Am I sick or is it in My head?: Good morning... - PMRGCAuk

PMRGCAuk

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Am I sick or is it in My head?

beringer profile image

Good morning everyone. Hope You’re having a beautiful day…. My question is a hard one… My CRP result was 0.47. With normal range at 0.00- 0.50, and I feel as tho I have full blown G C A & P M R. My scalp feels like it’s on fire , jaw pain , neck, Hips back & hands. Also feel so bad all over , even brain fog. Dr says can’t be, because lab work shows normal. I put Myself on 30 mg prednisone, hopefully that will help… Anyone ever experienced this or am I nutty? Please help Me out here…

53 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Afraid Dr is wrong, as we all know blood markers can lag behind symptoms…plus between 7-20% of patients do not have raised markers.

You know your illness better than your doctor does, and no, you are not nutty.

Hopefully the 30mg will help, but if it doesn’t then please seek a second opinion.

beringer profile image
beringer in reply to DorsetLady

Thank You so much, I’ve been so worried & scared. I depend on You folks over there so much, I’ve not found a forum this informative here in USA.. Again thanks sweet Lady…

Grammy80 profile image
Grammy80 in reply to beringer

I'm in the states, with GCA, and you are so right....this site has been a life-saver. Are you close enough to a city with a good teaching medical school? It was finally a vascular surgeon while I was at the ER that started Pred IV before the temporal biopsy.

I know how frustrated you must be. I hope you go to the ER as your son suggested 💖

PMRpro profile image
PMRproAmbassador in reply to beringer

There was an attempt to get a US/Canada forum going but any forum needs a critical mass of members to succeed but, above all, a small but committed group of members who stick around whatever - including recovering and not needing it any more for themselves. The platform is important too - and the choice there wasn't ideal.

kmeikle1 profile image
kmeikle1 in reply to PMRpro

I appreciate each and every one of you...especially those who no longer have PMR/GCA but stay around to help the rest of us. I have a good Rheumy in the USA, but I'd be mostly in the dark without this forum. Thank you!

Bodmor profile image
Bodmor in reply to beringer

I hve heard the same about blood markers. Also mine were only slightly off and I had very bad PMR which responded to prednisone. Good luck and don't be afraid. You can trust yourself. Jane

Microbe1943 profile image
Microbe1943 in reply to Bodmor

Newly diagnosed PMR. 1 month. CTO 4.7/5. SED RATE 48. Rheumatologist says ONR despite ok CRP with SED rate up modestly. 10 mg prednisone to start Bec of diabetes. Your scalp and headache warrants higher dose. Is ur helping. Mine IS. nit perfect. I may need a bit more but I have diaetes also on lots of insulin so have to deal that too. I’m 80% better first day! Good luck. Sharon

kmeikle1 profile image
kmeikle1 in reply to Microbe1943

So glad to see you found this forum. It's where I've learned most of what I know about our condition.

Kymandbob profile image
Kymandbob in reply to Bodmor

My markers were at least 2 weeks behind...First critical blood test markers...ESR and CRP within normal range. I was told to go and buy decent walking boots as walking in poor footwear had strained my thigh muscles..🙈 Symptoms got worse, saw another GP who redid blood tests. This time huge rise in markers confirming the likelihood of PMR. Was put on 15mg prednisolone and felt like a new person within 48hrs.

Still have PMR but am again reducing the steroids using the DSNS approach of 0.5mg per month.

Now at 8mg..🤞🤞

Hope you get to feel better soon.

Peptink profile image
Peptink in reply to Kymandbob

It was probably the new boots that really helped! 😂 Just kidding. I’m glad you’re feeling better everyday. It’s been a long journey for so many of us. This forum is priceless!

Bodmor profile image
Bodmor in reply to Kymandbob

What is the DSNS approach? I was reduced 5 mg a week and it was awful. The initial pred dose within hours turned off symptoms, but I was a mess with the reduction, so my GP said pred doesn't suit me and took me right off. I pleaded for 1 mg as I noticed that when I finally came off, it was a few days till the PMR came back full tilt, so the pred was doing something. Bless you, Jane

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Bodmor

See attached for all tapering plans, DSNS included - healthunlocked.com/pmrgcauk...

Kymandbob profile image
Kymandbob in reply to Bodmor

Dead slow nearly stop!! Reducing by no more than 0.5mg per month once you have reached the 10mg dose of your steroid. From experience, to do it any faster creates the real risk of a flare, which can put you back to square one again....

aladymo profile image
aladymo in reply to Kymandbob

DSNS not have to be once you reach the 10 mg dose can be any dose if you’re having trouble tapering. ( Dorset lady told me when I asked)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to aladymo

Yes it can be used at any dose, but most people find lower doses (e.g. single figures) more troublesome - less “spare” Pred in the body.

gca5 profile image
gca5 in reply to DorsetLady

Less spare pred plus the adrenals are "waking"?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to gca5

Yes

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Kymandbob

DSNS is not specifically below 10mg nor 0.5mg - it’s a slower taper that can be used as and when required. I believe it was initially partially designed to alleviate the steroid withdrawal effect - but has been adapted to use as needed.

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

And to allow tapering 2.5mg at a time for people on enteric coated pred which in those days only came as 5mg and 2,5mg

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Thanks, something like that was in back of mind, but wasn’t sure, so didn't add.

kiwijenn profile image
kiwijenn in reply to beringer

There are a couple of excellent FB support groups, primarily US but from all over the globe as well. I find there is never too many resources or support in living w a condition like we all have.

PMRpro profile image
PMRproAmbassador in reply to kiwijenn

There are also a few very strange FB PMRGCA groups ...

kiwijenn profile image
kiwijenn in reply to PMRpro

How do you define strange? I have found the one I am on has some amazing “alternative “ ideas that help support the journey.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to kiwijenn

What alternative ideas in particular ?

kiwijenn profile image
kiwijenn in reply to DorsetLady

Alternative therapies like Japanese and Chinese acupuncture, nutrition support that is supported by literature, and many others.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to kiwijenn

Okay, just so long as people realise they should be used alongside steroids, not in place of them.

How successful are they?

PMRpro profile image
PMRproAmbassador in reply to kiwijenn

Some have been seen to propagate some downright dangerous ideas.

kiwijenn profile image
kiwijenn in reply to PMRpro

I personally am seeing an internal medicine MD who is also functional medicine trained w a wife who is nutritious. They are specialists in autoimmune disorders and highly recommended. I had a long wait to c them. I would call them dangerous in the least.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to kiwijenn

You may well trust them , but please be aware that PMR not properly controlled can and does develop into GCA - which is a much more serious condition- as many on here including myself can testify.

kiwijenn profile image
kiwijenn in reply to DorsetLady

Totally aware of this and so is my Dr. I am a medial professional myself and am able to understand research and know how the body works as well. It’s been an asset for me for sure. Autoimmune immune conditions are on the rise and there is now a greater attention to treatment. For example there is significant evidence now the AI is highly linked to trauma held in the body. There are other new developments as well. Everyone’s body is different. We all just need to have our eyes open, question question question and be aware of the amazing teachers that our bodies are.

HeronNS profile image
HeronNS in reply to kiwijenn

I was briefly on a FB page where you were despised if you were on pred. The people were so nasty I figured it must be because they were always in so much pain. I left.

PMRpro profile image
PMRproAmbassador

Up to 20% of PMR/GCA patients have normal range ESR and CRP and then the symptoms are what counts. They can also lag behind the acute onset of the symptoms.

Is that your PCP or the ER who is saying it isn't?

As you obviously have serious symptoms, what does the doctor think is wrong?

beringer profile image
beringer in reply to HeronNS

No answer but it will go away,

PMRpro profile image
PMRproAmbassador in reply to beringer

But you had a flare of GCA 3 weeks ago didn't you? So why is this likely to be different?

beringer profile image
beringer in reply to PMRpro

I was completely over a short bout of GCA off preds & feeling fine, then 3 days ago I started with brain fog for 2 days, didn’t blame that on My illness & then the scalp & the pain, much worse then past…

PMRpro profile image
PMRproAmbassador in reply to beringer

I don't think you get "short bouts" of GCA. It may have gone to a very low level of activity - but you needed some pred not no pred. The inflammation has built up far enough to cause symptoms again.

Grammy80 profile image
Grammy80 in reply to PMRpro

I can attest to that~! 🙄 I wish!!!

Microbe1943 profile image
Microbe1943 in reply to beringer

Dangerous thinking if GCA

I won't repeat what the previous responders have said;

I will add "off to your E&R" even though you have upped the pred. Better to be sure than sorry.

beringer profile image
beringer in reply to jinasc

That’s my Sons suggestion, so probably will do that.. thank You..

Please go to the ER armed with your history and the facts you have learned from here. Explain how disturbed you are by the possible permanent effects of GCA and that you need their help. It would be wonderful if your son or friend could go with you as support. The very best of luck!

Doctors USED to be trained to treat patients, NOT lab results!!

readingbooks profile image
readingbooks in reply to Gibguy

And to see patients face to face !

I had jaw pain and later an extremely itchy scalp. I went to the Doc three times about it, over about a three months period. He said it was trigeminal neuralgia and gave me codeine and said it would go away. Suddenly, over about a 24 hour period, I lost the sight in my left eye. I didn't know what was going on. The hospital said that it was GCA, and that I should have noted the symptoms and acted sooner!

You must be a bit more forthright and downright - and SOON. It's your eyesight.

Get in there and holler.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to arthur463

That’s okay for hospital to say, but if you’ve never heard of GCA, how are you supposed to know! Especially if you have a GP who completely misdiagnosed it - as in my case.

Grammy80 profile image
Grammy80 in reply to arthur463

Same outcome for me. I kept going to the doctor as well~! This forum is a lifesaver and keeps me from getting too agitated with the doctors and helps me stay on a forward path. What is over my shoulder I cannot change. What I have learned from all on the forum has armed me with enough info that I know what to ask the doctor and know when a doctor is not equipped to help. The Forum Rules 👭👩🏻‍🤝‍👩🏻👩🏼‍🤝‍👩🏻👩🏽‍🤝‍👩🏻👩🏽‍🤝‍👩🏼👫 💖

HeronNS profile image
HeronNS in reply to arthur463

I hope you let the hospital know you had indeed noted your symptoms and repeatedly sought help - but of course you rely on your doctor to diagnose the issue! It's the doctor who needs telling off in this case so it never happens to another of his patients.

That's normal but 30mg for a couple of weeks should make you feel a lot better.and do not forget to reduce very very slowly and if that does not work go back to docs ad it make take 60mg for a couple of weeks.ic that works then start reducing.it took me 18.months to get off them but it worked fine and j wax free of meds for 6years untill I had my covid jab

I went 6 years with misdiagnosis because my bloods were only slightly raised.

Recently I had the same as you and my rheumatologist wanted bloods done. CRPs came back well within the limits when normally any flare is accompanied by an elevation. Despite this my rheumatologist said take 20 mg prednisone...hey presto next morning symptoms mostly gone. When my rheumatologist rang me that day he said "definitely a flare because of the response to prednisone and sometimes that happens with bloods but always go on symptoms".

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Manihiki

“….but always go on symptoms".

Wish all doctors would think like that……if PMRpro and I had a £ or $ or €) for every time we said that we’d be millionaires!

I really do sympathize. I hope you are feeling slightly better now at least. I have been through the situation where a rheumatologist insinuated that it was all in the mind, that I just needed to move on. ( I've been trying to do that ever since I came down with the condition). However a neurologist after untaking numerous head scans believes that the facial pains are a result of facial nerve sensitivity. The result being to take a pain blocker, with more side effects. So at the moment no thanks.

I'm not advocating anything, just briefly saying what happened to me. What ever is going on make sure it's not a flare. Take care.

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