Still got pain at 20mg pred

[Rosiecavapoo]

Hello everyone

I hope you are all having a restful bank holiday. Can I call on your wise advice?

I was diagnosed in July with PMR. Started a 15mg dose. Then I posted on here because I was still in a lot of pain. Your advice was I probably need 20mg. I spoke with my GP who agreed plus a blood test showed my ESR was higher than at diagnosis , in the 70’s.

GP said to stay on 20mg until I see my Rheumatologist on 4th Sept.

Some days it feels that this higher dose is working better. But some days not at all. I had real trouble getting out of bed this morning with pain and stiffness.

I do believe this PMR started way back in January and just got so bad I couldn’t bear it any longer which is when I contacted the GP in July.

So it would make sense that perhaps the inflammation has built up over the months and it’s proving harder to manage, do you think?

I’m worried what the Rheumatologist will say. Will she be happy to increase my dose? To what dose? Or, and this is my main fear, might she say it’s not PMR. I cannot cope without pred. She wouldn’t take it away would she?

Sorry, getting myself stressed about it and I shouldn’t.

I would appreciate your views

Thank you.

[PMRpro Ambassador]

No point worrying about something that hasn't happened! You have SOMETHING and if they think it isn't PMR - they need to identify WHAT it is.

It sounds as if 20mg is barely enough - or you are still trying to do too much. Do the bad days folllow better days where you then tried to do too much? Or eating particular things, or the weather. Try keeping a diary with all those sort of things and see if there is a relationship.

[Rosiecavapoo in reply to PMRpro]

Thank you PMRPro, I will do that.

[Charlie1boy]

I had a similar start to you. Initially, GP prescribed 20mg, but, after three or four days, thought it should be 25mg, then said no, we needed to clear out the accumulated inflammation, let’s go for 30mg.

Even then it took some three weeks to reach a state where I could taper, and I reduced to 25mg for two weeks, then to 20mg, so, back where I started.

That worked for me, but it was the GP, who made these decisions. We all have different reactions. Pred had no instant success, but it has worked fine in the longer term.

Good luck.

[Sharitone]

I shouldn't worry about that. Lots of us have had to go to 25mg (or even more) at the start.

[Rosiecavapoo]

Thank you so much you have put my mind at rest.

[Pawscat11]

After being undiagnosed PMR for 3 years my consultant gave me an injection of 60mg and then 5 days at 30 before a taper to 25 then 20 and then 15. 4 years later I am still on 12.5 with what she calls complex PMR.

[Zebedee44]

I’m guessing your starting dose of 15 mg didn’t clear out the inflammation that had accumulated before diagnosis and you would have been better with at least 25mg . My own GP actually started me on 50mg for three days, then 25mg for ten days, then 20mg for three weeks then taper. He didn’t seem to have much of a clue but the high dose gave me back my mobility after months of pain and stiffness. Of course I overdid it as soon as I felt better and it has taken me years to find an effective dose that manages the PMR.

Try not to worry because worry makes it all feel worse. Hopefully your Rheumatologist will know what she is talking about and help you onto the right path to recovery. But of course you must also do your bit in managing the condition which for each of us is a slightly different experience. Best wishes, Chrissie

[Rosiecavapoo in reply to Zebedee44]

Thank you Christie and Pawscat. You are both absolutely right. I did start with a 15mg dose. It wasn’t enough neither is 20mg.

I’ve only been diagnosed 6/7 weeks so still trying to work out what ‘over doing it’ means for me.

I’ve also entered the gaining weight territory which is annoying. It’s so hard to lose weight without battling the weight distribution gift that steroids brings.

It’s a lot isn’t it. Trying to find what works for you plus trying to be on the correct dose of pred for you.

Big sigh, onwards and upwards I guess.

[Sophiestree in reply to Rosiecavapoo]

Try cutting out carbs - potatoes, bread, rice and pasta. There's loads of links on here. It's made a huge difference to me and was the first thing I did as I have had an underactive thyroid since my 20s and did not want to go back to that feeling.

I also have cut out sugar and salt. Sounds boring but there are ways to get a sweet hit if you need one. My latest is cottage cheese pancakes and cottage cheese ice cream!!!!

[Rosiecavapoo in reply to Sophiestree]

Thank you. Crikes I love carbs too!

[Sophiestree in reply to Rosiecavapoo]

You will get used to it, trust me, very tough at first, if nothing else for the convenience, but I am coming up to 3 years now and it's part of how I think. It will be interesting to see if I go back to carbs when I finally (???) get off the pred. But I'm a fair way off that at the moment, so this is how it is.

[Rosiecavapoo in reply to Sophiestree]

Yes, I’m at the research stage. Doing lots of reading and got a fab recipe book. It is a massive change so I need to get my head around it first of how I’m going to incorporate it into my diet.

I’m sure you won’t have a problem when off pred as it sounds like it’s your normal diet now.

[LIVEORDIEHEREIAM in reply to Sophiestree]

Good point, Sophiestree! I was eating too many carbs all along and suffering the consequences. The day I got inspired to go low carb, it was almost as dramatic a change as when I started the pred! Huge difference the very next day!

[Rosiecavapoo in reply to LIVEORDIEHEREIAM]

That’s it you have inspired me Live. Thank you

[PMRpro Ambassador in reply to Rosiecavapoo]

Cut your carbs - I have struggled with weight loss all my life and most of my weight gain was due to inactivity with untreated PMR. It redistributed with prednisolone but I didn't gain a lot until I was switched to methyl prednisolone and then it piled on. I was switched back to prednisone (other horrid adverse effects with the methyl pred) and went on a low carb diet, I lost 35lb over the following year and a bit.

How much you need to cut varies from person t person but some manage just by removing the processed carbs and added sugar. And after this week's dietary bombshell about processed and ultraprocessed foods - so much better for your health in general.

[Zebedee44]

Hi, me again, just to mention splitting the dose was hugely effective for me. Never a fan of an early morning dose but needing to be able to get out of bed in the morning I took 1/3 of my daily dose at bedtime and the rest first thing in the morning. It worked extremely well for me. Are you still splitting the dose?

[Rosiecavapoo in reply to Zebedee44]

I did take 1/3 of a dose in between 2-4am. Worked sometimes but not all the time. Gone back to full dose in the morning.

I think I just need a higher and the right dose to battle the built up inflammation.

I’m happy to try splitting the dose

[Zebedee44 in reply to Rosiecavapoo]

If you are waking up for the 2-4 am slot probably best to take the whole dose at that time and really bash the inflammation on its head before it gets a hold. You should eat something with the pred if you do that, yoghurt or banana or something. To avoid that scenario I found it easier to take the smaller dose before bedtime and the larger amount when I woke up.

I fully expected to gain weight and soon developed a rounder face, but six years down the line I am only a few pounds heavier than I was, so weight gain isn’t an inevitable consequence. Maybe you are doing a bit of comfort eating at the moment. I know I was pretty forlorn when I was diagnosed. It gets better, especially with the gang on this forum. 😀

[Rosiecavapoo in reply to Zebedee44]

Oh this forum is incredible.

Yes to comfort eating. My own worst enemy ha! It seems a huge mountain to climb to get everything right. I’m just going to have a word with myself, calm down and try small changes with small steps to make life more comfortable

[Zebedee44]

Do keep posting on here, there is genuine kindness and caring here as well as information and support. These people know what you are going through better than most doctors and rheumatologists.

[Rosiecavapoo in reply to Zebedee44]

Totally agreed. Learnt so much. Trust the information I’m learning. And yes, you all know what we are going through. Which some doctors do not.

[sidra1968]

Sounds like what I went through..my ESR also went a bit higher even on 20 mg so my GP upped it to 30 mg and it's like a miracle. I am at 90% + or even better most days. Thank God my GP has been great. I start tapering next week - he told me to stay on it 2 full months this time because it all came back at 25 mg-I was good on 27.5 mg actually before my first taper effort.

Maybe ask to try 22 mg or 25 mg..we are all different. I did see others in past posts and in my online research who needed 30 mg or even 35 mg..and it seemed to me it was us "younger" ones, but that is just my own theory.

[PMRpro Ambassador in reply to sidra1968]

I agree that younger patients are often harder to get things under control and/or keep things there. I had a miracle in 6 hours with 15mg pred but I have always struggled to reduce the dose under 10mg apart from one period of a year or so prior to a massive flare in disease activity. The last such flare sent me up to well above 15mg and only Actemra has allowed me to get to 5mg for the first time for years. I've also had PMR symptoms for 18 years! The first 5 years I was neither diagnosed nor treated with anything - and that is the other trend I notice: those, often relatively young, patients go on to to have protracted journeys and struggles with reducing pred.