Been diagnosed with pmr, just found this wed sight, have many questions

Been diagnosed with pmr about 9 months ago, been up and down on prednisone, have had go days and bad days, have felt like the lone ranger, found this wed sight by accident, I am so glad and now a little scared after reading some posts. I never know if I am doing the right thing. I have so many questions. I have been searching the wed for natural supplements that help inflammation, tried Vitalzym, wobenzym N, product called InflamMove, right now I am trying the Wobenzym N along with my prednisone. Has anybody tried things like this or are they a waste. I have been trying to figure this out by myself, my doctor now wants me to get off the prednisone, so he wants me to start taking Imuran. Has anybody took this. I have so many questions and thought I can't type fast enough

[Bailybiscuit]

I have tried an anti inflammatory diet, I use ginger,take omega 3, turmeric and have tried homeopathic remedies but nothing has worked. I started pred over a year ago and am now back as high as when I started. I am also taking hydroxychloroquine too as they want me to come down on steroids.I probably now have seronegative arthritis as well.

[Celtic PMRGCAuk volunteer]

Can you tell us more, mcrann, for instance your steroid starting dose, your present dose, and how you have been reducing? It may be that you either haven't remained on your starting dose to really stabilise the inflammation in the first place or have been reducing far too quickly down the doses.

Many doctors do want to get us off Prednisolone quickly, but unfortunately that rarely happens - PMR goes into remission when it wants to, not when our doctors want it to. For some lucky people, it can take up to a couple of years but for many of us it can take three, four or five years plus.

Imuran is a DMARD - a disease-modifying anti-rheumatic drug - (we know it as Azathioprine in the UK). Such drugs (there are several) are often suggested by the doctors when a patient is having difficult reducing their steroid dose. It can take up to three months to show any benefit, that is if it is going to work at all.

I'm not familiar with any of the "natural" supplements you have mentioned, but you should be wary of any such supplements you read about on the internet. Importantly, you should check with your pharmacist before taking anything either on prescription or purchased over-the-counter for any contraindications with Pred.

[Hidden in reply to Celtic]

I think my starting dose was 20mg, no sure how I decreased, had problems I remember, I would get to a dose where I couldn't take it any more then I would call him and he would raise me up 1mg, I,d try that for a couple days with no help, call him back then he would raise me up 2 or 3 more, that would seem to work, about 3 months or so ago, I loose track of time, he started me on decreasing 1mg a month, got past 10mg went to 9mg but couldn't take it, went back to 10mg, having some problem, hope to make it untill I see him in a couple of days

[jinasc]

Go to these websites and read everything you can.

pmrgcauk.com

pmr-gca-northeast.org.uk

pmr-gca-scotland

[PMRpro Ambassador]

If you have only had PMR for 9 months your doctor is in cloud cuckoo land if he thinks he can get you off pred just like that. Only about a quarter of patients are able to get of pred in under 2 years and are more likely to have a second dose at some later date. About half need pred for in the region of 5 years and the rest for longer, sometimes for life at a low dose.

You shouldn't have been "up and down on pred" at this stage and I suspect your doctor hasn't been going about reduction in a sensible way. Flares are almost always caused by reducing too far or too fast - and often doctors do both. No reduction should be more than 10% of the current dose, drops of 1mg at a time are far more sensible and you are NEVER aiming for zero - you are looking for the lowest dose that manages the symptoms as well as the 15-20mg starting dose did. You are also not necessarily going to be 100% pain-free. But pred is the mainstay of therapy for PMR - and there are no studies that show that Imuran reliably reduces pred dose - and it certainly won't guarantee you will get off pred, it is used as a steroid sparer not instead of pred. It also has side effects. That said, I do know one lady on the forum who does find her symptoms (GCA in her case) are less when she is taking Imuran.

This paper is aimed at GPs to help manage PMR using pred

rcpe.ac.uk/sites/default/fi...

and they would have you on 10mg at present - you would have reached the 10mg for one year stage.

Then look at this on this site

healthunlocked.com/pmrgcauk...

This method of reduction and another very similar one are being used by one or two rheumatologists too - and so far the vast majority of people who have tried them it has resulted in the much lower final dose than they have managed before and with pretty much no problems.

and read the links sambucca has given too.

Don't worry too much about what you have read on the forum - always remember that the people on the forums do tend to be the ones with problems of any sort. Patients with no problems don't look for help. But if you have questions after doing the recommended reading - come back and ask them and someone will try to help.

Be wary of supplements - the most likely person to benefit is the person flogging them! Not you. You should never mix supplements with prescription drugs or each other unless you have checked with a pharmacist. And there is no guarantee what is in the stuff sold on the internet - investigations have shown them to contain all sorts of things, sometimes even dangerous substances, especially when they come from the far east.

So all in all -yes, I'd sum up supplements as a waste at best and dangerous at worst.

[Hidden in reply to PMRpro]

Thanks for all the information, sorry it took so long to get back to you. Not sure what the time difference is between where you are and Des Moines, Iowa in the US. Right now i it is about 8:30 pm.

Have some more questions. What constitutes how long I have PMR? What level of prednisone should a person stride for. When do you know when you need to say enough is enough and go back to a higher dose of prednisone. This time I think I started at 14mg and have been decreasing 1mg per month, got to 10mg, on April 27 went to 9mg, next two days felt fairly well, then started to ache a little, thought maybe just an adjustment period, got to May 4 couldn't take it any more that night so took 5mg instead of 4mg, meaning I went back to 10mg. Didn't call my rheumatologist, thought I'd see if this would work, I see him on May 11. Next day felt a little better, May 6 felt pretty good thinking this will work. Today not so good thinking I will have to go higher, hope I can make it until I see him.

Now for some of my symptoms. When first diagnosed with this, felt achy all over like a bad case of the flue, back of lower legs and butt hurt badly, now about 9 months later when I get to a dose thats not enough, back of lower legs, butt, back, shoulders, brain fog, vision just isn't right, once in a while my scalp feels burning, face feels burning, can just ache all over, not sure if that's not from swollen face from prednisone, slight headaches. I try to explain to my rheumatologist that these things come and go through out the day, one minute one or all may be there, then later on some are gone or maybe all, he just doesn't seem to jet it

In the last month I've seem to have several days of what I call brain fog, Hard to focus, remember things, feel slight press in my head, just comes and goes, notice when i take off my socks have puffy legs above my sock line, just happen to run into my regular doctor the other night and she ask me how I was feeling, told here about burning face and puffy legs, said probably from the prednisone, prescribed some water pills, seem to be working, now pee a lot, but this morning woke up with face feeling burning, not sure whats up with that, every day seems to be an adventure

[PMRpro Ambassador]

There is a 6 hour difference between the UK and Des Moines - I live in Italy, another hour ahead of you. I've been to Des Moines - spent a couple of weeks there some years ago and still have a note pad somewhere from the local paper, The Register is it?

Yes, pred causes brain fog but so does PMR itself, it is common with autoimmune disorders in general. The same applies to the fluid retention/swelling of feet. I found manual lymph drainage very helpful there, no side effects and well worth a try.

There is no level of pred to strive for except you are looking for the lowest dose that gives you the same control of symptoms as the best result you achieved at a higher dose. Once you have established that - on the basis of symptoms returning as you go down lower - you stick there for a few months and then try a small reduction to see if you can get lower now. It sounds as if for the moment 10mg is the point and you may need a few days at 14mg to master the returned inflammation and then go back to 10mg to see if that is the case. many doctors suggest a week at the dose you failed at plus 5mg to do that. You should get away without a slow reduction if the 10mg was right for now. But yoyoing the dose of pred makes things harder - every flare seems to make the next reduction a bit harder.

Your mention of scalp problems makes me suspect you may have a degree of GCA that is causing your PMR symptoms and that may mean you need a bit higher dose to manage them. Don't confuse your doc by telling them the symptoms vary through the day - we know that but we know a lot about how PMR affects us that seems to be surprising to medics.

How long? Until the autoimmune disorder burns out and goes into remission. As long as it is active you will need some pred - though it may not remain at 10mg for ever. I got stuck at 9mg for a very long time until I slowed down my reduction techniques to this

healthunlocked.com/pmrgcauk...

which enabled me to get to 4mg but there I am stuck quite firmly. I have, by the way, had PMR for over 10 years - to my knowledge it hasn't burnt out in the meantime and then I have had a relapse. However - once you have an autoimmune disorder it doesn't go away altogether. Like a volcano it may become quiescent for a time - but it can always break out again at some point.

[Hidden]

PMRpro Have a few more questions, what is the best way to take your prednisone, is it better to take it once a day or split it up, half morning and other half afternoon. My rheumatologist suggested the split. How fast do most people react an increase in prednisone. I see people talk about flares, what causes them and how do you handle them, since I have had PMR, I would decrease my dose as directed by my doctor, get to a point where I couldn't take it any longer, call him, explain my problem, he would up my dosage by 2 or 3mg and in 2 to 3hours I would feel better. Today was a different case for me for the first time, had mentioned I tapered to 9mg had problems, went back to 10mg for a couple of days but no help, kind of figured that might happen, because in the past needed to go 2 or 3mg, but I thought I see if this time it might work and it didn't. Got up this morning felt pretty good, went to work, most of the time the more active I am at work the better I feel, not the case today, about a hour after being there, the top of my scalp was tingling and burning, sometimes all of it , sometimes just the back, then both of my lower jaws started feeling tight, this would come and go, had a headache off and on, left shoulder and upper arm would ache, so I am thinking better call and get a little more pednisone. Couple hours later nurse calls back and says make you total 12mg, I said I took 5mg this morning so add 2mg more now and then take 5mg at supper, she said that's right. So like I said in the past in couple of hours I usually start to feel better, not today. Now I am feeling worse, now both lower jaws really feel tight, scalp still burning, headache, just plain ache all over, before I left work I called doctors office back or course they are closed, get the after hours person who hooks me up with the on call doctor, I explain my problem, he says go to a total of 20mg for today and the next 2 days then see your doctor on Monday , so I took 8mg more, now probably be up all night. This doctor suggested taking 20mg in mornings instead of splitting it up, so I will try that. I ask him about GCA, he said by looking at my chart my markers didn't show any signs in the past, Has something like this every happen to you? I am hoping to learn from reading different posts, how to handle my future with PMR