How do I know my diagnosis is right. : Hi new on... - PMRGCAuk

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How do I know my diagnosis is right.

cochise555 profile image

Hi new on here .Im worried ,everything happened so quick from having stiffness in limbs and very very tender scalp and head pain and then being put on 60 mg of predislone as markers up .being diagnosed with PMR & GCA. As there is no definitive diagnosis I worry that now I have to stay on these meds and I might not even have it . Sorry to be so negative but so confused with all of it .

30 Replies

Did the pred help the pain? If it did, you probably have had the correct diagnosis. You are lucky that someone did react so quickly as if it is GCA you can lose your sight which has happened to some people on this forum when doctors dragged their heels.

silverfoxes profile image
silverfoxes in reply to piglette

Hi there thankyou for replying .My Dr kept saying she didn’t know what was wrong. I Got worse and few days later I put a list in front of her With Lupus.Poylmyalgia. Etc .She didn’t think my symptoms fitted any on the list .I said I was worried about the head pain and going blind and I thought my symptoms fitted the Polymyalgia .Few days later she rang me and asked how The head pain was.By that time I didn’t want to be here and felt so ill. She told me to go straight to hospital for blood test and I needed 60mg preds at 6pm and I would say by midnight I felt 80% better.

piglette profile image
piglette in reply to silverfoxes

At least your doctor sent you to hospital for tests and the pred seems to have worked which is good news. Take your time tapering and stop if you have any discomfort. Hope things are now on the up.

cochise555 profile image
cochise555 in reply to piglette

Thankyou piglette ,I am certainly feeling more positive after reading loads of these posts . Wish you all well.

silverfoxes profile image
silverfoxes in reply to piglette

Sorry not sure why it says silver foxes.

Sounds awfully like GCA and possibly PMR. The consequences of going un-treated are severe. I would rather be safe than sorry. It is very hard to get a definitive diagnosis on these diseases, symptoms tend to rule. Did you feel so much better than before when you were put on Pred.?

As soon as your symptoms are under control you will start tapering off the drug. It sounds like you need a good talk with your doctor. Stay with us on here where there is lots of information and support. Do rest! These are significant illnesses but they do get better.

Welcome to the forum!

Hi there yes preds worked very quick and I was fast tracked to see ophthalmologist and rheumatologist who made very light of the situation and put me straight on 40mgs after twelve days .Then taper every two weeks by 10 mg then gradually 1mg every four weeks . See me in four months. Haven’t heard word drs.

HeronNS profile image
HeronNS in reply to silverfoxes

You need to be very careful with that taper. It is very fast and with GCA you don't want to take chances. Any recurrence of symptoms even if fairly slight, no more tapering. It is probably wiser to be tapering once a month. And when you get to lower levels, never more than 10% of the dose. Doctors want to race us off pred as fast as possible, but there's no point if the disease flares up and you have to increase the dosage again. People who have earned the GCA t-shirt will be along with lots of personal stories and advice on how to manage both your taper and the uninformed doctors!

silverfoxes profile image
silverfoxes in reply to HeronNS

Thankyou for the reply . Yes after reading some of the way people taper I feel this is very quick and will slow it down . I will gather all the information I can and take it with me when I go to drs as I haven’t heard from them since I was diagnosed .At least I will understand more about everything .

PMRpro profile image
PMRproAmbassador in reply to silverfoxes

I would be very doubtful about a rheumatologist who made light of GCA and who used a taper like that which doesn't fit with any guidelines I have ever read. This is much more typical:

rcpe.ac.uk/sites/default/fi...

If it is GCA they suspect you should be monitored regularly - every couple of weeks preferably though that is hopeful I realise!

cochise555 profile image
cochise555 in reply to PMRpro

He was very blasé about the whole thing . When I had the biospy the optholmogist asked me when I was seeing the Rhuematologist again and when I said four months he looked quite surprised .

Hi and welcome to the club that none of us actually wanted to join, the “aunties “ will be here as soon as the rest of the world wakes up, as Jane says lots of good information and advice from those who have been there and got the t-shirt. We do understand how you feel. It’s quite a shock being diagnosed with an illness that most people have never heard of. I am two and a half years from being diagnosed with PMR and it’s nasty little friend GCA and finding this forum has been an enormous help. Information, sympathy when you need it and a little laughter along the way. All good wishes.

silverfoxes profile image
silverfoxes in reply to CT-5012

Thankyou very much for your kind words . Yes I can’t stop reading all this information. It really helps as I feel we are just a number to the professionals .

Sounds very much like it. Same happened to me, literally one day working active 54 years old and wham, within two days I had this diagnosis and was fizzing on 60mg. Negative bloods and biopsy. I hold on to the fact that my symptoms went within 2 hours of Pred and that I’ve come close to a flare a few times in the early months so I knew it was still there. It made me realise it wasn’t just a flash in the pan. It is a huge shock and you need time to settle into it, not least get used to the Pred which can send you into anxiety mode. The main thing is you need rest and lots of self care. The Pred is stopping the tide of damaging inflammation but you need to allow the body to stop attacking itself which it does in its own time. It’s a long haul job and you’ll get your head round it, but the early weeks are usually a bit like you’ve been slapped in the face with a whole salmon.

silverfoxes profile image
silverfoxes in reply to SnazzyD

Thankyou snazzyD my rheumatologist said I’d be off the preds in 18 months and everything hunky dory. After reading this website I now know different and realise I have to take control . I just wish my family could understand it more as just because I’m on the preds they think I’m normal again.

SnazzyD profile image
SnazzyD in reply to silverfoxes

Mine said the same but not the research so I don’t know where they get the idea from, though there are always a few who sail through as in any disease. Have you tried some straight talking? On the whole I find that people don’t go scurrying off to look into it after being given the title; you have to do it for them.

cochise555 profile image
cochise555 in reply to SnazzyD

Hi snazzy when I see him again I will certainly be talking to him . If he thinks he is going to shove me out of his office again in 10 minuets he will be mistaken . Thanks to the help off this forum.

piglette profile image
piglette in reply to silverfoxes

I have come to the conclusion that people are not really interested in other people’s Illnesses, just their own, unless you are on your death bed perhaps. It is very frustrating when people come up and say you do look well. I just say, Ah I keep taking the steroids. They probably think it is the steroids that body builders take!

PMRpro profile image
PMRproAmbassador in reply to piglette

That's including rheumies then? Where on earth do they get the idea that it's gone in 18 months?

Our steroids certainly build bodies given half a chance...

piglette profile image
piglette in reply to PMRpro

Bodies of what though!!

cochise555 profile image
cochise555 in reply to PMRpro

When I do see the reheumie next time I certainly will be having a lot to say to him.

cochise555 profile image
cochise555 in reply to piglette

Yes you are right no one seems to care . I shall keep quiet from now on and only talk to people on this forum . They will probably think thank goddess for that . :)

piglette profile image
piglette in reply to cochise555

I think I agree with you!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi cochise555,

Welcome - it is very worrying early days, but as piglette says some of us didn’t have such a “switched on” doctor, so although the drugs are scary, not being treated properly is worse.

Have a look at this, it may help you understand your illness a little better, and give you some idea of what to expect and what questions to ask your doctor

- healthunlocked.com/pmrgcauk...

Hi there thank you . I more or less told the dr what I thought it was (after looking up symptoms) as she had scratched her head for two weeks saying she didn’t know what was wrong and I was getting worse and worse. Yes I shall be reading everything I can . Kind regards

Almost six years ago I had GCA diagnosed. I was put on 60mg of predisolone and within about an hour my very tender scalp felt easier and also the rest of my body. Did you not feel this? Listen to your body. There is also a scan you can have now to confirm it. Ask if you can have one. You will feel very drained. Just be patient with yourself and plod. It takes

about two years to ease. Good luck.

silverfoxes profile image
silverfoxes in reply to prunus

Hi thankyou. Yes the preds worked very quick .They gave me a Biospy 10 days after seeing Rheumatologist which was negative . (Scar till healing ) Never mentioned a scan.

SnazzyD profile image
SnazzyD in reply to silverfoxes

The biopsy is unreliable if negative and being on Pred first, which you had to be, makes a negative even more likely. The scan in question is a specialised ultrasound, but it can’t be done by any radiographer because they need specialist training. My local hospital, the size of a small town and “centre of excellence” couldn’t even do one. By the time I’d learned of it on this forum the clock was ticking on the Pred effect and there wasn’t time to be referred to elsewhere in the country. My local Rheumy team were not interested in helping me either, so I had the biopsy instead 🙁.

pmr-gca-northeast.org.uk/us...

Follow this link and read up on the BSR current Guidelines on the Diagnosis and Treatment of GCA and PMR.

Knowledge is power.

PMRpro profile image
PMRproAmbassador

I'm sorry but for the time being you just have to accept that the doctors have your best interests at heart and were sure enough that it could be GCA that they gave you high dose pred. In doing so they have reduced the risks to your sight and possibly a stroke/heart attack by reducing the inflammation as quickly as possible. The ultimate side effect of GCA is far worse than the side effects of pred - GCA blinds irreversibly and there are a few on the forum who wear that t-shirt because they weren't diagnosed quickly enough.

Many illnesses require immediate intervention without cast-iron assurances that it is definitely a), b) or c). This is just another one.

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