Have to increase dose again!

This has happened to you before freesia hasn't it? It is all very well reducing - but if the underlying disease is still present the inflammation will resurface and cause symptoms. And, as one thought about PMR is that it is associated with poor adrenal function to start with, once you are about 7 and below you are taking less artificial corticosteroid than your adrenals would make anyway. So if you take less and your adrenals aren't able to compensate, you will feel ill, either with PMR symptoms or steroid withdrawal symptoms. Since both are quite similar that poses a problem. PMR pain starts and gets steadily worse, steroid withdrawal starts and then gets better after a couple of weeks or so if you can stick it out.

Another option would be to really slow that reduction down: take the 4.5mg on one day a week but 5mg all the other days for the first 2 weeks, then on 2 days a week for a couple of weeks, then 3 days and so on so that it takes about 3 months to get from 5mg every day to 4.5mg every day. Wait a bit and then start to do the same for a drop from 4.5mg to 4mg. Space the days on the new dose out.

But a dose of 5mg is really no big deal - many people take that every day for life and if you have few side-effects (and it shouldn't be a problem at that dose, it isn't an excess of pred and that is what causes the problems) don't panic (I know, it's the doc who needs to know that ;-) )

Ragnar is the expert on slow reduction - someone has asked about it on the Lucia thread, which will be way down on page whatever since they haven't introduced ordering the posts by the latest comment on them yet.

Eileen

Hi Eileen,

Yes, it has happened before. I really should know what's going on by now! Something always happens to muddy the waters, like falling down and possibly hurting my knees. Actually, I sort of do feel as if I am getting to know the disease and don't get quite as panicky when issues arise. A knee injury probably wouldn't affect the CRP values (?) and a test like that might let me know what is causing the discomfort.

I didn't realize that PMR was associated with poor adrenal function. I guess that wouldn't be easy to detect in a blood test (?).

I think I'm getting too anxious to get off pred--I know I should be reducing more slowly in the way you describe, but I want to be off it. My rheumy told me that she has reduced people by .5 mg every two weeks, but I wonder if their CRP was the same as mine? Or (as you suggested once) if they had PMR? When I talked to her on the phone last month regarding the new blood tests, she said to stay on 4.5 for a month.

I have an appointment with the rheumy today and hope I get some of these issues clarified. I think I need to resign myself to a slow Ragnar-style taper. She doesn't seem to do tapers that way and I feel like a rebel for even suggesting it to her!

Thanks for your help! : ) You should get an award for being patient and explaining tapering over and over!

freesia

Help! I saw my rheumy today. I told her that I am in pain most of the time, sore and stiff, and it seems like it's as bad as it was before I was diagnosed. I told her how hard I am trying to taper but I just can't go any further, 4.5 isn't working and even 5 doesn't seem to be enough.

My CRP that was done two weeks ago was 1.9 (for this lab's test, a value of .8 is normal) and my ESR is 31. (She said the ESR could be high because of the anemia). So my CRP is up from 1.5 in January. And I bet it's even higher than 1.9 now.

So she is switching me from prednisone to hydrocortisone, which is taken 2 times a day. The idea being that perhaps my body is too used to prednisone and I can trick it by changing drugs. I thought that prednisone was the only drug that worked for PMR ???

I'm really confused now. I wish I had asked more questions while I was there, but as usual I couldn't think. My main goal was to try to get across to her the trouble I'm having trying to taper. Shouldn't she have addressed the fact that the inflammation is worse? She did say I looked more stiff than usual.

I am trying not to be upset, but I am beside myself. For some reason I also feel that hydrocortisone is going to be more toxic to me than prednisone was.

Any input will be much appreciated. Thanks!

freesia

freesia

I know nothing about hydrocortisone so I went to wikepedia. Take a look it is long and takes some reading, but what struck me was that is said " in place of prednisolone in patients who need steroid treatment but cannot take oral medication, and perioperatively in patients on longterm steroid treatment to prevent Addisonian crisis".

I am sure others wil be along who know much more than I can. But one thing I do know, I would ring her up and tell her you are totally confused and ask the questions you have written down before ringing her and get some answers.It is your body and also you should not be left feeling confused and stressed.

Freesia

I'm wondering how long you stayed on 5mgs? Do you remember me saying that I had to stay there for between 5 and 6 months the second time around following a flare at 5mgs the first time, necessitating an increase back to 10. We've spoken about this before and said how difficult it can be to reduce below 5 and I remember suggesting to try sticking at 5 for several months followed by one day at 4.5, then 6 days at 5; two days at 4.5, then 5 days at 5, etc.

I second MrsK's advice to question your rheumy - for instance has she a reason for considering that you should not increase the steroids but introduce another medication? Certainly painkillers appear to be fairly useless in treating PMR and it seems that steroids remain the best and only choice.

Once you get some answers, you will be better able to make an informed opinion.

All the best,

MrsO

Hi mrs k and MrsO,

Hope I made that clear that the doc wants me to stop the pred and replace it with hydrocortisone. Thanks so much for your input. I think I need to call her and ask about all these things that are bothering me.

MrsO , regarding how long I've been at 5 mg--I've been trying to taper since last June (2011), when I was on 6 mg. Looking at my calendar I can see that each month I'd get down to 5.5 for a few days and then go back to 6. I was at 5.5 for the first two weeks of this January (2012), dropped to 5 the second half of January, and dropped to 4.5 at the beginning of February.

I don't think the problem is the prednisone, I think the problem is that there is still inflammation and it comes back when the pred is reduced! I'm basing this on what Eileen always says about PMR being like a brush fire that is damped down by the pred, but if you take the pred away and the fire is still burning, it will get worse.

I know my rheumy is anxious to get me off prednisone but replacing it with another corticosteroid seems just as bad. I don't get it. And apparently if I stay on hydrocortisone it's a really slow taper to get off it.

Thanks again for your help.

freesia

Freesia

I've copied the paragraph from your last post below to which I am replying (so difficult when we can't read the post as we're replying).

"regarding how long I've been at 5 mg--I've been trying to taper since last June (2011), when I was on 6 mg. Looking at my calendar I can see that each month I'd get down to 5.5 for a few days and then go back to 6. I was at 5.5 for the first two weeks of this January (2012), dropped to 5 the second half of January, and dropped to 4.5 at the beginning of February."

Freesia: You say above that you were at 5.5 for the first two weeks of this January and dropped to 5 the second half of January and from my experience that could be too fast for some of us at this low dose. The lower the dose you are on, the higher the percentage drop. I took about 6 weeks to do the half mg taper (I explained my method in my previous post) and then stayed there for a couple of weeks to ensure that any resultant withdrawal discomfort had disappeared.

Food for thought perhaps.

MrsO

Mrs O, thanks so much for your kind reply! You are so right. I was trying to follow my rheumy's tapering method which is .5 mg every two weeks. She claims she has had patients taper that fast and even faster. I should have asked her if they had PMR! I know from the experience of you and everyone here, that that is way too fast. But I said, "well, she's my doctor, maybe she knows something I don't know, so I'm going to give it a try."

Maybe I'm dumb or there's something I missed that the doctor said, but I'm still trying to figure out her reasoning for changing medications. If a patient comes in and says "I'm hurting worse" why change them to another corticosteroid at the same dosage level? Wouldn't the answer be to just "up" the prednisone dose? I don't get it. All I can figure is that she is hell-bent on getting me off pred, and thinks that switching to twice-a-day medication might help ease the tapering process?I don't want to be on pred, either, who does, but if it can't be done, it can't be done. It all makes me feel as if she doesn't understand the nature of the disease. I don't know, I just don't get it. emoticon, emoticon LOL

freesia

Hi all, I mentioned I was seeing my Rheumy at the end of this month and that he was maybe going to change my medication. I have seen my gp before going for my appointment and she says it might be changed to Azathioprine. Could anyone shed some light please. I am currently on 7mgs and not doing too well.

Thanks

Certain drugs can increase the effect of the pred dose you are on. Because of this some rheumys try using them in patients with PMR to try to reduce the pred dose. The most commonly used ones are methotrexate (MTX) and azathioprine (AZA) - both drugs usually used for rheumatoid arthritis and also in cancer treatment at much higher doses and they work on the immune system. They are used alongside the pred to try to get you onto a lower dose - you shouldn't be "changed" to another drug, the only reliably effective drug to deal with PMR and GCA is pred and other drugs don't deal with it on their own.

There are mixed opinions about their use in PMR and GCA. There have been a few small scale studies done under controlled conditions - but all slightly different so it isn't possible to add them all together and get a more meaningful result. Some suggest that giving the patient MTX can lead to them needing a smaller total dose of pred - but it takes over a year to see any real effect in the steroid dose. Other studies found it didn't make a significant difference. So the jury is still out - and the big boys (and girls) in the field published a review of management of PMR and GCA last September which said just that: not proven and requiring more study. There are a few people here and on the other forum who have been tried on MTX for PMR. It seemed to work for a while for some and then the effect stopped. On the PMR and GCA northeast support group site there is an article by a lady who was put on MTX and has been able to get off pred altogether. AZA is a similar type of drug but I don't know of anyone who has had it for PMR - maybe someone will appear!

About a fifth of patients who are originally thought to have PMR later have the diagnosis changed to LORA (late onset rheumatoid arthritis) - they can be very similar in appearance and easily mistaken for one another. I suspect that the patients who do well on these other drugs didn't necessarily have PMR and so the RA symptoms respond to the MTX or AZA. Pauline from Dublin (this forum) had her diagnosis changed to RA and was started on MTX, it is the first line treatment for RA, cheap and well known and tried and tested. After several months with little improvement she was taken off it if I remember rightly. It doesn't work for everyone and some people need more than one drug.

Although these drugs are used in cancer and RA, in PMR they are used at lower doses so may not be associated with the side-effects seen otherwise. But MTX is not a drug with no side effects and many patients feel very sick after taking the weekly dose, many RA patients take it on a Friday night so the "hangover" has gone for them to go back to work on Monday (RA patients are generally much younger than us). You need regular blood tests to monitor your liver function and are often recommended to not drink any alcohol at all - that's disputed too! You also need to take folic acid (and an adequate dose) to avoid the side effect of mouth ulcers and possibly hair falling out. I don't know about AZA side effects/monitoring I'm afraid. Usually the side effects improve with time - the first couple of months are the worst.

We've talked about this on the forums quite a lot in the past. Personally I would want a lot more back up to any doctor's claim it will help me. My rheumy here in northern Italy is adamant the evidence is not enough to back their use so I won't have that fight on my hands. We came to the conclusion that it is a very personal decision. However, it is unlikely that the other drugs can replace the pred altogether - and although we have heard of doctors who are claiming that we haven't come across any patients. I have no idea where they get that info from, none of the most recent publications on management of PMR or GCA say that. They say very clearly that pred remains the mainstay of management until further studies have been done. My opinion is that I will try them (if necessary) once I am sh

Thanks Eileen for your reply, I'm happy to stay on preds for as long as is necessary now I just need to convince my rheumy. Will let you know the outcome.

Lupe

Shirley - it's only when you come over to the forum directly from your email notification that you can't see the post you are replying to. What I do is look at my emails to see if there is anything new but log onto the site the old way, not via the email notification. Then you get everything showing up - and do remember that a new thread may have been started by someone and you won't get a notification until AFTER you have joined in the discussion so you could miss it altogether.

Now I'd like to know why part of my last post is missing - is there a limit to the length? If so it would be nice if we were told that when we get to it so we can start another post rather than losing information. It could have been the really important punchline.

Eileen

It just registered after I pressed post Lupe - the bit that's missing DID have the imporant punchline! I have a link to a reference about the management of PMR and GCA with mention of the use of the adjuncts written by the really big boys and girls in PMR/GCA. If I post it here it will disappear until it is referreed but here is the reference to show your doctor and ask for his opinion if you want to. It is on Medscape which isn't that difficult to register to use, but the original reference is:

Polymyalgia Rheumatica and Giant Cell Arteritis

Management of Two Diseases of the Elderly

Christian Dejaco; Christina Duftner; Bhaskar Dasgupta; Eric L Matteson; Michael Schirmer

Posted: 09/13/2011; Aging health. 2011;7(4):633-645

The authors are members of the EULAR (European arthritis blah blah) group who have been working on defining the criteria to diagnose PMR since 2005 and which are also now available, published in the last month or so. This reference is one of the most recent publications about managing the illnesses but it includes some points that we, as sufferers of the darned diseases, have managed to work out for ourselves despite our lack of medical degrees. Seems a shame a few more doctors haven't read it.

Eileen

And just in case they spot that reference - here is a version to explain why it has disappeared and what it's about:

It just registered after I pressed post Lupe - the bit that's missing DID have the imporant punchline! I have a link to a reference about the management of PMR and GCA with mention of the use of the adjuncts written by the really big boys and girls in PMR/GCA. If I post it here it will disappear until it is referreed but here is the reference to show your doctor and ask for his opinion if you want to. It is on Medscape which isn't that difficult to register to use, but the original reference is called

"Polymyalgia Rheumatica and Giant Cell Arteritis. Management of Two Diseases of the Elderly"

The authors are members of the EULAR (European arthritis blah blah) group who have been working on defining the criteria to diagnose PMR since 2005 and which are also now available, published in the last month or so. This reference is one of the most recent publications about managing the illnesses but it includes some points that we, as sufferers of the darned diseases, have managed to work out for ourselves despite our lack of medical degrees. Seems a shame a few more doctors haven't read it.

Eileen

Eileen

Many thanks for that explanation - I had noticed that on occasion the answer box was there but hadn't realised how and why! Doh!!!! I suppose I'm not allowed to blame steroid brain any more, probably more to do with old age brain now!

Shirley

Shirley