Hi again, I’m just wanting to ask you PMR pros out there if any of you have been misdiagnosed along the line?
I’m now just getting my head round my diagnosis ( in June 2018) of PMR with possible GCA and on the slow way down with the Pred - only just started to drop it from 40mg to 30mg . Then it’s going down to 20mg so I’ve been told.
I’ve just told my family the news and I’m now getting “I should get a second opinion” from them .
Could it be something else?
All my symptoms are similar to most of you on here. I’ve had two blood tests. The Pred worked within days of being taken .... my doctor has treated other patients in his surgery with the same PMR successfully .
What do you think ?
If so where do you go for a second opinion?
I’m worried now...
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chillipeppergirl32
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Have the steroids worked miraculously to get rid of the pain? If you are now feeling OK it is quite likely it is PMR. Why do your family think you need a second opinion? If you are feeling better and seem to have a doctor who has experience with other patients with PMR I am not sure why you would need the second opinion. You could ask your doctor to see a rheumatologist of course.
I agree with Piglette. As long as your slow taper works, in other words, pred continues to relieve the symptoms you had initially, I see no reason for you to be concerned, and nor should your family. PMR is serious, GCA more so, but both are treatable and virtually all cases go into remission after a period of years. The side effects of pred can be annoying and in some cases serious, but they can nearly all be managed, and diminish very quickly as the dose is tapered. 😎
If the doctor thinks it’s PMR, maybe GCA and you are finding the Pred is working then why seek a second opinion? Does anyone in your family know more than the doctor? They may not like your diagnosis, but that doesn’t make it wrong.
By all means seek a second opinion if you’re not sure you have the correct diagnosis, but from what you’ve said I think it will probably be a waste of money!
Yes and that’s understandable, no one want to believe their mother, father, daughter, son, sister, brother,wife, husband has an illness - let alone one they’ve probably never heard of!
But there are a lot worse ones to have - it might be life changing, but it’s rarely life threatening.
They will eventually get their heads around it - hopefully!
If it's any consolation to your family, PMR is probably the best diagnosis for the set of symptoms you have. It's the one auto-immune disease which does go into remission and is easily treated with corticosteroids which have been used for decades and whose side effects are well-known and manageable. Steroids sound scary, none of us want to take them, but they aren't like the anabolic steroids misused by athletes and will not harm us, especially with the doses needed for PMR.
I agree with piglette’s comment. I hope your doctors don’t want you to do a drop from 30 mgs to 20 mgs in one go! You do need to taper gently, maybe 2.5 per month stopping at any sign of symptoms returning. Then 1 mg drops after 20 mgs. It all seems pretty fast, you’ve only just been diagnosed and GCA cannot be trifled with. All your symptoms need to settle down, the inflammation is dangerous.
It never ceases to amaze me that the non-medical population seem to think that everything should be subject to a "second opinion" about the existence of a duck although the symptoms look like a duck, walk like a duck and even quack like a duck. No doubt they are freaked more by you being on BIg Bad Steroids than the label.
As Heron says, PMR/GCA is a preferable diagnosis for the set of symptoms we have as it mostly goes into remission sooner or later - nothing else does. As long as your GP checked certain things to rule them out - you have had a "second opinion". But anyway - what happens when someone has a different opinion? Do you then go to a third referee?
A good point , yes ,what happens then ( with a second opinion? ) .i think they( my family) are reacting to my going with the diagnosis and getting on with the treatment without talking to them about it .
Seemed obvious to me that a quick reaction was necessary as I was in a bad way . My doctor has experience with PMR.
Pains and stiffness gone , just learning to cope with hot flashes and tiredness for the moment . Carbs under control and lots of supplements ....
Think by now, with all the discussion so far, that you know where you are, it's the family not understanding that's shocked them into the second opinion thought, but they will come round, as you get to know more about your illness you'll 'educate' your family by sharing everything with them - it will take time but they'll support you with whatever you need. As you say very early days...
I'm sure you will. The dose of pred you've started on indicates the doctor thinks it's GCA, for PMR you only need around15mg usually. Just keep an eye on your symptoms and if you get any visual disturbance at all go straight to A&E no messing. The 40mg dose is pretty low for GCA - I started on 50mg and I did have visual problems but has been enough to save my sight, now 4 years on, others can be on more initially depending on their symptoms. Your reduction might be a little too quick from 30mgs to 20mgs in one go, if you are okay then it will need to slow as you reduce further by 2.5mgs until around 10mgs then by 1mgs and even by .5mg as you get really low. The dead slow nearly stop (dsns) reduction is something you will come across. The key is to listen to your symptoms they are more important than any tests. You should also be referred to a Rheumatologist, if your doctor says he will treat you you can insist on a referral for proper diagnosis in the first instance, then your doctor can continue to monitor you. Just remember the first year will be the worst - so no sudden cure I'm afraid, only careful management.
Apologies if I've repeated what's already been said as I haven't read all responses but if that is the case then at least we're all on the same page!
I was also diagnosed with PMR/suspected GCA and have had my eyes checked today as my cataracts got worse. Everything seems OK. I was started on 40mg and am trying to decide best way to slow paring. I think reducing by 2mg would be even safer but how long should I do it, 2 weeks or 4 weeks. I had a bad experience when doctor told me to reduce by 5mg 12 days from start in May.
I can only tell you how I did the taper as did have withdrawal symptoms, which can mimic a flare, so first thing I was taught was to know the difference. Get to know your illness and what suits you in treating it - use advice as a guide only - what works for one doesn't necessarily work for another. If you are still on 40mg then you needn't slow it right down yet.
I went from 40mg to 30mg x two weeks, (originally told x 3 days!)
30mg to 25mg x 2 weeks, (originally told 30mg to 20mg)
25mg to 20mg x 2 weeks until down to 12.5mg (originally told to 10mg)
10mg by 1mg x 2 weeks or even slower,depending how you are, allowing symptoms to settle before next taper.
It's not unusual to hit problems at around 7/8mg so you may have to stay on your current dose until symptoms ease, say for around 2 weeks, if they don't settle then you may have to go back to the previous dose you were okay on. I had to taper even slower, by .5mg, until I got to 3mg, took 36 months in all (due to withdrawals and surgery) and haven't been able to get any lower. I had a flare after 18 months on 3mg and upped to 5mg - it's taken 8 weeks to reduce to 4.5mg, my current dose, much slower than first time round. My symptoms haven't settled yet and will wait until they subside before next taper. I think my taper might be extreme compared to some but you have seen all the advice so important you do what's right for you.
Thank you for all that useful information. I always gain some help and yours is very informative. Am going on holiday for a few days so hope that will help. Regards Beryl
Hi Chillipepper. Really glad you've got an answer even if it is one you wouldn't choose! The uncertainty is a killer, feeling like death and not knowing why. I'm sure as you take time to come to terms with this and to educate yourself your family will slowly feel reassured. Be kind to yourself.
I can't add much anything else here, butI do think, that even if you had a second opinion now the blood tests would not indicate much because of the prednisone use, which has masked the inflammation so a second opinion won't yield much I shouldn't think. BUT mainly I suspect your family is worried and wants it to be nothing. Just reassure them you are feeling MUCH better and that is the bottom line and maybe give them a link to the PMR forum or look on the pinned posts and print out what is PMR for them! and GOOD LUCK. There will be bumps along the way but hope and help here! (Sorry if I repeated other's opinions..did not read all too carefully!)
You are quite right to be concerned. My GCA was misdiagnosed as trigeminal neuralgia - so I was given codeine instead of prednisolone - so I went permanently blind in my right eye. I was then hospitalised and put on 60 mg preds. All of my symptoms - except the blindness - vanished within three days - like you. I now know that I had all the classic symptoms of GCA. Such a shame that my Doc didn't.
Even if there's ANY chance that you have GCA, you should be on preds to save your sight - and you are - so that's good. Mind you, preds are a VERY high price to pay. Two of the side-effects are diabetes and osteoporosis. I now have both -There are LOTS of others that I could list for you. Oh what joy!
There is a test for GCA. It's called a temporal artery biopsy. I believe that you have to have it within a certain time from starting on the preds, otherwise the symptoms can be elusive, apparently (although the GCA may still be there! ). I think you should chase for that - so you can nail it down. It did confirm my GCA. It helps the Meds in knowing what to do with you.
I can't think of much else you can do in the short term. Preds are the classic - but sledge-hammer treatment. Stay on the case though. Watch the Meds like a hawk - they do make mistakes, I have found.
My experience of family concern is that they all tell you what YOU should be doing - but YOU don't always feel well enough to do it. Then they tell you off for not doing it. Sometimes I think "Squeak-squeak - I need a bit of back-up here". Never mind - they mean well.
You are likely to be in for quite a miserable time with the steroids Chillipepper. They tend not to warn you about that - but it's better than going completely blind - So I keep telling myself. I am down to 9 mg/day now. Apparently going from 10 to 5 is dodgy. The GCA can "flare" again. Going from 5 to 0 (if you ever can) is even dodgier. Heyho! What fun!
Don't mess about with the preds, whatever anyone says. Stick to the reduction timetable as if it's a religion. Are you under the care of a specialist rheumatologist? You very certainly should be.
I am nosy by nature - So where are you from - and how old are you? I won't tell anyone. I am from Surrey in England, and I'm 78. I would like to last to 85 or so - then they can drag me dribbling to a home if I'm in a pickle.
Do write again if you like. I barely know what I'm talking about, but feel free to lean on my shoulder if it helps.
Can I just add: I have been on pred for 9 years - no osteoporosis, no cataracts and no diabetes. They are not inevitable.
The TAB is only postive in less than half of patients - even if they hadn't already been on pred. It is a very unreliable "gold standard"!!! If it is positive - 100% confirmation. If it is negative - it means nothing. The symptoms and response to pred are more important and if having a TAB won't change your doctor's management of you, there is no point having it. Always ask.
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