PMRGCAuk
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after visiting my gp.

dearest fellow sufferers, please may I ask your attention again, since I left my gp almost in tears. I seem to have upset him. three month on my pmr way now and the visit was about bloodtestresults. Rather good bse 17 and crp 3mg. vit. D is 61. About the prednison I follow the 10 % steps, every 4 weeks ( first week two high, one low, next week alternating, third week two low one high, 4th week low to see how it works, a system I trust, then reduce again. Am somewhere around 11,5 mg now. My gp said, what you do is hocus pocus, it is for a reason the tablets come in 5mg which you can divide in half. After that he said enteric capsules have no use, the prednison is absorbed in the bloodstream and weakens the gastric mucosa anyway, so he wants me back on omeprazol. And on top of that he wants me on alendronic acid. I.ve been reading a lot about that develish medication, and asked for a dexascan before I decide but that was not his idea. It is my choice of course but I don't know what to do. I prefer eating healthy and walk in moderation to my possibility, which is > 4mile a day. Sorry for the long story and thanks so much for reactions I am looking forward to. p.s. I want to ad a photo, but not such a big one?

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Hocus pocus he may think it is - but it works when you spread a reduction as you are and patients rarely have a flare. To get to 11.5mg after 3 months is very good going. And what does he think about other countries where the tablets come in 1mg sizes? The reason they come in 5mg sizes is cost - a 5mg tablet costs about the same as a 1mg tablet. For most uses of pred it is fine, you take a dose and taper quickly as you only need it for a short time. It has NOTHING to do with whether it is good for patients with PMR!

There is a theory that the presence of the pred in the blood stream affects the gastric mucosa - but I don't think it is proven and many of us have taken pred without omeprazole with no problems.

If you are walking >4 miles a day - I'd definitely want a dexascan. I'm impressed - walking in moderation you say!!!!

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thank you soooo much for the quick response, where would I be without PMR pro and all the other experts.

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PMRPro is right and goodness- please do tell how your able to do 4miles a day!! If be down for 2 days with that walk. Excellent for you. 👏🏼👏🏼

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Yes klairvOyant I realise that I am privileged to be able walking that distance, did a lot of walking all of my life-- had even 4 month leave to walk from Holland to Santiago in my 50th - and my muscles remember how to function. Hope the best for you, Aletta

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And all the more reason to have a dexascan. If you have walked so much your bones may well have perfectly good bone density and AA would be superfluous. It is recommended by some that it not be used for patients with good bone density - kept for when it is needed as it shouldn't be used for more than a few years without a "holiday" from taking it.

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Hi,

If it's working then why do you need to change things. Unfortunately lots of doctors doesn't seem to understand the illness or the way that Prednisolone works.

I have never been on the enteric capsules so can't comment, sorry. Took uncoated ones plus Omeprazole for 4 and half years with no problem, plus they can be cut as required, very useful as you get to lower doses.

It's your choice whether to take AA, I did, without any problem, but then I was susceptible to osteoporosis, but many are perfectly fine without it. If he won't let you have a Dexa scan to see if you actually need it, then don't take it. Your walking is helping your bones anyway.

It's very frustrating and upsetting when you come away from the doctors like you did, but if you can, I think you have to follow your own plan, whether he likes it or not.

Good luck.

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thank you so much for your wise words, they are comforting

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My GP like yours thought the Slow Reduction Plan was/is a ridiculous idea, so l never mentioned it again!

So for example at the beginning of the month you're on 7mg ~ 4/5 weeks later you're on 6.5mg what does it matter how you got there? Same Result! I remember once my CRP was about 25 & it had previously been 11 he said 25 wasn't high, if I had pneumonia it could be as high as 250 ~ so l pointed out l didn't have pneumonia!

Yep definetly push for a Dexa Scan before you start AA if you need it, I've been on it with no particular issues & am on the Zolendronic Infusion now for a different reason, but you do need a base line.

Hope you're not too upset, never mind your GP though I never see mine before the 10.30 slot after he's had his coffee!

Take Care

Mrs N 💅🏼

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thank you so muche mrs nails and you made me laugh!

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You have to laugh 😂otherwise you'd cry

Take Care

Good Luck with the reduction! x

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It's also tough with physicians whom don't have frequent or growing education with PMR. I've been trying to find one in the states knowledgeable to no avail. This site is my map and guide.

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I am just replying to applaud you for all your rational decisions and your determined march towards good health. There is a poem I like from childhood that says something like " the dogs may bark but my carriage keeps rolling" that's you! 👏

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Thank you sheffieldJane, let"s hope we all keep our carriages rolling.

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You seem to be managing well in spite of your GP, what is wrong with these people. I think it is perfectly reasonable to ask for a Dexascan as proof that you need to take another drug or not. Don't let him push you. I have a GP who is the same. I think I have won on an argument, I go back and we have the same conversation again. Having been on enteric coated for a year I assume they worked, as I had the magical effect when I was first diagnosed and the pain disappeared. I don't think I was dreaming it! I am horrified by the limited knowledge that a large number of doctors have regarding drugs. Give me a pharmacist any day.

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It helps a lot Piglette, sharing your experience, it makes me feel more safe following my own ~camino~ My daughter also reacts like, do what you think is right. So now I have the courage to go back to the gp and ask again for a dexascan.

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I don't know what your system is but here in South Tirol in Italy I have only to ask for a referral for a dexascan and I get an appointment within a few days. I have to pay 36 euros for it (we have small co-pays for most things) but there is no argument at all.

Given the number of people throughout the world who are in hospital as a result of drug interactions, and even die, you would think any doctor would be delighted to keep their patients off unnecessary drugs wouldn't you?

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thank you for your involvement. I don't mind contributing to the cost of a dexascan. But i'am not sure about the answer to the question where doctors are delighted about, perhaps prescribing a lot of drugs? But perhaps I'am to negative today.

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Greetings from the UK, Zofitmojelijk!

Thank you for your interesting post. I agree with you, and other experts here, about your GP (family doctor). He seems very wrong to dismiss your excellent tapering method as 'hocus pocus', and to refuse for you to take a Dexascan if you have had good health before PMR and take lots of exercise.

Maybe your doctor is just badly informed about PMR (like some family doctors..), and / or doesn't want to admit to it? As regards his advice for you to take Alendronic Acid, it makes sense for you to have a Dexascan first, as you might not need to take it at all (especially with the side-effects). I'm sure that the other experts here (PMRpro / DorsetLady etc) will agree.

It seems unfortunate that some doctors will prescribe drugs that are not the very best for the patient, but are more profitable for them / their surgeries! Ohhh...:-(

I know that many of us place great trust in our family doctors. But, sometimes, we have to question / challenge their decisions and advice when we have better research available to us than they have. Just keep 'pushing' for what you feel is right, or maybe it will be good to ask to change your doctor?

Best wishes and stay positive

MB :-)

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thank you so much for your reply. Now I am even more confident I am doing the right thing. I hope it does'nt sound to woolly but there is a thing like healingpower within and that needs space. like you I want to be well informed and have as much grip as possible on the situation. best wishes for you to, and yes let us stay positive. Alett

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If you have a rheumy, they might be willing to organise a dexascan for you.

My doctor had said no to a dexascan which I asked for as I had been on various pills, the last being alendronic acid for three years. I was not prepared to continue with the Alendronic acid as the up to date guidelines indicate any more than three years gives no added benefit. I had managed to reduce my pred and the osteopenia which had showed up unexpectedly originally on a dexascan I had had as part of an ongoing HRT research project was obviously linked to the start of pred.as at that time, following diagnosis with Parkinsons, I had actually doubled the amount of exercise I was doing (I never took HRT).

When I told the rheumy about stopping the alendronic acid and the GPs refusal, she referred me for a dexascan and the results vindicate my position re the pills - no osteopaenia. She confirmed the results to my GP gently suggesting that stopping the alendronic acid was a reasonable course of action.

I seem to be particularly sensitive to the pred as regards bone density but others do not suffer this side effect at all (see PMR pro) and this underlines the fact that we should be treated as individuals and not given treatment following blanket recommendations.

I might add that your GP sounds like an arrogant b........d. Hocus pocus indeed!!

"There are more things in heaven and earth, Horatio,

Than are dreamt of in your philosophy"

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hi paddyfield. sorry to hear from your experience with gp to. On a moment one hopes doctor takes good care of you, he goes another direction an you must "fight" for the adequate treatment. And I have no rumy, since there are no complications, that protocol in the Netherlands. Good luck, and thanks for your reaction and the poetry, Aletta

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Hi Zofitmogelijk

Constantly amazed at other nationals' grasp of English. Did not suspect you were from the Netherlands despite the name . I now VENTURE TO ADD THAT THE QUOTED LINES ARE from Shakespeare WHO SEEMED TO HAVE AN UNCANNY WAY OF CAPTURING THE HUMAN EXPERIENCE EVEN HUNDREDS OF YEARS LATER.. Please ignore capitals which I have just noticed.

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I told my GP, who diagnosed my pmr very quickly, about the dsns reduction mehod, and she made a note about it. When I saw her about 3 months later she told me that she had passed the info to another paient who was having difficulty reducing pred. She seems happy for me to pass her information that I learn her, and at the support group.

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way to go Vanner, hope you recover soon.

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My Doctor has semi retired and we have grown to an understanding of the way of reduction and so now I feel that I have been thrown to the lions . I so do understand how you feel .

I to have not taken the alendronic acid . Rightly or wrongly . I to walk from a mile to three miles every other day . Or daily depend on what I am doing .

When you do not feel trust and unhappy with your doctor is there not another you can start to see at your practice . I am assuming you are in United Kingdom .

I have taken lansoperol ( equivalent to omerazol ) which protects the stomache lining which I have taken since my husband was diagnosed with cancer some 7 years ago . I was diagnosed some two and half years ago with PMR . I do not understand your fear of taking this medication while On steroidsif it can stop you having stomache bleeds ulcers and far worse .

I have been dropping my dose of steroid half mg every four to six weeks until a few weeks ago . Got to 5mg and in my haste to be off of the steroid I started droping every 2 to 3 weeks can ,being mindful of the adrenal glands having to kick in .

Now I find I have reduced far to quickly and had to see a doctor because of severe head neck pain again , although this has never completely gone away . Am now having to bump up steroid to 10 mg for three days then drop to 6 . So it seems to me that you have been doing a pace of withdrawal that is right for you . Slow is best and stick with it . Good luck it your body . I have never been sent to a rheumatologist so perhaps you should ask to see one . However have noticed they don't appear to have a united way of dealing with PMR . Good luck on this mind boggling journey 💐💐

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Thank you, Car00b, hope the next dr. will be understandig your way handling pred to, and you may go on with the way that turned out to be succesfull for you. About omeprazol, it gave me nausea and diarrhea all the time so I bought enteric capsules to pass the stomach, problem solved it seems. Yes this disease is enigmatic! All the best, Aletta

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On the subject of doctors...! Yours sounds completely insensitive Zofitmogelijk and I really can't understand the reason for refusing a dexascan, or why there is so much disregard for different ways of managing steroid reductions.

I have what I consider to be a good, approachable doctor, but even she has her sticking points! I had to argue for a dexascan and only convinced her to send me for one when I explained it would help me to make a more informed decision about whether or not to take alendronic acid. I've just had the results, and to my relief I have very good bone density - but she still wants me to take alendronic acid. Needless to say, I shall continue to refuse!

I am following a very slow steroid reduction, having previously gone too quickly and had a flare which sent me right back to my original starting dose. My doctor thinks the dead slow approach too complicated (for whom?!), but says she will work with me and not against me in taking it slowly - providing it's "reasonable". I've come to the conclusion it's best just to get on with it in my own way and say as little as possible to her, though I suppose the argument may come when I ask for more pills than she wants to give me.

How much more difficult all this would be if we didn't have the opportunity to sound out fellow sufferers on this forum. Keep your chin up!

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Hi Patience

As PMR pro often points out the evidence is that with very slow reduction and the consequent less chance of flares, the overall consumption of steroids over a given time period is less. These are not difficult concepts!!! Most people seem to get on with the dead slow system . I smell condescension here However, I must confess that I got in a bit of a muddle with it. .With my current reduction of the equivalent of a quarter (by alternating doses) a month I have got through the 5 mg barrier and seem to be OK at the next, i.e. 2 mg for the last month I still get significant "flu" type symptoms if I forget to take a dose

It is so comforting to know that others fight the same battles,, ,although of course we shouldn't have to

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Thank you for the reaction, I can learn from You all, and perhaps later on one can learn from me, so we don' t have to reinvent the wheel. And eventually, we reeducate our dr. the way Vanner60 tells us about. IT might be a complicated job beeing a dr. nowadays! Perhaps we study about " How to survive my gp? "Wish you Good health, Aletta

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Just eat a couple of spoons of yogurt when you take your Pred and no worries. Wish I was walking 4 miles a day. Well done.

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to all the people who are so kind to gird up my loins, it means a lot to me and gave me back the confidence in myself, doing the right thing. The gp. confused me yesterday, so this day I asked for an e-consult and summed up my arguments for having a dexascan and my way of tapering pred. He reacts almost immediately by sending me to the nearest hospital and telling me he was confused to. On top of that he answers that my dealing with pred is very prudent but he reckons it is unneccesary for me. Next visit I'll ask why. So there is hope for a better understanding in the future, I am working on that. When the dexa results are there I will share them on this forum. Have a nice weekend

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"he answers that my dealing with pred is very prudent but he reckons it is unneccesary for me"

He has a crystal ball does he? A few people with PMR CAN reduce quickly - but you only find out you can't when it is too late and you are in a major flare. Many suffer steroid withdrawal discomfort every time they change their dose and feel ill for days, some even take weeks to recover again. Why should we have to feel ill most of the time? It is one thing when you have an illness where after 6 weeks you will be finished with pred and able to concentrate on full recovery. In PMR that isn't going to happen - so I'll plump for reasonable comfort in the meantime.

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