Feeling Rubbish!

[Burroughs123]

Hello! I was diagnosed with PMR early March and started on 15mg Prednisolone which calmed the excruciating shoulder and arm pain I was experiencing. Since then I have tapered down to 9mg. I thought I was doing really well and had adopted the Keto diet which I believe helped with the tapering as I felt little if any pain during Pred reduction. Once at 9mg ( 2 weeks ago) I slowly began to feel rubbish. I was concerned that I was developing GCA symptoms - a few headaches, a bit of earache (bilateral), nausea so I spoke to my docs and was called in for an inflammation marker blood test a few days ago. They cam back completely normal. There seems to be a "witching hour" when I feel at my worst, which is late afternoon around 4-6pm. Once I have eaten I feel a little better but not fully. My head has not been in a great place and for someone who has never experienced depression or anxiety, I am now in constant stress and panic over my symptoms. When I discussed this with my doc she said it was understandable for newly diagnosed people to feel this way and she was happy that my bloods were normal. I am contacting the docs tomorrow for a prescription renewal. My question(s) is, should I stick at 9mg and not try to taper for another month or so?

[PMRpro Ambassador]

To get from 15mg in March to 9mg now is pretty fast and possibly means that you have overshot where you need to be at present. Have a look at this:

rcpe.ac.uk/sites/default/fi...

I think it reduces the rate of flares because it keeps patients at this sort of inbetween phase at a level that is enough to cover most eventualities. Do you know how your blood tests compare with pre-pred? Actual figures is more informative than "they're normal". There is a "normal range" which is the range of levels found in a large populations (10,000 is a usual number), not in one person. The range for ESR is 0 to 20, even 30 from some labs. If your normal is low single figures, 18 is very raised for you bit still "in normal range". And in some people the blood markers don;t go up again when they are on pred. No-one knows why - it is just so.

Had you been on pred longer and the dose was a bit lower I would wonder about adrenal function. But I wonder if you are doing more than your body can cope with - see the fatigue article in this link:

healthunlocked.com/pmrgcauk......

Try having a rest after lunch - rest before you hit the buffers. It often means you can last through the evening and get more useful time out of the day.

[DorsetLady PMRGCAuk volunteer]

Hi,

I would be inclined to go back up to 10mg which seems to be the last time everything was okay. If you’re quick enough you can probably stop your symptoms getting any worse.

Your blood may have been okay when last tested, but they do have a habit of lagging behind symptoms - which are the key for any action.

Provide things settle at 10mg then stay at that for another month before trying to reduce again.

As you were only diagnosed in March, your PMR is still in its early stages, and you are not reducing relentlessly to zero, but tapering to find the LOWEST dose that gives you as much relief as the initial 15mg did.

It might also be worth considering reducing by 0,5mg a month as well rather than 1mg - you are obviously in tge cusp of what is enough - and what isn’t.

Have a read if this as well - gives you an idea of what you may expect - healthunlocked.com/pmrgcauk...

If you get any more GCA type symptoms then you need to follow them up - irrespective of what your bloods may be.

[Burroughs123 in reply to DorsetLady]

Thank you - both of you. Since posting approximately an hour ago I have started to get a bit achey in my right shoulder. So yes, I am going to get back up to 10mg tomorrow and inform my doc that’s where I will be staying for a month or two. If necessary I will raise it further. You are right. I was being way too ambitious and in my rush to get below 10mg and feel less vulnerable in this pandemic situation, I stupidly thought I would push it. If the headaches and earaches do not clear within the next day or so then I will have a discussion re GCA and getting checked out for that. After a lifetime of feeling I was invincible, I am realising I am not. It is a truly sobering experience.

[DorsetLady PMRGCAuk volunteer in reply to Burroughs123]

No we’re not invincible - and it takes time and experience to be able to deal with our illnesses so don’t beat yourself up about it.

You will get through it, but maybe not as quickly as you’d like.....and it’s okay to feel rubbish- just not too often!

[sara44 in reply to Burroughs123]

I have found that I am very dose sensitive and there were some times where 0.5 was even too much and I had to go back to my old house just take it slow and easy

[SnazzyD]

I have a witching hour, 5pm. If I’m having a great day, I’ll need a cuppa and a sit. If I’m not, I can feel anything from a bag of new symptoms, to needing a nap, to feeling like I don’t care any more. If I’m ill this is the time when I feel I’m dying. It’s usually all gone by 6pm. I started with GCA in March 2017 and it is only in the last couple of months that I can go without a nap for about 2 weeks. These illnesses take it out of you, requiring you to let go and give your body what it needs. Right now, so early in the process you’re not going to feel great, so don’t worry that you’re not and rest. Give it time.

[Irishfurbaby]

Hi I was diagnosed with PMR in Nov 19 and started on 10mg twice a day-am and pm. Have got down to 3mg a day now but take a iburfen and paracetamol tablet as well because it is the start of winter down here and I feel it does help

Also use an electric blanket at night. Light walking and stretching really helps

Things get better slowly

You will get there

[Burroughs123]

Just spoken to another GP from our practice who agreed that going up to 10mg from 9mg is worthy of a shot for 4-6 weeks. She wasn’t overly concerned with the symptoms - headaches, earache, sometime uncomfortable wearing my glasses, finding bright sunlight uncomfortable. She was keen to point out that she didn’t want the steroids or PMR to mask anything else going on so to keep an eye on things. Regarding my inflammation markers - My CRP was less than 2 and ESR less than 5 on Friday. When I had my first flare in March my CRP was 60 and my ESR was 18. So let’s see how things go from here. Many thanks for listening and for your replies and wisdom. I have followed up your reading recommendations.

[PMRpro Ambassador in reply to Burroughs123]

You mention your glasses being uncomfortable - in what way? Can you not tolerate the sensation of the legs against the side of your head?

If so - do keep an eye on those symptoms and if you get ANY visual symptoms please go to A&E/ED for advice. They are all seen in GCA - they might not be, but please don't take the risk.

[Irishfurbaby in reply to Burroughs123]

Hi Burroughs123 - in regards to your eyes have them checked. I did and found thst I had very bad cataracts-?prem. Made them grow. Had them removed all good now

[Rokerman]

Hi There - I think you’ve come to appreciate that you’ve got into an overfast taper..... Just to put it into perspective, my initial dosage of 15mg was increased to 20mg after a couple of weeks and I began to taper from that point - that was FOUR years ago! I’m down to 0.75mg/day - it’s been a long haul but I have (to date..!) avoided any flares. It’s just not worth trying too rapid a taper and you need to take care not to overdo things along the way - very tempting to do so once the Pred has made life bearable again.

Best Wishes

[jinasc]

Did your medics tell you exactly what to watch out for in the case of GCA. If not, go to the pinned posts and read up on the Diagnosis and Treatment.

Also take a look at this:

link.springer.com/article/1...

It is quite possible your medics have not seen this yet.

March and it is 1 June and down to 9mg............way too fast and please do not get into a yo-yoing habit with pred. Look at the tapering plans in the Pinned Posts.