Prednisolone Update & Questions

[Paulx222]

Morning all!

Thought I'd update on my Prednisolone journey......

Well, currently about to start day 3 of the treatment. Been asked to take 30mg for a week.....things have definitely improved for me.

Pre the steroids on Monday morning, I think I had my worst day ever.....pure agony, arms like twigs, shoulders searingly painful....which brought me to tears.

Started the course that morning and wake now after a good 6/7 hours with minimal shoulder pain and stiffness.

I still have range of movement pain though and I do still have hip stiffness.

My questions currently are.....

Will I see further improvements do we think or is this pretty much it now.....does it suggest I need a higher dose or should I just be more patient?

Should I be exercising to get strength back and push through the range of movement pain or is that damaging my shoulders?

Is there an optimum time to take my medication?

Should I take a PPI as I was with my NSAIDS?

Does this improvement suggest that my diagnosis is correct or should I still be wary of other conditions being the correct diagnosis?

Many thanks in advance, as always.

Paul x

[DorsetLady PMRGCAuk volunteer]

3 days is a short time (even though you will have read some get relief within hours) -so you need at least a week to notice a considerable improvement - maybe a lot longer. There are a couple of us on here who think patients should be on initial dose for 6 weeks.

Gentle exercise -but remembers muscles are less resilient and prone to injury.

Most usual time to take Pred is as early as you can -the sooner in the system the better your day Some do amend timings, but for first few weeks -stick to early morning to help you and doctors to gauge progress.

If you are already on PPIs -then steroids have a similar effect on stomach as NSAIDs -so maybe continue for time being… Many don’t need them, and if you decided you don’t in future then you need to come off them slowly. But probably best not to change too many things at once.

Pred is used as a diagnostic tool but it can mask other issues - but taken with your symptoms at the moment it does sound like PMR.

As I’ve said before, patience my friend… and keep a diary so you can discuss at next appointment. Give your body and mind time to adjust to what’s going on… you can’t always get the answers immediately..

[123-go]

Hi, Paul. Brief answers to your questions:

. Will I see further improvement? Yes. Be more patient. Give it time.

. Should I be exercising……? At present NO. Moving between rooms is probably sufficient exercise at the moment. You have to understand that over exerting your already inflamed muscles will cause further damage and longer healing time. Attempting to push through pain is extremely harmful and will prolong your PMR journey. The mantras are ‘rest, rest, rest’ and ‘listen to your body’.

. Optimum time to take medication: Most take their dose with breakfast around 7-9am.

. PPI: If you already have problems I would say yes. Personally have never needed and am careful to take Pred with food. Plain yoghurt is recommended.

. Improvement in symptoms: A 70% improvement in symptoms strongly suggests that you do have PMR.

There is a lot to learn about PMR and a wealth of information can be found in FAQs. While you’re resting searching this section will be advantageous.

**May I suggest that if you aren’t already a member of Healthunlocked PMRGCA you join so that you benefit from quarterly magazines, invitations to webinars hosted by some of our most respected rheumatologists, the chance to take part in research and more:

pmrgca.org.uk/information-a...

[PMRpro Ambassador]

Three days is VERY early days - and you have had quite a good response already. I had a minor miracle in 6 hours but there was still quite a lot left which over the following 3 months or so slowly dissipated. It depends where the inflammation is seated and what the blood flow is like. Some areas around joints have good vasculature, others have next to none - lots of blood vessels means the pred gets to the inflammation well, poor blood supply means it has to diffuse to the inflammation via the synovial fluid and that is why injections to the joint may work more quickly. I think my feet and hips took the longest to get back to more normal.

So no, I don't think you need more pred, just more patience! It is a big brick in the wall of evidence - but it isn't 100% certainty. Again - be patient, The next test is how well you are able to taper the dose down to nearer 10mg or so. If it isn't PMR, it tends to be harder at this level of dose.

Careful with exercise - no pumping iron!! Stretches and walking will do for now. Your muscles are in a delicate state - if you develop DOMS (delayed onset muscle soreness) it is likely to be in response to far less exercise than you expect, will be far worse than usual and take far longer than usual to resolve.

Optimum time to take pred is 2am which is a bit inconvenient and there is time to sort that out - as soon as you can after 4am is good, that is when the inflammatory substances are shed in the body and start creating inflammation. Soon after that means there is less inflammation for it to deal with. Then it depends on whether the pred effect lasts a full 24 hours for you - it doesn't for some so they do feel more in the early morning. Splitting the dose can make a big difference there but I wouldn't play with that at present - see how you are after 3 or 4 weeks.

I've never taken a PPI - but some people can't manage without. You definitely need it with NSAIDs, not necessarily with just pred.

But these replies all have a common thread - patience! If you don't learn anything else on this journey - you will learn that!!

[Paulx222 in reply to PMRpro]

Brill.

Got it. Patience.

Not what I'm good at, you may have noticed 😂

Thank you so much x

[PMRpro Ambassador in reply to Paulx222]

Were any of us?

[DorsetLady PMRGCAuk volunteer in reply to Paulx222]

As PMRpro says, who was -but you learn to be….

[Hidden]

Hi Paul...should you be exercising? What do your healthcare professionals say? Mine are OK with it...at least my GP and Rheumatologist are, I will ask my physio next week. If I am feeling strong I go for it. Last night I was ready to beg my doctor for steroids but this morning, after a tolerable night's sleep (helped by Paracetamol, NSAIDs and Codeine!), I was feeling OK so I hopped on my bike at first light and returned an hour later with a load (40 kg or so) of foraged firewood...I am just about to take the dog for a good long walk. Fresh air and exercise are my steroids...for the time being at least!

[PMRpro Ambassador in reply to Hidden]

There IS exercise and exercise!!!!!! Some exercise is very beneficial but that sort of heavy activity isn't to be recommended for many and most of us wouldn't be able to get on a bike without steroids, Some can't get out of bed or a chair unaided without steroids.

[mpartrid]

Hi PaulAs a fellow PMR sufferer in their 40's I will have been on pred for 2 years in January. I manage to stay active, walking works well for me and I get out pretty much every day. Neck and shoulder stretches also help.

Main feedback is not to rush, listen to your body and don't drop your dose if the symptoms are not improving. I found it difficult for a while to recognise when things were getting worse resulting in me dropping too quick and then needing to increase.

As a result I would definitely recommend you keep a diary, I use a simple notes app on my phone and write down what I do each day and pain levels in my hips, shoulders and neck in the morning and evening.

This may help you spot a flare or see the impact of any exercise you do.

Matt

[Paulx222 in reply to mpartrid]

Hi

Matt, thanks for this. I have started with a diary.

Paul

[sidra1968]

I also needed 30 mg..then flared months later at 25 mg (was fine on 27.5) and had to go up to 30 mg again, this time the Dr. said to stay for month..that seemed to work..now on 22.5 mg (which s good for me, right now), and waiting until after a trip next week to attempt to lower it. Give it some more time, in my opinion. Keep us updated.

[Paulx222 in reply to sidra1968]

Thanks Sidra x

[Hidden]

Have you had that shoulder X-rayed? My GP got quite jumpy when she put together my bloods and shoulder pain...she phoned me at 8pm and asked me to get an X-ray the next morning. Her X-ray request asked them to look for malignant lesions...they found nothing but apparently the shoulder blade can be where Prostate cancer secondaries show up. My PSA was normal but she wanted to be sure. My Rheumatologist also wanted me to have a chest X-ray before starting steroid treatment so that he would have a reference image in case the steroids caused problems down the line. Something to do with "being a man" but I didn't follow what the issue was...have you had a chest X-ray?