Yo-yoing with prednisolone

[lkcreedon]

I hate the very idea of yoyoing with steroids but I in a place now where I don't know what's right and what's not!I posted about a month ago on tapering from 8mg to 7.5mg Pred. I had a flare so as per advice I did up by 5mg for 10/11 days and dropped back to my last comfortable place which was 8mg. So I continued on 8mg for about 3 weeks. Unfortunately I now have a little indication that PMR is hanging around again, not bad but a little. What is more debilitating is that my OA, which I have in a number of places has gotten worse in my left knee. I have a bakers cyst behind my left knee which is causing a lot of stiffness anyway but now it's very stiff and achy and I find it hard to walk even a little bit!

Tried ringing the doctor on Friday but went onto an answer machine with no option to leave a message, very helpful I know 🙄. I have an appt for bloods on 14th Nov and an appt with the Rheumatologist towards end Nov. I'm going to look for a cancellation with the rheumatologist in the meantime. My question is...is the inflammation for the one and OA connected? If I was to increase the pred by a few mgs would it assist my OA. I don't really know how to proceed correctly. Feels like dropping in Pred makes my OA worse ?

Can someone please advice?

Doctor doesn't really want to get involved in the medication the Rhumatoligist has prescribed for me and I guess that's ok but I need some help now. If I get a cancellation with the Rheumatologist that will be great. Just hope she won't want to put me on methotrexate again as I felt it didn't help last time at all or was I too quick to come off it? I was in it for 5 months with nothing at all 🤔.

Thanks in advance. Hope I didn't complicate by my description of my situation 🤗

[PMRpro Ambassador]

Pred can often help with OA pain but doctors are very unwilling to use it, preferring to rely on painkillers (that often don't work). Your situation is complicated by the Baker's cyst so it could be either or all of the options. If it were me I would try a bit more pred again which would also give a bit more evidence as to which is the main problem.

There does seem to be some evidence that the disease activity of PMR cycles, rising and falling in intensity over time. You may be able to get a bit lower on pred when it is quiescent and then it ramps up again. And other things sometime seem to "feed" it.

It MTX hadn't done anything in 5 months, it was unlikely to do so.

[lkcreedon in reply to PMRpro]

Tnx PMPro. I will try more Pred today. Was thinking of upping to 10mg from 8mg for a while. Would this be sufficient do you think?Terrible again this am. Knee stiffness poor and some shoulder aches 🙄

[PMRpro Ambassador in reply to lkcreedon]

Difficult to say - try it and see.

[lkcreedon in reply to PMRpro]

Yes thanks I will do just that and take it from there.Even just being able to communicate with the people on this site is a great help.

Thank you 🤗

[PMRpro Ambassador in reply to lkcreedon]

It's why we are here!!

[123-go]

No problem with writing down all your concerns. It’s good to get things off your chest and sometimes it can make things clearer in your own mind. You have the right to refuse any medication if you feel it isn’t working for you and to ask if there’s an alternative if you want to try something else. However, I agree with PMRpro’s comment on increasing your pred dose a little. Good luck!

[lkcreedon in reply to 123-go]

Thanks so much 123-go. I'm going to up the Pred from 8mg to 10mg. Is this ok do you think?Appreciate your response 🤗

[123-go in reply to lkcreedon]

As PMRpro said, it’s hard to say but do try going up to 10mg . Also try some VERY gentle exercise. Have a look here:

oxfordhealth.nhs.uk/wp-cont....

You can simplify most exercises to suit yourself and the feeling you get from trying is a positive one. Very best wishes.🌸

[lkcreedon in reply to 123-go]

Tnx 123-go . I was doing exercises along along but spent a lot of time in my feet in the last few days decorating for Halloween ( my creative side) 😏. So I guess I flared, shoulders and bakers cyst. Could not walk today. Improving very slightly now after a lot of rest time. Tnx for your response 🙏

[Gaz227]

MTX injections control my arthritis issues really well , in hind sight I would have used more pain killers rather than an extra couple of mg’s of pred, who knows I may have got off pred with a couple of years discomfort, as it stands now I’m stuck on pred for life due to adrenal inefficiency , but on a more positive note it all comes down to quality of life, , I can do just about the same as anyone and certainly a lot more than an average 64 year old . Good luck and don’t live in pain it will age you quicker than PMR or arthritis.

[lkcreedon in reply to Gaz227]

Thanks Gaz227. I agree wholeheartedly that the quality of life is more important. I have had a rotten few days so it's time to do something about it now. I will up the Pred from 8mg to 10mg today for a bit. I do think that I'm having trouble dropping below 8mg. If ye think I shud up by more , please let me know. Thanks so much 🙏

[Gaz227 in reply to lkcreedon]

You want to find the minimum dose that controls your pain and symptoms . I’m on 4.5mg , I could easily just take a 5mg tablet but I know I can be pain free and not stiffen up at 4.5 so that’s where I stay . I’m seeing an endocrinologist a couple of days before Christmas to see if anything can be done with my adrenal function but have been told by the Rheumy it’s most likely I will be on pred for life . Just a matter of staying positive and living every day the best you can . 👍🙏

[Gaz227 in reply to Gaz227]

Meant to say also as soon as you get control back , try and get back to your regular dose and stay there till the Rheumy advises different , I have self medicated my dosage for a good 7 years now , I think after that long you know your body better than the Rheumy or GP 👍

[lkcreedon in reply to Gaz227]

4.5mg doesn't seem too bad. Anything below 5mg is acceptable Id say. The adrenal insufficiency seems to be a difficult thing to get sorted. I have a friend who is on 5mg and has adrenal insufficiency and was told she cannot give up the Pred and may never be able to do so. She is very upset by this. She has Lupus. You have a great attitude to it all and yes staying positive is crucial. Generally I'm good in that regard. Just the last few days particularly yesterday and this morning I'm upset. I will do something now that I like and that may help.

Hoping the 2 mg extra Pred will make a difference 🙏🙏.

Tnx again Gaz227

[PMRpro Ambassador in reply to lkcreedon]

If testing is done at 5mg you can say NOTHING about adrenal function - 5mg is loads to suppress cortisol production. SnazzyD apparently had no adrenal function then, still poor at 3,5mg but better at 1,5mg pred if I remember rightly. The only way to get it back is to taper VERY slowly and put up with overwhelming fatigue as long as it takes. And it CAN take a couple of years. But until you have tried that - no-one can predict whether it will come back or not.

[lkcreedon in reply to PMRpro]

I'm a long way off 5mg right now but will keep all of that in mind. Very valuable information. Thanks for your response 🙏

[misspops in reply to PMRpro]

Thank you. you are so wise and generous.

[Gaz227 in reply to lkcreedon]

I’ve got it in my head that 4.5 mg is a good result for now . There are a lot worse off people out there , and I can still do my sports etc . I just hope the endocrinologist doesn’t upset the apple cart so to speak when I see him in December . Good luck again 👍🤞

[lkcreedon in reply to Gaz227]

You are lucky you can do your exercises. OA )bakers cyst are as topping me a lot of the time. If I'm to be honest I'm not that fatigued really. From time to time I'm tired but can keep going.Tnx for your good wishes xx

[SnazzyD in reply to Gaz227]

I wouldn’t be so pessimistic. 5mg is still plenty to give a rubbish adrenal activity test result. As PMRPro says, my activity was poor at 5mg (by symptoms) and my test at 4mg was poor. My endocrinologist just said to keep reducing because my adrenal glands needed more of a prod from experiencing a deficit from even lower doses. I dropped down by 0.5mg over anything from 8-14 weeks at this stage. And by 1.5 my function had been triggered into being much better.

[lkcreedon in reply to SnazzyD]

So slow but patience seems to be the way to go!Tnx for your reply 🙏

[Gaz227 in reply to SnazzyD]

I had 2 adrenal tests in a month , before the tests for 2 weeks I was taken off pred and put on Hydrocortisone , it really didn’t suit me but they told me as it has a very short half in comparison to pred it would give a better adrenal function result . I stopped all steroids for 28 hours before the tests , I don’t mind saying I felt very ill and couldn’t wait to start back on pred after the test. Once they got the results the same day I had a phone call from Rheumy saying on no account was I to try and reduce my steroids until I have had a face to face with the endocrinologist. So that’s where I am now , took me about a week back on pred to feel normal again . 🙏

[SnazzyD in reply to Gaz227]

Sounds good on paper but it takes more than 2 weeks for the adrenal axis to wake up. Not surprised you felt awful.

[Gaz227 in reply to lkcreedon]

I don’t use the dead slow reduction method after a flare , I tend to up the pred for a week or so then reduce 1 or maybe a half every day back to my regular dose , but if the pain comes back I go back up and keep trying every few days till I get back . That’s just my approach anyway , seems to work for me , good luck 🤞

[Wizards in reply to Gaz227]

I had adrenal insufficiency and it started at 5mg and continued to get worse.I used the Dead slow tapper from day one with much time in-between and luckily never yoyo'd. However even at high doses I could only drop 1mg at a time.

My rhumitologist would say bloodwork is fine and I'd say not for me and now off my inflammation # is 1. So yes when my #s were above 7+ I could feel the slight activity and just stay put for as long as it took. Usually anywhere from 1-3 months then drop.

I too was told I'd never get off but I plugged away and when I got to 2mg I was tested and my rhumitologist started yelling over the phone I could die if I caught anything.

I literally was a couch potato for years with the exhaustion. As PMR PRO said you have to put up with it. I honestly found it the hardest part of the journey.

My Endicronologist almost killed me by insisting a faster timeline and put me in crisis.

I should never have listened to him but you feel excited that you only have 1mg to go.

This is the time to take time.

I was 8+ years. My cousin is a lifer.

I hope this helps those who are on lower doses.

Not everyone has problems like I did. Good luck.

[SnazzyD in reply to Wizards]

My Endo suggested too fast a reduction too which I declined because it felt dangerous for me.

[PMRpro Ambassador in reply to SnazzyD]

You'd think they would know better wouldn't you?

[Wizards in reply to SnazzyD]

Smart lady. That's why our experiences are valuable to those who come behind. Bravo

[PMRpro Ambassador in reply to Wizards]

"my rhumitologist started yelling over the phone I could die if I caught anything."

It didn't occur to him to arrange a rescue pack of hydrocortisone which all of us should get at lower doses, just in case.

[lkcreedon in reply to PMRpro]

Seems to me that few or little doctors and even Rhumatoligist s understand the disease at all. It's quite alarming some of the comments I have read on this site . Those of us with PMR really need to be on top of it ourselves as much as possible. My Rhumatoligist seems good and is happy with the knowledge I have acquired on the site. Going to ring her rooms tomorrow to see if I can get a cancellation with her asap as I found today to be the most debilitating. The bakers cyst prevented me from walking. Coming round now but I need some attention now. So debilitating. Tnx for all the responses 🤗

[Wizards in reply to PMRpro]

You would think, daFrankly, I should have known but it was through Covid and we were in lock down and everything through calls.

Plus all you can think is I'm so close to getting off and all sence left me 😂.

That's why I warn people so they don't go through what I did.

Yes I'm off but what a cost. I actually wrote my sister and said I think I'm dying. OMG. Big warning to all. Stay put at 4mg if the exhaustion is overwhelming and let those adrenals get a chance to catch up.

Once off I'm not untouched. In the last year and 6 mos I've had gallbladder removed, operation on my hand which hurt more than anything and 1.6 yrs trying to figure out the excruciating pain in my hip.

As of this week and mri in seeing a supposedly top specialist I have a tear in hip cartilage ( no problem apparently) and I've torn the ligaments to my hip.

I found that a cortisone shot helps alot with pain but specialist says don't do more go to physiotherapy.

I explained I'm in excruciating pain, drop to floor so how can I exercise. See GP for pain meds.

Pass the buck. See me in 2 mos if it doesn't work lol. OMG

Getting old is not for the faint hearted.

Sorry for the rant. I truly fell apart once off prednisone.

[lkcreedon in reply to Wizards]

Slow and very easy does the trick by the sound of it. I imagine when ur down to 1mg you just want off the pred altogether. It's a difficult journey for sure 🙄

[Wizards in reply to lkcreedon]

All through my pmr journey I would have daily bouts of exhaustion or extremely tired during the day.If a journey like mine when people talk about the exhaustion at 5mg and lower you just have to grin and bere it. It can make you a couch potato.

I have said to many people once that hits stay put for months if need be.

I had old school research that said stay put for 1 yr at 10mg for adrenals and I did stay at 10mg for 8mos however I wished at 4 mg I had stayed put for an extended period of time allowing the adrenals time to catch up.

[lkcreedon in reply to Wizards]

Very interesting. Thank you. I will slow down. Always on the move.

[PMRpro Ambassador in reply to Wizards]

10mg is too high for adrenals, it is still above the physiological level of steroid in the body and cortisol is suppressed, If you mean the 10mg for 1 year in the Quick and Kirwan paper, that is more to let the PMR start to fall off in activity without confusing issues with tapering.

Prof Rod Hughes, one of our go-to private guys in the UK, likes to keep patients at 5mg for up to 9 months, that is more reasonable to let the body catch up but still borderline high. Whatever dose you can get to without coming to a halt with fatigue is a place to mark time for a few months - and do it repeatedly if necessary as you taper. The slower the better.

[Wizards in reply to PMRpro]

As I said it was an old paper. I totally agree after I did it it was to high. However it did my body well and I was able to drop better. So who knows. Totally agree with your Dr who says stay put for 8mos.

[PMRpro Ambassador in reply to Wizards]

I don't think that Vanessa Quick ever suggested the 10mg period was anything to do with adrenals and while her paper isn't the most recent, it is well founded (unlike a lot of stuff about tapering on the internet) and she herself still uses the approach - she is a Professor of RHeumatology specialising in GCA at a hospital close to London.

[Wizards in reply to PMRpro]

I'd have to go back 10 yrs but that wasn't the name. Really doesn't matter now. As I said I agree with the Rhumitologist you mentioned about staying at 5 or less for 8 mos.Thanks for your concern and attention it's very much appreciated.

[Almostaweed]

No one seems to have picked up on your comment that you spent a lot of time on your feet preparing for Halloween and that you felt better after resting. I know that rest doesn't necessarily help with PMR, and that movement and exercise often do, but I think there are times when resting is the right thing.

[PMRpro Ambassador in reply to Almostaweed]

No-one picked it up because it wasn't mentioned in the original post - and was only mentioned in an internal thread last night whenI had gone offline so didn't see it! Things said in the middle of existing threads are often only seen by people who see it later.

But you are quite right - a lot of standing won't have helped any of it!

[lkcreedon in reply to PMRpro]

Tnx PMPro. I must update my profile as well

[lkcreedon in reply to Almostaweed]

Very true Almostaweed. Stay well 🙏