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Down slow method and markers back up

Posted , 12 users are following.

Poupe
Poupe

Trying to reduce....... CRP numbers were cut in half and within a month CRP numbers doubled and of course pain increased.  Trying to reduce from 5 1/2 to 5 mg. of Pred.

Should you be pain free before continuing to reduce?

0 likes, 19 replies

19 Replies

  • EileenH
    EileenH Poupe

    Posted

    If your CRP is starting to rise again then it is a sign you have reduced to a dose that is not enough to manage the inflammation. You need to go back to the last dose that worked or you risk a real flare and being back where you started.

    It is difficult to say whether you should be pain-free - were you pain-free on your starting dose? That is your guide, you are looking for the lowest dose that gives the same result as that starting dose did. Some people are never pain-free - but when you reduce there should be no increase in pain on where you were with the previous dose.

    You are on a very low dose now - perfectly safe to be at for a long time as it is less than your body makes of a natural corticosteroid, cortisol, and the body just tops it up to the level it needs. Recent research has shown that these doses are safe:

    https://www.medpagetoday.com/rheumatology/generalrheumatology/66912

    • Poupe
      Poupe EileenH

      Posted

      Eileen, first want to thank you for all your advice which has helped so many people, especially me ( unlike someone who is leaving the forum) with this condition. The specialist really have a difficult time advising since none of them have had to deal with the pain.  Also thank you for the articles you include.

      Another question someone may know is there a way to build up the adrenal gland function to help in getting off the prednisone?

    • EileenH
      EileenH Poupe

      Posted

      Afraid not - despite what you read on the interwebs... A good diet helps - no junk food for example - but there is nothing that prods the adrenal glands to wake up except being on a dose of pred that is lower than what is called the physiological dose. And that only works when they are capable to waking up. Patience is the best approach for a start.

      Thank you...

    • margot34956
      margot34956 EileenH

      Posted

      Eileen I want to thank you too, a very big thank you! you have been amazing for all that you have helped.

      I am very interested to your reply to poupe especially where you have said "there should be no increase to pain from where you were on the previous dose"

      I have never been pain free, and am starting to reduce. thank you I now know there should be no increase in pain. I will use that as my guide.

      Thanks again, and I hope you are doing well! bless you!

    • Poupe
      Poupe EileenH

      Posted

      Would like your opinion.  In trying to reduce am fine throughout the day but start to have muscle aches towards evening.  Tried splitting the my does 5 mg in a.m. and 1 mg p.m. but to no success. 

      Arthritis tylenol seems to help somewhat is that a good course to follow until my body adjusts?

    • EileenH
      EileenH Poupe

      Posted

      I would say that if Tylenol helps it is much more likely to be withdrawal or low adrenal function adjusting than PMR. Obviously you are reducing from 7 to 6 - which is a big step donw as a percentage. Is 1/2mg not possible? The recommendations are for not more than 10% of the current dose to reduce such problems. Or spreading the reduction over several weeks, really taking it slowly using one of the slow reduction approaches.
    • Poupe
      Poupe EileenH

      Posted

      Thanks Eileen.  I had reduced to 5 mg starting at 7 mg months ago but used the dsns method.  Then pain started and CRP numbers climbed back up.  Rheumy wanted me to go back to 7 1/2 mg. but I am trying to increase dosage slowly hoping not to start all over.  Been at 6 1/4 for three days but still have pain in arms in evening.

      Rheumy is not familiar with the dsns method......not sure any of the doctors are!!!!

    • EileenH
      EileenH Poupe

      Posted

      There is apparently one rheumy in the US who has something very similar on his website. And a few other sources are quoted - DSNS is mine, based on a slow reduction someone used to get from 5mg but extended.

      If the CRP levels have risen and you have symptoms - the cause of the PMR is still active. However slowly you try to sneak past, if the dose isn't enough to manage the inflammation, it will build up and you will flare. You don't have to start all over - you need an adequate dose or you WILL end up going back to the beginning and the starting dose. It isn't worth it for a mg or so at this level where you are on a dose that is about the same or less than what your body makes in the form of cortisol. These are no dangerous doses - but effective.

    • Anhaga
      Anhaga Poupe

      Posted

      I had a flare last year.  I, too, tried increasing just a little.  I had been at 1.5 and attempted too soon to go to 1.  First I tried 3 mg, and it seemed to help for a while, but then it didn't.  Finally I thought, okay, I was definitely good at 2 mg.  I will take 5 mg more than that, which is 7, as an increase of 5 mg is often recommended in these situations.  I took 7 for a few days, then dropped every few days by 1 mg until I got to 4, then started DSNS method again.  I am now more than halfway through the taper from 3 to 2.5.  It seems to be taking forever, but I have to say I'm feeling well, as well as I did around this level many months ago, the time when I fancied I was nearing remission only apparently I wasn't.  It was worth doing it this way.

  • rusty49
    rusty49 Poupe

    Posted

    I can only speak from my limited 2 yr experience.  I reduced only when I was asymtomatic and then slowly - low-dose (5-0.5mg) Pred.    If your inflammation (CRP) numbers have increased then you & your PC should be asking why?  What is creating the inflammation? Genetics? Environment?  Both?  The literature if full of info about auto-immune diseases - Once I was stable on low-dose Pred, I quickly moved to reduce or eliminate possible/probable causes.  I began by "re-setting" my body.  This included a combination of cleaning & detox dieting.  My Primary recommended a week of each, but I managed a month for each.  I was also tested for a battery of common allergies from food to environmental issues.  I also avoided season immunization(s) and monitored my stress levels.  Turns out diet was the key factor in reducing my symptoms and getting off steroids.  I also engaged in routine PT and light exercise.  I have experienced some remissions this past year.  Again, these were traced to both genetics and environmental (diet and excess exercise).  I still avoid inflammation causing foods!  Good luck!

  • sandy65909
    sandy65909 Poupe

    Posted

    What anti inflammatory foods do you avoid?
  • lois41428
    lois41428 Poupe

    Posted

    Hi Poupe,  Like you I am starting the DSNS method to reduce my steroid dosage - I have been on steroids since 2011, previous attempts at reduction have failed when I get to 4 mgms - flare up starts again and I end up back at square one with increased doses and the long slow withdrawal - my GP is only interested in getting me off steroids and on Methotrexate - I am not keen to do that as I have copd and also I have an inadequate immune system already - and I am 79 years old.  My crp levels are always raised and I am always stiff and slow.  A bit of a wreck really. I am currently on 5 mgms.   However I am going to follow you and see if I do better this attempt.  I wish you luck.
    • EileenH
      EileenH lois41428

      Posted

      Are your flares with symptoms or just your CRP rising further? Stable COPD patients tend to have raised CRP levels,.

      I'm a bit surprised at your GP wanting to get you off steroids and onto methotrexate - since methotrexate can cause lung disease which is indistinguishable from COPDso how would he be able to tell if it was happening? It doesn't replace pred for the vast majority of patients anyway.

      Are you in the UK Lois? I thought that only specialists can start prescribing mtx - not GPs. I think I might be looking for a different GP as the dose of pred you are on is so low there really isn't much to worry about. 

    • JanetGarrett
      JanetGarrett EileenH

      Posted

      Good morning ladies. I'm in the US and your doctor sounds like mine except I'm 55 have been on Prednisone for about 4 months with three attempts to lower the first two times too much from 15 to 10 and this third time most recently to 12 and a half but after about 9 days I seem to be having increased pain so I increased it back to 15 mg. On my second visit most recently he already indicated wanting to use methotrexate. I am totally opposed and think it is very unreasonable. Your thoughts? Thank you.

      Janet

    • EileenH
      EileenH JanetGarrett

      Posted

      There is some evidence that starting mtx right at the beginning makes a difference. Maybe... The Germans do I think - but they also seem to start pred at 25mg. I think that may help too for many patients.

      I don't know - my new rheumy has mentioned mtx and leflunomide - after 14 years of PMR and 8+ years of pred I suppose I can't be surprised. I'm not happy - I have a load of other medication for atrial fibrillation which all works nicely at present and I don't want to upset the apple cart. I suppose I'm coming round to the concept it may be worth trying it provided it doesn't make you unwell. If it does no way Jose - and if it works good, if it doesn't you can stop.

      A friend swore by mtx having helped her reduce her pred dose to about 7mg - and recently has been on leflunomide for 8 months and is off pred - she says she felt the leflunomide kick in. Was it ever PMR?

      Your problem is more haste, less speed. You should have been on the starting dose for 6 weeks before reducing at all - if you have had 3 reductions in 4 months you can't have been. Dropping to 10mg so fast put you back to the start - rinse and repeat. If the doctors were more patient and at least tried the Quick and Kirwan way:

      http://www.rcpe.ac.uk/sites/default/files/quick.pdf

      and accepted what Eric Matteson has established:

      https://www.medpagetoday.com/rheumatology/generalrheumatology/66912

      that the pred isn't going to make the patient self-combust which is what they seem to think, they wouldn't create so many problems for the patients. 

      If it were me I'd want 3 to 4 weeks at 15mg now and then try 1mg at a time. And that you are still at 15mg now is the doctor's fault - not yours or the PMR's. 

    • Anhaga
      Anhaga JanetGarrett

      Posted

      Eileen is spot on, as always.  Your doctor is being completely unrealistic.  My suspicion with these doctors is they don't understand that PMR is unlike most diseases they will treat with prednisone, most of which require a certain dose for a relatively short time, the patient can then be tapered down and off pretty quickly without recurrence of the disease.  As we know, PMR is not cured by pred, and we need a certain amount as maintenance to keep our symptoms in check, usually for several years.  Part of the PMR/pred journey is a slow taper to find the lowest possible dose which achieves the goal of symptom control.  The doctors really ought to be taught this, so they can factor it into their expectations for PMR/GCA patients.

    • JanetGarrett
      JanetGarrett EileenH

      Posted

      @eileenH and Lois

      This is a topic I'm interested in. I'm due to see my doctor on the 20th. On my last visit, which was just my second visit, he said he wants to get me off prednisone, saying you've already been on it 3 months you can't stay on it forever... At that point he told me he was going to put me on methotrexate. The little that I have seen and read is a huge red flag to me I'm 55 I have only been doing treatment for PMR for about 4 months reductions too fast. I'm curious about your thoughts and inputs particularly if just happened to you and at what point in treatment did it? I am in the US I know there is a difference in some thoughts of treatment. Have a great day.

    • EileenH
      EileenH JanetGarrett

      Posted

      Methotrexate DOES NOT REPLACE PRED. It doesn't matter if it is the USA or Europe, PMR is the same disease requiring the same management. The people providing the guidelines are from all over the world and work together.

      This link

      https://www.medpagetoday.com/rheumatology/generalrheumatology/66912

      is about an article from Eric Matteson at the Mayo Clinic - PMR lasts on average just under 6 years. 

      This

      https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf

      is the link for the 2015 Guidelines for the management of PMR, drawn up jointly by the European rheumatologists and the ACR which are aimed at "Target users. The target users of these recommendations are primary, secondary and tertiary care physicians (that is, general practitioners [GPs], specialists in general [internal] medicine and rheumatologists)." So that includes your doctor -whatever he is.

      They further say that "These recommendations will inform primary, secondary and tertiary care physicians about an international consensus on the management of PMR. These recommendations should serve to inform clinicians about best practices in the care of patients with PMR."

      The international consensus is that the mainstay of management of PMR (and GCA) remains corticosteroids. The only questions are how best to use them. However, it is not a short course for 3 months and get the patient onto another drug. Methotrexate MAY help the patient reduce their pred dose better - at the risk of adding another layer of side effects and increasing what is often already polypharmacy in this age group. Eric Matteson is keen that such practices, which do NOT benefit the PMR patient, should be discouraged. In the majority of patients, low dose pred CAN be used over long periods without significant concern about side effects. And indeed, many patients DO remain on pred "for ever" because their condition requires it.

      I'm sure your doctor thinks he is very competent - but he is dancing out of time with the rest of the world in the PMR line dance. He would not be my doctor for long.

    • JanetGarrett
      JanetGarrett EileenH

      Posted

      I definitely agree with you Eileen. well I messaged him after I made my post to let him know what had happened when I followed his directions and what I've done using my own discretion. I'm sure it'll be interesting what dance he comes back with... For all of the health issues I deal with and side effects of medications many of which are serious the idea of just throwing Methotrexate at me makes me angry. This is the point where all I'll find out how collaborative we're going to be or not.

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