Too little Pred?

[Hwle]

hello all- new here and am still working to understand PMR. I have a ton of blood tests done and my father has RA. I just turned 50 and am a very active, flexible former gymnast. I work out 6 times a week and have done Pilates and/or yoga and elliptical daily. My symptoms came on quickly about 6 weeks ago and I thought that I had just overdone my workouts. It began in my hips and felt like I was just over stretching.

I took a break from my workouts thinking that would help. The pain and stiffness starting spreading to my shoulders, neck, thighs. Almost excruciating and difficult to even roll over in bed or get up. I made an apt to see my GP and after running lots of tests for RA, lupus, thyroid, celiac and lymes, all were negative. The pain did not improve so I cut out gluten - still nothing. She advised aleve and Tylenol layering them. I kept asking for something to help and she prescribed 40 mg of pred. I felt better right away! Was only on it for 3 days before seeing the rheumatologist.

In the meantime I scheduled an apt with a rheumatologist and had an apt. She said the pred amount I was on was way too high so she ordered more tests (she said certain markers were not tested) and reduced my pred to 20. I still felt ok but dreaded going off of the pred in a few days. Within the last day of not taking pred (she said I needed to be off to do the testing for two weeks) I was so fearful because the pain was unbearable! I called her after 3 days of suffering and she told me to go ahead and get the blood work as it seemed I would have enough information for her to see my results and started me on 10 mg. I took it right away at 2pm and then again at 8am and felt like a champ. But now looking back it’s probably because I basically doubled it up…

But it was short lived….the pain was back! Taking at 8am made it so hard to walk and it took about 5 hrs to feel better. So now, I take my pred at 2am so that within 5-6 hours I can get up to walk. The pain is still so high ant 2am and I’m not feeling a ton of relief until about 7 hrs after taking the pred. I try to take Tylenol arthritis but it doesn’t seem to help all that much. The dr said not to take aleve. I literally lay as still as possible at night on my back (I’m a side sleeper) so that I don’t have pain.

My CRP was 201 and my CK was very low. All of the other tests were normal and my esr taken weeks back was also normal and RA was negative. I called into the dr last week and another Dr called back saying that 10 mg is a good place to start but after reading all of your amazing information here it seems it’s too low. I feel like I should have more relief than I am having. The dr just said yes that seems like it’s PMR but we have you on the right dose. It seems they are just trying this to see if they can confirm diagnosis. I decided to do the 2am dose on my own after reading about spring here.

I have an apt next week with my dr, but I put in another call yesterday just to see if there is anything else they suggest. I am still able to get my walks in and some light yoga but the pain is pretty intense. I certainly don’t feel the relief I used to when I am doing the workouts pre PMR.

I have also added in sea moss gel, tart cherry juice and pineapple juice to my diet as I have read they are good anti inflammatory. Any help or thoughts do would be so helpful. I am in the US.

Thanks for this site I find it so helpful!!

[PMRpro Ambassador]

Hi and welcome!

To be fair - I think you need a doctor with the courage of their convictions who can read!!!! There are quite clear recommendations in the 2015 document about starting dose: the lowest effective dose in the range 12.5-25mg/day. Your status makes it abundantly clear that 10mg doesn't fulfil that! 40mg was unnecessarily high - but that is immaterial, she could reduce the dose to 20mg without a penalty and work from there.

They are prevaricating a bit - 10mg is not an adequate dose and ordinary painkillers, even NSAIDs, almost never have any effect in PMR, so much so that it is almost a criterion suggesting it is PMR rather than inflammatory arthritis where it can work. Not even Aleve/naproxen achieves relief so no idea why that was mentioned. Tylenol/paracetamol is useless.

I wouldn't waste your money on all those supplements - I don't think anyone has found they help with PMR. Pred is the mainstay of management of PMR pain - not even much in the way of other medication although Kevzara is now approved in the USA and does work - at a price. Actemra/tocilizumab works too but technically isn't approved for PMR, just GCA.

Have you found the FAQs? Lots of background info for you there.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Maybe have a look through this link - from the FAQs as suggested by PMR pro - it might give you better idea of what to expect - and unfortunately PMR is not respecter of what you did in previous life… as many on here have discovered…

healthunlocked.com/pmrgcauk...

[Hwle in reply to DorsetLady]

Thank you for the responses. I have read this link and it was so helpful! I do like that the doctor responds to my calls and I’ve only seen her once so I am not sure if they are just being conservative and hoping that 10mg would be enough but I keep trying to let them know that it’s just not enough. I hope I can get a call back today. I really felt like the Tylenol wasn’t helping so I had a feeling it was PMR as I’ve read on this site so many people who say the same.

Im just hoping for some relief soon so that I can enjoy my days. Its really tough to be in pain all day.

Thanks again! I will keep you posted if I hear back from the doctor.

[DorsetLady PMRGCAuk volunteer in reply to Hwle]

As PMRpro has said they went from one extreme to the other - which I obviously didn’t help you at all. The starting range quoted in guidelines is from 12.5mg to 25mg … but from reading on here over the years, many doctors in the US do seem to have their own views.. not sure why.

Good that you have a response doctor re communication, but please impress up them, that 10mg is not helping - and more [but not too much] is required.

Please let us know how you get on…

[sidra1968]

Hello and welcome! Keep reading this site, the information here is priceless. You can learn things from almost every post. The pros here know more than the doctors, in my opinion.

10 mg is very likely too low, it took 30 mg for me to feel better..just on 15 mg now 1.4 years later. Please keep us informed.

[Hwle]

Quick update. I spoke to the doctor and she has upped me to 30 mg each day until I see her on Tuesday. She said they started the low dose to see if I would have any side effects before increasing and given my inflammation, she feels it’s appropriate to go ahead and up the dose to get rid of it. Thank god! So I will take one 10mg at breakfast and 20mg at lunch until I see her on Tuesday. She said that given my inflammation this dose is not uncommon so it should help! Just too my 20 mg about 30 min ago and hoping for some relief. I’d be lying if I said I wasn’t worried about the terrible side effects I keep reading about but I think I’ll take less pain right now so I can get my life back!

[DorsetLady PMRGCAuk volunteer in reply to Hwle]

Okay... let's hope it works for you.. and you can quickly get to a more measured dose that controls things...

[PMRpro Ambassador in reply to Hwle]

Put it this way - I have been on pred for 15 years and I can honestly say that any possibly pred side effects also happened with untreated PMR which I had had for 5 years! I gained weight with PMR due to inactivity and comfort eating - when I started pred I didn't gain any more weight, it just rearranged itself! I did gain weight on methyl pred - but went back to prednisone and lost 35lbs over 18 months on a low carb diet. I have no sign of diabetes - low carb helps that - and my bone density hasn't changed significantly. Most pred effects can be avoided or mitigated when you know how.

[piglette]

It does annoy me when you have doctors dishing out such drivel. A child at junior school could do better.

[Hwle]

do you feel

That 1 (10 mg) at breakfast and 2 at lunch seems like a good plan? My mornings are usually the worst. However today once I took the 2 additional pills. I feel so good!!! Just worrying about tomorrow am. She said I don’t need to get up at 2am. Just to take it with breakfast at 6:30am.

[DorsetLady PMRGCAuk volunteer in reply to Hwle]

At 30mg the dose should last a full 24 hours -so at least tomorrow should be okay-you’ll just have to see how it pans out over the coming days…

[PMRpro Ambassador in reply to Hwle]

Except if the antiinflammatory effect of pred isn't lasting until the morning shedding of the inflammatory substances at 4-4.30, you will have the pain and stiffness until it works because sometimes even 30mg might not last the entire time - the effect lasts for 12-36 hours depending on the person. The 2am dosing is the ideal time to minimise morning effects - established in a study albeit in RA but the principle is the same. However - splitting the dose can be used to extend the effect if it turns out to be necessary - but try with a single dose first.

There isn't a lot of logic in her starting at 10mg in case you had side effects - they are almost always dose related and far less likely at 10 than 30,

[Hwle]

And another question I now have is 30mg too high? Dr. Said she wanted to knock the inflammation out over the next 6 days so maybe she is going to reduce it to a better number when I see her on Tuesday? Seems like 15mg is the standard start…?

[DorsetLady PMRGCAuk volunteer in reply to Hwle]

30mg is slightly high for PMR but some do require that much -and hopefully she will drop it at next appointment. 15mg is a more normal start.. but it doesn’t always work which is why there’s a range -as already mentioned.

Hopefully she’ll drop you to 20mg.

[Bcol in reply to Hwle]

Hi, when I started this journey, a temp doctor started me on 15mg but after a couple of days my own doctor/surgery upped me to 30mg for a week, then 25mg for a week and then 20mg from which I have tapererd down using one of DL's tapers. More info in FAQ's. I also take all my Pred in one go around 02:00/02:30ish, with some yogurt, which has lasted for twenty four hours and worked very well for me.

Regarding the side effects please remember they are only "possible" side effects you may get some or you may get none. Many you might get can be mitigated with a change in life style and/or diet. I have been four years and, as far as I know, not had any side effects at all.

[Fatsiajaponica]

Hi,

Well you are going through it! I'm a newbie so don't give advice but hope that you get on the right dose asap and feel better physically and emotionally. As others have said, this forum is invaluable for sensible advice from experienced members. Take care.

[Hwle]

thank you! So helpful! Feeling good right now! We’ll see what overnight brings! First time that I’m mostly pain free in at least two weeks!!!

[Sophiestree in reply to Hwle]

Glad your doctor has now listened to you. Nothing to add to everyone else other than don't forget the low carb diet and rest more. I have learnt if I do something then I need to rest before tackling the next thing... pacing is vital.

[Hwle]

Good morning! I hope I am putting these updates in he right spot! I can never tell if if I should reply to someone specifically or reply to myself!? Anyway, I made it through the night. Honestly I have some PTSD when going to bed because the pain in the past has been excruciating! But I am happy to say I woke up at around 4am and felt a slight bit of pain so I decided to go ahead and take the first dose with my applesauce and at 7am, I now feel so great! I feel like I will be able to do my morning walk and be almost 100% pain free.

I have started a low carb diet and I am hopeful that I will be a lucky one with not having many side effects from pred. I do know that the pain I was feeling was making me miserable so I’d rather not be miserable and will take the side effects if they come. Pain is something I never have had to live with so I feel for everyone who is in pain.

Thank you all so much for this site. It has really helped me so much and I am not one to ever post on such a platform, but your posts were so helpful and welcoming that I wanted to give it a try. I can tell I will need some support on this journey and now I have some virtual friends who I can lean on.

Finally looking forward to my mornings again!

[PMRpro Ambassador in reply to Hwle]

Always here!!! And that is exactly WHY we are always here!

I have said a few times that some people who get totally hung up on pred effects obviously didn't have bad enough PMR symptoms! There ARE a few really nasty effects but they are very rare. Most can be avoided or mitigate and improve as the dose goes down. Not being in pain 24/7 compensates for a lot of things!!

[DorsetLady PMRGCAuk volunteer in reply to Hwle]

Probably easiest to reply to yourself - unless you want to reply to a specific response to another member.

PMRpro and I read every responses... others might follow your post so will be notified..