Reject meds that are not specified for PMR.

To be fair, if you look at the data sheet for almost any drug you wouldn't take it! Aspirin, paracetamol and ibuprofen are almost as bad! By law the manufacturers must mention everything that could happen - many are VERY rare.

That said, I personally don't understand the desperation of many rheumies to use MTX in pred. There is no good evidence it makes a significant difference in the long run - there have been trials.

For some time it was a recommended course of action for patients who needed to get off/reduce pred and couldn't reduce to an acceptable level or were suffering severe side effects. In the meanwhile it has been realised it really doesn't work that well and has been removed from the latest guidelines.

"What is just as interesting is the complete lack of PMR as an indication for the use of Methotrexate" - as I say, that isn't entirely true. It has been part of the option for getting some patients to a lower level of pred - but usually not suggested until the patient is down to 10mg pred and has had several flares as a result of trying to reduce and so posing a problem. On the other hand - I understand it is used routinely alongside pred in Germany.

 

On predict since mid May. Started on 60!! Then 20 next day then 15 2 days later then 12.5. one week later and then 10 with program for 1 mg/mo reduction. Had flare trying to go to 8. Now back at 10. Rhuemy wanted me to reduce faster because of osteoporosis risk so was starting me on Meth to help out the pred. 

If you were diagnosed with PMR then the simplest way of avoiding the osteoporosis problem is to start on the recommended dose of pred for PMR: 15 to 20mg/day. Only GCA requires a dose of 60mg and then you are balancing the risk of loss of the patient's sight versus maybe osteoporosis. Because only about half of patients on pred actually develop osteoporosis and it can be avoided by using bone-protection meds anyway. I have been on pred, most of the time well over 10mg/day, for nearly 5 years. My bone density barely changed in the first 3+years when I had been above 10mg for almost the entire time. Immobility is just as big a risk for osteoporosis anyway. 

I would suggest that sticking at 10mg for a year is a good idea - see the Quick and Kirwan paper in the first post of this link:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

You understand correctly,Eileen.   As a newcomer to PMR over 3 years ago I was sent to a "specialist" rhuemy - he asked me two quetions about pred and insisted I take Metho.  I was in his surgery 3 minutes.  I never went back!  Changed to new rhuemy and he said, after about four months, take Metho.  Thought I'd try it - massive allergy!!!  Goodbye Metho!  Never again!

Constance

Yes - Christina is right - you should have been sent for a dexascan if your rheumy is so concerned about osteoporosis> I'm sure what he SAYS is very caring - trouble is, his medicine is very poor. Like her I'm really NOT surprised you had a flare at 8mgs - the scenario was set far before that level was reached.

Rheumy has written order for Dexscan. I plan to get it after holidays. Thanks for input on Meth indications.

The 60mg start was from the GP who recalled some PMR symtoms but was off base on dosage.

Fair enough - and he did actually reduce you to the more normal dose immediately. One can only ask why he didn't google "pred dose PMR) before writing the prescription! 

When you get to a dose of about 9mg and going further brings back the pain then you have actually achieved what you set out to do - you have found the dose of pred that is managing the symptoms AT THE MOMENT. It does not mean you will not get lower but it means the activity of the autoimmune disorder is such that this is what you need. Once you are below 10mg you are into the realms of almost physiological dose: the amount of corticosteroid the body makes anyway. The body isn't making it because it knows there is some there - like you central heating boiler obeys the thermostat saying there is enough warmth present. Few doctors worry greatly about doses around 7.5mg - for a man, who is probably larger than the average lady patient, 8 or 9mg is fine. 

The trick is to reduce in very small steps, waiting for a bit between drops to make sure the new dose still works. As soon as you hit the dose where the pain comes back then return to the previous dose you were fine at and stick there. Don't react by shooting back to 15 or even more - unless you have been daft enough to let the inflammation really get entrenched again in which case adding 5mg to the dose where it happened is advisable. Slow reductions, in line with the reduction plan discussed repeatedly on this forum, have proven to allow many patients to get to well under 10mg/day without resorting to MTX or any other drug. It is all to do with how you go about it.

It's very indicative that the most mentioned "trouble" spot is 8 to 10 mg. it is surely linked to the adrenal production. I'm fairly well controlled at 10mg right now but hard to differentiate between PMR and age related problems. 

Hello paul, the question of adrenal production re the 10-8 mgs reduction stage I cannot answer. But I have my suspicions that the question of flare ups at this stage is a huge contributory factor re drs putting their patients on mtx. If you look up PMR on most websites many of them state that the condition lasts for approx 2 years and that some of us may experience flare ups. Well, for us sufferers we know that the expected length of the condition of 2 years is greatly understated and also the question that some of us, should be changed to many of us will experience flare ups. I really do believe that drs look at this explanation of our condition and attempt to fit our recovery timeline into the 2 year period, hence putting us on mtx in an attempt to speed up our recovery time. As I have said on another thread, PMR is an inflammatory condition that although self limiting will die down in its own time and no amount of masking the condition changes the fact that the medication we are given only masks the condition, it does not cure it. So I do believe, and believe me I no more want to be on preds than anyone else, that softly, softly catchy monkey, I'm sticking to preds for as long as possible. 

Oh and I base my theory on the fact that many drs prescribe mtx on the first flare up stage, and therefore do not really allow the condition to burn out in its own time or for the preds to work in unison with the flare ups.

all the best, christina 

No, I don't think so. Being short of corticosteroid causes different problmes to PMR or steroid withdrawal. 

I think it is far more likely that it is at this stage that the percentage reduction suddenly goes above 10% and few people think of that. Many patients have problems with the speed their doctors try to get them to reduce even above 10mg - hence the push on here to go SLOWLY. The Bristol group find keeping at the 10mg mark for a year reduces their flare rate to 1 in 5 rather than 3 in 5. If there are going to be flares it is probably below this level and then the very slow drops should be added in. This is what has been the case using the slow reduction touted on these pages. 

But anyway - that is probably also the level at which people come up against their first "This is your maintenance dose for now". Reduction is NEVER a steady reduction to zero - it may happen for the very very lucky but I haven't met anyone yet. The slower you procede the more likely it is to be smooth - but the published reductions which many doctors attempt to stick to are too fast and don't allow for that aspect. As Christina has said - PMR all too rarely lasts 2 years or less, maybe a quarter are that lucky, but then are at a far higher risk of relapse. On standard reduction plans people are getting to 10mg within 6 months - long before the autoimmune disorder has faded. The Bristol plan allows for that to some extent - our reduction plan allows for it absolutely.

Also in USA, at Cleveland Clinic ( rated #2 in US in rheumatology) last summer and was not presened with a program with these harsh drugs.If I remember correctly the doctor was against methotrexate. And agreed with the slow reduction. I'm only writing to tell a different side to rhuemtotelogical experiences here in the States. These strong autoimmune/cancer drugs have never been suggested. My sister has RA/psoriatic arthritis 20 years and has slowly progressed thru them. 

Thanks for your informative history. I am very glad to hear that progress is being made here in the field. In as much as my pain is under control, I am not going to play with Methotrexate any further. They say "he who treats himself, has a fool for a doctor". However we would be worse fools not to monitor our treatment as to currency, validity, and efficacy.

The only real difference about Rayos (called Lodotra here in Europe) is that it releases 4 hours after being taken. Research showed the optimum time to take ordinary pred to avoid morning stiffness is at 2am, Rayos/Lodotra allows you to take it at 10pm, it releases at 2am and the peak blood level is reached at 4am, just before the cyotokines that cause the inflammation, leading to pain and stiffness, are released in the body at about 4.30am. If you are on too low a dose to control the inflammation or you are one of the unlucky people in whom the effect of pred only lasts for 12 rather than 24+ hours then the pain will just appear in the early evening instead of overnight.

Trials using other drugs are also running in the UK. None has yet shown any results that can be applied generally since the drugs are terrifically expensive and when used in large numbers there are more people who suffer nasty side effects. Leflunomide (Arava) appeared promising, inducing remission in 22 out of 23 patients in a pilot study. If it is going to have side effects they can be llife-threatening and I know someone who was doing well - until one of the really dangerous side effects appeared.

I would not want to be placed on any of them except within a clinical trial with all the documentation and monitoring that is attached. Used well and carefully pred does a very good job - the problem is the rather gung-ho techniques many doctors seem to apply. You CANNOT reduce fast - the PMR symptoms will just come back - and you CANNOT reduce too far because if the autoimmune part is still active - the symptoms will reappear.

Hi Eileen – Apart from wanting to wish you a great and healthy New Year and to thank you for all your wonderful professional help that you give to all of us on patient.info, I wanted to follow up a bit on your thoughts about the future of drugs, other than prednisone, and procedures that are being studied for PMR and similar diseases.

My rheumatologist seems to be well respected (I checked with members of UCLA medical groups) and has a sound background with PMR patients. Surprisingly many rheumatologists in the US do not have a large number of PMR patients – it must be the Northern European issue.

Like I mentioned in other discussions, she seems to be most concerned about reducing Prednisone to below 5 mg and if it is necessary to maintain prednisone, to keep the dose at 3 mg or less. This is apparently based on recent professional studies – I’m not sure which they are.

As it seems that the common pain rebound medication level for prednisone seems to be around 8-9 mg and rather than permanently increasing prednisone (some temporary increases given for immediate pain reduction), she incorporates other medications such as methotrexate along with the slow prednisone reduction (no faster than 1 mg per one to two months).

As I mentioned before, I have been diagnosed for 10 months and been through significant cycle changes including the introduction of methotrexate.

Having checked with many others, I realized that most doctors do not have a really good instant overall grasp on each patient’s pain levels, medication and blood test results, and PMR seems to require this range of information for review of a patient’s condition more than many other diseases. To keep my rheumatologist aware of my day-to-day condition, I prepared a spread sheet chart to demonstrate what is happening to me with one glance and can be handed to them at an appointment or sent via email to my doctor at any time that I am having problems and need help or have a question. I thought that you might be interested in this idea. As PMR sufferers spend all day feeling good or bad, worrying and sometimes unable to describe their condition to their doctors, I thought that as it takes little time to prepare, every PMR patient could do this. In addition, if this information, comparisons and data analysis could be generated and gathered, it may allow research rheumatologists worldwide to get a better grasp on the variations that occur with PMR. I realize that many patients may not have computer ability to do this, but it could also be done manually. I have attached a link to a web storage that I run so you can see what I am suggesting.

The site is secure – the .pdf file is clean. If you would like the Excel input file necessary to prepare this chart, I could link it to you.

Anyway – this is just a thought that could help individuals connect and rapidly review their condition with their doctors and potentially gather data that would help researchers to help all of us.

Again - the 'Best' and thank you for all your help to all of us - David

Emis Moderator comment: I have removed the link as it was to a site unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

"This is apparently based on recent professional studies – I’m not sure which they are" - I suspect they are the studies that suggest there are still side-effects associated with pred doses as low as 3mg. It certainly isn't any study suggesting it is a suitable dose for PMR because it isn't: you need what you need to manage the symptoms and if it isn't enough then you might as well not bother. It is a balance of the side-effects versus the benefits and if you are getting no benefits there is no point taking it at all. She may claim a sound background with PMR - but she is way off there IMHO. 

PMR is most common in peoples of Scandinavian extraction - earlier studies were done in Olmsted County, Mass where there were large numbers of PMR patients. So if you live in area where there are a lot of Viking genes...

She may add methotrexate. There have been a few smallish studies - one said it helped, one said it didn't, one didn't know. For a while it was recommended as a "steroid sparer" but the indications are that overall it doesn't reduce total pred dose, it may in the short term but in the long run it almost certainly doesn't, there are just as many flares with as without. It has its own side effects which can be unpleasant and constant monitoring of liver function is required. The most recent guidelines actually say there is little role for MTX in PMR. If it works it is possibly for patients who didn't have PMR in the first place - but possibly LORA, late onset rheumatoid arthritis, a diagnosis that is made at a later stage for about 1 in 6 of patients origianlly diagnosed with PMR. They are very similar in early presentation.The same applies at present for most of the so-called steroid sparing medications, most are DMARDs, used in rheumatoid arthritis. I am convinced that better use of pred is the way to go until they have worked out the cause of the underlying autoimmune disorder - only then can they really identify a better medication. 

You will have seen my "dead slow and nearly stop" reduction plan. Most people who have used it or something similar have been able to get to very low doses before getting stuck. I said just yesterday somewhere else that I suspect that the getting stuck at just under 10mg is partly because that is where the reduction of 1mg at a time become over 10% - spread that 1mg reduction over 3 or 4 weeks and the body doesn't notice as much and the steroid withdrawal pain doesn't manifest - because if the pain starts quickly after reducing it is almost certainly NOT PMR returning. If you were fine at 10mg but in pain quickly at 9mg the body hasn't had time to develop the inflammation that causes the pain. It is far more likely to be steroid withdrawal. 

We have suggested on the forums for some time that keeping a diary of signs, symptoms and relationship to dose and other factors is a good idea. While I think that what you have developed is probably ideal - within the UK healthcare system patients rarely have time to sit down before being ushered out the door never mind produce and discuss such a record! The consultant I saw dismissed the diary I had kept of the first week or two after starting pred, folding it and sticking it in the notes, not reading it. I think (as have all other doctors I have talked to) that a 50% improvement in symptoms in 6 hours followed by getting to probably 80% improvement after 2 weeks was fairly suggestive of PMR - but he didn't want to know. I voted with my feet.

In addition to that - very very many patients are not computer literate, many are well over 70 and frail, physically and mentally, not least because of the illness. We on the forums are exceptional really - one forum is part of one of the support groups but the majority of the patients who throng to the bi-monthly meetings have no interest in going "online". And believe me, some of them really are "poor souls". I have advised about a questionnaire that was to be used for surveying patients as well as the Patient Information booklet to be handed out as part of a clinical trial on use of steroids in PMR - I have no idea how some patients will manage to read them even after my changes!

As a patient representative, I am part of a research group which has been considering the various variations of symptoms of PMR to develop something similar to what you describe. Google OMERACT to read more about the international group. It is fairly advanced already and more standardised signs and symptom lists have already been initiated for research purposes. For example we have improved the definitions of fatigue and "muscle weakness" within diagnosis as well as adding things the rheumies were totally unaware of. There have been exclamations of "Really? You mean..." when they are told something that is clear as day to us! It is ongoing, it isn't something that can be done in a few months, and there are groups doing the same sort of thing all over the world, meeting to update each other every 2 years.

I'm not dismissing your idea - it is a good concept but to some extent it is already in the experts' hands. For day to day use with doctors - they need some education first!!!! But a simple diary can do the job too.