To increase pred or not?

Posted , 15 users are following.

I have been on 4mg since August 1 and when I tried to go to 3.5 in September, symptoms came back, so I went back to 4mg. In a last 2 weeks I am having relapse of symptoms, although I have not changed my dose recently or have done anything to cause it. My guess is that it might be related to colder weather. On a top of that, last few days I picked up a cold from my daughter.  I am still working on a cold, but wonder what to do with pred.  Last night, just for experiment, I took 5mg instead of 4. This morning most of the symptoms are gone.  I am reluctant to go back to 5mg, so I was thinking to do something different. Now a question(s).

Should I go back to 5mg or try to do this "cleansing" once a week and stick with 4mg most of the time?

Assuming that the experiment works ( once a week 5mg, and 6 days of 4mg), is there any issue with that longer term?

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  • Posted

    nick, we all have different ideas and opinions. I for one do not want anymore pain. So I will not reduce if I have any PMR pain. If I start with PMR pain I increase my dosage till I am comfortable, then start a modified DSNS taper when I feel I am stable. So far that plan seems to be working. I try to listen to my body and let that be my guide. A sore throat and head cold gave me a very bad flare last spring.

    Good luck, stay positive and try keeping a smile. 🙂

  • Posted

    Hi nick67069

    Once you get to a dose that controls your pain try EOD 'every other day'method. This will stimulate your adrenal glands to start functioning again. For example if you are taking 4mg daily try taking 8mg every other day.

    As 5mg controlled your pain, try taking 10mg every other day, but discuss it with your Rheumatologist first. This method is not tolerated by everyone. If it does not work for you then go back to 5mg a day.....best wishes..

    • Posted

      same request - please post title of the article - I would like to read it.
    • Posted

      Hi nick67069

      I will have to delve into my memory banks to find it, ir was over a year ago. I will do my best to find it for you. I can't search right now i am with my grandchildren who are on half term break from school, but will get on it as soon as i get home....another tried and trusted cold remedy used by my ancestors is whisky, lemon and honey mixed with hot water...not too much whisky..ha!...

    • Posted

      It will likely be moderated, ask for a personal message.
    • Posted

      Pls send PM if you prefer, but I think they moderate only links, not the titles.  With title anyone here can google for the actual article.
    • Posted

      Maybe that's changed, but I've had posts moderated and deleted in past because I've mentioned authors and titles. And I don't knowingly post questionable info.

  • Posted

    Comment about alternating dose as a means of stimulating adrenals - this from excellent article on Medscape:  In contrast to other rheumatic diseases, alternate-day administration of corticosteroids in PMR has largely been unsuccessful.
    • Posted

      Hi Anhaga

      I recall reading an article on the subject of EOD i don't think it was Medscape though and it said the same thing as you mentioned 'largely unsuccessful.' I tried it any way because i was desperate to get off preds. When i got down to 5mg I did 10mg every other day that worked ok so did 4mg- 8mg every other day, but did not work on 3mg....It may gave helped a little with stimulating the adrenals but who knows?....so it can work at certain dosages

      but not for everyone...my best wishes to you....

    • Posted

      And it is NOT advised in any patient with GCA.
    • Posted

      The primary problem with alternate day dosing is that the antiinflammatory effect of pred lasts for 12-36 hours. If you are at the 36 hour end of the spectrum it will work pretty well but if you are more a 12 hour person it is unlikely to. There are plenty of patients who can't manage single daily dosing and need to split their dose to get good control of the symptoms.

      I used ADD for quite some time and it worked well, I had few side effects, but i struggled to get below 17.5mg/2 days. Then I had a few GCA type symptoms and was ordered NOT to use it. Never gone back to using it since - am on a lowish dose and no symptoms anyway.

    • Posted

      I am probably  on the short side of that range. Now with the cold I almost feel low on cortisol at the end of the day. Typically I have increased stiffness and some pain.  I think some of the pred is diverted to fight inflammation caused by cold.
  • Posted

    Thank you all for comments. I don't intend to do anything exotic, but was looking for the best way to handle the current situation. Having cold is hard enough (with pmr), I dont want to make it even more miserable with return of actual PMR symptoms. Lack of sleep is the worse.  I think I will increase the dose to 5mg for the time being until the cold is gone.  If it is less then 2 weeks, then I will go back to 4mg; if it takes longer, then I will gradually drop back to original dose.

    • Posted

      H nick67069

      I don't know if it's summer or winter where you are, did you have a flu jab?. My experience when on pred and had flu jab i got colds anyway and it made my pain worse..I continued to take my pred dose at the time with paracetamol or flu remedies which helped and when flu abated my pain was ok. Obviously, this doesn't work for all. ....hope you recover from your cold soon ..best wishes...

    • Posted

      I have never had flu jab in my life. Before PMR, I only gone to a doctor for annual or fitness stress test. I am currently trying old remedy from my grandma... cooked hot red wine... good for colds and coughing. Will see if it works , and even if it doesn't, by the time I am done I wont care biggrin.

    • Posted

      Nick, I had a flu shot this year.  Before that only one, the year they were telling everyone to get the flu shot because young people, teens and young adults, were dying of it (h1n1).  That year I got it to protect those around me, herd immunity.  This year some little voice inside me said I needed to get it.  Apparently it's expected to be a more virulent version than usual, also the match between the vaccine and the disease is much better than last year, which was poor, and this year I seem to have slid into a different more vulnerable stage of aging  although recently exposed to rotten cold in extended family with whom I was staying, and neither hubby nor I succumbed so we assume we'd already had that cold in past and were immune, so that's one benefit of living a long time!

       

    • Posted

      My problem is, beside getting old, that I have moved from US/Canada, now to Asia and they have different bugs that I have no immunity for. I noticed as soon as I moved here ( long before PMR) that if I had a scratch, it would take longer time to heal.  Now pred  does not help in the whole thing.

      But still I am reluctant to take any flu jab because of "hit or miss" development process for  flu vaccines and because of the additives, especially Thimerosal ( which is still used in multi dose vaccines) and aluminum oxide.  Here we talk about healthy food.. For me vaccines are on the opposite side of the spectrum.

    • Posted

      Hi nick67069

      I think it is hit and miss with flu jabs depends whether you have previously had the strain they are injecting with. As already mention i always got flu and colds right through winter when on preds even though i had the flu jab....i stopped having it the following year after coming off preds and i havn't has so much as a sniffle, mind you i dose up with vits and lots of vit c...but i do have the pneumonia jab......no fun having flu is it?

    • Posted

      Apparently this year's vaccine is one of the successful years - the prediction success rate is generally between 40% and 60%, it is thought to be better that that this year. We were told this year there were no preservatives in our flu jab - what was different though was that it is i.m. instead of subcutaneous. Didn't seem to make any difference to either of us though.

    • Posted

      That's why it was young people who suffered so badly with the h1n1 flu - that was probably the flu that was going around in the 50s and 60s, we've already met it!

    • Posted

      The additives were the main reason I've avoided the flu shot, and having it this year doesn't mean that I'll make the same decision next year.  I figure by avoiding it for as many years as I have I've also avoided getting that extra aluminum into my system, if indeed it is a problem.  And I think that thimerasol is not in the flu vaccine?  Not sure about that.  There are also possible long term effects from the flu in the elderly.  Read recently that tetanus doesn't need to be done more than five times in a lifetime, but here they still have us get that shot, combined with diphtheria (no longer polio of course) every ten years.  There's also a version of that vaccine including pertussis for those who will be in close contact with infants.  Tetanus is such a terrible disease there's never been any question in my mind that I follow the local protocol on that one, vaccination being infinitely preferable to lockjaw!  Theoretically most of us will survive flu, not the case with tetanus.  Years ago I think I did have the flu and felt so incredibly awful I didn't care whether I lived or died, and to be honest I think that is a gift to the old.  It's been said that pneumonia is the old man's friend.  I'd rather die relatively quickly of one of these diseases than suffer for years with some sort of cancer or neurological disorder which steals my life slowly.

      What really needs to happen is discovering a vaccine which works on the basic flu virus, not just the mutated version going the rounds in a given year.  Then we could confer long term immunity on an individual, thereby avoiding the annual assault.  

    • Posted

      Exactly.  I remember being sick very frequently after leaving Africa and going first to the UK, but especially after arriving in Canada.  Things improved somewhat after tonsils removed but until I went away to uni I had to have at least two serious colds every winter.  Was also exposed to tuberculosis, both from a woman who lived with us for a time and a teacher, and had positive TB patch test for about ten years.  Wonder if that has something to do with the sarcoidosis?  The next time I got sick all the time was the one year I taught school.  Sick about every six weeks, or whenever there was a long weekend rolleyes .  Even having young children wasn't quite as bad as that.  In my old age, pred and all, I seem to be quite resistant to colds, perhaps because I was exposed to so many of them growing up! 

    • Posted

      One of the main reason I avoid fly shot for me and especially for my kid is because it contains Thimerosal.  I was not sure if the informaion was old or not, so I googled it and this is what search yielded:

      "

      Is there mercury in the flu shot?

      Flu vaccines in multi-dose vials contain thimerosal to safeguard against contamination of the vial. Most single-dose vials and pre-filled syringes of flu shot and the nasal spray flu vaccine do not contain a preservative because they are intended to be only used once.Jan 9, 2017"

      This is from CDC site ... Title "Thimerosal in Flu Vaccine"

    • Posted

      The flu shot I had this year was an i.m. shot in a pre-filled syringe. And they emphasised that there were no preservatives. 
    • Posted

      There was a prefilled syringe in a plastic packet waiting when I got to the Dr's office.  biggrin

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