Frustration with Rheumie an understatement!
Posted , 9 users are following.
Had a visit yesterday to my rheumy who wants me quickly off Pred, because he came to the conclusion a bout 6 months ago, maybe I don`t have and never had PMR!....He caused me great pain when he "trialled" me dropping 5mg every week...to see how I would respond. His next move was to start me again at 15mg (which I did 5 years ago) I am down to 9.5mg, which is far slower than he wants me to drop..(Img every week he wants)
?Yesterday though it was a registrar standing in for him, my long standing friend who is very frustrated at my situation insisted on coming with me....well I`m glad she did, just to hear her comments!...."You can`t have PMR, because when you drop 1 mg every month you would not experience pain.......my patients all come off pred at 1mg every month with no pain!"....I felt frustrated, worthless and felt like crying....I have heard this from my usual rheumie before....my friend then said, well if you have misdiagnosed my friend, what does she have then!.....she said I`ll examine her.....she did, and said, you have pain in lower back, legs and shoulders, this is not typical of PMR!.......ignoring the fatigue......so what do I do then....( I explained that I have to drop very slowly, or I get a flare up and it`s counterproductive otherwise) she said drop .5mg every month, and take Amyltryptiline (wrong spelling) for pain......with Paracetamol, and I`ll see you again, to which I replied perhaps 6 months (no point otherwise) no, she said 3 months.....well, my doctor has said in the past to do it my way.......I don`t think I will bother to go in November, what ever is the point!
?My friends and my flabber was really gasted!!
?Sorry to make this so long, I welcome any thoughts and direction, as I feel almost like fraud for having so much pain, and not knowing what to do about it!
0 likes, 35 replies
nick67069 linda17563
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linda17563 nick67069
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Thank you Nick, but he is the second opinion, (in same hospital) from what I gather they all follow this way of thinking.....I had struggled so much for about 4 years, that I asked the doctor to refer me to someone else..........the first one wanted a 1mg drop every month....her words were, once on steroids, you have to get off as quickly as possible...if I asked a question she used to say...no, listen to me! I knew nothing about PMR and steroids then and did as she said.... got off pred, which left me in great pain, and that`s where I am now.....I feel if I knew then what I know now (yes that old cliché!) I would have done it very slowly and been much lower than I am now and reasonably pain free....and maybe even off pred ....nearly 6 years later....
Thanks for replying....
EileenH linda17563
Posted
A second opinion in the same hospital department is not a second opinion - it is most likely to be a rehash of the first. I certainly wouldn't accept that as an option.
erika59785 EileenH
Posted
I will need to write a letter with my experience, and knowledge I received on this website, and hope for the best.
EileenH linda17563
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Where are you? You need to see a rheumatologist who knows what they are talking about. Because that one knows nothing and their patient skills are awful.
The reason they think their patients do get off pred at 1mg per months is because the patients it doesn't work for vote with their feet. And so should you.
linda17563 EileenH
Posted
I am in Norfolk......but wish right now I was in Antartica....away from it all!.....think I would get more sense from polar bears!!
?I wouldn`t mind but she could n`t come up with an alternative or what else I should do.........I`m just so baffled and worn out by it all......sorry, but this is wearing me down....I`m not feeling sorry for myself, just don`t know what else to do, so frustrated........
My husband so naïve!.....says they must know what they are talking about.....well if they do, why aren`t they referring me to some other department??
?I am going to look for a Osteo or physio dealing with PMR. I even asked if it could be Myofascial pain, she shrugged her shoulders, I wouldn`t be surprised if she had never heard of it before!
Thank you for replying....
BettyE linda17563
Posted
Linda, I'm in Norfolk too.
I had PMR for eight years altogether ( 3yrs. ok for 5..then 5yrs ) I was very lucky with my GP and, after a very unimpressive non consultation at K.L hospital I opted to be cared for by him alone. Is that possible for you? Does your surgery have several G.Ps?. If so you could ask around for opinions re people skills because that's what makes the difference. Someone who says "Listen to me" would put me off right away.
I have a friend with R.A. who is full of praise for the rheumatology dept. at the N+N but, again, it's a matter of communication and people skills and I do think that R.A. like diabetes has a much better set-up. From posts on here I sometimes think that some medics think that PMR is all in the mind.
It must be lovely to have your husband's belief in the medical ( or any other ) profession.
Remember the little girl with the little curl who "when she was good she was very, very good but when she was bad she was horrid".
linda17563 BettyE
Posted
Thank you Betty for replying,
Yes, you are right about the N&N with RA, my sister has it, and they are on top of things with her there, but VERY lacking with PMR....
?My lovely doctor has said do things slowly how you want (I see her in 2 weeks)....so I think that`s my only option, and as much as I tried to get out of going back to the N&N in three months she was having none of it....I wanted 6 months or lets not bother!...why does she or he whoever is there on the day, want to see me again anyway....
?My husband can have that belief because he is NEVER ill, hasn`t had a cold since he was 15...(now 72) so he hasn`t had to deal with them!......
?Good luck, and keep well!
BettyE linda17563
Posted
Linda, I'm sure it's your choice and if you have a GP you're happy with that's where I'd go.
After my non consultation at K.L. I wrote to my GP and said that the whole outfit was scruffy and poorly organised ( they hadn't even got the time of my appointment right and were already nearly 2 hours behind at 11.00AM There were only hard chairs and the magazines were on top of a high filing cabinet. ) and said I'd rather trust myself to him. He didn't bat an eyelid.
However, I do recommend the K.L. fracture clinic. Personalities I guess.
Michdonn linda17563
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linda17563, I feel your pain how I wish your Rheumy and mine could feel our pain for just one day then maybe they would understand. I now try to follow what my body is telling me using DSNS modified, if I feel any PMR pain I stay on old dosage. Plus I try to keep about a month supply of Pred ahead. Good luck on your journey, think positive and put a smile on your face. SMILING 🙂
erika59785 Michdonn
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Michdonn erika59785
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Thanks Erika! 🙂
constance.de linda17563
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Last paragraph! Join the club!!!!!😀😀💐
Anniecurd linda17563
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why do doctors think they know more than people who have the disease, they only read about it, their patients are living it? I'm sure my docs hate to see me coming, i do what I feel is best for me, because everyone is different and what works for you may not work for me. My rheum wanted me off pred last September. At my appointment I told her I was off them, she said well then I don't need to see you again. That was fine with me, I had enough pred to last for a long time. I finally stopped them on July 30, almost a year later.
Linda, your doctors are working for you, not the other way round, and what do you do if you hire someone who isn't satisfactory, you fire them!
linda17563 Anniecurd
Posted
Thank you for all your replies....and the over-riding conclusion is of course to walk away....and I am....I see my doctor in 2 weeks and will be telling her I`m no longer going to the hospital, and will drop the pred at the rate that I can cope with.
?It is sad that so many of us are in my situation, as I have said before, and did to the rheumy this week, I would have dropped VERY slowly myself and probably have been off pred by now, if nearly 6 years ago ? I knew the struggle ahead of me (I`ve gone all italic!)? Why should someone like yourself have to resort to lying it`s ridiculous. I have said all along, and many people have asked me this.....why does one hospital (or rheumy) follow one course and not another , why aren`t results published to see what`s better for us patients, the arrogance of the rheumies is what shocks me.....they are SO right!......quoting that they`re patients are off pred very quickly....but we all react different, we are human beings! That to me is the problem they don`t recognise that
My friend came with me this week, she wanted to hear it for herself, and was shocked, and when the rheumie was challenged she didn`t like it!..........I must stop being angry about this, but as I have said, it`s sad and I wonder just how many of us are out there struggling!
?My motto now is....I will lower and prosper.......AT MY RATE!
?Thank you all again
celia14153 linda17563
Posted
So pleased to hear this Linda - very empowering. You've not been listened to so thank goodness for this forum where people do listen, support and share. Forget the rheumy 😱 and look to a much better future 😀 Good luck! 🍀
Michdonn linda17563
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linda17563, I applaud you, but have one question if you stop using your Rheumy how will you get your Pred?
Good luck on your journey! 🙂
erika59785 linda17563
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Good for you!
BettyE Michdonn
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Mine was just on my repeat prescription list. Ordered on line and delivered to our village shop. Shouldn't be a problem.
Michdonn BettyE
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linda17563 Michdonn
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In the UK we get the Pred from the GP, I order online....when see my GP in 2 weeks? I will make sure that I will definitely be able to get Pred even though I`m longer going to hospital. Not everyone in the UK is managed by a rheumatologist with PMR....aren`t they the lucky ones! (I`m assuming you have to get Pred from the hospital?)
?I will keep smiling, and good luck to you too!
EileenH Michdonn
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Mich - In the UK and Europe in general it is the GP who provides prescriptions for most drugs, even the ones that can only be authorised by a specialist once the authorisation has been given. PMR is regarded as a condition which can be managed adequately by the GP - although the rheumies believe all patients should be seen at least once by an "expert". So if we end up with a "less expert" rheumy we can fall back to the GP - and it isn't impossible to change the GP if you get a poor one.
BettyE linda17563
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Not sure whether all Practices have the same method but at the bottom of my prescription list on line it says " Review Date ". While I was on Pred the various review dates came and went and the repeats came seamlessly but when I looked recently I see that my list is empty so somewhere in the four years I've been off Pred ( and everything else... hooray! ) the system must have been updated.
On one occasion when I'd been prescribed something for OA it didn't appear on the list and when I enquired the Practice Manager said just to add it on myself which I found a bit amazing.
linda17563 EileenH
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My sister is looked after well at the Hospital with RA, but has one of the worst ("needs improvement"
GP practises, I went online, and she and I have rung to change practises, but they all have a catchment area, and the couple she would have chosen were just outside of that.....it`s a myth when this government says you can have GP of choice....not possible....well that`s what we have found so far, unless there`s a way to get round it?
linda17563 BettyE
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BettyE linda17563
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I don't think anything does actually happen. I just presumed that, as I was seeing my GP regularly while reducing, he just kept waving the Pred. through.
Michdonn linda17563
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No, linda17563 the Rhemy calls in the prescription to Pharmacy. I then go to the Pharmacy to pick up the prescription. The process works okay if you have someone who will work with you, if not you are in trouble. Just have to think positive and plan ahead and keep smiling. 🙂
erika59785 Michdonn
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linda17563 erika59785
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Well, where do you find them may I ask....yes, I`ve become very cynical in my "old age!"......
Michdonn EileenH
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EileenH, I guess there is good and bad in every system. I am on my third primary care physician in 8 years. My PC is my Endocrinologist, she is great. My first PC was just a pill pusher, second a good guy but he got sick. So that part of our system seems to work. But the system is really broken. I have no idea how they are going to fix it, everything that has been done has made it worse. Just part of life I guess. But I am smiling. 🙂
Michdonn erika59785
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Oh erika59785, I can call the doctor office for refills a bit of a pain, several days before I can get the meds, if the doctor's office has the prescription correct, which sometimes they don't!
Believe me you have to keep your sense of humor. Keep smiling 🙂