-dramatise your situation. I was in a very similar excruciatingly painful situation pre-diagnosis and fully understand that feeling of desperation in not being listened to. Please let us know of future developments.

[DorsetLady PMRGCAuk volunteer]

As others have said you really do need to discuss with your own GP..

Not only does it sound as if your PMR is alive and kicking… your comment ‘am feeling really unwell.‘ could indicate you adrenals are struggling as well. Which as well as being very unpleasant could also lead to an adrenal crisis.

[MiniSpec]

Last year I saw a rheumatologist for the first time in 13 years. As I walked in to her office the very first thing she said to me, before even saying hello, was, "You don't have PMR any more!" I was somewhat taken aback by her confident assertion, but instantly replied, "Have you told my PMR that?"

It was her turn to be nonplussed, and it was quite obvious from her frown that she didn't appreciate being talked back to. However, I'm in my 70's, she's in her 50's, so I have 20 odd years seniority on her, and I'm not going to be spoken to by young whippersnappers like her in such a dismissive fashion.

Having established that I wasn't going to be one of the normal sheep who walk through the door, she then calmed down a bit, and we had a reasonable converstion, but I remained very wary of her, and when she proposed trying anything else, (Methotrexate), I countered with an equally valid argument,i.e. what's the point of adding extra drugs with their possible side-effects to the cocktail I'm already taking?

Anyway, the eventual outcome was that she wrote a very nice letter to my GP's surgery explaining that I'll probably be on Prednisolone for life (which doesn't bother me at all!). So she didn't get her way and bully me into some kind of painful purgatory for the rest of my life, and as such when I had a GP review of my medications last Monday, the nurse practitioner even upped my Prednisolone prescription because I explained to her that I've had to up my daily dose from 3mg to 4mg due to increasing pain and stiffness.

So don't just accept what these people say, answer back if you think they're wrong. They aren't God, and sometimes need to be reminded of that fact. After all, they are there to provide you with a service, for which the government pays them hansomely, and if they fail you that's THEIR fault, not yours.

[Longtimer in reply to MiniSpec]

Couldn’t agree more!

[Jbobby in reply to MiniSpec]

👏🏼 Thank you… I’m with you!

[sidra1968 in reply to MiniSpec]

well stated, could have written it myself. Kudos!

[Ginntonic in reply to MiniSpec]

You were right to keep away from methotrexate. I was offered it about 7 years ago for psoriatic arthritis but apparently it knocks out you immune system (!) so you must take great care and you require a blood test every fortnight. I politely declined.

[Longtimer]

About 18 months ago (I think) I had a PET Scan which showed no inflammation, so Rheumie said it must now be Fibromyalgia. I am still in pain have stiffness, and heavy fatigue, dizziness and balance issues. He told my GP I would more than likely be on 5 mg for life, I have to up the dose quite often. Such a battle, not convinced PMR has gone.

[PMRnewbie2017]

Perhaps you could also ask for an ESR/CRP blood test. If you have typical PMR this is fairly reliable in confirming you are flaring ie your dose of Pred is not sufficient to counterbalance the amount of IL-6 you are producing every day. It's the IL-6 which is converted to CRP by the liver and can be measured. Your GP should be happy to do this. I would also say that if you are feeling unwell this also points to too much inflammation in your system as well as possible lack of cortisol. The problem with trying to cope with uncontrolled inflammation is that it does cause tissue damage and as we know PMR can morph into GCA. Armed with all the information here, I would definitely push for a blood test followed by a GP appointment. For what it's worth, I have been known to "tell fibs!" in this situation by saying that the Rheumy told me to get a blood test before continuing to reduce if I had symptoms. If you look at the copy of the letter which your Rheumy sent to your GP you will probably find that there's very little information in it to go against my suggestion and there are few GP's who will go against a Consultant! The other thing you could try is to contact the Rheumatology department and tell them how Really Bad You Are. It's hard when you feel ill but sadly you have to be your own advocate these days and those that shout loudest do get listened to..........unfortunately. Good Luck x

[Sillydogsmum in reply to PMRnewbie2017]

Sorry PMRNewbie but I dont agree that CRP/ESR are reliable to confirm a flare. If this was the case this forum would be largely redundant; ourselves and our physicians much happier bunnies! Once one is on Pred these two tests, already with low specificity and sensitivity to establish a diagnosis, often lag behind the symptoms of a flare and often dont budge much at all. My CRP went up to a princely 9 when had an awful flare due to Covid and a spectacular 2 when I flared after the vax. As to IL6 being converted to CRP, where did you see that written.......... ?

[PMRnewbie2017 in reply to Sillydogsmum]

There are several sources. I have pasted some examples, abridged for ease of reading, rather than references only. I agree that by trying to simplify a complex metabolic process I have actually been inaccurate in my statement that it is the IL6 that becomes CRP. Apologies. However for those patients, including myself who have what my Rheumy has described as "typical PMR", A CRP result provides us with a really useful indicator of whether the symptoms are PMR related rather than Fibro, DOMS or secondary AI.

C reactive protein A common test for inflammation and infection

BMJ 2010; 341 doi: doi.org/10.1136/sbmj.c5164 (Published 23 September 2010)

Cite this as: BMJ 2010;341:c5164

Omer Farhan-Alanie, final year medical student,Veer Shah, final year medical student,Naveed Sattar, professor of metabolic medicine

C reactive protein (CRP) was discovered in 1930 in the serum of patients with acute inflammation. Nowadays, the CRP test is a routine blood test done to measure general levels of inflammation and infection in the body, determine their severity, and monitor response to treatment.

Production and function

CRP is one of many plasma proteins that comprise the “acute phase proteins” and is a sensitive systemic marker of inflammation. It is synthesised by the liver in response to microbial infection, tissue injury, and autoimmune disorders in the acute phase of the response. This phase of the response comprises non-specific physiological and biochemical reactions to most forms of tissue damage, infection, inflammation, and malignant neoplasia. The synthesis of proteins is rapidly upregulated, principally in hepatocytes, under the direct control of cytokines that originate at the site of pathology.

Also:

PubMed

C Reactive Protein

Sara M. Nehring; Amandeep Goyal; Bhupendra C. Patel.

Author Information and Affiliations

Last Update: July 10, 2023.

CRP is a pentameric protein synthesized by the liver, whose level rises in response to inflammation. CRP is an acute-phase reactant protein that is primarily induced by the IL-6 action on the gene responsible for the transcription of CRP during the acute phase of an inflammatory/infectious process.

As compared to the erythrocyte sedimentation rate, which is an indirect test for inflammation, the levels of CRP rise and fall rapidly with the onset and removal of the inflammatory stimulus, respectively. Persistently elevated CRP levels can be seen in chronic inflammatory conditions such as chronic infections or inflammatory arthritides such as rheumatoid arthritis.

[Sillydogsmum in reply to PMRnewbie2017]

If you take a look at all the quality studies and review articles on PMR and GCA , they are awash with references to the dilemmas of CRP and ESR interpretation both on diagnosis and follow up. Google search on ' interpretation of CRP and ESR in PMR'; ignore diddy little studies in obscure journals. My soon to be Rheumato , in assoc with a big French group, have been trying to develop an evaluation system that combines esr and crp and incorporates a patient reported activity score. rmdopen.bmj.com/content/10/...

Apologies, a very cold towel needs to be wrapped round head to prevent brain exploding when reading this..........

[Pixix]

My consultant was the same…think he gave me 8 weeks to get off it…he wanted six weeks, I protested. He told me if I got sick again I had to tough it out. He told me that under no circumstances was I to increase my pred again. He gave me a form for a blood test as soon as I had stopped taking it. I wasn’t referred to him for PMR, it wasfor inflammatory arthritis & possible Ehlers Danlos, instead he rediagnosed fibromyalgia, diagnosed hypermobility, gave me two brochures & sent me away. I have always been under my GP for PMR & so it continues. I don’t need a consultant for PMR, I am tapering slowly. I understand I may be on a low dose for life,my GPhas discussed it with me. Personally, I don’t find the need to see a rheumy to help me taper!! Good luck, S x

[Holidaytime89]

just wanted to say that I had an ultrasound on my knee before my PMR was diagnosed- and was told - don’t worry there is nothing wrong with you knee- it’s just osteo arthritis and you’ve been kneeling too much (I’m a gardener)

It wasn’t just my knee of course but that was the most painful joint at that time.

I cried all the way home. I was in so much pain that I also could hardly walk up the stairs, couldn’t work or get dressed etc. As a result of this it took me a further 2 months to get my GP to reconsider my symptoms.

So in my case ultrasound definitely didn’t confirm PMR!