How to survive my gp

Hello dear members of this forum. Yesterday a follow up with the gp and distressed once more. On Pred since october 2016 and now on 7,5 mg Blood bse is 17. So far so Good. But now he wants me off Pred within two months! I told hem about my fear of flares, and using more Pred that way after all. He just raised an eyebrow. Then I told him about the Bristol papers and Eular recommendations and suggested to send him material and he answered " you can do that but I am not going to do anything with the knowledge". In Holland we have the nhg ( dutch gp association) and they advice 2,5 Mg in at least 7 weeks meaning still 21 weeks, being closer to my idea of 1 Mg a month. So what to do, going on my way, and be without Pred in a couple of weeks and hoping the gp will provide, or go back and protest. I am just so fine, building up and recovering, Taichi, Swimming and walking, and could do without the stress. If it was not for you, members of this forum I would be on AA now, with bones in good health. Thanks for this a thousand times, Aletta

22 Replies

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  • Aletta, without good reason for wanting you "off Pred within two months", rather than taking good care of your health, he is risking it! As for his reply to your offer to show him some helpful papers, that beggars belief. If it was here in the UK, I would be reporting him to the Practice Manager. Is there not another doctor you can see? You have done so well already being at 7.5mg after just 7 months, plus you are helping yourself exercise-wise with Tai Chi etc. This dose can be a sticking point for many due to being the point at which your adrenal glands will be trying to get back into play with producing their natural steroid supply again after having been suppressed by the higher doses. Even 1mg a month is a bit risky from this point- I did it in just half mg decrements tapering to each new dose over over about 7 weeks. Aletta, if you can't find a more knowledgeable and caring doctor, then just follow your symptoms and the reduction advice on this forum to go slowly slowly from this point, remembering that each reduction will be a higher percentage drop than the previous one. You are doing so very well so why upset the apple cart now by following his unprofessional advice. Good luck!

  • Hi Aletta

    Sorry to hear about your problems with your GP. Maybe he is being cautious about the long-term effects of Pred? (some GPs are). But it is worrying that he does not seem to want to listen to you. You know your body best, and you have very good advice from this forum about Pred tapering. But despite this, your GP seems to be going against his professional association's (nhg) recommendations.

    My advice would be to write to your GP with a copy of the nhg recommendations and ask him to explain to you (again, in writing) why, exactly, he is going against these. Ask for a reply from him within 2 weeks or you will refer the matter to his professional association. You then have a record / evidence of his recommendations to make a complaint to the nhg if you need to.

    I know we all want to trust the advice of our GPs: but sometimes we have to challenge their (faulty?) recommendations with reliable facts and information, and be assertive in asking for what we want / need.

    Hope this helps.. try not to get stressed - just get a result! ;-)

    MB

  • Not much to add really - except to reiterate he is merely showing his ignorance. Can you see another GP within your system? Because that seems the only way out of this situation - he will just refuse to supply you with pred if you try to do anything else.

    What is his reasoning for telling you to suddenly stop taking the only medication that manages your chronic autoimmune disorder? Does he WANT you to have a flare of symptoms?

  • I wanna Tell You a Storry (a well known saying from Max Bygraves I think) and no big words.

    So here goes.

    In the early days of my PMR journey I had to see a young GP, and at my age of 70, he looked like a school boy. This was at my local health centre because my normal Doctor was on leave.

    I went there as an emergency. I told the young GP that after my reduction from 15mg to 13mg of pred the pains in my shoulders and legs were returning and I asked him if I should increase the dose a little. He then said “take ibuprofen instead because Prednisolone does nasty things to the body”. He then proceeded to tell me all the ghastly side effects that Steroids could do to me and how it can lead to all kinds of further incurable problems. I was in shock!!

    However when I gained my senses I felt he was wrong because I had done so much reading about the treatment of PMR In fact I felt he was completely wrong. But he was the doctor.

    I did not know what to do! So being in a bit of a quandary after this visit and still being in considerable pain, I decided to contact a Rheumatologist privately. I got an appointment and saw him within two days.

    Now this is where it gets crazy!! . When I saw the Rheumatologist he said perhaps he, meaning the young Doctor, was right? The Rheumatologist then decided to proceed down the route of (NISEDs) prescribing Etodolac 600mg sustained Release Tablets.

    At the time I trusted him. But later found out that this stuff is usually used for rheumatoid arthritis etc. not PMR and only then with caution.

    For me it was disastrous stuff. Within a month I had terrible allergic reactions. Itching all over my body and by this time, I was terribly and I mean terribly depressed.

    I stopped the Etodolac by my own volition and went back to another GP at my health Centre and saw a female GP who appeared to know how to treat PMR.

    I won’t continue with the story because since then I have been on the correct treatment with blood tests and all kinds of checkups to make sure it was PMR. However after going through the above journey I can only hope it is PMR, but after 2 and a half years I feel confident now.

    I am currently on 7mg with what appears to the normal snake and ladders game of playing with dosage and the benefit of the this LIFE SAVING FORUM !!!! 

    So to summarise, and if you have managed to stay with me this far. Others on this forum have said it all really.

    Judge your own instinct and if you feel something is not working, try to find another doctor, one who is familiar with the treatment of PMR. As PMRpro said “that seems to be the only way out of the situation” and Try not to get stressed as Markbenjamin57 said. This is seldom a quick journey.

    I hope you don’t go on the journey I went on. May the force with you! . Sorry about that, just been watching ‘Star Wars’

    Pete

  • Wow Pete, what a story!

    What can I say.. except I'm totally in tune with you and will respond in more detail as soon as the alternative meds wear-off (a couple of glasses of the red stuff on a Friday night - hic!). :-/

    Like you, I'm now 'down to' 7mgpd +/- and also walking the tightrope. Ho hum.. !

    MB :-)

  • Im on 8 but sadly can't drink due to the other c*ap I have to take for heart etc.

  • Thanks for sharing this story!

  • Such fools! It is a fact that NSAIDS should not be prescribed to people over 60! Even steroids are not as dangerous as NSAIDS! Well done for having the gumption to come off them.

    I wish I could offer more help to you but sadly I too am in the position of trying to help myself out of this mess.

    I wish you warmth and hope for a better future.

  • :-) Thank you, I wish the same for you :-)

  • Have you seen Admiral's post about a study where they used NSAIDs for about 9 months instead of pred? Glad they weren't my doctors!

  • Yes I have, and I agree with you, I think I got off lightly! :-)

  • Ha Mark, yes that red medicinal stuff is good so you must be in tune as well. :-)

    I'm off to Italy next week, they have some really good red stuff over there :-) :-) I' sure PMRpro can tell us about it! :-)

    Pete

  • My husband is going through an extended Lent currently (he had some less than desirable LFTs) so I am taking the opportunity to drink the sort of wine I really enjoy - I'd rather drink a lot less but have better wine.

    This morning I picked up a bottle of the local red at about double the usual price we pay (£5) and am really looking forward to it. The grape is called Vernatsch - it only comes from this area and unlike Gewurtztraminer which is also local, it hasn't got a passport ;-) It is very light by French standards, similar in many ways to the Franken reds from Germany. Early in my PMR/pred journey I found I could no longer drink my beloved reds - all too heavy. But this has been fine!

    We spent the last few days down in the wine growing region the other side of Bozen/Bolzano and I took a tour through the local wines courtesy of the restaurants next to the campsite (saves driving!)...

    I can recommend a holiday in this region if you like wine - you will find stuff you never dreamt existed in Italy! Francesco da Mosta is currently doing one of these series adverts for Trentino on UK TV - it is the next area down from us and like here is just as beautiful in summer as winter for skiing. :-)

  • Sounds good to me :-) keep doing I say :-) That's a great deal of information to digest, so Google to the ready and find Bolzano in South Tyrol, a lovely area not far from Venice really. That's our destination, Venice that is.

    Two glasses of red and I'm anybody's or so my wife says :-( :-) Just can't drink much anymore. Never did really :-)

  • That all sounds lovely PMRpro - just when I was thinking perhaps I'll NEVER be able to drink anything 'red' again (sigh) - I just need to visit Italy one day it seems .... :-)

  • Hi PMRpro

    Forgot to say thank you :-(

    perhaps I should put on a certain MarkB57 head gear :-(

    So thank you for that info and I have made a note of the wine information :-)

    and lucky me, TOH is interested in a holiday in the region you mentioned. :-) :-)

  • Lucky Pete, (Luke) to the slow food country where wine is prescribed daily 🥂. IHave a Good time! I want to Thank you all for the very helpfull answers. I slept on it and decided to follow all your advices, first Celtic I go on Tapering slowly, 1 Mg a month at the most, and I' write a letter to my gp and if that does not help I go on to nhg ."master" Mark, if I had only one percent of your humour I would invent a Joke for you, and Pmr pro, my gp added to his story while leaving the room "don't blame it on me if you experience a flare. " in Holland we say I can't make chocolate from that". And are we not all innocent storting this illnes proces? But better safe than sorry, better right than sorry. A big virtual hug for all of you, Aletta

  • O I wrote better safe than sorry, better fight than worry, but the auto corrector comes up with something completely different.

  • "my gp added to his story while leaving the room "don't blame it on me if you experience a flare. ""

    In other words - he realised he was being an idiot but wasn't going to admit anything in court...

  • :-) :-)

  • This doctor does not seem to understand that neither you not he have control over your body or this disease. It will run its course as it chooses. So either you will need to change your doctor's opinion (not likely) or see a rheumatologist, especially since they are the ones that should be treating you anyway.

  • Hi Amkoffee, Thanks for the reply. In Holland the protocol is, gp is taking care of you, as long as there are no comorbidities or complications. I'll write a resolute but respectfull letter to the gp, and if that won't make any difference I can make a complaint but in such cases it often means you loose while you win. Or I found a Skysuppliër to order Pred 5mg 180 for 55 euro, without prescription but how to be sure you get what you need? Have a Nice weekend, Aletta

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