I was diagnosed last November with PMR and started on 20Mg of Prednisone. It relieved the pain
immediately, and I have slowly been reducing the dose. I was on 8.5 mg on 3/30/14 and started using Eileen H's slow reduction method. I was in the midst of the reduction schedule and took 7.5 on 4/23. The next morning I was in agony. I took an 8.5 dose that day and wasn't completely better when I went to bed. However, this morning I woke with only mild stiffness that disappeared with an 8.5 dose. My question is how common is it to have a flare-up or does it indicate that 7.5 is too low for me. I really was hoping to get off of the prednisone. Any comments would be appreciated.
To be down to 8mg in 6 months is very fast - the Kirwan group gives 15 for 6 weeks, 12.5 for 6 weeks and 10mg for a year and have a relapse rate of 1 in 5.
The pred has not cured the PMR, it is there to manage the symptoms and as long as the underlying autoimmune disorder is active you will need some pred to control it. The idea of the very slow reduction is to reduce the likelihood of pain due to pred withdrawal which is so similar to PMR pain you can't tell which is which and often go back to a higher dose that you don't necessarily need. It also means you find the dose that controls the symptoms more accurately because the step between what controls and what doesn't is smaller.
This suggests the "lowest dose that controls the symptoms" for you at the moment is 8.5mg, possibly 8mg - but 7.5mg is not enough. If I were you I'd stick at the 8.5mg for a few months - as I say, Kirwan keeps patients at 10mg for a year but if 8.5mg does it for you that is significantly lower than 10mg.
We all know about the desperation to get off pred - it doesn't work like that though. You need the pred as long as the disease is active - in a way it's a bit like diabetes, you need the medication to control the blood sugar level and you wouldn't dream of stopping that would you? Pred is your friend, not an enemy. It allows you a decent quality of life with minimum pain - and that is the choice: you take enough to control it and learn to live with the other bits. No pred leaves you in pain and immobile - high risk for weight gain, osteoporosis, high blood pressure and depression. Plus there is the level of inflammation in your body which increases the risk of cancer and cardiovascular disease. Does this all sound familiar? It isn't a simple case of pred += risk, no pred = no risk.
Gloster - Wow! That's a very fast reduction and it isn't surprising that it has led to a return of symptoms. As you have already proved, yes it is comon to have a flare, especially in the first 12-18 months of treatment. If returning to 8.5 has resulted in you feeling as comfortable as you were on, say, 10mgs, then fine. If not, then the inflammation may still be simmering away underneath, in which case the next time you try reducing could result in a similar experience. Your experience has certainly indicated that "7.5 is too low" for you for now, so remaining at 8.5 (or above if necessary) for longer than previously (a couple of months if necessary) would be wise, otherwise if it doesn't work the next time you will find yourself in a yo-yoing situation which can make future reductions much more of a problem.
It does seem like a very quick reduction. I have to come down 1/2mg...just cannot do 1mg. I am on 13.5 and 13 every other day now - soon to be on 13 and its taken me 3 months from 15.
Ive met some people who have to do 1/4mg once they get that low and still use a plan for than like Eileens. I hope to get to 10 or 9 and stay on that for the year as advised. My Gp lets me do my own plan.
It took me a long time to realise that some of us are such delicate flowers that even 1mg at a time "overnight" isn't do-able. I wonder if I would have been on an even lower dose than I am now if that had dawned sooner.
We've got a few doctors in tow on this - but others are still ignoring the evidence in front of them that their patients simply aren't getting anywhere with their big steps version. Once that happens they start digging out labels like "steroid resistant" and "steroid dependent" or even "not PMR" and want to add in other drugs which still don't work.
I keep saying - never mind the vastly expensive trials with new drugs that no one is going to approve for use in the NHS as it is at the moment and concentrate on using pred BETTER. It's cheap as chips and works - just make it work without as many flares.
Thank you for the information. I guess I'll try reducing on your schedule at 8 mg for awhile.
Thank you for the information.
Yes me too I am trying to get down from 7 and using the method of slow reducing Eileen has written so far so good, almost at the totally 6 stage, my Rheumy said if you feel u having a "flare up" dont increase, take a painkiller, just paracetomal is ok.
Eileen I could not agree more. But can see why it is easy to go along with the doctor and try to come down too quickly - the desire to come off them or to a lower dose is so great re the awful side effects I have. Weight gain, esecially on the face and the buffelo hump, the chin and stomach suffer from this awful fat redistribution. The acne rosea...the facial hair (wow I must sound very attractive) It would be so easy to rush it
Darn it I pressed reply to eileen and it replied to gloster...now I cant reply to anyone (frown)
Hi' I am new here and I am so glad I have come across this site as I suffer from PMR I put up with for a while thinking it was Arthritus it got really bad, went to the Doctor and the blood results came back pos with PMR again(had this about 10 years ago.
Started on 15 mg a day worked really well for 6 months so I slowly got it down to 10mg I have been trying for the last few months to lower the dose but it seems that the 10mg is the maintenance dose I have to stay on ,what amazes me is even if I cut it down by half or quarter of a mg the pain comes back not slightly but full bore.
Its a bit like Effexor which I was on for a while to help me get over a tragedy in my family I was on a pretty high dose 300mg a day 'they say its as bad to get off it as any heavy drug user, the Forum's are full of people trying to get off this awful Antidepressant,I was lucky that I was taking capsuals so every day I took few of granuals out and I was able to fool it until the last 25mg but in the end it got down to about 3 mg it was so fiddiley but it worked.
The only downside to treating the PMR is I cannot predict when the rain is going to com for sure.lol
I had them all too when I was on Medrol and it didn't seem to work for the PMR either - I must ask about that because there is a research project being set up looking at pred side effects. The other preds I've used were effective for the PMR at least!
The rosacea can be treated by the way, google it. I have an epilator and screwed up the courage to try it on my face for the lovely dark beard! It worked well. You can buy small ones designed for the face these days.
And I have to say - I seriously dislike this format. Another forum I use is similar - bah!!!
Hi seeana, I'm so sorry to read that you are into a second bout of PMR after being free of it for so many years. I hope it may help you to know that a few of us who post here are also in touch with at least two other people on another forum who have succumbed for the second time after being free of it for a few years, but again they have recovered and are off steroids.
Although you say you have been trying to reduce from 10mg but are failing in spite of half or quarter mg decrements, have you tried reducing by half a mg on just one day a week? I resorted to this routine when having great difficulty getting below 5mgs (which like 10mg can often prove another sticking point). I reduced on just one day of the first week, two days of the second week, three of the third etc, taking about 7 weeks to reach the new dose every day. I continued in this way right down through the doses and eventually succeeded in getting my PMR and GCA into remission and getting off steroids. In your case, you will need to make sure your inflammation is completely settled on the 10mg dose before trying to reduce, even if you have to remain at 10mg for a couple of months first. Good luck!
What a pain Seeana (no pun intended). I struggle to come down even from higher doses. You are more likely to have success using the method Mrs O recommends. Eileen has a chart printed to follow, which I have used and it works for me. Even now I am doing every other day 13 and 13.5. Will do that for two or three weeks.
Hi Eileen - great minds and all that...I have an epilator and have to use it daily now. I did use it oncea week before since monopause.
I have found something that really dose help the rosacea. Well 3 things to be exact. Lavender water, lavender and aloe gel calms it. But the thing that has it under control is pure coconut oil. Its stopped the itching annd the red has gone down. I have to use it x 2 a day.
Scuse typos - fancy forum still with no edit!!!!
Hi MrsO. I have GCA, diagnosed last Oct and I too have found it difficult to reduce from 20mg Pred to 15mg. I had quite a number of bad days so had to go up to 17 1/2 mg. I was initially on 60mg for 2 months. I have now reduced back to 15mg and for over a week now I have been fine, apart for the usual Pred side effects. My Rheumy told me to reduce by 5mg in March but it seems 5 is a step too far for me. He did say that I could go back up if need be. As you say MrsO slow but sure is the only way. I know that if I can get to 10mg at some point I may need to stay there for a while but I'm ok with that. At least it's a helluva lot less than I was on. I have read on here that when you get to 10mg it is possible to lies weight. I am only 4' 10" tall and have put nearly 2st on so as you can imagine I'm not comfortable at all and get very breathless and get backache too, so I will be glad when I can lose some of it. Thank you once again for your very knowledgable comments. MaryJ xx
At this stage 5mg at a time is a massive drop - the top experts have said for some years that a drop should be not more than 10% of the current dose - and at 15mg 5mg is 33%! The reduction I use allows a steady reduction of 1mg a month or so - but it is far better than dropping and having to go back up again - because for some reason once you start to yoyo the dose it becomes more difficult to reduce the next time.
I'm a bit taller than you, barely over 5', but put on weight initially because of 5 years not able to exercise (no pred) and then later with medrol which I found awful. I've lost over 2 1/2 stones so far, still a bit to go but I have collarbones and a waist again! And a load of clothes that don't fit - luckily I'm a hoarder so had the "smaller" stuff in the cupboard too - despite an international house move :-)
Eileen
Hi MaryJ, you're very wise in being aware that a 5mg drop from 15 to 10 is a step too far in spite of your rheumy's advice - we know our own bodies better than the rheumies do! It's alright for him to say that you "could go back up if need be", but we know from experience, and as Eileen has mentioned, that as soon as we start yo-yoing our doses, future reductions can prove even more problematic. If you reduce from 15 to 10mgs in one jump and your symptoms start returning, you don't know at which stage between 15 and 10 the inflammation ran away again so you have to increase way back up to 15, whereas if you taper your reductions slowly and in smaller steps it's easier to spot when a particular dose is a little too far for now.
Yes, some people do mention starting to lose some of the steroid-induced weight gain once they get below 10mg. It can help if you reduce all refined carbs such as in bread and white potatoes. I tried to include lots of diuretic-type foods to offset the steroid-induced fluid retention, such as asparagus, garlic, fennel, melon. I also made sure to include a daily walk, even in the early days when I could sometimes only manage 5-10 minutes.
I do hope you continue to feel better on 15mg, and hopefully a much smaller drop next time will prove more successful - even if it's only 1mg, it's still a drop. Good luck!