I am back , ah well it was nice while it lasted. 3 years and I thought I had cracked it. I was on 2 mg of Pred, really nothing and although a bit sore and heavy limbed I was told that as I got fitter this too would go. Wrong. The more I ask of myself the worse it gets . Some days it just worsens for the fun of it! Anyway I went up to 4 mg but no improvement. I reluctantly phoned my GP . They want me to go in and get my ESR level checked by the nurse and then have a phone conversation with GP.
I declined. Great that gps are avoiding direct contact . Makes sense but I live in a rural area where the nurse deals with everyone and every thing. I don’t want to go anywhere near her environment just to get a number which may or may not be relevant to how I feel and what I need. Am I being unreasonable.? I have had diagnosis for both GCA and PMR and have a poor relationship with my GP and no option to change doctors because of location. Considering other ways of obtaining Pred.
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I don't know of any other ways to get pred - under the circumstances, would he not be willing to try a week at 15mg and see how you get on in the meantime?
I have no real advice apart from asking Dr to try a week of a higher dose. Even if you return to @ 5mg after that week to see if it works. I often wish there was a pred bank, but alas....good luck.
The conversation with the GP will authorise more Pred ( handled diplomatically) where on earth would you get more otherwise- the Internet could sell any old rubbish. Bite the bullet. It worked for me. They will deliver your meds if you are self isolating. 4 mgs has probably rendered the blood test useless anyway. Symptoms rule and you have relapse symptoms.
Unfortunately , no matter how bad your relationship is with your GP ( and believe me I know where you are coming from there ) the only way you can get the help you need in this situation is to jump through the hoops .
As you say it is hard to get a GP at the best of times and at the moment other options may not be available to you.
You could , as others have suggested request a trial of a dose for a week, but this would also require a conversation with your GP , unless you have the option of sending a letter or email to the surgery with your request. If they still require you to have the blood tests first though you may need , and want to do it.
Part of their decision not to trial you without tests or a discussion at the moment could well be that they don't want you to increase your steroids again if it is not absolutely necessary for you to do so , to try to help reduce your risks and not effect your immunity while the virus is around.
You're probably right there Blearyeyed. Although under the present circumstances they maybe OK with increasing the preds without a blood test, the less folk in the surgery the better. The last time I went to see my gp, which was early March, he kept his distance and didn't take bloods as he said they have always been in the normal range. Even though I said I wasn't at my best and felt some symptoms. Anyway, as PMRpro has always said, are they 'normal' for me? I do wonder....
I agree with you , unfortunately many Doctors are thinking along the lines of not just hoping the Pred at the moment and in this case such a big jump may cause issues in having a complete months supply of pred.
Agree with you that how you feel is more important that getting a number that may or may not confirm what you already know based on your own history.
Believe me I totally understand the "problem" doctor syndrome. I've had to defend my need to be at a certain level to obtain necessary prescriptions many times. However, it's the only was to get medication from a source you can trust.
Combined with the COVID-19 situation giving you plenty of justification for not leaving home, your history and current condition I would like to think you will be successful in getting what you need..
Sorry to hear of your increasing pain/symptoms emerging, especially after getting to such a low dose.
As others have mentioned, your GP, although perhaps not that helpful, holds the key to prescribing your pred. How much do you have on hand? Enough to try a “pred burst”? If so, you may want to try and extra 5mg and then do down one mg per day to original dose. (i.e. 7, 6, 5, 4, 3, 2).
I agree with you about not getting your bloodwork done. During a recent phone appointment with my GP, he said I could skip my monthly bloodwork this month (after he reviewed my last two results), and said if I did go to our local Life Labs location, pre-book for appointment very first thing in the morning. Apparently they disinfect and clean the premises at the end of each day (and throughout the day following protocols), and I would also avoid sitting in awaiting room potentially with others. I decided to skip it altogether.
Hope your feeling better soon and get some relief, and your prescription. Keep us updated.
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