Misdiagnosed

[MarilynRose]

Hi everyone went to see my rheumatologist yesterday and I have been told I have not gotPMR or GCA now instead I have fibromyalgia so very confused and now got to drop prednisolne down and come of them within next 8 weeks anyone else been mis diagnosed!!

[DorsetLady PMRGCAuk volunteer]

Not me, but sometimes it is difficult, the symptoms of PMR and fibromyalgia can be similar…….it’s one of the reasons you do need to see a Rheumy, if only once. Can recall Prof Dasgupta making that point in one of his videos.

Is Rheumy suggesting you come off all meds before doing more tests, thought he might have introduced other meds whilst weaning off Pred.

Sorry don’t know a lot about Fibro, but there are plenty who do and will be along shortly.

[MarilynRose in reply to DorsetLady]

Yes got to come of meds in 8 weeks dropped today by 10 mg so on 20 mgr now slow process.

[DorsetLady PMRGCAuk volunteer in reply to MarilynRose]

Good luck with that….please ask if you find it difficult…..

[Flipper12345yellow in reply to MarilynRose]

On the bright side, to cheer you up. Fibromyalgia although a horrid illness does not damage joints, organs, eyes etc so your diagnosis is a better one. I have struggled for years with debilitating fibro but wanted you to have something positive to think about❤️

[Tony558 in reply to DorsetLady]

My appointment to see a rheumatologist was booked for July but now has been put back to September.My doctor wasn't happy with this but with the massive NHS waiting list i can understand why.

[DorsetLady PMRGCAuk volunteer in reply to Tony558]

Yes, and I'm sure it's frustrating for everyone...but unfortunately one of those things.

[Seacat30]

What reasons were given for the changed diagnosis?

[123-go]

This must be very frustrating and concerning for you.I would also like to know what led your rheumatologist to diagnose fibromyalgia: she should have explained her reasoning. What are her recommendations for your on-going care?

[MarilynRose]

Very frustrating I have to come of steroids first before what he is going to do next ,so going to be a bit rough for 8 weeks,I think he said the biopsy did not show anything and I am still getting headaches and where he pressed pressure points very painful and my legs and back no better.so at minute no on going care!!

[SnazzyD]

As Seacat30 asks, what is the reason for the change of diagnosis? Why 8 weeks? Depending on the dose you’re on, you’re going to get withdrawal to a greater or lesser extent. To get no withdrawal I suspect the period would be unacceptably long for those who want you off. So it could be a rough ride whatever you do. Divide the current dose by 8 weeks? One thing to consider though is the often forgotten matter of adrenal function because you have been on Pred for long enough for your adrenal glands to have gone to sleep. Commonly from 7mg down, it can hit and many have to drop by 0.5mg a month or more to avoid crippling fatigue. Be very aware of the signs of adrenal dysfunction by looking in the FAQ’s. Doctors sometimes forget this bit or believe the adrenal glands will get start working fine. They may do, but you must be on the altert for not coping.

[PMRpro Ambassador]

You can reduce to 10mg very quickly - it will probably be uncomfortable with steroid withdrawal but not risky after only 3 months. In fact, down to 5mg can go quickly. That last bit will need to be a bit slower but at only 3 or 4 months it shouldn't be too bad.

I take it the rheumy is basing their opinion on the fact 30mg wasn't effective? It is certainly a good enough reason (I think) that the 15mg starting dose should be ditched - 20 or 25mg from the start and if there is no good response quickly, just stop until a rheumy can be seen to make the diagnosis. A lot of mistakes are made by GPs that can interfere with later management.

There really needs to be some backing for an immediate fast track referral to a clinic where they can do the requisite examinations and testing BEFORE starting pred, Once a GP has started a highish dose of pred over a couple of months, that patient is probably not eligible for any research study and it makes recruitment hard when a study IS ongoing. And we NEED studies.

[jinasc]

Can I ask you t o go backwards to when you were first diagnosed last November . I noticed you joined the site in January.

What were your symptoms then (all of them please) when you first contacted you medics, because I noticed that GCA had been ruled out because the biopsy was negative.

Have I read this correctly?

You said you were started on 40mg of pred then reduced to 30 ........was this before or after the biopsy or am I reading everything in your profile incorrectly. .

[MarilynRose in reply to jinasc]

Gp thought I had GCA so she put me on a high dose then another Gp rushed me through to see a specialist asap that’s when rheumatologist wanted a biopsy ,muscle pain in ankles chest pain and headaches very tired,reduced to 30mg after biopsy.I hope that answers your questions.

[DorsetLady PMRGCAuk volunteer in reply to MarilynRose]

As we know, negative doesn't always mean you don't have GCA, can be the specimen of artery they examined wasn't affected, doesn't prove other arteries aren't, or even temporal artery is affected in another spot. So symptoms have to taken into account as well.

The ankle and chest pain may have thrown a spanner in the works, so please monitor your symptoms as you reduce, and obviously if headaches increase or you get any sight disturbances please seek medical attention asap. Fatigue can be caused by a number of illnesses.

[Bcol]

Hi Marilyn Rose there is a fibro section on HH, I'm on it purely because my OH has Fibro and it gives me an insight into how others cope etc. Nothing like as busy as here though.

[MarilynRose in reply to Bcol]

Thank you.

[SheffieldJane]

From what you have learned on here MarilynRose, do you feel happy about the accuracy of this change of diagnosis?I ask because my first Rheumatologist thought that I had Fibromyalgia. I requested that my GP refer me to a Rheumatologist recommended on this site as an expert in PMR and GCA. She is excellent. I got PMR and GCA in the end and was glad to be in competent hands. Sometimes Fibromyalgia can be treated as a dismissive diagnosis that doesn’t require much input from doctors - not always - but it happens.

[MarilynRose in reply to SheffieldJane]

I think so lots of things add up the pain not going away on steroids.

[SheffieldJane in reply to MarilynRose]

Then it is operation “ get off steroids” obviously as comfortably and safely as possible according to the advice.

[Ansteynomad]

I was misdiagnosed with GCA in December 2019, told about it in February 2020 and stuck on prednisone with no support until March 2021. It has taken over a year to get my hospital notes ,but I can now see that they missed a number of chances to tell me and to get me off the steroids sooner.

As a direct result of the steroids, I had awful psychological side effects, a broken bone and two emergency surgeries, as well as losing my job, so I am now looking into suing the hospital.

I still don't know what I do have. It is a complete mess.

[Nextoneplease in reply to Ansteynomad]

This sounds awful Ansteynomad 😳

Have I understood correctly that you were on steroids for over a year, and then told you didn’t have GCA? If so, I’m very sorry to hear it x

PS Sorry, just read your profile, thank you

[Avadip12]

I feel that your GP acted in a responsible manor. If you had strong symptoms of GCA quick action with high dose steroids prevents blindness. I have a friend who is totally blind due to slow diagnosis . I feel it’s a catch 22 . I am delighted you don’t have it , it’s a very debilitating illness. As fibromyalgia can be. I have now been diagnosed with fibromyalgia, after 15 yrs of PMR , but I have had no positive blood test results for 8 yrs ,but the rheumatologist is not sure when this transition happened. I am now having great difficulty getting off the steroids as I have become dependent. There is still a grey area in diagnosis with connective tissue illness. Good luck.

[AshPen9]

I was also misdiagnosed MarilynRose. Originally PMR, diagnosis changed to Spondyloarthropathy after 6 weeks because of high IGAs in blood, whereas PMR causes high IGGs. Also, some of my pain wasn't bilateral. In respect view of coming off pred though I was better off than you. By the time the diagnosis changed I was on 12.5mg, and I dropped 2.5mg every week to zero with no problems. The problems started two weeks after that. I had been told that the short course of steroids would be enough to reset my immune system, but it wasn't, so am currently trying hydroxychloroquine. Trouble is it takes 2 to 3 months to work, if it's going to work. After two months so far no improvement, feeling really rubbish with fatigue and constant headaches. Not confident in the current diagnosis but don't know much about Spondyloarthropathy. I hope that your journey downwards to zero goes smoothly. The great advice always available on this forum will help you. Also here's hoping that your fibromyalgia journey is as short as it can be. Good luck.

[PMRpro Ambassador in reply to AshPen9]

Have I said this to you before? Can't remember! But it MAY be you have to "fail" a DMARD for a spondyloarthropathy before you can be switched to a biologic, Nowadays they often use anti-TNF biologics such as Humira which are very effective. I have a friend who was diagnosed with PMR - even later with GCA (by Prof Dasgupta) but in fact the symptoms were all caused by ankylosing spondylitis, a spondyloarthropathy. She was immediately allocated to one of the anti-TNF drugs. It is one of the things that can be suspected if the patient finds an NSAID affords them good relief.

[AshPen9 in reply to PMRpro]

Thanks very much PMRPro, you did mention anti TNFs to me before, after which I asked the rheumy, who said that you need to have two DMARD fails. I haven't tried NSAIDs at all, I'm always told to avoid them due to stomach issues. To be honest my original aches and pains are now fairly few and bearable, they mostly cleared up on their own. However the fatigue and headache are constant and getting worse. Hoping that the Hydroxychloroquine suddenly starts to work, he has said if nothing by 12 weeks we will try MTX, Sulfasalazine or steroids. I feel very tempted to ask for steroids because I felt fine whilst taking them, but he's not keen, says that he doesn't want me to have more than 5 mg for long due to already having osteopenia and high BP. He says that whilst he thinks 5 mg may work for me initially, as time goes on my body may get used to it. I'm that weary I might ask for some steroids at least short term just for a bit of relief, because I understand that the other options both take a while before they start to work. Thanks very much indeed for your time and your advice and support.

[HeronNS in reply to AshPen9]

If you're concerned about your bone health there are some things you can do to mitigate steroid effects, just as we can avoid or lessen tendencies towards weight gain or diabetes. I was actually able to increase my bone density in a year even while my pred dose was over 5 mg for most of that year. My story for some ideas which may help you:

healthunlocked.com/pmrgcauk...

[AshPen9 in reply to HeronNS]

Thanks very much indeed for that HeronNS. I was diagnosed years ago with osteoporosis but that changed to osteopenia. After taking Risedronate for several years I was told to have a holiday from it. That was a few years ago, and DEXA scans since have shown that the scores have only worsened slightly. I was prescribed AA last September due to the pred, but only took it for a few weeks because I then stopped taking pred due to the misdiagnosis. I didn't really want to take the AA at all, but at the time didn't feel well-informed enough to argue. If I end up taking pred again I will definitely look at your suggestions rather than take AA. I'm due a DEXA fairly soon, so that will be a good base to start from. You're really kind to take the time to reply, everyone on this forum is so helpful, and even though I now know that I don't have PMR, there are enough similarities in symptoms, treatments and general issues for me to still see it as a good source of moral and practical support.

[2013mayo]

Wow, poor you, It’s seems that making a diagnosis for any of these conditions is quite difficult, they seem to like putting everyone on pred, (high dose), in my opinion far too much of pred is prescribed for any condition these days, problem is once you are on a high dose it’s then difficult to make a correct diagnosis.

I can’t help you regarding fibromyalgia, but I hope they now treat you with correct medication.

I’m having a battle with rheumatologist dept at the moment, I’m in terrible pain with arms neck and shoulders, I’ve been told I’ve got PMR for the last 2-3 years, now when I phone re the pain was told it’s osteoarthritis, absolute rubbish, I’m absolutely furious with them, I’m sorting myself out with the help of this site.

Hope you get sorted soon.

[Doraflora]

Good luck with all this, MarilynRose. I can’t offer anything here, but after my diagnosis (over the phone!) two years ago, I’ve never been referred to a specialist for my PMR and in fact all my consultations with the doctor ever since have always been on the phone.

[Pixix]

No, I wasn’t mis diagnosed, but I’ve had fibromyalgia for 15 years & PMR for 2. When I saw the rheumy last February, she went through a very thorough check to see if I have both diseases! If your rheumy ‘prodded’ you in multiple places during your appointment, that’s how they test for fibromyalgia! Tbh, all is not lost…I’d much rather have fibromyalgia than polymyalgia, if given a choice! The steroids do not help any of my fibromyalgia pain, & I can distinguish the two diseases. I had a lot of new pain & pain in different places when I got pmr..to start with I just thought it was fibro, but different symptoms emerged! Um…they do share the fatigue element, though, & pain is involved in both, so I can see how misdiagnosis is possible. When you are off the steroids it will be clearer, I think, good luck, hope this helps a little!

[winebag]

Yes, I was treated for both PMR and GCA, 4 doctors in Illinois treated me for this for 5 years. I had permenent retna damage. I went To Mao clinic last summer. They said I never had GCA or PMR. Because I would have optical nerve damage if I did. They didn't know What caused my eye damage. They thought I had a spinal Fluid leak but could not find it. They took me off all my meds.

[PMRpro Ambassador in reply to winebag]

While I hate to disagree with the Mayo, you wouldn't have to have optic nerve damage if you had had PMR and in fact, even with GCA it need not affect the optic nerve. It all depends which arteries are affected and GCA can manifest both as intra and extracranial forms.

[HeronNS in reply to winebag]

How did that go, and how are you feeling now?

[winebag in reply to HeronNS]

My carotids hurts, temples hurts, jaws hurt. In flamatory markers just a tiny bit elevated. Muscles and joints hurt.

[DorsetLady PMRGCAuk volunteer in reply to winebag]

Then you need a second opinion - and soon -inflammation markers are not the be all and and all.

Your symptoms sound very GCA like to me, and if that’s the case, then you need to be on meds.

[PMRpro Ambassador in reply to winebag]

Absolutely agree with DorsetLady - signs and symptoms like that can't be ignored.

[Josephinem]

Hiya, I was diagnosed with PMR in 2008 and in 2012, I was told I had fibromyalgia. The only medication that helps my pain is prednisolone.

[Predderman2020]

Dear MarilynRose, sorry if this is repetition on your part, but did Pred alleviate your Fibro, if that is what it turns out to be? Good luck. T

[Hobbler2021]

I was told 18 months ago that I had PMR. I very been going for my Blood Test to check my inflamation level. Last 4 wk ago I had my last Bloods done, I was taking 5mg of prednisone, my leg were very uncomfortable and heavy.My Blood came back saying all were good 🤔.

Well I decided to borrow my Dads Circulation Board and my legs felt Better straight away, that I manage and little walk/ Jog.

I tapered down to 1mg of Prednisolone and have not had any in the last 2 days. So I would say I have poor circulation, cause this board is working wonders for my legs, it feel like a new pair.

So 🤞 it will stay like this till my next appointment with my GP.