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First time flare up - looking for advice

Posted , 12 users are following.

AussieMel
AussieMel

Hello all,

I've been reading here for quite a while and found it incredibly informative. I'm 48, from Australia and diagnosed last August.

I've been tapering off Pred and was successfully down to 5mg. I'm currently having my first flare up which is scary as hell - I think it flared because of stress associated with whether or not to pull our kids out of school due to Covid about 3 weeks ago. At that stage most kids were still at school so we were going against the grain - turned out to be the right decision as 4 days later staff at the school had to self-isolate after contact with someone who had it.

I tried 7mg for 4 days, no good, 10mg still no relief, 12.5mg same and now at 15mg but still waking with the same pain and stiffness in the morning.

My question is do I give 20mg a go for a week and if the pain and stiffness is still not responding make an appointment to see my GP?

Thank you all in advance.

0 likes, 17 replies

17 Replies

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  • peggy_56092
    peggy_56092 AussieMel

    Posted

    What was your starting dose and when were you diagnosed? How fast did you taper?

  • nick67069
    nick67069 AussieMel

    Edited

    It is always best to check with your doctor. We can only advice here based on our experience. First remark is that you have reduced pred pretty quickly. Reducing from starting dose to about 9-10mg is usually easy, and then it becomes harder. As you probably know, prednisone does not cure PMR, it just manages the symptoms. So, what you are looking for is the right amount to control the symptoms. If you were at 5mg, usually additional +5mg takes care of the flare, but you have to give it time. Since you are already at 15mg, try to stay at the same dose for a week to give it time to clear accumulated inflammation. Make a note of dates you increased pred. You don't need to taper down if you have been on higher dose for less then a week to 10 days. So , for example if your total number of days since you increased from 10 to 15mg is less then week to 10 days, you can go back directly to 10mg. From there, you would carefully reduce and try to find proper maintenance dose, which probably will be slightly higher then 5mg. I hope it helps. Good luck.

  • lynda62707
    lynda62707 AussieMel

    Edited

    oh boy! you just hit the nail on the head for me too!

    I managed to get to 3.5 for about 4 days. then, babamm! man did I get hit BIG TIME!! I pretty much did the same as you, except I've only gone back to 10mg.

    (ONLY, I say😢)....

    I started at 15mg just about two years ago...God, has it been 2yrs?? arrggg

    anyway, thus far, NO RELIEF! the amount of stress I'm experiencing is beyond belief...what with what's going on in the world, coupled with my own health issues.

    So, with that said...if you get an answer, please pass it on. I'm in such pain, (as it sounds, so are you)...I think we both need advice.

    Good luck, my friend.

  • judith90525
    judith90525 AussieMel

    Edited

    Hi All,

    This sounds like me a few months ago. I became so stiff I could hardly move I was on around 12mgs and diagnosed with PMR in May 2017. It was like the pred was no longer having any effect.

    I finally went to see a rheumatologist who did loads of tests then suggested I may have underlying inflammatory arthritis ? All I know is he put me onto Mobic (it has other names) and I have been a new person since. Still a bit stiffer now our Aussie Autumn is here and whenever a low pressure weather system comes calling but SO much improved. I am not heading for 7 mgs using the DSNS method.

    I am not saying this is YOU but it's maybe worth a look?

    Good Luck!

  • EileenH
    EileenH AussieMel

    Edited

    I would say you need to discuss it with your doctors - not least because at 48 a diagnosis of PMR is by no means 100% certain. I'm NOT saying you are too young - what I'm saying is that this needs careful investigation as at your age there are other things just as likely as PMR that can all present in a very similar manner. But above all, when PMR gets worse and doesn't respond to a higher dose like that you MUST rule out that it isn't turning into GCA.

    But first - try taking at least some of your dose before bed and see if that improves the morning pain. Once you flare it is often harder to get things under control again. The inflammatory substances that cause the inflammation and so the symptoms are shed in the early morning about 4am. If you take pred before 2am it should reduce this morning problem. The antiinflammatory effect of pred lasts from 12 to 36 hours for different people - quickly make sure first it isn't a case of that not lasting long enough. If that doesn't help - time to discuss what is going on with your doctor.

    But next time - maybe go a bit slower. Because to get to 5mg in 8 months is very very fast - the median time to 5mg is 18 months and flares are very common in the first 18 months, usually because of reducing too enthusiastically.

    • AussieMel
      AussieMel EileenH

      Posted

      Thanks Eileen, I was hoping you might answer.

      PMR is in my family - My mother has it as well but was diagnosed much later - though we believe prednisone she was taking for her asthma was masking it - once she recovered and stopped the pred her PMR was more evident and she rapidly deteriorated.

      I believe mine came on as a result of my body overdoing it with the inflammatory response to jaw surgery I had in June of last year, and it kicked off the PMR that may have been lurking in my DNA.

      My initial CRP was fairly normal at 20, and I've been having monthly blood tests to monitor. The Dr last time said he though my inflammation levels would be further down by now.

      I've had numerous blood tests and am seeing one of the top rheumatologists here in Canberra so I believe the PMR diagnosis but am open to other things going on as well.

      I haven't had any of the symptoms of GCA - are there any I should look for other than what I've seen listed? The mornings are the worst - pain the joints of the shoulders, tight neck and stiff hands.

      I've just started the 20mgs. How long should I give this work? I took it yesterday but still woke up today stiff and sore this morning. My guess is I need to give it more time to take care of the inflammation.

      I'm thinking if it's not better by the end of the week I need to contact my GP.

      Thanks in advance,

      Mel

    • nick67069
      nick67069 AussieMel

      Edited

      it might help if you split the dose and take some ( say 7-10mg ) late at night to combat morning stiffness,as EileenH suggested. If you can take it as late as 1-1:30AM, it will be absorbed and ready to neutralize cytokines when they are released by your body at 4-4:30AM. The rest of the dose you would take in the morning as usual.

    • EileenH
      EileenH AussieMel

      Posted

      Mine improved in hours originally in response to 15mg - it happens but isn't that common - but if I flare now the improvement isn't a dramatic. If it hasn't made some difference in a week you may need to query the dose again because up to 25mg is the limit: lowest effective dose in the range 12.5 to 25mg. It isn't uncommon for flares to be harder to get under control than the original episode - no-one knows why but it is so. And Nick's suggestion of splitting is also a possibility.

      There are forms of inflammatory arthritis which really do present identically to PMR and respond to pred the same way to start with and they are all difficult to identify with certainty because there are no 100% accurate tests. Even where there are some that are very high probability they aren't always obvious in the early stages and there are also what are called sero-negative cases.

      GCA remains an option - or PMR ramping up towards large vessel vasculitis at the very least. What GCA symptoms are you aware of?

    • AussieMel
      AussieMel EileenH

      Posted

      I took an extra 5mg before bed, bringing my total to 25mg. That finally seems to be the magic number as I have no pain or stiffness this morning

      So I think splitting it to take care of the 4am cytokine rush may be the right idea. Maybe 15mg in morning and 10mg at night?

      Question: What would a good taper schedule from 25mg look like?

      Thank you all so much.

      I'm still keeping on the lookout for GCA and inflammatory arthritis too. I'm definitely new to all this and you've all been very giving with your info and suggestions.

    • EileenH
      EileenH AussieMel

      Edited

      Had you tried splitting 20mg? It may have been the 5mg "before bed" that made the difference rather than the 25 instead of 20mg. It is worth trying it once - that would be a 5mg taper just like that if it did work!

      I doubt you would recognise inflammatory arthritis - except you might have more joint problems rather than muscular ones.

    • AussieMel
      AussieMel EileenH

      Posted

      Thanks Eileen..it's such a bigger of a disease to get a hold on.

      Is it possible for you to let me what a taper after the flare from 25mg or 20mg might look like?

      Going by posts here it needs to be much slower than recommended by even the specialists to be successful.

      I had a much better day today, much to my relief. I just want to get taper right from here on.

      So thankful to have found this group.

    • nick67069
      nick67069 AussieMel

      Edited

      Keep track of your doses. You have 7-10 days of "grace" period that does not need taper. After your flare is under control, quickly go back to level that you were at 7-10 days ago ( I am guessing that would be either 12.5 or 15mg. From there on you would apply usual taper, using DSNS method. To avoid the same problem I would use split dose late evening/early morning.

    • EileenH
      EileenH AussieMel

      Edited

      I would suspect this is a proper disease flare - rather than you having reduced too far - so I'm not entirely sure Nick's suggestion would work well. If 20mg split is good then I'd probably drop to 17.5mg total on the way down to 15mg. Then regroup and go slowly from there. It is difficult to tell when you had been fine at 5mg before. But trying to get back to 15mg, whether it is single or split would be good.

    • AussieMel
      AussieMel EileenH

      Posted

      Thank you.

      How long should I stay on the 20mg before moving to 17.5mg?

      Would it be 3-4 weeks then reduce by 10% until I get to 15mg, staying on each lower dose for a few weeks?

      Then as I get lower do the DSNS method?

      Apologies, so many questions.

    • EileenH
      EileenH AussieMel

      Edited

      Until your symptoms are well controlled - 2 weeks might be enough but no-one can really say. The same applies to 17.5mg and most people manage to drop from there to 15mg in a single step. You do need at least 2 weeks to know it is still enough I think.

      You can introduce the DSNS approach at any time - it smoothes the step down whenever you use it. But always listen to your body - pain/discomfort that appears within 48 hours of a change in dose and then improves over time was due to the steroid withdrawal reaction but when it takes a bit longer and then steadily gets worse it is more likely the dose is too low. Don't try to deny what is going on - just go back for a few weeks and try again. It will work eventually at these higher doses.

    • AussieMel
      AussieMel EileenH

      Posted

      Thanks Eileen, you're a gem. It can be confusing and a bit scary trying to figure it out.

      Your patience in answering my questions is really appreciated.

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