Lowering dose question | Arthritis Information

Okay....so I was at 20 mg and doc lowered to 15mg with the intent of lowering 1mg each month. Today is one week and I am terribly sore. My lower back(in the hip region) aches and the neck pain and headache have returned. I should tell you that I have 3 bulging discs in my neck along with the pmr and I suspect one in my back(no mri confirmation). The doc wants to sit on those for now. I think the higher doses of the prednisone were helping with that pain as well. So, I think my pain is at about 6 or 7. Do I call doc and have it upped or is this what I am supposed to muddle through with til its gone????
I am afraid that I am over analyzing my pain.
Thanks.
Hi YoungOne,

Sorry to hear you're back in pain again. But a couple of questions:

Do you mean your doctor dropped the dose directly from 20 to 15mg a day? And how long had you been on 20mg?

In the UK the usual starting dose for PMR is 15mg per day and that usually does the trick if it is PMR. Occasionally a dose of 20mg is needed, presumably if the inflammation is severe. When you start to reduce the dose there are two aspects: if your body has become "used" to the steroids then there may be pain because you are removing the steroids until your body catches up, so to speak, or, if the dose you have reduced to is too low, there may be a return of the PMR pain. There has been a lot of discussion on here and on the UK site "Pateint Experience UK" about how to tell the difference and the conclusion seems to be that pain that appears almost immediately and improves over up to 2 weeks is probably the steroid withdrawal sort whereas pain that takes a few days to appear and then gets steadily worse is the PMR pain reappearing.

Most of us who are involved with the UK site are of the opinion that an overnight drop of 5mg is too much at one go - whatever the medics think! Certainly, a drop in dose of 25% is a lot and I would have dropped from 20 to 17.5 (we have 2.5mg pills in GB) and even then I would have gone about it by taking 20mg one day, 17.5 the next, 20 the next and so on for a week or so and then progressed to 20/17.5/17.5/20/17.5 etc for another week - i.e. increasing the number of days per week on the new dose until I was down to 17.5 every day. Some people I know would even have done one week with one day at the new dose, the next week 2 days at the new dose spaced out over the week and so on, so that it took 7 weeks to drop completely to the new dose! Much slower than you seem to me to have dropped the dose. Once you get to even lower doses you need to make the drop in 1mg steps in much the same way. Many people plan in a quiet week when they are dropping the dose - trying to move house or look after the grandkids and dropping the dose is asking for trouble but even a small amount of overdoing it can lead to a lot of pain!

The pred is controlling the pain by reducing the inflammation to give you quality of life - it hasn't "cured" the PMR, it is just making it liveable with. It almost certainly is helping with the disc problem as there is bound to be inflammation there too but you say "return of the hip pain" so that sounds more PMR. And what sort of headache is it? Neck and hip pain are typical PMR signs but headache is more likely to be associated with GCA and there's no playing about with that, non-treatment of temporal arteriititis can lead to blindness which, once it's happened, is irreversible. Have you had any blurring of vision or jaw pain? Where is the pain in your head? If any of these questions apply - contact your doctor.

The bottom line, though, has to be "what is the point of taking pred if it isn't enough to deal with the pain?". No-one likes taking pred but the docs are often a bit too keen to get the dose down - the only real guide to whether a drop is OK is the symptoms. If you are not in much pain or discomfort the drop was OK, if you are in a lot of pain, it wasn't. Is your 6 or 7 referred to the worst pain with the PMR or the worst pain you've ever known? I don't think I'd accept 7 either way for more than a couple of days. Your doc isn't the one in pain and has probably never suffered the pain of PMR.

hope this helps but if I knew a bit more about your history there might be other comments I'd make,

MrsE

Thank you thank you thank you for taking the time to respond!
I know I am having pred. withdrawl because I also am very nervous, anxious, feeling like I am going to jump out of my skin. I am a week in so far and don't know how long to actually wait til I approach the doctor.
I believe that the headache is directly associated with the disc issue. We addressed it when I first went to the doctor. He put me on extremely high doses of prednisone(80mg) over a 4 day period to see what happened. He was pretty sure I had the PMR but my age of 42 was an issue. When I returned to the office with the only symptom left being neck and head pain, he concluded that they must be from a different source. I had a shot and that relieved the pain and the headaches. However, that was about two weeks ago and now its returned. We are 'sitting' on the disc issue and just adressing the PMR for now. Odd to feel good and bad at the same time. I could have pain for the mere fact that I do not know how to take it easy or slow down. I am extremely active, have 5 kids the youngest(5) with special needs. My life does not permit slowing down or doing less!! The problem is that at this level, I do need the occasional narcotic pain releiver(although I have to say it doesn't get rid of the pain-but dulls it). I think that my experience at trying to even get a diagnosis has tainted my view of my health. In other words, for 9 months I was treated more or less like a hypochondriac and a stressed out mother rather than someone with real issues. So, I sometimes feel a bit like one. Noone even bothered to take an MRI til this doctor. How long does the body take to adjust to the change from 20mg to 15mg p day(I was only on 20mg p day for about two weeks, and 40 per day for 5 days prior and 80 p day for 4 days prior to that----in other words very newly diagnosed, only since 9/2).
Well, I have babbled enough.........
Hmmmm - not sure I agree with your "I know I'm in pred withdrawal because I'm nervous", that sounds more like a reaction to the high steroid doses you've been on from what some others have said although if it started after you went down the dose then fair enough. I don't know though because I never got the jumpy manic bit with steroids.

I used to have pain up the back of my head and in my neck and I eventually realised it had gone after a couple of months on steroids at a much lower level than you were on to start with so it may still turn out that some is from the PMR. I think it was due to the muscles all over my back being in spasm and pulling against each other as I managed to keep going fairly well for 5 years before diagnosis using a physical therapy called Bowen technique, physio, aqua aerobics, Pilates and Iyengah yoga which all addressed the muscle problem. I, too, got the run-around because I was in my early 50s when it started for real (I suspect it was there before but just not as bad) and I never had abnormal blood values for ESR and CRP (the inflammatory markers that are usually raised). "Too young for PMR, no abnormal bloods" - conclusion: all in the head!!!

Your doc obviously went for a "let's exclude GCA" approach - 80 mg is still a massively high dose but at least it was only for a few days. However, actually, even though those days were at high doses, the fact you've only been on the steroids for such a short time should mean you are not having steroid withdrawal. And good for him - at least he wasn't blinded by you being so young. It is becoming clear that PMR is not the respecter of age groups some doctors believe and I suspect that many people with PMR who are younger are like you but have just given up in disgust at the labels they are given and stop asking the doctor and turn to alternative methods. As I say, I did manage quite well for 5 years but my life was arranged around use of the car and simply not doing what I felt I couldn't - and I certainly couldn't have dealt with 5 kids of any age!!!! And special needs (although you don't say what variety) would have totally defeated me I think.

You ARE a stressed out mother - with the real issue that it has caused an autoimmune disease - most of the people I know who have PMR have been the carers, the takers of responsibility and have had a stressful episode shortly before the PMR struck hard. Some have been confined to bed because they were so disabled by the PMR's effects and pain. One lady who posts on this site is an OP nurse and has been granted accommodation by her employer because of the disabling effect of PMR - she is in the US so it may be worth you following up if you are entitled to any assistance although I know the insurance issues are complicated for you and I don't know anything about that side of things. It is important that you try to get some way of pacing yourself to be able to deal with the PMR.

It's just occurred to me - what sort of shot did you have two weeks ago? Was that also a steroid shot but local to the pain site? That will have contributed to the effect you got at 20mg/day and would start to wear off after the couple of weeks so the effective drop will have been more than from 20 to 15. I think I would ask the doc if you could at least alternate 20 and 15 mg a day for a while and see if that helps. If the dose is too low to reduce your inflammation you will get pain and your body won't adjust, it will just get more painful again. As I said - if the dose is OK then the adjustment for steroid withdrawal shouldn't be more than a week to 10 days and then you should settle down with less pain again.

And don't apolgise about babbling - that's the way anyone reading gets the info to offer advice and information that may help you. And everyone who looks in on this forum has been where you are in terms of pain and learning how to work with the pred to live as well as possible. There is no cure yet - but you don't have to suffer excruciating pain. And having a good moan on the forum is a release AND you know someone who understands it has heard you - bet your friends and family haven't a clue what you are going through! If you have time, read other posts. Go to the Patient Experience UK site and read the posts on polymyalgia rheumatica there, and there is a support site in the UK - Google pmr-gcauk northeast support group and visit it. There are articles about all sorts of things to do with PMR and steroids and living with PMR - all helpful. MrsUK and others post on here regularly and will probably come up with something too. You are not alone and knowledge is power!

all the best,

MrsE

Thanks. I was thinking that if I still have pain tomorrow I will touch base with my doctor. And no, no one really knows what I am going through. Probably, too, because I don't present like I am in pain. I still do EVERYTHING that I have to. Just now that I am on the steroids, I am like I was in my 20's. Although this week with the reduction not so much. Tired, nauseous and pain. Ugh. Oh, and my son had autism. Doesn't talk, still in diapers at 5 etc etc.
Thanks again.
I will check out those sites.
There is a wonderful word in the English language - has just two letters. It's called "no"!! Now your baby won't be able to cope but everybody else can do their bit. I had a friend who taught in the Army school in Germany who had 2 kids who, from the age of 7, were able to sort their washing and feed the washing machine themselves. And transfer it to the dryer and take it out and fold it neatly. They are never too young after the age of 5 (and the rest must be that) to say they can't help. Don't hide it all - explain the pain and fatigue and ask for them to help. Tell them it feels like you just ran a couple of miles. And don't expect perfection of yourself - a bit of dust never hurt anyone in the right place. Is the kitchen worksurface clean before you prepare food? That's fine, it'll pass. Under the sofa? That doesn't matter so much. Learn to sit rather than stand, lie rather than sit but keep moving gently so you don't stiffen up. If you have "carry to car" services at the supermarket - use them. Home delivery is even better. Don't try to carry too much at a time and if there is something the kids can carry without destroying it - let them do it for you. Ask for help when the option is there. Learn to plan ahead to reduce the amount of things you have to do yourself. It will be hard at first but it will get easier.

Good luck and keep in touch - but remember, just 'cos you feel 20 on steroids doesn't mean you should act like it!!!! Feel 20 (we all do mentally) but act your age!

MrsE

Hi YoungOne,

Mrs. E has given you some great information (as always). I live in the U.S. so I just wanted to say that I was on 20 mg for about 6 weeks before dropping to 15 mgs. The drop worked for me, but my Dr. (rheumy) said, "Give me a call if you have any problems". He's always said that and for that I'm thankful. There was one day about 2 weeks after the drop to 15 that I took an additional 5 mg because I had some hip pain and trouble moving around. When I told him about that at my next office visit a month or so later, he said, "You did exactly what I would have told you to do". Thankfully a lot of Dr's give us some latitude on dosage. I think that's because they know that just about everyone wants to get off the Pred... or reduce the dosage... as quickly as they can so won't abuse their trust.

I'm now on 10 mg. Going from 12.5 to 10 I alternated days of taking 12.5 and then 10 (12.5/10/12.5/10/... etc). I did this for 2 weeks. Then after the 2 weeks on the second day I was supposed to take just 10 mg, I forgot to take my second dose at dinner until around 11 PM (I take 5 mg after breakfast, and 5 mg after dinner at my Dr's direction). Because of this, I had a little flare the next 2 days so took an additional 2.5mg (1/2 of 5 mg) which really helped.

I wouldn't hesitate in calling your Dr. for help. Good luck to you.

Don't know if you've found the link that Mrs. E referred to but since we can post links on this forum (thank goodness), here it is:

Polymyalgia Rheumatica Experiences:
http://experience.patient.co.uk/discussion_list.php?d=69
RickF2010-09-29 14:36:26Thanks so much. Very nice folks. I always get welled up when someone tells me to take it easy........

Rick - thanks - can't get used to the idea that if I put a link in it will be OK on this site. I think Patient Experience errs on the side of caution to keep out the junk and loonies posts - and end up throwing the baby our with the bathwater! This site doesn't seem to get too bothered with them though, wonder why.

That's an interesting bit of info - I wonder if we were a bit less reluctant to up the dose by a decent amount for one day we might actually do better if a flare seems to be appearing. I've had to up my dose a fair bit over the summer and was beginning to think I'd have to go up again but one day with 2.5mg extra and a pain killer seems to have dealt with the foot problem better than trying to rest it. I wouldn't mind if it was any of the other PMR pain - but this was a real pain

Young One - never mind welling up - get those feet up!

MrsE

Your not alone because there are others out there dealing with this whole PMR experience with you except that we are all pretty much doing it alone too. In other countries there are support groups for PMR but here in the states there isn't much. I'm in Ohio and know of no one with this or that has heard of it other that medical personnel.

As far as looking normal we can relate too. I have had chronic pain from other issues since 2002 and have tried every pill, injection, PT and surgery out there but still have pain. I still look normal and like I said, "What am I supposed to do, say ouch everytime it hurts to move". Heck, I'd be saying ouch constantly. That would get old real fast so I just keep my mouth shut.

I do feel for you. I've quit working and have filed for SSDI. I couldn't imagine dealing with the pain of PMR with young children. Good Luck and try not to over do things. You'll get to feeling better once you get the steroids straightened out.

Do be careful with the tapering. When I went from 12.5 down to 10 I became very ill with severe fatigue and just not feeling well. Ended up going to Urgent Care and getting a shot of depromedrol to get my steroid level up. I didn't feel well for quite some time after that. So if you are feeling bad after a drop definately don't question about calling the doctor. That's what we pay them form

Now I've rambled on enough. Take Care.