I have been lowering (second time round!) the pred, and have on my rheumys instructions, got to 10mg....I am in lots of pain, so have upped the dose to 11mg the last two days....it`s easing abit, but my question is and it may sound silly.... is there a point where you always get stuck at a certain dose and can never lower?? This worries me, because of the threats of what steroids can do to me (Rheumy) but there`s just no point in lowering if I`m housebound with pain! I previously got to 7mg, and had major flare, this has been going on for 3 years now. I know tolerance comes into play, but any suggestions welcome, thank you!
How are you trying to reduce? I got stuck at slightly under 10mg for a long time - the difference seemed to be when I went about reducing in a much much slower way and it seems to have worked for a lot of other patients who also had difficulty getting below 10mg (or some even higher).
Follow this link:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
and then scroll down past that first post to the replies section. The first 2 or 3 posts are about a reduction scheme: "Dead slow and nearly stop".
It is being looked at by one of the PMR research groups - it has worked well for a lot of people so it is well worth a try. The pain is not always the PMR - sometimes it is your body having to get used to being without its usual dose of pred.
Some people have awful side effects after a few months of pred, others take pred for years without any trouble. I've been on it for over 6 years and haven't crumbled yet. I put on a lot of weight - but with application have lost it all again. And using the dead slow approach I'm now at 4mg having never managed below 9mg before.
Hi Linda,
I think for some people, the answer might be yes! However, there are things that you can do which might help. Firstly, as you say go back to a level where you feel okay, stay on that for a few weeks, then try reducing using one of the slow methods (if you aren't already), and I found once I got below 10mg it was was better to reduce by 0.5mg each time. Some people are a lot more sensitive than others to the reductions.
You also need to remember that, around this level your own body should be starting to kick back in with its own cortisol production, in some people that takes longer to happen. Your body hasn't had to do that for the last 3 years whilst on Pred, so it may be a bit reluctant to do so. That why the slowly, slowly, tiny reductions are better.
If you try both these suggestions, and things still don't get any better then you can request a test to check whether your adrenal glands are actually working.
But give it time, I know it's frustrating, but I'm afraid PMR/GCA won't be rushed, despite what the doctors think, or the patients want.
I also have had PMR for over 3 1/2 years and until a year ago was completely alone (apart from Doctor and Rheumy!). Thank goodness I then 'stumbled' across this site.
I started on 40mg of Pred, but ESR and CPR kept rising and I was put on 60m, then I was hospitalized (I had Sepsis). I'm telling you all this because we are all so different, but the pain and discomfort are terrible at first. However, things do improve - for some it takes months, for others, unfortunately, years.
I was eventually able to get down to 6mg (a few flares between). I then tried to get down to 5mg but got stuck. I've tried several times to get below 5mg, but so far haven't made it. Quite a few seem to get stuck on 5mg, I don't know why. Have patience, we'll get there.
We all worry about the steroids, but we have no choice. Learning to accept this is one of the most difficult things.
Kindest regards from Constance.
Constance - if you haven't already done so, do ask your doctor to arrange a synacthen test (adrenal function). It may be your adrneal set-up is being a bit unwilling - then at least you would know.
Thanks Eileen. Every time I go to the Drs I mean to ask about the test. I have an appointment next week and will write it down and put it in my purse.
What happens if the adrenals don't kick in?
Thanks for the info...I do reduce very slowly...0.5mg 4 to 6 weeks...it just seems that approaching 10mg the pain slowly kicks in, but I think maybe I should do it even slower...I have posted on here before that I get very blurred vision if I take all pred at once, so have been having 8mg with breakfast and 2/3mg with evening meal....not sure how else I can take them, or if this is adding to the problem. I do get palpitations when taking over 8mg, but I am used to that...it`s the vision/balance problem that is difficult...Thanks again
You stay on a low dose of pred which acts as a replacement therapy - just like insulin in diabetes or thyroxine in hypothyroidism.
Nefret on here is on 5mg for life for exactly that reason.
Hi Linda,
I notice from reading the Forum for quite a long time that many PMR’ers seem to have the frustration and resulting pain as prednisone tapering drops into the 7 to 12 mg range.
Likewise, during my 19 months of PMR, I have had a similar encounter with increased pain after my first several ‘flares’ occurred in the 9-12 mg range. Maybe I was not tapering slowly enough; however, my rheumatologist reviewed my blood tests and the taper rate and recommended that I be on methotrexate (MTX) with the intent that I would stay on MTX for the entire time that my prednisone taper was actively being reduced down to zero. She identified that some of my symptoms developed from my preliminary long term steroid use and that methotrexate would assist me in maintaining a long taper to zero with less pain.
Research made me a bit nervous and I recognize that many on this Forum do not like the idea of being on a disease-modifying anti-rheumatic drug (DMARD) such as methotrexate but these drugs do dampen down the underlying disease process rather than simply treating symptoms and research shows that MTX reduces the activity of your immune system which typically is overactive in PMR conditions.
I do not appear to have had any side effects (hair, weight, etc.) and thus I think that there is some significant benefit from using a DMARD such as MTX – and the required side dose of Folic Acid prevents some of the side effects.
I am in full agreement with Eileen’s information on a mandatory slow taper and the “dead slow and nearly stop” concept - and along with the MTX it is working well for me. It is now about 15 months since I started with the MTX and I am at the 4.5 mg pred level and all is going relatively well. Joint muscle aches (shoulder, thigh, etc.) are at a relatively low background level and a mild flare stopped with a small 1.0mg pred increase for two months.
C-reactive protein and ESR test results are in the normal zone.
One reason that I think MTX has a definite effect is the pain/ache feeling in relation to the day that the MTX dose is taken. Along with the daily prednisone dose, I take 25mg of MTX once a week on Mondays and there is a distinct background pain/ache reduction by Tuesday pm that improves even further during the week, then by Saturday pm and Sunday the pain/ache starts to creep back, and this is a constant. Thus, I’m sure the MTX is a positive benefit that aids the pred ‘taper’ process and allows me continue the slow taper without the horrible pain increases.
Dave
Thank you Dave, my Rheumy has "threatened" me with MXT, if I don`t lower quick enough.....I don`t tolerate medication very well, and my sister who does, recently took just two tablets...one each week of MXT and was very ill...it affected her liver very much (non drinker!)
It`s nice to hear of people being helped with other meds....but I`m afraid I will have to plod on....and hopefully find the level that eases the pain...and then do very slow reduction as Eileen tells us, and hope for the best! Thanks for your replies everyone....
Eileen,
The need for maintenance low dosage of prednisone is this always related to problems with the adrenal function? If no, what other things might cause this need to stay on the drug?
It's difficult to say - if the adrenal function isn't good then a low dose of pred may be needed for that. But it also seems as if some people never really get rid of the autoimmune disorder and some of the PMR symptoms remain long term.
I don't know whether they test people who really cannot get off pred for adrenal function - it has been acknowledged for many years that there are likely to be some people who need a low dose of pred for a very long time, even for life. I do know of one man who had been on a lowish dose of pred for 11 years before finally being able to stop. Some autoimmune disorders never go into remission - it depends on the person and the disorder.
As far as it is known MTX doesn't have an effect on the PMR itself - it changes the way the body metabolises pred so that a lower dose achieves the same result.
However - PMR is just the name given to the symptoms and it can have a lot of different causes. It would maybe be better if the PMR we talk about here were to be called "pred-responsive PMR". Not all PMR does respond to pred - and then it is due to something else. One very common cause is another inflammatory arthritis - maybe psoriatric arthritis or late onset RA. These will respond better to a DMARD and MTX is the first line approach for them. It is also possible to have both PMR and another arthritis at the same time. In those cases you might find that MTX makes a positive difference. Or the immune system is doing something else - and MTX damps it down.
There are so many different possibilites and no real way of identifying what is going on except trial and error. The attitude in the past has been to reserve MTX until a later stage, until repeated problems are had with reducing pred or where the patient is stuck at a high dose. It is one thing adding in MTX when a patient is just on pred - but when they are taking multiple medications for other problems the fewer additional chemicals that are introduced the better because the interactions are not known. Anecdotal evidence from the forums does show that approaching the reduction in a very slow manner - slow in terms of the size of step not necessarily time - does achieve a lot without more drugs. There remain people for whom even that doesn't work - but they do seem to be in a minority.
Hi Eileen,
Yes – I like your thoughts and explanation – however, I do see some quite positive MTX results in quite a few of the studies I’ve read from your Italian “Buddies” ( !!) Cimmino, Gerli, Caporali and others from the Italian Society for Rheumatology, Università di Genova, Italy – right at your back door !
They conclude that using MTX has allowed the use of less prednisone over relatively short periods (1 year) to control PMR still providing the desired results and in some research, the mixture of prednisone and MTX has been linked to shorter prednisone treatment and steroid sparing and the reduction of the risk for steroid related toxicity.
Related to the long term dosage of MTX, amongst many other items, research demonstrated that patients showed less residual inflammation and it also allowed bone sparing for those at the risk of osteoporosis related issues.
I have a feeling that there is just a lack of communication between all the medical professionals across the world that should be more caring and should be tying together all the PMR related research and following data from sites like Patient and the associated forums and groups to increase their assessment of the disease. There’s such a lot of information out there, but no one wants to spend the time or energy to put it in one ‘bucket’ and come up with some good, realistic answers.
Dave
I may be wrong, but if my memory serves me right I think you will find that that was one of the 3 studies I mentioned. You also mention the "short period" and that is the crux. Other studies found that over longer periods there was very little difference in the amount of pred used - and that is something that can only be done retrospectively after considerable time. Since very few patients have their disease go into remission in a year it is the other time spans that become of interest. Two ladies I know were put on MTX and in the first few months apparently did well, being able to reduce their dose of pred considerably. Both then experienced major flares and one even developed GCA which sent them back to the original dose or even higher to control the inflammation.
The autoimmune component of PMR probably cycles, waxing and waning over time, but there is no way of measuring it. Put a patient on MTX at a point that coincides with a waning of the activity and it will appear that the MTX is making a difference when in fact the patient would probably have been able to reduce fairly well anyway. Then it increases in activity, the current dose of pred is no longer adequate to manage the resultant inflammation and the MTX does nothing - result: flare. There is no way of doing controlled studies as the patients are all so different in both the manifestation of the disease and their response to pred.
I think you might be surprised at just how much "putting it all in one pot" and communication is already going on and how much patients are included. The working groups are international and they meet on a regular basis and there are patients who are contributing members. There are review articles that have looked at all such studies and all have come to the conclusion that while in isolated cases MTX may have a role to play there is no evidence for it to be universally used. If there were they'd use it rather than pred - in the UK it is the first line approach for RA so it would be logical to use it there at least. But in the case of GCA it does nothing - and it is unethical to use it (or anything else) instead of pred because of the serious risk of loss of vision. It is becoming clearer that many patients have PMR symptoms only that are actually due to GCA in places other than the temporal artery, there is a greater overlap than was first thought. GCA can affect arteries all over the body - and doesn't have to get to the cranial arteries to cause a lot of pain and disability. The invention of imaging techniques over the last 10 years has made big advances in that sense - but they remain expensive and less accessible outside research for various reasons, not least the lack of funding for research of this sort.
PMR is just one of a very wide range of rheumatic and autoimmune disorders - and while as a patient myself I appreciate how disabling and painful it can be for us all, if you are going to suffer from a vasculitis then I think PMR is the one of the better ones to have, GCA is probably next in line. And before you all come down on me like a ton of bricks I recommend you go to VacullitisUK's forum and read some of the stories there, many of them involving people in their teens and 20s with little hope of a normal life in the long term. Sometimes, given what they deal with day after day, I feel it is no wonder that rheumatologists are a bit dismissive of patients with PMR. Whether that is a right attitude is another matter of course.
Eileen,
I appreciate the great information. You really encourage me to think that the “pros” really care about us.
Yes – the timespan is such an important criteria that is not clearly discussed in the paper – and as you say, few of us (from what I hear on the Forum) seem to have a short time to remission.
I’m hoping that my adrenal system doesn’t believe in cycles and is just saying “thank you” for the MTX (!!) and that my version of vasculitis is indeed the ‘nicest’ one to have.
Dave
Evidently men react differently to women with PMR. Why this should be I don't know, so you really may be one of the lucky ones.
I can't remember reading of one man on this forum that has had PMR over 3 or 4 years.
Constance
Probably the "H" word....hormones like everything else....unfortunately!!
Probably right Linda - though I do know of one lady who had a male friend who was on pred for 11 years. He did eventually get off it though and the PMR didn't return.
He really did listen to you then, and did slow, dead, slow!