1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

insurmountable wall

Posted , 8 users are following.

heather39822
heather39822

I have hit a Prednisolone barrier. Following Eileen and the Forum's advice, I have followed a slow pred reduction from 400mg, reaching 15mg at the end of October. All was relatively pain-free. I dropped to 12.5mg on two occasions in mid-November, a week apart. That had minor pain repercussions. Then suddenly, before the next scheduled reduction to 12.5mg, I was felled by a deluge of back, shoulder, neck pain and headaches. So I abandoned the reduction plan, remaining on 15mg all this month. However, I can't return to that pain-free period. The pain and discomfort are with me from late evening until the following midday.

This has been a huge disappointment and am not sure where to go from here. I'm aware of the stress factor in PMR and wonder if this set-back could be as a result of my selling my home and the current exhausting and often frustrating preparations involved in setting up another?

I leave for the UK next Thursday for Christmas with my children, and the thought of this 20-hour journey does nothing for my headache!

Fellow-sufferers, do I battle on at 15mg and hope I will eventually return to those pain-free days on this dose, or do I accept defeat and up the dose? I can only get 5mg tablets, so can't try an increase of anything less than a halved tablet of 2.5.

I am only six months into this horrible journey with no illusions of the long road ahead, but feel such despair when reading posts of successful reduction programmes - and humps being hit at a halcyon 4mg...

My thanks in advance for your suggestions.

1 like, 12 replies

12 Replies

  • erika59785
    erika59785 heather39822

    Posted

    Heather, the STRES is causing you pain!!!  I sold and bought a house recently, so I know what you are going through.  I would up the prednisone and give it a burst ---- my GP prescribed this for me.  Starting with 30 for 3 days, then down to 25 within 3 days, then 20 for as long as the pain is there up to 1 - 2 weeks......and when gone to 15 mg for 6 weeks.   It did help me, but I am sure Eileen will be of better guidance to you.

    I feel for you!  This is tough during the Holiday Season, and you are going on a long flight to the UK.  Take good care.  All the best, Erika

  • debbie27473
    debbie27473 heather39822

    Posted

    Hi Heather. Have you tried taking your pred at a different time? Eileen often suggests that people in you situation try taking them around 2-4am then going back to sleep for a few hours. Then they have kicked in by the time you get up. Also, you are right about about the stress and overdoing the physical activity involved with moving home. The only way to get over this is rest, rest, and more rest! Very frustrating but essential if you are going to cope with a long christmas trip. I wish you well. Take care, Debbie
  • EileenH
    EileenH heather39822

    Posted

    Are you using my reduction plan? That smooths the drops so it isn't really 2.5mg at a time you are doing.

    However, that aside - yes, the stress could well have led to the flare. I do wish your GP hadn't insisted on such a high dose - it masks other problems  where she should be looking for other things, only PMR responds so well to 15 to 20mg.

    You mention headaches - what are they like and did you have them before?

  • MrsO-UK_Surrey
    MrsO-UK_Surrey heather39822

    Posted

    Heather, if you started on as high a dose as 40mgs, then it sounds as though you may have been diagnosed with GCA?  If so, then having reduced to 12.5mgs  within 6 months is obviously proving too fast a reduction to control your inflammation for now.  It sounds as though having successfully reached 15mg by the end of October and then reducing to 12.5mg after just two weeks is where the pain returned, whereas remaining there for another couple of weeks or even just trying a 1mg reduction may have been more successful.

    Erika is so right in saying that no doubt the stress you have been experiencing with a house move will definitely not have helped - it is never wise to make any reductions in dose either leading up to, or soon after, such a stressful event.

    As you have only been back on 15mg for less than two weeks, then it might just take a little bit longer for the inflammation to resolve at this dose.  Were you someone who had raised markers of inflammation in your blood at diagnosis?  Then if so, the blood tests should be repeated to give you some guidance regarding the present inflammation levels,  

    I don't know in which country you are, but are 2.5 and 1mg tablets not available?  I could not have managed without my 1mg tablets during my PMR/GCA days.  If you can only get 5mgs tablets and can only reduce by cutting one in half to get 2.5, then one way of managing this is to reduce by 2.5 on just one day of the week at first, then if that proves successful trying another day at 2.5, gradually reducing the number of days back at the 15mg dose.

    Have you got any visual symptoms, because If it was GCA you were diagnosed with, and your head pain, in particular, continues then you do need, at least, to see an ophthalmologist to check the back of your eyes?  You might just need to return to 20mg for a while to resolve the head pain.  

    You were one of the lucky ones reaching a "pain-free" state on the higher doses - very few people manage to achieve that.  Hopefully with slower tapering and smaller reductions in the future you will again be successful.

      

    • heather39822
      heather39822 MrsO-UK_Surrey

      Posted

      Thank you all for your supportive replies.

      Yes Eileen, I was using your plan. I had been on 15mg for three weeks, did one day on 12.5 and returned to 15mg for another six days - with bearable discomfort handled with paracetamol - and then 12.5 on the seventh day. That was on November 27 and it was a couple of days later that the really bad pain set in. So have never gone back to 12.5.

      Mrs O I Live in Zimbabwe where only 5mg tablets are available. When I was prescribed 40mg at diagnosis in June - and then after a too-fast reduction plan to 10 (!!!) in six weeks given to me by my GP and a resulting flare, back to 40 again in August - I knew no different but to abide by my doctor's recommended dose. Perhaps it was that high dose that has kept me so deliciously pain-free for so long.

      I don't think she suspected GCA; I think 40mg is the starting dose she prescribes for her few PMR patients. By the way, I dont know another (poor) soul in this country with this horrid disorder.

      When I was in England in September, I had an earlier than recommended eye test as my vision was a bit blurry. I told the optician of my GCA concerns and she assured me there was no sign of the condition on testing my eyes. Just need new glasses.

      As for my headaches, I have suffered from these all my adult life, although far less since menopause. I think my headaches now are just another indication of my general state of poor health and pain.

      By the way I did have severely raised ESR and CRP in my June blood test - 105 for the former and 58 the latter; in the September test the ESR was 5 and the CRP 6. I had a blood test last week and have not heard from the doctor's rooms to suggest anything amiss, but will check on those figures tomorrow.

      Do the fundis suggest I return to 20mg in view of my upcoming trip or do I persevere with 15mg? Pray it's not back to 30?

      Again my thanks to you all for your kindness. What a lifeline - especially feeling so isolated in the middle of Africa.

    • EileenH
      EileenH heather39822

      Posted

      It depends on what the ESR/CRP says this week - those figures are excellent and suggest the inflammation was well under control. You could try 20 and see if it is better - for the purposes of the trip. 

      How long are you to be in the UK? Since I have just returned from my 3rd Bowen session (oh bliss!) I wonder if you are there long enough to find a practitioner to try a session or two? I'm inclined to feel this isn't just the PMR, especially if you reacted so dramatically to 2x 1 day of 12.5mg a week apart. It could be coincidence. 

      Where are the girls? Where will you be?

    • heather39822
      heather39822 EileenH

      Posted

      Hi Eileen. It's taken me this long since you asked to get my blood results. My ESR is up to 11, while CRP is on 6.4. Perhaps the former showing raised inflammation which is why my neck so sore and costant low-grade headache? Haven't seen my doctor since the test, so results have not been explained to me.

      Still on 15mg, but may increase tomorrow to 20 as I fly to England on Thursday and dread the 14 hours flying time and five-hour stopover in hideous Addis Ababa airport. Will be in London and return home early January - with similar flight. Need to do some deep breathing...and brace myself.

    • EileenH
      EileenH heather39822

      Posted

      The ESR and CRP are still very firmly at a level that no doctor would accept as being of concern. The ESR is double what it was - but that could be just a cold or even the blood sample. 

      Again, I would very much be inclined to suspect this really isn't the PMR as such - but tension from the upheaval causing the pain. Have the girls bought your present yet? A few spa sessions with a really good masseur would probably help - concentrating on shoulders and neck smile

      It is amazing what can cause it - at one time just catching my head as getting out of the car would do it. The really big sieze-up two and a bit years ago happened after tripping and falling headlong. I still cannot carry things without problems afterwards - and packing up the house will have involved plenty of that. The doctors' explanation is that you back will compensate for a long time but eventually something just tips the balance over and your entire back goes into spasm. And it is rarely anything major at the end - you notice whiplash after an accident, you don't see it creeping up with heavy weights, bending and lifting wrongly, tripping. Until it happens!

    • heather39822
      heather39822 EileenH

      Posted

      Thanks Eileen. as always you are a tonic on the other side of this keyboard. In bed feeling sorry for myself. So good to know we are not alone in our achiness. I think will treat myself to a back massage tomorrow.
    • EileenH
      EileenH heather39822

      Posted

      That sounds like a VERY good idea - though be warned, you may feel worse for a while afterwards! The massage may release trapped inflammatory cytokines into the system. So drink loads of water before and after - that does help, I promise. 
  • pat38625
    pat38625 heather39822

    Posted

    Hi Heather, I am so sorry that you are having such a time of it.  From my own experience stress was the major  or only factor in PMR.  I was just diagnosed last month and I have no intentions of reducing until after the new year.  I am on 20mg and am happy to have mobility back and to be more or less pain free.  I do hope you get sorted out.  I know I couldn't go back to that type of pain.  

    It's easier said than done, but if possible rest when you can.  Or try listening to a relaxing guided meditation.  

  • Mrs.Mac-Canada
    Mrs.Mac-Canada heather39822

    Posted

    Hi Heather,  sorry to hear you are having so much pain especially at a time when you need to feel well enough to negotiate a move and travel. 

    I know that stress is a major contributor to how PMR responds to pred for me.  Thanks to the great advice in this forum I have learned to recognize when my body is not happy with me and I either stay at the current dose longer or if the symptoms become to much I increase a bit until I'm through the stressful time.

    I know that doctors don't want you on high doses of pred and like most people on this forum we would love to pitch it in the trash but my experience has taught me patience and, like the wise women here say, our goal is to find the dose that "manages" our symptoms not to necessarily get to 0.

    I am currently at 4mgs which I am very happy with but it was more difficult getting there because of my impatience and reducing to quickly. 

    I think it is also causes more flares if you go up and down in your doses.  We are all so different but I think I'd wait to find the results of your blood work but would likely go to 20 mgs till after the move is complete and your travelling is over.  This is a season of much more stress anyway and if a higher dose works for you what the heck.

    Hope you feel better and that your move goes smoothly and that you have a wonderful time with your children.

    Hugs,  Diana

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.