In my recent post about fighting an arrogant Ruemy, I mentioned his putting me on Methotrexate 10mg/week. I took the first dose on the 17th of this month and had some blood tests done on the 19th that were pending from the Rheumy and other specialist. I just looked at the results this AM and found my blood glucose having shot up to 131 after being perfectly normal for a year (4 tests). I immediately started a new search for correlation and did find it as a side effect. What is just as interesting is the complete lack of PMR as an indication for the use of Methotrexate. To be sure I am not using the very harsh drug and will be dropping the Rheumy. My GP can do as well as he for certain.
Hello paul, I'm so sorry to hear of your latest problems with PMR. What you are experiencing is one of my worries - my rheumatologist forcing me to take methotrexate as a course of treatment.
can I be very nosey and ask how long you have had PMR, what your previous course of treatment was, eg was it prednisone, if so, how long and what was the regime of tapering. Also did you experience any flare ups and if so at what point in your treatment. Also what was your rheumatologists reason for changing your course of treatment. I have just been online and looked up methotrexate and I'm horrified by all its side effects. I do hop your GP is more open to keeping you on prednisone. Please keep us up to date with how you get on. All the best, christina
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
Hello paul, gosh, what a tapering. Surely, you don't reside in England, because I can't believe that your reduction programme is recommended by any rheumatologist. As Eileen has said did you have GCA, but even then the tapering is far too rapid. You've actually only been diagnosed and received treatment for 7 months and yet you've gone from 60 to 8 mgs already. I'm surprised you only had a flare up when attempting to reduce to 8 mgs. I had a flare up when attempting to reduce to 8 and my gp said that flare ups at that stage are common.
also, are there not tests that can help Drs tell if you have a risk of osteoporosis and monitor you for that risk all without changing your PMR treatment. I'm not medically trained but I don't think your rheumatologist has given your treatment regimen long enough to work. Christina
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.
Paul, I have been diagnosed for PMR for 10 months – it just happened instantly and I was feeling extreme pain in all my joints. My internist doctor immediately diagnosed PMR and put me on 20 mg Prednisone that had an immediate positive reaction and the pain significantly reduced in less than one day.
He sent me to a rheumatologist and over a period of 3-4 months I was gradually reduced from 20 mg to 9 mg and the pain level was OK - then at 9 mg it started to get much worse again. The rheumatologist right away pushed me back up to 12.5 mg and then to 15 mg of prednisone. Based on the blood tests showing high levels of inflammation and above normal C - reactive protein, and the desire of most doctors to avoid high levels of Prednisone, she determined that I should commence methotrexate in an attempt to reduce and eventually avoid the prednisone. Based on long term medical tests, Methotrexate is known to have a very wide range of reaction time – apparently from several weeks to many months. So I went back to 20 mg prednisone (daily) and 20 mg of methotrexate (once a week). Regular liver blood tests necessary for the methotrexate – and the worst thing – NO alcohol!
Regular blood tests were taken during this period included C - reactive protein, erythrocyte sedimentation rate, hepatic function and hepatitis - plus others for liver issues and other medication – Fosamax and folic acid.
My leg and arm joint pain significantly improved but I started to get significant hand pain that mostly reduced in afternoons as drugs kick in; but still significant in the mornings.
To try and reduce this issue the rheumatologist put me on delayed release Prednisone (Rayos) - this did not work as it seemed to simply switch the pain arrival time to different times of the day, so I returned to regular prednisone.
Recently I have increased the weekly methotrexate to 25 mg and reduced the prednisone down to 10 mg and to my surprise I am having a dramatic reduction in pain in all my joint areas and hand pain is less. I am now on a prednisone reduction of 1 mg/month and I’m at 8 mg and feeling so much better. Also I split the daily amount to 5 mg in the morning and the balance with supper.
Based on all that I have learned from this wonderful Patient forum, I recognize that everyone’s PMR case is very different, but it is sharing this information and discussing the information with one’s own doctor – not only educates the doctor but guides drug systems for similar conditions.
Here in the USA, there are many changes occurring in the PMR field that are tying medication together with other current rheumatology issues – these include Enbrel shots and Rituxan infusions – but they are very dependent on the individual patient’s medical condition and need detailed review.
Paul – I wish you rapid improvement and I would really like to hear from others about the up and down sequences of their PMR and how methotrexate has worked for them.
Healthy New Year to all - David
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.
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.
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.
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
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.
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.
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.
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.
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Thank you for the valuable information. My rheumy wants me to start the Methotrexate next mnth because I have been stick on 10 mg of PRED for 9 months. I am desperate not to start that medication because of all the side effects and toxicity.
Starting on January 1st I will follow Eileen's advice and do the Bristol taper...try to get down to 9 mg a day. Any other tips to help with the tapering? Thank you. Kathy