Can you fight the Rheumy?
Posted , 9 users are following.
Some recent posts touched on areas very close to my concerns about GP's and Rheumy's attitude towards their patients when confronted with good data obtained from an outside source. I have become spring loaded when it comes time for a checkup with my Rheumy, knowing he is going to reject my ideas on the treatment plan and insist on schedules and meds that do not really fit.
On the 16th this month my checkup was started with a young female Rheumy doing the leg work of collecting current info from me and listening to my current condition and dosage. I related that due to old symptoms coming back when getting down to 8mg, I had reverted to 10mg. Then after that info had been relayed to my regular Rheumy he came in and began a systematic lecture about the dangers of being on a 10mg or higher dosage for very long. First was the bone density factor, then the osteoporosis tendency and finally the danger of being turned down or delayed for major surgery. And to make it all worse he talked me into a 10mg/week dose of Methotrexate, with 1mg of folic acid/day for bone strength, and a bone scan yet to come. Any new med brings new side effects to deal with, and although he is saying that I won't see any effects at that low dosage, he is not me.I am already taking Vit D and calcium. I did not want more medications on top of the lot I am into. I remind you that I have only been on pred since middle of May this year and really wanted to stay at 10mg for awhile after having returned to that dosage. I tried wqys of insulting his narrow minded approach but was only reminded that "This is what I do for a living".
Please repeat the straight story about Methotrexate regards it's ability to control PMR symptoms while trying to reduce the dosage. And what about Osteoporosis as a factor in using pred?
I am tired of being bullied by people in the medical here in US. They really think they are God. There are maybe 350,000 doctors in this country and they all think they are right. "Please dont blind me with the facts".
Thank you all for being there and have a great holiday.
4 likes, 13 replies
tina-uk_cwall paul45653
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twigjean paul45653
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cindy63197 paul45653
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davidmelville paul45653
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he then went onto lecture me on being stuck at 10 and said I must immediately go onto MTX . A few days latter I had paperwork for blood tests and awareness instruction. It fair scarred me. I cancelled all appointments, built in a three month period and got down to 7.5 at considerable pain and discomfort. I eventually caught up with my GP who said I need not do anything I did not want to but advised against fill fall out with the Rhummy in case I did need him down the line.
I'm glad I've got a sympathetic GP and remain 'scarred' of the Rhummy.
erika59785 davidmelville
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EileenH erika59785
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What a lot of people find is that it may help at first but later they have a flare, often a severe one, and only going back to a high dose of pred works to control it. Would it have happened had they been on a slightly higher pred dose? The studies are often only over a couple of years max - almost certainly not long enough in PMR to really draw conclusions for the majority of patients.
davidmelville EileenH
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i can unequivocally say that the Doc and I would have worked it out and I could have had a much better pathway. Would I have been off Prednisolone? Not sure on that one but I think I would have been lower with a better quality of life.
What went wrong? For me it was novice rhummys they truly screwed me up.
i thank God quite literally that thus sure has been there. The information and case histories are invaluable, the advice and experience is 'quality' of life saving.
A big thanks to all who care to share and make this site a premier resource.
davidmelville
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davidmelville
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its a shame we can't access our messages after publication to repair those bloomers.
EileenH davidmelville
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And yes - predictive text is an invention of the devil! I have an Italian mobile phone, switching the pt off is a pain - and predictions by the Italian version for English are particularly strange...
EileenH paul45653
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I have to live NOW - it will do me no good reducing pred to a level that no longer controls the symptoms leaving me immobile to avoid the possibility of a hip fracture in 10 or 15 years time. Immobility itself is a major risk factor for osrteoporosis. Luckily, both the local rheumy and my GP are of the same opinion. And if you are monitored properly then a dexascan identifies the risk of osteoporosis and you can then take medication to reverse the loss of bone density.
You need a better rheumy - because although yours may do this for a living he isn't adhering to international guidelines for the management of PMR. Methotrexate is no longer recommended a a "steroid sparer", it doesn't work reliably and adds in another level of side effects. He is not correct in saying there are no side effects at that level - there may be.
If you take the paper you get with the final link in the first post of this thread:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
"Our approach to the diagnosis and management..." by Quick and Kirwan, to your GP might s/he be willing to manage you? In the UK and most of Europe GPs are perfectly capable and generally happy to do the job. The paper is by experts and aimed at GPs to aid them in their job. Your current rheumy could do with reading it too - but he sounds a bit too arrogant.
Good luck.
paul45653 EileenH
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I don't think this Rheumy is ready to accept anything besides his own ideas. I am choking on the details about Methotrexate that I have just read. I took the first weeks dose and regret it. That's the last, and for him as well. I may take advantage of the bone scan order. I intend to adhere to the much accepted dosage reduction schedule and will be on 10mg for a good while.
misdiagnose paul45653
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