Flare Management

Posted , 10 users are following.

Hi all,

Advise needed please, my last posted question was when is to much toooo much.

I was very grateful for all the encouragement.

However, having felt well through pacing definitely have done tooo much.

Planning a vintage type garden then making the Apple crates to go in it, was nothing short of stupidity., I have been in and out bed all week and in a lot of pain.

I am on 10mg pred and have been for a few months, would anyone advise me to increase this for a few days.

Fatigue so bad I haven't walked my pup, thankfully have large garden, need to get up and at it as they say.

I hope you are as well as you can be.

Julia

0 likes, 36 replies

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  • Posted

    Hi, I am new to this discussion only found the site today. I would certainly increase the pred. For a few days then slowly cut down there is no rush to cut back, my doctor told me take more if needed don't be in pain, enjoy life and don't do to much at once and take a rest when needed. 

    • Posted

      Hi,

      Thank you for you're prompt reply.

      Welcome, fab site and a wealth of knowledge.

      I was reluctant to increase as I have three attempts at reducing to 9mg, and feel stuck on 10mg.

      Rheumatologist I saw in April 16 was annoyed I had only reduced from 15mg to 11 in under twelve months.

      Needless to say I haven't seen him since.

      Drs at my surgery are supportive but I dont feel like I am making any progress and recently been diagnosed with osteoporosis.

      Apart from that, just need to get "vertical".

      Hope you are well.

      Julia

    • Posted

      julia85224, what are you doing for your osteoporosis? Did you have a DEXA? Good luck, think positive!
    • Posted

      Hi,

      I am seeing an " osteoporosis nurse" in a couple of weeks, my Dr wasn't that helpful when I asked the best way to manage the condition, following the the results of the scan.

      Hips not good and back worse, leafy veg when I asked about Vit k, which I have seen mentioned on this forum and the osteoporosis one, he said I didn't need that.

      Wait and see what the nurse says.

      Falling apart, ha, not really.

      Take care

      Julia

    • Posted

      julia85224, calcium, magnesium, vitamin D3, K2, MSM and walking are all a help. Just another bump in our bumpy journey.

      Don't know if I can send this to you, it might help you. Good luck on the rest of your journey. 🙂

      Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • Posted

    julia85224, tapering from 17.5 to 15 bad morning feel PMR pain, up Pred to 20 Slack off on activities a bit, hopefully, I feel better in a couple of days and can continue my tapering.

    Good luck 🙂

  • Posted

    I think tapering 2.5mg at once is to much try 1mg at a time at least 4 weeks apart this may work for you 

    good luck 

    • Posted

      I agree, my Rheumy controls my Phed supply, we disagree, but to some point I must follow her directions. I am not happy about it! No other Rheumy in the area, I have checked and asked! But still kicking! 🙂

    • Posted

      I have been tapering from 25 mg to 24 mg. Alternated dose 25one day 24 the next for a week then 24 mg.(14 mg at 5:00 am and 10 mg at 3:30 pm). I have slightly more pain in arms but it's bearable. I thought I would do this for another week...making it 2 weeks before lowering another 1 mg. Do you think this is too ambitious?  I am in no rush. I thought I would use the 26 day DSNS method around 15 or 10 mg. Suggestions please.

    • Posted

      sandy65909, I am doing modified DSNS under 20 mg. Will do full 52 day DSNS under 10 mg, think positive with a smile on my face. 🙂

    • Posted

      Define modified DSNS. How many days does it take ? How long do you stay on a dose before decreasing? Thanks 
    • Posted

      sandy65, I am using a 3-1, but you can use 4-1, 5-1; DSNS is 6-1.

      1 day new dose, 3 days old dose

      1 day new dose, 2 days old dose

      1 day new dose, 1 day old dose

      1 day old dose , 2 days new dose

      1 day old dose, 3 days new dose

      16 days see how you feel. Today I did not feel good, and increased will reduce when no PMR pain again hopefully in a couple of days, I will drop back into the cycle again, thinking positive! 🙂

    • Posted

      Thanks. At the end of the cycle is there a recommended time to stay on new dose before next decrease? How many decreases did you do using this method? Did you start at 20?  I hope you feel better soon. This condition keeps you guessing!

      My sleep is now disturbed. I wake up after sleeping about 2 hours, eat oatmeal, take Advil PM, watch TV and go back to sleep until 5:00 am dose. Stay up all day. 

    • Posted

      sandy65909, yes I started at 22.5 mg to 20, 20 to 17.5, 17.5 to 15, minor flare bump up to 20 again, will see how I feel in 3 days on 20, if good will reduce down to 15 again and continue on. I did not stay extra days between reductions. I wanted to reduce by 2 mg, but Rheumy wanted 2.5 every other day, so I am doing 2.5 but on DSNS. Hope that explains what I am trying to do. Good luck on your journey, think positive and keep smiling, 🙂

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