Apparently I don’t have PMR as 15mg fixes it straight away.
Me after talking to the Doctor: Apparently I don’t... - PMRGCAuk
Me after talking to the Doctor
Written by
Estellemac
To view profiles and participate in discussions please or .
67 Replies
•
Whhaaat? I would have thought getting rid of symptoms when taking 15mg gave a pretty definitive diagnosis.
Oh my!!!! Seriously???? Was that really the informed, medical hypothesis?
WOW!
I'd be mad as a Bulldog too!
Estellemac in reply to
I said I had reduced from 20mg after a flare up but 10mg wasn’t working. I have all the symptoms back shall I go to 15? I reduced 10% over 8 weeks. I said I have had 3 flares in 3 years each time I reduced. Can I see a rheumatologist? Managed on my own so far but now need support. It’s always gone away for at least 6 months or more. He said those are not PMR symptoms you have something else. So bloods tomorrow for ESR and CRP which will probably be a false negative as I am on Pred. Exasperated doesn’t quite cut it.
Can’t you get a referral to Sarah Mackie Rheumatologist at Chapel Allerton?
I will see what my Doctor says on the 26th. I will ask for someone who’s speciality is Rheumatology not general practice. Just to be on the safe side then we can rule out all the things it’s not and get on with it!!!!! Where’s Chapel Allerton as I will suggest that to him.
In Leeds
No far on the train easy to get too and happy to travel. The one here in Doncaster wasn’t interested last time I asked. Said we could manage it? Me and the doctors? Obviously not as it isn’t their speciality. That’s why he’s a consultant surely? Anyway I will ask.
I said Sarah because apart from being wonderful she’s geographically handy for you. She sometimes saw me at Otley, well worth the trip. You do go to the Ilkley support group don’t you?
Yes willing to travel if they do referrals out of the catchment area. I did think of Wakefield as well as I had my op there.
PS : I made Bliss Balls after Rugger brought some to Ilkley. I am taking some to the Southwell meeting on the 23rd.
haha. GREAT look! Doc is a dope
Cor blimey, luv a duck.
DorsetLadyPMRGCAuk volunteer
Course it does! I trust you gave him one of those looks!
Sadly it was only a telephone consult as I called 4 minutes after 8am and all Face to Face appointments had gone. Do have my monthly pre booked one on the 26th with the Doctor I am educating in this condition.
Good - there’s hope for one then!
PMRproAmbassador
Really?????????????? I wish... And I know a LOT of real experts in the field who think patients might need up to 25mg to start with:
rheumatology.org/Portals/0/...
I'll resist the temptation to copy and paste the authors list!
And from the other point of view - that is symptom management and doesn't touch the real disease - that lasts a median of 5.9 years:
practicalpainmanagement.com...
Do hope you hand him some bedtime reading in at some point.
Thanks for the link I am printing some educational material in prep for my one to one visit to back up my evidence.
By the way - what are not symptoms of PMR?
He thinks I have an infection as the symptoms are flu like? Stiff shoulders hips thighs and lower back pain/ache and general muscle fatigue. Can’t sleep because I can’t turn over or lie still. Just exactly how it was when I was diagnosed. That was when I got the magic 25mg cure. Sorted it all out started to reduced slowly over a year got to 5mg started again. He really needs to Google it.
Obviously has never read a treatise on PMR has he? That's textbook...
You are possibly one of those people who only absorb 50% of the dose. Has he thought of that huh?
Probably doesn't know about bioavailability!
Thinking isn’t his strong point. Telling is what he’s good at. However I may change that with my portfolio of research, leaflets and information gathered from research fellows.
Well good luck with that!I thought the same thing with my Rheumy here in the US. No such luck. I gave him gave him multiple research gain from here and he just rolled his eyes and looked at me like I was crazy. After arguing with the nurse on the phone last night about him not wanting to refill my prednisone and I am at 13 mg because "he thinks you should be further along in your taper." Time for a serious search for a new doctor 8 months into this PMR diagnosis at age 55.
He is refusing to give a patient a script or pred when they are still at 13mg? THAT is medical negligence - whatever dose he wants you to be on, he CANNOT abandon you without pred at that dose. He could kill you, to put none too fine a point on it.
I got a text 15 minutes before the pharmacy closed last night. I guess he begrudgingly called me in a 30 day supply my appointment is mid July about 30 days. I guess I will start the search. I just can't deal with the frustration of his attitude. I got enough things to deal with.
I think you must have PMR,your doctor needs to be more informed about this condition ,Good Luck !
I have been waiting until I could respond without swearing. No. Not there yet. @#££&-+()//+-_£@@
in reply to
Ohhhhh good! A woman after my own heart!!!!!!! Hahahahahahahahahaha!
Estellemac in reply to
Please private message me if it helps. I can then repeat your sage words on me own whilst Parker is out earning my holiday money.
in reply to Estellemac
😂😂😂
😂😂😂
It'll take longer than that!!!
Estellemac in reply to
Do you know what is getting to me most? The obesity. I can’t shift my weight till I am down really low on the Pred like last time. Then I lost a pound a week. But no one else gets it. I saw your post the other week and you reflect all my thoughts. Kudos to you for speaking out.
in reply to Estellemac
It's a tough road finding the balance. Once you can move about more without the pain the world gets bigger and enjoyment can be found in more things. There are times when a meal is the main thing to look forward to. Good luck🌻
SheffieldJane in reply to
Or that Caramel Magnum that is still in the freezer. 👀
in reply to SheffieldJane
Does ice cream in the freezer lose a good % of it's carbs like bread???😜
Estellemac in reply to
I like Xand Van Tulleken too. Does Carrot cake have good veg based carbs??
in reply to Estellemac
I hope so. I used to make a carrot cake that had more carrot than usual in it and it was nice. I am going back a while when the moisture if carrot replaced some of the fat. I love carrot cake almost as much as parkin. 😋
SheffieldJane in reply to
Definitely, think of what a tiny little superfluous it would be if you melted it. 😂😃🤣 that was auto correct and I’m leaving it.
in reply to SheffieldJane
Mmmmmmmmmmmmm !
It makes me sad too. Shutting my eyes in front of my wardrobe full length mirror, I would have made a good nun. 🙁
When I read posts like this, it makes me think "Huh??? What? Isn't that what Pred is supposed to do? What I am missing????" Then I head to the responses to see if they can clear my confusion. Ahhhh...I didn't miss anything: Estellemac has a crazy doctor. But isn't that scary? Just think if it was a person newly diagnosed that hadn't gotten the education that we've gotten from this site. How terribly confusing to be told that you don't have a disease because the drug you took for the disease and it's symptoms worked. SAY WHAT????
in reply to Insight329
Say what... indeed!
Of what? Dynamite. 🤨
That is almost exactly what the doc (over the phone) said to me when I reported that 15mg wasn’t doing what Was expected. There was a silence. So I said “where do we go from here?” And she said “well I suppose you could double the dose for a few days and see what happens..” she didn’t think anything would, I can tell these things.. even over the phone 😉 So I took 30mg and saw another doc in a weeks time who had me reduce to 25 and then 20mg (probably the dose which would have worked initially) let’s face it 30mg is going to temporarily “cure”a lot of things, eh?!!
But make sure you get a good Rheumy. The one I have likes to reduce at the usual 2.25 per 2 weeks, which I cannot do without flaring. I’m sort of ignoring them and doing my own thing at the moment. Next weeks telephone appointment with the doc should be interesting...
Sorry to hear about your disappointing doc, but I like your photo, might have to steal it for future use after the phone call.. 😀
The photo is a Sylvac piece that my next door neighbour gave me. It’s an old money box he was chucking out. He had spray painted it silver. After the conversation with the doctor I stripped it back to its original form using a Brillo pad to remove the paint. It was a fantastic distressing exercise that put things in perspective really. I am now wondering if I have Pred withdrawal not a flare? Maybe I should go a few more days till I have my blood test too as I can’t see my original doctor for two weeks. It is painful but does ease by about 12 noon. I just want a better quality of life to get out do more and be busy enough not to think about my nemesis FOOD!!!
How quickly did it start? Pred withdrawal really does start very quickly - as soon as your body notices the new lower dose - and then slowly improves over the following week or two, for some lucky people it is a few days. A flare on the other hand usually takes at least a few days to appear and then gets worse with time.
That is the main reason we bang on about using small steps to reduce - that makes it less likely it is withdrawal. But beware doctors who will tell you ANY pain is withdrawal!
It started a few days after I dropped from 12 to 11. So after 4 weeks at 20 I dropped 2 a week all was going well till I got to 11. So may be I should have done half 12 to 11.5. Or I am thinking now it might just go away in a couple of days? To be honest I should have done a chart like Rugger did and brought to our meet up. I am getting more confused the more I think about it. I have a daft idea of taking 7mg Sat Sun Mon and having my bloods Tuesday to prove a point. If it would work that is. Probably not. I have stopped taking Naproxen for my OA. The doctor said it was not needed with Pred and I just took it cos it was issued? Your prescribing I thought! So that’s where I am at. Confused.com.
I think pred withdrawal and PMR flare are very difficult to gauge between. I think I’m getting to know the difference, but only time will tell..
That’s my thought now actually.
Sounds so familiar but with me it was the Rheumatology consultant who is querying PMR, and claiming the flare up I had wasnt one at all, (but of course they never say what it could have been), and I didnt query why he thought the increased Pred made the pain go away.
Bridget
Estellemac in reply to
I know they can’t figure everything out but surely it’s basic science or biology? Or is it just Pred the wonder drug cure all. I think that’s where my doctors is going with this.
i've been told my PMR is inactive and the pains are OA, which I do have, rheumy did an US on my shoulders and it showed up (hadn't had it in the shoulders before) so
+ x - = - !
I have OA too. Wonder if I will get the same response? Having bloods done now but we all know being on Pred often doesn’t give an accurate result as it’s being treated anyway.
Proven? The first rheumy I saw said the knee and hand pain I had was OA "I can feel it". That was 14 years or so ago. I had a knee x-ray this week because I have some pain in it, especially when walking downhill. There is absolutely NO evidence of OA. And that is in a knee that was mangled skiing 26 years ago - NO OA!
Bit like when they say you've got a virus - it covers everything...
One time in my 20s I was practically dying, losing consciousness, collapsing, because of extremely low haemoglobin and the doctor said "there's a lot of that (what?) going around".
Wonder if he has been struck off yet?
Wonder if he was any relation to my MIL's doctor? He did a brilliant job of ignoring her anaemia - just looked at her eyes! Nearly wet himself when we sent her home from Germany with our blood test results - Hb 7. Then he probably killed her second husband by negligence and denied her SIL hospice care when she was dying of stomach cancer. And MIL was going to leave him money in her will!!!!!
My "diagnosis" was by telephone, based on what my husband described to him. A couple of days later I dragged myself to student health where they took one look at me and took me to the hospital! We studiously avoided ever seeing that particular doctor in the practice again.
I'm going to chip in here, as my doctor also has no clue how to help when it comes to PMR. The rheumatologist clinic ( South Wales ) refuses to see me and it has been put back in the hands of the doctor to manage this. Which of course in my case means "D.I.Y." as she is about as much use as an ashtray on a motorbike in a hurricane.
I'm pretty new to this as it only started in my case in January this year and if it had not been for my searching ( in frustration ) to try to understand what was happening to me, I would never have found HealthUnlocked. I can't make my mind up if the lack of support by the medical establishment is down to sheer weight of workload or that they really have no clue how to get this under control. If anyone reading this has experience of this in the Swansea area and has managed to get anything like medical support, please let me know.
I am printing of information for the DR and the surgery to leave for them to read. Probably won’t but I will flood the place with various items PMRGCAUK related.
Rheumatology in S Wales is dire. I have a friend with lupus who has major problems since her "Knight" moved to Cardiff and they won't allow her to go there to see him - he wants to see her there. So she goes privately to London. In Wales they consider a GP "with a special interest in lupus" to be adequate care for a complex patient.
PS - love your analogy!!!!
Ridiculous
Not what you're looking for?
You may also like...
My doctor diagnosed me
I’m still having really bad headache and pain in my head and shoulders. Well that’s what I have for...
Worried after visit to doctor today
in pain from a previous reduction.
Anyway, I am having full blood tests next week and my main...
Doctor wants me to start Alendronic Acid.
Acid. After a long discussion I have decided to give it a go after I have my crown fitted over one...
Leflunomide next drug doctor wants me to try
everything points to PMR diagnosis which I got 3 years ago being correct . (who would have thought...
Unsure why doctors put me on theses
no I replied then asked if I had a headache no I don’t but my knees are painful and as the day goes...
Discomfort in shoulders for weeks after doctors tapering
Had doctors appointment oh boy she wants me off steroids ASAP
Update after Doctors appointment to discuss symptoms unrelated to PMR on 1-2mgs Pred.
Can this be GCA happening to me after 1 1/2 yrs. of PMR?
