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Ronnie 1234

Back to 10mg

Was diagnosed last Aug started at 15mg immediate response after 2 days then gradually cut down but when I got to 5mg all the shoulder and mid thoracic pain back. Seen my rhemmy then my who is wonderful and advice to go back to 10mg. Started that on Tue and still stiff this morning and sore but it eased off later but now in pain again. Really p****d off (Sorry for the language)Just a bad day. I know it takes time and my rhemmy said im one of those that will struggle when reducing. Any suggestions gratefully received. Any diet that can help or herbal remedies. Willing to try anything. Im going back to the gym to do aqua aerobics and swimming. Thanks in advanced x

14 Replies

  • Ronnie 1234

    That's frustrating, isn't it?  May I ask - did the symptoms start to reappear before you got to 5 mg, or was it a sudden, overnight, recurrence?  If there were signs all was not well earlier then probably what happened is you needed to stay at that earler dose somewhat longer before continuing with the taper.  Be careful not to start tapering again until you are sure you feel as well as you did at the beginning, last August.  It may take a few days before you are back to where you were.  Get lots of rest - don't overdo things so you can get this flare under control quickly.

    • Anhaga

      Many thanks for your reply. It was a bit of both. I have come to realise that I'm very impatient and have probably tried to reduce too quickly. Also just lost my best friend just over a month feel that grieving is having an impact. Work long hours too x

      Have been thinking of going up 15mg and will email my doctor tom.

  • Ronnie 1234

    I know it isn't what you want to hear Ronnie but I think you have reduced far too quickly. Your rheummy's comment makes it sound as if you are in the minority but it isn't so.  There are a lot of us entering our 2nd year, 3rd, 4th, 5th and so on..... and Eileen has mentioned that those who reduce very quickly more frequently end up with the PMR reappearing.  You may find that you will need to increase to 15 mg for a short time to clear the inflammation and then start reducing again but I am sure someone will be able to give you some more help shortly.  Good Luck

  • Ronnie 1234

    It helps some people to split their dose. Take about two-thirds of your dose in the morning and then about mid-afternoon take the remainder.

  • Ronnie 1234

    Hi Ronnie, unfortunately many of us know exactly what you are suffering. I started on 20 mg, had a bad flare at 7 mg ended up going to 30 mg to get relief. First thing you have to do is to get your body stable at what ever dosage level that takes. Stay at that dosage till you can resume normal activities PMR pain free. Then think about tapering using DSNS. I personally taper very conservatively. I been PMR pain free for over a year and am very active. Good luck on your journey stay active, positive and try to smile. ☺️

  • Ronnie 1234

    Hi Ronnie, last Aug I was finally diagnosed with PMR and started at 10 mg.  I know that sounds low, but while I was in the hospital it was at 15.  I always was a “health nut” and had a diet of only organic Whole Foods.   I cook all my meals and that was my biggest fear that I couldn’t cook or do my dishes last year.  I live in a small rural town with only fast foods and I stay away, including any processed food.  Thankfully with all the food deliveries out there, I found 2 companies that deliver 6 meals.  I also take supplements but one I thing helps is zyflumend.  I personally believe my plan works for me, not saying it will for everyone.  Now I’m on a anti inflammation diet.  Can see how adjusting your diet can’t help along with your meds...nothing too lose.  Google for different plans.  Aug I should be off the prednisone...keeping my fingers crossed.

  • Ronnie 1234

    First I would give it a few days to see if 10mg is sufficient to clear the accumulated inflammation. In a future, I would use gradual taper method DSNS. You reduce over 4-5 weeks by alternating old dose/new dose in specific sequence. Gradual method gives your body time to adjust to new dose, and gives you  an opportunity to notice if new dose will work for you. Usually for me by the time I am half done with taper, I can tell if it is going to work. You have to pay attention to small changes and if there is a problem, go back to previous dose. In that way you avoid ( in most cases) bigger problems , as you have experienced this time.  Hope that helps.

  • Ronnie 1234

    You never were heading relentlessly to zero - you were looking for the lowest dose that gave the same result as the starting dose. At a guess that was 6mg or maybe 7mg - but you overshot. Unfortunately it is common to find it more difficult to get a flare under control than getting pain-free at the start. It is probably that the body has got used to the pred - so avoiding letting a flare get established is important. And yes - the emotional stress will not have helped at all.

    You can reduce as quickly as you like, 1mg per month is perfectly reasonable and would fit with your timeline,  PROVIDING that you always watch out for a return of symptoms by allowing up to a month between reductions. But you must be honest and not be in denial when you start to feel niggles. As you get lower you must, be definition, be approaching the dose you are looking for - so slow down! It isn't a race - and as someone else has said, you are by no means the only person it has happened to. It isn't that "you" will find it difficult to reduce - so do almost all of us if we aren't careful!

    DSNS has been mentioned:

    Cutting simple carbs and sugars is a good start - it helps avoid both weight gain and steroid-induced diabetes and sugars are very pro-inflammatory so cutting them helps in many ways. Personally I don't think there are supplements worth their price-tag but no doubt some people find they help. Gentle exercise also helps - but never pushing it or overdoing it.

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