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Higher dose Pred then reduce or methotrexate

Posted , 6 users are following.

jane0118
jane0118

Hi

I have been down at 10mg since the end of January and have not felt as good. I saw the registrar at the hospital today and he agreed I should go up to 12.5 mg for a month and the reduce to 11.5mg, then 1mg a month.

He said if I have problems reducing again then try methotrexate. He was horrified by the Bristol protocol and the idea of 10mg for a year. He said that could cause necrosis of the femur.

My bloods were within normal range now. 26.7 before I started then down to 13 when I was in diclofenac three times a day ( with the side effects of tummy pain and diahorrea) then 0.6 when I started at 15mg of pred, up to 0.7 on 12.5mg and 2.1 on 10mg. I had no pain after a week on 15 and then in 12.5, but since I have been on 10mg I am having hip pain, difficulty walking up stairs, getting dressed and sleeping. Reg did not think my CRP moving from 0.7 to 2.1 was significant!

I am resting as much as poss and only working part time.

Any ideas?

Thanks

Jane

1 like, 13 replies

13 Replies

  • pat38625
    pat38625 jane0118

    Posted

    Hi Jane, I am a newbie here, I was diagnosed with PMR November past and still have not seen a Rheumy, a 6 month waiting list for urgent appointments.  I am not medically quealified but there are a few people on this site who are, especially Eileen, and others have loads of experience.  Hang on in there and some one will answer your questions.  Good luck on your journey.    Regards  Pat
  • tina-uk_cwall
    tina-uk_cwall jane0118

    Posted

    Hi Jane, sorry to hear you are a little under the weather. All PMR sufferers know about the long term side effects of prednisolone. There are lots f them and some of them are very damaging. However, have you looked up the side effects of mtx? There are loads and many of them are a dam site worse than preds. Also mtx is classed as a toxic drug and for the first few months of taking that drug you have to have blood tests to ensure the drug's not damaging your liver!

    also, it may be a steriod sparing drug but there us no evidence that taking this drug gets you off of preds any quicker.

    would you tell me how long you were on 15mgs then how long you were on 12.5mgs before you reduced further still to 10mgs in January? 

    Regards, christina

    • jane0118
      jane0118 tina-uk_cwall

      Posted

      Hi Christina

      I was on 15mg for 6 weeks then 12.5mg for another 6 weeks before I reduced to 10mg. There are side effects with both steriods and mtx but there is no point in taking either if you still have the pain and inflammation!

      My secretary took me up to the new IT department, up a long flight of stairs - I thought he was asking me to climb Everest. I am 50 and went down with PMR is July but did not get diagnosed until mid October. I requested an urgent appoint as I met the criteria and got it. 6 months is scandalous contact your local Healthwatch.

    • tina-uk_cwall
      tina-uk_cwall jane0118

      Posted

      Hi Jane, seeing as you have up to now been following thevbristol PMR plan yet still are suffering from pain at 10mgs maybe you're just one of those sufferers whereby 2.5 drops are simply too much and are better off reducing by only 1mg. 

      Then when you get down to 10mg again only reduce by .5 thereafter and not 1mgs. 1mgs can be far to large a drop at that level. I reduce by .5 and stay on the new dose for 6 weeks. Eileen has created a reduction plan that equates to .5 drop and again we are in the new dose for approx 6 weeks. That way you don't have to cut the preds in half.

      Yes you're quite right there is no point being on any drug if you're not getting any of the benefits but still possibly experiencing some of the side effects.

      like you I was in my early 50s when I was diagnosed with PMR. My GP said that she had no idea what could be wrong with me but when I saw a rheumatologist he almost immediately diagnosed me. All the best, Christina 

  • EileenH
    EileenH jane0118

    Posted

    Any ideas? The first is  to find a rheumatologist who knows what he is talking about - that is utter drivel. The doctors who are suggesting a year at 10mg know what they are talking about and it as sure as hell doesn't cause necrosis! Has he also suggested a bisphosphonate to "protect your bones"? That is more likely to cause necrosis. I spent the best part of 3 years at over 10mg and it hasn't done anything. The idea of the 10mg for a year is to avoid flares - which are almost always caused by reducing too far or too fast. And to say a rising CRP is "not significant" is totally ignorant.

    You obviously have read some of the stuff - have you seen my "dead slow and nearly stop" reductions scheme? It is posts 4 and 5 of this thread:

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

    This concept that methotrexate is the answer is also rubbish - even the advocates of it a few years ago are now admitting it doesn't make a significant difference overall. Often people are able to reduce initially but then have a flare and end up back at a higher dose. Everyone is different in the amount of pred they require to manage the symptoms. You are still working - albeit it "only part time". Many of us don't work at all - and although I did work in the earlier days of PMR I was freelance, I couldn't have managed "going out to work" a lot of the time and would have needed a higher dose.I never got below 9mg until I used the very slow reduction. This time I reduced steadily but very slowly and have got much lower. 

    Will your GP cooperate with you in reducing according to the Bristol recommendations? You don't NEED a hospital consultant to manage PMR, you need a doctor who will work with you to find the optimum for you. You are unlikely to see that registrar again - he'll have moved on (I hope, but pity help the poor patients). If you show your GP the Bristol paper and the Mackie and Mallen review you will find via the final link in that link I gave you and if he is happy then stick with him. 

    If you get the current level of inflammation under control and then try reducing VERY slowly then mtx may never be needed. 

    Where do you live? Maybe there is a particularly good PMR person handy.

    • jane0118
      jane0118 EileenH

      Posted

      Hi Eileen

      Thanks for the reply. We did look for the Bristol article but could not find it when the registrar googled it.

      The consultant put me on Alendronic acid but I read the stuff on this thread and requested a DEXA which showed a 2+ reading so I was in the green zone so stopped that one. I am not going to crumble anytime soon. I walk everyday and am normal weight.

      The GP is clueless, he did not even want to do any monitoring blood tests, and has not read the article even though I asked him to. I saw him three weeks ago and said I was not so good in 10 and he told me to reduce! My hip pain is worse this morning. I took co codamol last night to try to sleep but could not, then upped my pred to 12.5 mg this morning.

      The thing is, the pain I am having now is my left hip joint, whereas before it was my thighs, with pain in a line down my legs and it was symmetrical - this is not. I did ask was this still PMR or really RA, but dr thought it was still PMR as I was dramatically better after one dose of pred.

    • tina-uk_cwall
      tina-uk_cwall jane0118

      Posted

      Hi Jane, I know you are waiting for Eileen's reply but if I could just say that although my PMR pain was on the whole symmetrical because I already have muscle and tendon damage due to sport and dance from my younger days, the pain does seem worse in these areas. And even when my PMR pain is well controlled if I do too much work with any of my damaged areas these areas will hurt I presume because of the extra temporary inflamation. All the best, christina 
    • EileenH
      EileenH jane0118

      Posted

      Trochanteric bursitis fits that and happens alongside PMR - bursitis in hip and shoulder joints is typical and it can be more one-sided than PMR alone. It responds well to cortisone shots into the outside of the hip even though the pain may feel to be in the groin. I speak from LONG experience as it was part of the original PMR and eventually faded with oral pred but has returned a couple of times. The first time it was bilateral and needed 2 cortisone shots a few months apart to clear it fully, last time I caught it straight away and 1 injection on one side was enough.

      I do wish I could put the link up for the Quick and Kirwan paper without having to go round the houses, I'd use it more I'm sure!

      Sounds like a cue for a new GP...

    • jane0118
      jane0118 EileenH

      Posted

      Hi Eileen

      Thanks for the information. I am still having the left hip pain inspite of the increased pred, so decided to call the advice line at the Rheumatology department. The specialist rang me back and said "it might be wear and tear so to have an xray", which sounds good. I also asked if I could have physio, and he agreed. I want to try that before I go for injections in my hips. I have a physio who has done Bowen who is a short bus ride away..

    • EileenH
      EileenH jane0118

      Posted

      Head for your Bowen person - but if it is trochanteric bursitis I think even Bowen might be out of its depth! Iif the x-ray shows no osteoarthritis definitely ask for an injection - but even if there is some OA, an injection may help. For trochanteric bursitis the injection is not into the joint by the way - far less traumatic!
  • ptolemy
    ptolemy jane0118

    Posted

    I recently read an article on necrosis of the femur and pred. Firstly necrosis of the femur is very rare, secondly the people they looked at were on huge doses of pred (over 40mg) for months if not years. It also suggested that their illness, which was not PMR, may have also had an effect. As Eileen says what the rheumy is saying is tosh. Goodness knows where they get these ideas. 
  • vawils
    vawils jane0118

    Posted

    I am in a similar situation to you I think although i am male and in the US.  I was down to 10 mg for a few months and then tried to go to 7.5 mg at doctor's request and found out quickly that was too far a drop too soon. (renewed pain and stiffness, worse in months).  After trying 9 mg, I am back up to 10 mg and doing better but not best (whatever that is).  Saw my rheumy last week and she suggested I stay at 10 mg for about 2-3 more weeks and then reduce more slowly this time.  Of course she suggested that after having already previously telling me to drop to 7.5 mg too fast. I suggested going down no more than 1 mg at a time and staying there for a month and she is pretty willing for me to manage the rate by myself and we discussed even .5 mg per reductions if that is better.   She did say however that she wanted me to get down to 7.5 by June if possible.  I started on prednisone in April 2014 and  she thinks that I should be able to do that and seems to really want me down to 7.5 or lower which she says is more sustaninable long term with less side effects since similar to level of cortisol body produces.

    She also suggested I try methotrexate now to help the reduction and reduce inflammation.   I told her i would rather not based on the limited effectiveness and side effects i have heard about with methotrexate.  She downplayed that and called it very safe but I had taken Meloxicam (mobic) last year for a couple months which she knows and I had terrible additional side effects and not apparent benefits so am now very reluctant to try anything else right now and want to just try a slower reduction. 

    She agreed to MY plan but said we may have to consider again in June dependent on how well i do on reduction.  She suggested tramadol or celbrex as an alternative to methotrexate and seems to think that i will need something else to help but i am not ready to agree and take any additional drugs that may give bad side effects and no real benefits. 

    Anyway thought I would share my experience and thoughts and wish you the best.

    Stu

     

    • tina-uk_cwall
      tina-uk_cwall vawils

      Posted

      Hello stu,

      i always am really annoyed to hear of drs and specialists that reduce their patients so fast then to hear that the patients have not only had to up the dose of preds again but usually second time round find it harder to rid themselves of pain. 

      I believe it's very simple, 15for 6 weeks, 12.5 for 6 weeks then 10 for anything up to a year. I was on 10 for 6 months. And for patients who find the 2.5 drop of preds just too much to reduce by only 1mg. Yes it may take longer but does it? No, because those patients that reduce too quickly often find they have a flare and then have to up the preds, so there is no difference. 

      I got down as far as 9mgs last year and attempted a 1mgs drop down to 8 and suffered a flare. Therefore I advise all patients to only reduce by .5 once they have reached 10mgs. I reduce by .5 and stay on that dose for 6 weeks. Eileen's slower, smaller reduction method does work.

      drs need to realise that the dose of pred has to fit whatever level of inflamation there is at that time and not forcing the inflamation to fit the dose. Sorry stu, but I look at it like this if you are a size 12 dress size if you force yourself into a size 10 or smaller then the seams are gonna start bursting! I am no Dr but I say stay on 10 until you feel as good as you did the first time in 10, hopefully 6weeks then reduce by .5 and stay on each dose for 6 weeks. See Eileen's reduction plan. I use a variant of this plan and touch wood am doing ok.

      tramadol, will not help at all as it is not an anti inflammatory drug, and I say if you don't want mtx, which I don't stand your ground. No Dr can force us to take any drug if we don't want it. You have only been on this journey since April  last year, that's not even a year! Yet your Dr wanted you to already be down to 7.5? No wonder you had a flare. I say slowly, slowly catchy monkey! All the best, Christina 

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