Yo-yo

[doubtfully]

Hello again,

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.

[PMRpro Ambassador]

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?

[Maisiek]

Hugs 😘

[Hidden]

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.

[SheffieldJane]

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.

[Blearyeyed]

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.

[Lonsdalelass in reply to Blearyeyed]

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....

[Blearyeyed in reply to Lonsdalelass]

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.

[nuigini]

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..

Good luck. Fell better soon.

[PMRCanada]

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.