PMR and prednisone

[LemonZest11]

Hello, I have just joined this group, I hope I am in the right section. I was told about HealthUnlocked by someone on the Mayo clinic site, which is awesome, but I am always looking to hear more news about PMR. Currently I have tapered my dose of prednisone from 20mg last December down to 4mg recently, and that is when symptoms started to reemerge. My doctor is obsessed with my CPR levels, which have risen to 26, but I only have mild stiffness in my thighs and so wish to continue to taper. This week I went down to 3.5 mg, and no significant problems so far. But that CPR level is always in the back of my mind.

[Yellowbluebell]

Hi welcome to the site. You have definitely found the right place.

If the symptoms reappeared then your pmr is still active. You should not keep tapering and should go back to the dose you last felt symptom free on. You then need to slow the taper down. If your crp levels have risen or stayed high then there is still inflammation in your body. Is your doctor happy with you continuing to taper even though your crp levels are high or is he suggesting you slow down? If the dose of pred is too low the inflammation will continue to rise and then you risk having to back to a higher dose to bring it back under control.

Others will be along to give you advice later.YBB

[Gary1310 in reply to Yellowbluebell]

Hi..I started with symptoms about December 4th, diagnosed January 16. My Rheumatologist at Marshfield Clinic prescribed 20 mg. I see him every 2 months. I have tapered down to 7 mg., however, because of a death and funeral, these good folks advised me to stay on my previous dose of 8 mg. until after the burial, which is Monday. That was good advice. I feel well and am able to cope. I will reduce to 7 mg. on Tuesday.

[fmkkm]

Hi LemonZest,

Welcome to Healthunlocked! This is a global site and many are sleeping right now. You will get some responses in the morning and I suspect they will tell you to chill out a bit, your CRP level might be telling you to slow down a little. Wishing you all good things on this journey, hang around and learn from some experts.

[Yellowbluebell in reply to fmkkm]

Like you say in the UK it is 4.30am and only the pred induced insomniacs like me are awake!!

[Constance13 in reply to Yellowbluebell]

Morning YBB!

I'm always surprised when someone mentions "pred induced insomnia". Since starting pred in 2012 I have slept between 9 and 11 hours during the night (except for loo breaks).😏 I don't now need to nap during the day though.

How different we all are!

C. 😴😴😴

[Yellowbluebell in reply to Constance13]

I know, its really strange how others sleep really well and others like me are roaming around the house looking for quiet things to do. Except of course any housework!! I even have my sewing machine on a towel so I can sew at night!! It does mean I can respond to newbies in the early hours but I cant always guarantee I can spell or make sense!

[Marijo1951 in reply to Yellowbluebell]

I had insomnia most nights when I was on higher doses - from 60 mg down to about 20 mg. It was definitely a side effect of pred as I'd rarely had sleep problems before then. Then I was okay for a long time, but now I'm on only 7 mg I find the insomnia returning. I was up knitting and watching US comedians on You tube between 2.30 and 5 a.m. this morning... Then spent time putting in a huge online grocery order to Sainsbury's, stocking up against the threat of a no deal Brexit. I'll probably have enough tinned tomatoes, stewed steak, peaches and chick peas to last til I'm 100. Thank goodness I'm retired and don't have to face the commute and the office politics any more. I can just loll about at home and please myself.

[Yellowbluebell in reply to Marijo1951]

I took early retirement so can do the same pleasing myself as well. It does help. I have about 3 hours a night and its driving me mad, well madder than normal!!

[Marijo1951 in reply to Yellowbluebell]

I'm not that bad. It now hits me about twice a week, though it used to be every night. I think all you can do is go with the flow and find (reasonably quiet) stuff to do. My ex-husband used to do DIY if he couldn't sleep, much to the next-door neighbour's annoyance - one of many reasons why he's ''ex''...

[Yellowbluebell in reply to Marijo1951]

Mine would be dead not ex!! As I make quilt for a living as well as a hobby I often sew at night. Husband hasnt heard machine going so I can always sew.

[cranberryt in reply to Marijo1951]

I have been exhausted, to bed before 10 every night. Then awake at 2 or 3 unable to get back to sleep so I can relate! But it’s better than not sleeping due to PMR pain! lol

[Marijo1951 in reply to cranberryt]

That's what I tell myself - the alternative is far worse!

[Yellowbluebell in reply to Marijo1951]

I have just got used to having 3 hours now but some nights i dont sleep at all and I am a complete cow the next day!! I would rather have the insomnia than try and and exhist with m pred

[stellafmdm in reply to Constance13]

Me too Constance 13, except that I can't keep awake by day either!!!!

[Yellowbluebell]

Could I ask you fill in some details on your profile as it helps other members help you. Thanks.YBB

[LemonZest11 in reply to Yellowbluebell]

Are you talking to me about profile details? Will check it out.In the meantime, yes I am well aware of the time differences and that's ok!

[Yellowbluebell in reply to LemonZest11]

I try to respond to people who post in the early hours just to let them know we have seen you and your post but we are mainly all asleep !! I don't like to think of anyone thinking we are ignoring themxx

[Mary63]

I think you have been lucky to get from 20 mg to 4mg in just 8 months without flaring. That is hugely fast. I started at 20mg in Jan 2016 and have just reached 6.5mg having flared on the way when I tried to go too fast. Most of us feel we can BEAT This disease by sheer force of will, but believe me, we cannot.

Facts are you have had a return of pain at 4mg, and this has even been confirmed by a rising CRP level. If you continue to try to get lower things will only get worse, and you may need a much higher dose to get the inflammation under control. You have gone down to too low a dose for now. You will get to lower doses, but not yet. Unfortunately you cannot by force of will speed up the process.

The important thing now is to allow the pred to deal with the inflammation which causes the PMR symptoms.

Get yourself up to the dose you were on when you last felt good. 5mg? Or it is often advised on this forum to give it a blast of a few mg higher....say 8mg for 3 or 4 days, and then you can drop down to 5mg for at least a month. Then start a very slow taper of 0.5 mg at a time, staying on each dose for at least a month. Someone will be along later I’m sure with examples of a slow taper.

I wish you the very best of luck.

[jinasc]

I am assuming you were diagnosed in August 2019 or December 2019...........your profile gives no information at present.

That is too fast and if your CRP level is rising, I would not be reducing I would be increasing.

Did anyone advise and tell you of the other symptoms to look out for in relation to GCA.

SEE Dorset Lady's post with the correct link.

Read both the PMR and GCA diagnosis and treatment. These are not just British Guidelines, they were drawn up by a Committee called EULAR/ARC.

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

Don’t think your link works - is this what you mean or not?

pmr-gca-northeast.org.uk/in...

[jinasc in reply to DorsetLady]

Thank you DL, I forgot to remove the . for some reason it won't take the whole on here.............. for all I have written in front of www, when I hit the post it will remove the I always think it is odd.

I also normally say download and keep, but bit twirly for moi

Hopefully feeling a wee titchy bit better Freya?

Freya always looked out for Hel😈

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

Hel,

That’s my job - looking out for certain selected others!

Feeling lot better thanks, will update next week after seeing GP. 😺

[PMRpro Ambassador]

Even if you don't want to go back up at present, at least remain at the same dose and get the CRP checked a few times to establish a trend. If it continues to rise it is a sign there is increasing inflammation present in your body - it could be due to something else but in the absence of any evidence of that you have to consider it may be due to the underlying activity of the disorder causing the PMR symptoms.

If that is the case and you stubbornly ignore it you won't just have stiff thighs - you will end up with a full blown flare and may have to go to a much higher dose for much longer to get it under control. You have reduced a lot and in a relatively short time and it would be a shame to throw away that good result by refusing to reassess. You are NEVER reducing relentlessly to zero, you are looking for the lowest dose that provides the same symptom control that the starting dose did. And it sounds as if you are definitely in that area and possobly slightly past it.

[gifford7]

The blood factor is CRP [C-reactive protein] and values over 10mg/L are cause for concern. see the Mayo link: mayoclinic.org/tests-proced...

"For a standard CRP test, a normal reading is less than 10 milligram per liter (mg/L). A test result showing a CRP level greater than 10 mg/L is a sign of serious infection, trauma or chronic disease, which likely will require further testing to determine the cause."

I have had flares where the CRP has exceeded this value and my rheumy increased the pred to bring it back down. More info:

uptodate.com/contents/clini...

"Some evidence suggests that an elevated serum C-reactive protein (CRP) level is more common than a high ESR. In two reports from the same group, an elevated ESR (greater than 30 mm/hour) was noted in 92 to 94 percent of patients at the time of diagnosis of PMR, while 99 percent of such patients had an increased serum CRP level (greater than 5 mg/L) [31,35]. In one of these studies, 9 of the 10 patients with a normal ESR at time of diagnosis had an elevated CRP (median 14 mg/L, range 7 to 47 mg/L), although mean values tended to be lower in these patients than in the PMR group as a whole (19 versus 68 mg/L). In another study, only 1.5 percent of patients had an ESR and CRP within normal limits (defined as less than 20 mm/hour and 10 mg/L, respectively) at the time of diagnosis [29]."

[Hidden in reply to gifford7]

Not sure where the info comes from but my rheumy also said that CRP levels are sometimes slightly and natuarally elevated as we age.

[LemonZest11]

Thank you so much Yellowbluebell, forwardmotion, Mary63, jinasc and PMRpro,

your advice has been invaluable and I am taking it on board. I filled in my profile information but to give you a bit of background, I was diagnosed by my GP last December and put on 20mg pred. She referred me to a rheumatologist who confirmed the diagnosis and began the taper. Down 5 mg immediately for 2 weeks, then another 5 for 2 weeks and then 1mg per month. The rhuemy is totally disinterested, forgetting to give me blood tests and not following up when I had one. Things continued to go well until I hit 4mgs, when slight symptoms returned, backed up by an increased CRP. CRP had initially been 87, but got down to 1 in Feb while on the 15mg. It began rising to 5, 16, 24 and most recently 25, which I am hoping is a levelling out and perhaps beginning of a decline. I have sacked my rheumy and have handed over care to my GP who is amazing and wants me to stay on 4mg for another 6 weeks before a further blood test. She'll increase it if the CRP has not settled or dropped. My ESR was rising but at last test it was 26, so normal. Sorry for all this ranting, I have been on the Mayo Clinic site but you women have such a better knowledge and I really appreciate the stern words because I'm a bit headstrong! Thanks again for all you words of advice.

[Yellowbluebell in reply to LemonZest11]

Glad to hear your doctor is on the ball. Some rheumies really shouldn't be let loose on real people!

Dont worry about ranting, that's what the forum is for and so you can get some helpful advice. We have all had our own rants mainly about useless professionals and stupid taper regimes!! Remember we are here no matter what questions you have. YBB

[Mary63 in reply to LemonZest11]

Words were not intended to be stern....just realistic!

[LemonZest11 in reply to Mary63]

That is OK, I appreciated the honesty.

[Noosat in reply to LemonZest11]

The advice from these knowledgeable people have taught me patience, which has been difficult for me to accept. My daughter says that I subconsciously think I am "wonder woman" and as such can will my way to feeling well. I now know better, so am willing to go slow.

[PMRpro Ambassador in reply to LemonZest11]

If your ESR is rising - it is NOT normal. The range is up to 20 or 30 depending on what sources you look at. But if YOUR personal normal level is single figures, even just into double figures is raised. The range is for thousands of subjects - and not for a single person whose personal range is much smaller, just a few points.

We do have a reputation here for straight talking And ranting is why we're here - to keep it at just ranting and not something nasty being allowed to develop.

[Daffodilia]

I have tapered from 40 mg in October to 7 mg now - get some aches and pains and stiffness and need naps in day - I think we have to learn to live with some of this so intend to continue taper - I don’t know my levels just go by how I feel

[Blearyeyed]

Stern words!!😋😂😂😂

No more tapering young lady until you are sure your CRP has levelled out and has begun to descend again. Your GP is sensible enough to see that that is the best course of action , the forum members know that this the best thing for you to do , and in your heart , no matter how much your will wants to keep tapering , you know it's what you need to do because your PMR is clearly still active.

Give yourself these weeks on your present dose to take care of your body with rest , relaxation , diet and gentle exercise , so that when you have started to be ready to taper again you have restored balance to your system and it will be less likely to cause the underlying symptoms that are increasing your CRP.

If you aren't already taking a full complex vitamin and mineral supplement , plus your Vit D, and Calcium start it now .

Drink more fluids and create a light diet that works for you. Don't go over the top with plans that involve alot physical activity or stress for the next month , you are already busy looking after you. If you need stuff doing like chores and jobs around the house get help.

Take time to do what you can and what not what you should and pace all activities with rest. Gradually build up exercise that you enjoy and helps you remain flexible but never push it .

Most importantly , with these elevating levels , if you feel a return of pain or your other symptoms , don't struggle on , just face it and accept it , you are having a Flare and will need to increase you dose for a while , your high maintenance friend us still there and will take no amount of argument from you against its demands.

Keep us updated with your progress , and don't forget , it is no failure to listen to your body and take all the medication and help it needs , in fact it is a success to hear what your body tells you and act on it.

Was that direct enough for you? Hope so !😋😂😂😂 Big hug x

[Bobbury]

Hi welcome,

From my experience tapering that low, will eventually bit you in the bum.

You think you are doing ok, then the build up will get you. My advice is get back to something like 6 or 7 mg and then take it real slow, no hurry.... There are better qualified people than me on this site who know doubt will better advise you on this......

best of luck

[Noosat]

I think I spoke to you. Welcome to this community. I'm sure you will find it valuable. You have certainly tapered rapidly. I am down to 5mg since last December and hope to go to 4.5 next week.

[LemonZest11 in reply to Noosat]

I think we are about the same. Xx

[LemonZest11]

Thank you. I am going to refer my GP to this group ... I think she could learn so much from such caring and forthright and knowledgeable women as you are. Here in Australia we don’t seem to know very much about PMR, except that rheumatologists pretend to. My brief experience is that they don’t see it as significant, and so it becomes routine, run of the mill treatment in a very outrageously expensive environment. So I got pissed off!! The Mayo website is kind, but nothing like this group. Thanks for your interest and comeback. I’m staying with 4mg after your advice (flirted with 3/3.5 shhhh).