Confused again

[Blackcatlover]

Just thought I’d give an update on my pain and tiredness after tapering my prednisone to 4.5. Before this forum I would have panicked and just upped the prednisone. I received great advice from everyone here. I relaxed and gave it some time. Just got bloodwork back and Sed is 2 and CRP is .8 I never even knew about the adrenal part of this disease. Thank you for helping me get through this new stage.❤️

[DorsetLady PMRGCAuk volunteer]

No - that another thing the docs don’t tell you about.

The best way to get them going again is to reduce very slowly- and patience!

Obviously if you get any signs of Adrenal issues - nausea, lightheadedness, extreme fatigue then you do need to follow up with GP

Good luck.

[Blackcatlover in reply to DorsetLady]

Thanks! I see him next week.

[piglette in reply to DorsetLady]

I wish my GP would listen. I said I thought I had adrenal problems and I had fainted a couple of times. I don’t think he even heard me. My CRP was 88 and he said that was normal for me. We now have to go to hospital to get our blood tests done not the local surgery. The average wait is one and three quarter hours or longer. I have decided it is a total waste of time having blood tests as they are ignored. I have noticed our senior GP has set up a very posh website advertising her private GP practice!!

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Not much to ask for is it - to be listened to!

Perhaps if you paid, it would happen, but why should we, having paid our taxes all our working lives.

I don’t object to paying tax once, but when I have to pay tax on small occupational pension - it’s a bit OTT.

[PMRpro Ambassador in reply to DorsetLady]

I think that is the secret of the alternative practitioners - they may charge but they also listen very well.

[piglette in reply to DorsetLady]

In fact they tend to force people to go private, perhaps to the head GP’s private practice! Otherwise tough take an aspirin or put a bandage on it.

[Meggsy]

Has your pain gone?

[Blackcatlover in reply to Meggsy]

Pain decreases a little more each day. Headache is now on the mild side too. Still very tired. Hope it continues to subside.

[HeronNS in reply to Blackcatlover]

It takes time. Today I took zero pred - first day on a taper from .5 to (I hope) zero. I was busy, in the sense that for a solid five hours I was chatting with people in a couple of different situations. As I sat down for supper I realized I was completely exhausted! I've been at doses below 5 mg since about 10 months into my pred journey, that would have been a little under 4 years ago. And even so I still have moments like this, much less often than I used to, when I am completely flat! As for the withdrawal niggles, even using DSNS taper method they were pretty much with me throughout. I knew I was okay with the taper when the second half of the month (or, later, six weeks) was better than the beginning. It really is a slow process. But we will get there.....

[Meggsy in reply to HeronNS]

Oh I do hope this means a final farewell to pred for you. Take care and fingers crossed 🤞 🌻🌻

[Blackcatlover in reply to Meggsy]

Thanks Meggsy. Your encouragement really helps.❤️

[Blackcatlover in reply to HeronNS]

Thank you HeronNS for the encouragement. Went food shopping this morning and now have nothing left. I know I can get there. So happy for you.

[Hidden in reply to HeronNS]

Fingers crossed 👍🍀

[Meggsy in reply to Blackcatlover]

Here’s hoping! 🌻

[Blackcatlover]

Thanks DadCue. It’s hard but all part of the journey.

[Hidden in reply to Blackcatlover]

It is good to keep a diary so you have some record of how each dose effects you as you taper and what are flare signs for you. Unfortunately these can shift but it at least gives you a fighting chance and confidence in your understanding of how your body reacts. It does not have to be a novel... And if you have the ability to use excel or another spreadsheet you can label symptoms and plug in a search function. I used to be able to do such things, but limited to pen and paper now! 🌻

[Blackcatlover in reply to Hidden]

I bought a journal and I’m now keeping a daily account of how I feel and symptoms. Thank you for the good advice.