Advice required please re possible flare with thanks in advance

I haven’t posted here for a while but now find I need some advice please. I was diagnosed with PMR 2 years ago and I have recently begun reducing to 4mg from 4 ½ mg prednisone using the dead slow & stop method. Apart from experiencing prednisone withdrawal symptoms during this time the reductions have been reasonably smooth. However, while reducing to 4mg I was beginning to have little ‘ niggles’ such as mild buttock pain & stiffness. I haven’t needed to go for blood tests using the ‘ standing order’ blood test sheet my GP gave me in the early days of reducing to enable me to monitor the ESR & CRP rates but I decided to have the test done yesterday and have the results back. At the beginning of the PMR diagnosis the rates were : ESR 22 & CRP 46. After starting the Prednisone treatment the readings have been consistent for 18months at : ESR 2 & CRP 10 . However, yesterday’s results are : ESR 11 & CRP 10 which means the ESR rate has increased quite a bit. I won’t be able to see my GP for advice until next week. Do you think I should stop the reduction and if so what dose of Pred should I return to? Even though I don’t feel too bad I wonder if this is an indication that I still have the PMR and should stick to a dose of maybe 5 mg for a while ? I would appreciate your advice please. By the way my GP is very aware & supportive of this particular site and the advice given.

28 Replies

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  • Having been in a similar situation, I would up to 5 mg and see how things go.

  • Thanks PMRPete.

  • Hi magmpearl,

    Sorry to hear you've come to a bit of a stumbling block after doing so well. Maybe you've got the level of Pred which is not quite enough to control things. And yes it probably does indicate that you still have the PMR, although a raised ESR could be other things as well, so don't get too hung up about that.

    Good idea to go back to 5mg, 1 would stay on that for at least a month, a little more wouldn't do any harm. Then, once you feel okay start the DSNS taper again. If you've caught it quickly enough, it shouldn't be a problem to get back on track soon.

    There is some thought that patients should stay at 5mg for a longer time to help the adrenal glands to get working again, so don't try and rush things. As I've said before I found reducing at lower doses much more difficult than higher doses for that very reason , I think.

    Good luck.

  • Thanks Dorset Lady. I think deep down I suspected this would be what I had to do but I'm feeling SO disappointed that I can't get off the Pred completely after 2 years. However, 5 mg is better than the higher doses and certainly better than a full blown relapse.

  • "SO disappointed that I can't get off the Pred completely after 2 years"

    It took me 4 years!

  • Yes it is disappointing, but as Pete, and many others know, 2 years is quick.

    Unfortunately it seems to be the timescale that doctors bandy about. Hopefully, one day they will be more realistic with patients and say "you MAY be off steroids within 2 years, but 4 is much more likely - and maybe longer!"

    That way, people won't feel disappointed, or even worse, inadequate, when the 2 year period comes and they're still on Pred.

  • He that expecteth nothing shall not be disappointed.

  • I have been disappointed too. I was diagnosed about 4 years ago. To be honest I can't remember exactly as lots has happened since, including my husband having a lot of treatment for cancer. So I have always been thankful for the dear old Pred. as I needed to keep on my feet to care for him when he was so ill. And yes I felt inadequate because I was initially told a couple of years which made me feel weak willed in a way. It's only since I have found this site that I have more confidence in my use of Pred and the lifestyle I now have to lead.🙂

  • It is that "inadequacy" or "failure" that those doctors are setting up for some 75% of patients. Not least because the term that appears on the notes is "patient failed ... drug name". I see it totally the other way round - "drug name at dose x failed to manage patient's symptoms".

    And let's face it - polkadotcom and I would have topped ourselves long ago on that basis! It IS depressing having a chronic illness anyway, when it lasts many years more than the doctor promised you in the first place it is even worse.

  • Thank you. It's a shock isn't it when out of the blue you can no longer do ordinary everyday things. Feeling sorry for yourself is the worst reaction too. I've learnt to recognise self pity when it starts in me and can put a stop to it, mostly by laughing at myself when I know others who are in a much worse place.

  • Hi,

    I'm not sure why doctors say that. Maybe that's what they believe, or don't want to frighten patients into thinking they are going to be on Pred for a long time (many doctors certainly don't like Pred).

    I suppose I was fortunate in that the Ophthalmologist that diagnosed me said "you'll need to be on Pred for at least 2 years, probably nearer 4 and maybe for life" . Whereas my GP had a plan that only covered about 2and half years.

    He was right - it was over 4 and half years

    Keep well.

  • Thank you. It's easier to cope with when you have more knowledge. My doc is great but I don't think he really knows himself what happens with PMR. He listens to me and helps.

  • Hi I found this forum today. I went to docs and saw nurse practitioner. As I left I asked if I could be feeling so bad because of PMR. He was cross that I only mentioned it as I was leaving. I vomitted on Monday and Tuesday so didn't take steroids but started pred again on Thursday and Friday. I've had PMR almost six years and I'm on 3mg2mg alternate days. I didn't think not taking them for two days would cause all this. Sorry this is so back to front . In the end he saw duty doctor who recommended blood tests and doctors appointment. Blood test 16 th May. Doc appt last week in May.

  • If you felt rotten it could be due to whatever caused the vomiting, but it could also indicate that your PMR is still active.

    Hopefully you'll soon get things sorted.

  • Just stopping taking pred suddenly, whatever the reason and even at such a low dose, is enough to make people feel unwell simply because your body has to catch up and make more cortisol.

  • I have been on them for 4 years now, ups and downs , Doctor said my PMR and GCA will burn out or should do eventually......still waiting !

    I am at the moment taking 7.5mg one day and 7mg another and I seem to be coping.

    On Monday I am going to try 7mg for 2 days then 7.5mg for one day and so on.

    Don't give up and take one day at a time like me, this forum has been a lifesaver for a lot of us as we all understand what each other are going through.

    2 months ago I had to up my steroids as I had very bad bronchitis and then silly me with the coughing I tore all my upper torso muscles !!!! Had to go A&E on the last torn muscle so that set my conditions back again !!

    But fingers crossed we may all go in remission one day ( hmmmm hoping )

    I am not replying much etc but I DO follow everyone and take a lot of advice what you are all going through.

    Keep up the good work to you all

    Xxx

  • I agree with your comments about the site Margaret. I have found it invaluable over the last 2 years. I too needed to increase my dose on a few occasions due to severe chest infections but it's a small price to pay I think. Good luck with your GCA/PMR journey.

  • I agree with Pete and DL, magmapearl. Both your symptoms and your recent CRP result in particular point to uncontrolled inflammation circulating. A slight hike back to 5mg may be all that you need, and the sooner the better to avoid having to go even higher. Your GP sounds caring and helpful so stick to him.

  • Hello magmapearl3

    If it helps, I have a similar trajectory to yours (2 years / now down to 5-ish mgpd preds) and ESR / CRP markers relatively low throughout.

    I agree with the others here, and from experience - reducing the preds successfully (i.e relatively free of flares and / or withdrawal symptoms) at these lower levels is even more of a balancing act for the reasons mentioned.

    Also, psychologically, it's easy to fall into the trap of thinking that, after 2 years / at these levels, you're nearly 'out of the woods'. But 2 years seems to be best-case timescale for PMR to go into remission and, from what I understand, relatively few people seem to achieve that.

    The best analogy I can come up with for a more 'successful' PMR / steroid tapering process is that of descending a ski slope, where the gradient / speed is greater at the beginning and progressively becomes shallower / slower until you come to a gentle stop (rather than a crash landing!).

    Like others (?), I'm experiencing the frustrations of having to reduce the preds even more slowly as I get closer to the 'finishing line'. But patience is Key at this critical stage in the process to avoid flares - and subsequent yo-yo-ing with doses to stabilise the symptoms - which ultimately means taking longer to reduce overall. Staying on a plateau for a while seems to be the best advice if it controls the symptoms in the short term. As the experts say, 'it's not a race to zero!'.

    It's good that your GP is on the case, many seem to be unaware of the subtleties of steroid tapering and / or have other reasons to want to get their patients off of the preds asap.

    Good luck and keep us posted!

    MB :-)

  • Absolutely stop the reduction - and if it were me I'd go back to 5mg and get the ESR/CRP checked in a few weeks to see what it is doing.

    Only some 25% of patients are "off pred" in 2 years or less. They are felt to be at a higher risk of relapse - and relapse means back to the start with higher dose pred and tapering again. The people I know who have had more than 1 episode of PMR have found the second is totally different from the first and rarely was it easier. 5mg is a low dose, causing few long term problems. I think a few months longer at a low dose is preferable to a second journey from the beginning.

  • Hi.

    I'm in the same boat as markbenjamin - two and a half years ( nearly) into PMR, and recently down to 5mg from 5.5 via the DSNS method. Feeling ok so setting off next week to 4.5mg again via DSNS again. Even if all goes well and I follow DSNS in half mg drops, it will be over three years with PMR from the start, so I think you did well to get where you got to.

    If I were in your shoes I would do what others suggested and go to 5 and see where that gets you.

    Good luc

  • Magmapearl, my CRP is never tested, and ESR has never been as low as 11 - lowest was 16. Is this a problem? I think not. I think for me being on higher dose of pred would be more of a problem. But we are all different. I think I may be particularly sensitive to heavy duty meds.... But I wouldn't continue with a taper if the pain worsened. I think in my case if I hadn't pushed a little bit I'd still be at a much higher dose, and as my ESR never seems to get low, that would likely not have budged anyway. So I guess it comes down to whether you want to risk pushing through with the taper, although very slowly, stopping at current level, or going back up. When I was in your situation I went up .5, not 1mg. And I've been okay. But I see the real experts here advise going up to 5. Follow your instincts - you will know what's best for you!

  • 16 is within the normal range across the healthy population as a whole (1-20) - if that is YOUR normal ESR is won't go any lower just because of pred. Mine is 4, reaching the dizzy heights once of 7! About 2.5% of the population will have readings that are higher than 20.

    But whatever the numbers - in the context of PMR it is symptoms that are king. Lots of other things can lead to ESR/CRP being raised - including (and I'm sure it is totally unlikely) pregnancy!!!!!

  • I wonder how one ever knows the "normal"?

  • Quite...! :-)

  • It depends on your definition and the substance. The "normal range" is the range of values that covers 95% of the healthy general population. They take the results of thousands of people who should have "normal" readings and plot them on a graph. Then they find the cut-off points for the middle 95%, a few healthy people will have lower levels, a few will have higher. In other cases it is known that zero to a low level is normal, anything above that is not. In ESR they take the bottom 95% - 5% will have higher levels.

    In the case of ESR it is zero at birth and then rises (in most people) for the first few days and then mostly plateaus. There are doctors who will still tell you that it rises with age and a level of 40 is OK. Until relatively recently they used a formula to work out what was OK up to about 55/60: in men age divided by 2 and in women age plus 10 all divided by 2. So for a 55 year old woman it would be 65 over 2, 33. But it has now been realised that actually the patient is probably NOT totally healthy and that the formula isn't accurate. The normal range was revised back to 1 to 20 and anything above that suggests there is SOMETHING. It is a totally non-specific test but it is easy and cheap and widely available. When the test was originally developed in the early years of last century, Westergren said then that normal levels were 3mm for men and 7mg for women but didn't allow for age. In 1996, a study on nearly 4,000 healthy adults produced figures of 18 for 20 year old women, 21 for 55 year old women and 23 for 90 year olds. Men were slightly lower.

  • LOL ! Pregnancy ! Now wouldn't that be amazing at my age of 65 ? Mind you, these days that may be a distinct possibility for some ( not me ! ) . That made me smile ( thanks PMRPro ) . Just to clarify : I was only concerned because apart from a few ' niggling' symptoms my ESR had jumped from 2 (which is normal for me) up to 11 so something is going on. The ' something' may be a flare so yes I will take the advice & go up to 5 mg. Yes, I am disappointed but certainly not very upset about it because it is still a low dose and as most have pointed out 2yrs is not a disastrous time frame! I was aware that it could be up to 5 years. I had tapered so slowly at half mg steps since I got under 10mg so I have taken things very carefully and not rushed which is why I felt disappointed I think. However, tapering slowly is advised so that we can catch ' flares' early so it's worked! My main 'niggle' is pain in my left hip and I'm just wondering if it's something else associated with PMR like Piriformis syndrome as I think PMR symptoms are usually bilateral aren't they? Thanks everyone for taking the time to answer and comment on my post. The delay in my replies are because I'm in NZ so I'm in a different time zone.

  • Just a quick update: got to see my GP today who agreed the advice given here is the way to go. She also suggested I stop the tapering for a month and then go back for a repeat blood test to make sure any flare has been nipped in the bud.The hip pain I was having has improved and as it was only in one hip it's more than likely not the PMR which is usually bilateral so maybe was bursitis. It's always reassuring to know that we can get quick advice and guidance on this site when waiting for a doctor's appointment. Many thanks everyone xx

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