1stday

[Libertylane]

How was everyone’s first day of meds. I feel weird and don’t know what’s an affect and what’s anxiety. Just venting

[PMRpro Ambassador]

My first day of pred - after 5 years of unmanaged PMR - was a minor miracle: 6 hours after taking 15mg pf pred I got up and walked downstairs, made a cup of tea and walked back up normally, not crawling on hands and knees. Then I realised what I had achieved! I know a few others who had the same experience. But it doesn't happen to everyone and it may be different at higher doses for GCA.

I think feeling a bit strange is normal when starting any new medication. I know it is easy for me to say but to try to relax and go with the flow - over-analysing everything doesn't help.

[piglette]

My first day was like magic. After about fifteen and a half hours I felt that I was back in the land of the living having been totally incapacitated before diagnosis.

[Devoid]

I was shaky , overly alert and anxious, that was on 40 mg pred.

[Libertylane in reply to Devoid]

Did those things go away?

[Devoid in reply to Libertylane]

Yes once the dose was reduced, I also found it helps taking it in the early hours when at first I was taking it at 9 a.m and feeling shaky and odd until mid afternoon. The anxiety I think is a combination of the medication and the diagnosis, I was also very tearful for a time and then that passed

[Blearyeyed in reply to Devoid]

Great advice , I take mine earlier then go back to bed . The first few days or even week do bring both the unusual feelings from the steroids and some anxiety so it's a bit off both.

[Hidden]

It can be quite overwhelming especially if you’re feeling anxious about taking them, l can still see those three little pills in my hand & wondered what was going to happen.....

I think as l was so unwell, the effect was only marginal but on the third day it was like a Miracle.........

Try to relax if you can & keep in touch 🍀

[Libertylane]

I need to take 60 and that’s a lot. Freaking out. Start worrying about heart, blood sugar, thyroid,cholesterol, blood pressure since I have tendencies towards them. I wish I could take a smaller dose. It is so hard for doctors to tell if you have GCA or not. See what happens tomorrow at my first appt

[Whitner in reply to Libertylane]

Hi liberty lane! I started at 20 mg and was amazed to see my symptoms go away! I hope you have the same experience. Remember that you won’t be on 60 mg for very long. Try to focus right now on the positive effects of the prednisone.

[HeronNS]

I never had to take the very high dose. But if that ever happens to me I will plan to find something to distract me from my fears. Watching Netflix, maybe. As I won't know how I will feel no point planninng anything physically demanding, but maybe a long walk if I'm able, with a kind companion.

On 15 mg I felt very much myself, although after a few hours I thought surely the medication isn't working already as the pain was easing, which I didn't expect. By the third morning I felt better than I had for years.

[SnazzyD]

I wouldn’t over think it as one of the effects is anxiety so it is a bit of an unfathomable soup right now. You will pop out the other side but for now muddle through knowing this isn’t really you. I had 60mg and I’m only little but I was ok. I think it feels like it’s doing more harm than than it is at this level because ones head is doing overtime.

[Blearyeyed]

Left a reply for Devoid with extra words which is for you too if you want a look . Glad you came to the decision to try the medication , rest as much as you can and come back and vent or ask questions big or small whenever you need. We are always here to support you , but especially so in these early days when things are new and unknown. You aren't alone , take care and keep posting xxx

[enan-illuc]

My first dose of Prednisone was 60mg and it had an immediate positive effect. I could move better, less pain, and the vision in my left eye came back. I was very lucky my eye Doctor knew what it was. It is scary but it works!

[SheffieldJane]

The lifting of grim symptoms that had gone on and on was amazing. I felt high for 6 weeks. I may have found GCA doses a tad more challenging though.

[Daffodilia]

I was temperamental on 40 mg but effect on pain and stiffness was like a miracle

[Noosat]

Wasn't going to mention it, as could be a "downer." Over holidays legs started to hurt, not just discomfit. Tried to ignore it. However started to have other nasty things happening and realized the small gastric ulcer was starting to want attention. So I have had a couple of miserable days. Yesterday morning took my usual 5mg of prednisone and another 2mg before I went to bed. I do feel better this morning. The ulcer can be self healing as long as I pay attention to what I eat and drink. The prednisone can be a nasty culprit, so I do need to take as little as possible. Life could be worse, so I just soldier on. Right now listening to Etta James disc while I am at the computer. My daughter will call soon and I will tell her, "I am just fine." Hope all is well with all going into this new year.

[Noosat]

Sorry my first post did not pertain to your problem. When I started 40mg for three days, I felt no pain, but did feel "spacy" then dropped to 20mg and gradually felt normal as I progressed in going down, so don't despair.

[DianeA1]

Early on I learned from this site to take my pred dose at 2am which has helped for two reasons: first, it is available to my body for the 4am release of cytokines; and second, I can sleep through some of its other effects. Now, this may not be for everyone, but I am a very good sleeper.

Dx'd 1/2018 started on 15 mgs, (DL's taper plan) am at 1.75

All the best