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Not sure what to do. Need some advice. PMR since 2013.

Posted , 6 users are following.

Kassie_beetle
Kassie_beetle

Have been on 12.5mgms for about 2 months reducing down slowly but I keep getting pain in thighs  hips and shoulders. (difficulty sitting and standing and getting in and out of car), I have increased the dose up to 15 mgms for a couple of days (reluctantly I might add) pain settles for a few days then comes back. Wanting to know what constitutes a flare? How long do flares last? Should I start back on 15mgms and do the Eileen reduction? I am just a bit confused as I am not sure why I am not settling. I don't get as tired as I used to. Get about 3-4 hours in the morning when I can do things like washing, cooking (if I feel like it) then become a couch potato for the rest of the day.I haven't been sleeping during the day like I used to.I have developed quite severe sciatica since my last post and am taking Lyrica and Tramadol for this. The sciatica is heaps better but not entirely gone. Still have insomnia also thinking about splitting pred dose to see if this helps. Would like some advice on times to take split doses.My GP lets me do whatever I want with the pred. My last ESR was 34 and CRP was 8. it has been reducing down from 26 since first diagnosed 2 years ago. Thank you for caring and sharing. Look forward to your responses.

Kathy

0 likes, 14 replies

14 Replies

  • EileenH
    EileenH Kassie_beetle

    Posted

    I would suggest that the PMR is mixed up with the sciatica - which could well be due to lower back muscular problems which are irritating the sciatic nerve. Myofascial pain syndrome is often found alongside PMR and will respond a bit to the higher doses of pred but as you lower the dose it surfaces again. It responds far better to local cortisone injections and maybe local muscle relaxant injections than to oral pred - you need less when it is targetted.

    I (and others) have dealt with it using Bowen therapy. Manual mobilisation of the trigger spots in the lower back can also be done by a physiotherapist. 

  • Diana112
    Diana112 Kassie_beetle

    Posted

    Dear Kathy, I am so sorry to hear that the inflamation in PMR is proving so reluctant to subside.  I am only a newbie here so can't advise you and I am sure Eileen will be along soon to help you.  It really does sound as if you might need to up your dose to 20 mg in the short term to bring the inflamation under control.  I do find that if I sit around for too long the hip pain is worse and so I try and make sure to have a walk each day. 
  • Kassie_beetle
    Kassie_beetle

    Posted

    Thanks Eileen. Can I ask when you talk about muscle relaxant injections what drugs do you mean. I will make an appt to see a Physio. Thanks K.
    • EileenH
      EileenH Kassie_beetle

      Posted

      Originally when I had severe low back/sacroiliac joint problems 3 years ago I was admitted for iv steroids and muscle relaxants. I reacted badly to the diazepam so was then sent for the slower version which involved cortisone injections into the area using a technique that is called needling in the USA, as far as I know it isn't generally used in the UK but it is used over most of German-speaking Europe. The pain specialist used other drugs but I don't know what. In needling there are repeated injections under the skin/into the top layer of muscle which can be done using various substances - including saline. But a physio should be able to advise and some of what I had was a manual technique. Sorry, can't give much info than that.
  • tina-uk_cwall
    tina-uk_cwall Kassie_beetle

    Posted

    Hi kassie, how disappointing for you. May I ask why you were prescribed 26mgs of prednisolone when you were first diagnosed and not the usual 15mgs.

    you say that you have upped the dose to 15 which seems to work for a couple of days then all the pain starts again. I'm not sure if this is how it should be and. There sciatica could be hindering your recovery rate as this is putting more stress on your body.

    also not sure if splitting the dose would help, it works for some people but the normal way to take the dose is as 1. Have you any other condition that could be producing pain or putting extra strain on your body thereby hindering your recovery rate. Sorry I can help you but I'm still puzzled about the 26mgs as your first dose? All the best, Christina 

  • MrsO-UK_Surrey
    MrsO-UK_Surrey Kassie_beetle

    Posted

    Kassie, I have a spinal problem and have experienced sciatica as a result on a number of occasions over the years  It did cause plenty of confusion during my time with PMR/GCA.  I have found the very best way to deal with it when it strikes is to don a support girdle for a few days - it always works for me, and I wonder if it would help you too.  If it is purely sciatica that is the main source of pain at the moment, then I would question the need to increase the dose back up to 15mg, especially as your last blood tests were still heading in the right direction and not far above what is considered to be normal.  Perhaps getting those blood tests repeated would provide a guide.
  • Kassie_beetle
    Kassie_beetle

    Posted

    Hi Christina,

    Sorry I should have clarified my comment. The 26 actually refers to the CRP reading when I was first diagnosed in 2013 not the Pred dose. Silly me. In relation to other medical conditions that may be affecting me. I have had all thyroid and  parathyroid glands surgically removed. I personally think this may be  linked to the PMR as there is a connection with auto immune as well.

    Cheers

    Kathy

    • tina-uk_cwall
      tina-uk_cwall Kassie_beetle

      Posted

      Hi kathy, I've just looked back at your thread and I think it was me that didn't read it correctly. So when you were diagnosed you were prescribed 15mgs and you have been heading "South" since then. I agree with Mrs o, perhaps a blood test to see how they're doing. Also, are you able to tell the difference between the sciata pain and the PMR pain because if you are are then that's always a good indication as to whether you are having a PMR flare or a sciata flare and that way you will know whether you need to increase your preds or not.

      if you do have a flare it will not reduce of its own accord it will only reduce when it's been brought under control with preds. I had a flare and upped my dose of preds  from 9mgs to 10mgs and stayed in that dose for good 6 weeks then reduced using the very slow and small reduction method. I only reduce by .5 and stay on each dose for 6 weeks.

      and maybe I am wrong as I'm not medically qualified but your body has a lot to contend with what with your other conditions so maybe it will take you longer to get to the finishing post. I would hang on at 15mgs, when I upped my preds to 10mgs it definately took longer second time round to get all the inflamation under control, and stay there for 6 weeks then reduce perhaps only 1mgs at a time staying on each dose for 6 weeks. That way each dose has plenty of time to do its work. Then when you get down to 10 then start Eileen's very slow, very small reduction method. Remember I have no medical training. All the best, Christina 

    • Kassie_beetle
      Kassie_beetle tina-uk_cwall

      Posted

      Dear Christina,

      Thank you for your support. It is nice to know that there are people out there who do understand. My friends and family just don't understand what it is like to turn into a ball of mush and not be able to do normal things like going shopping without it impacting on your life.

      Yes, I am sure that the pain I am feeling is the PMR.Please see my response to Mrs O. I will see a physio and then have a think about increasing the pred. I am glad I can record TV programs as I watch them at night when I cannot sleep. I would be in trouble if I couldn't do this as I would probaly buy all the products they sell on The TV network shows overnight!

      Thanks

      Kathy

  • Kassie_beetle
    Kassie_beetle

    Posted

    Hello Mrs O.

    Thank you for your comments.Sorry to hear that you to suffer from sciatica.It is truly ugly pain. The worst pain I have ever experienced.  I do feel that the pain I am talking about is the PMR pain because it is in the front of my thighs as opposed to the sciatica which goes down the side of my leg. It is interseting to hear about the support girdle.Was this obtained through a physio?

    Cheers

    Kathy

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Kassie_beetle

      Posted

      Oh yes, Kathy, "front of thigh" pain, and along with pain in the groin was my very first PMR symptom and I remember it well!  

      Now that you have mentioned the thigh pain, It certainly does sound as though your inflammation is not under control at present in spite of the return to 15mg.  Perhaps you just need a bit longer at this dose to get things under control again, and then, if you haven't tried reducing in very small amounts in the past, you should try doing so this time around, trying 14mg for one day, followed by 15mg for 6 days, 14mg for one day followed by 15mg for 5 days, and so on.

      The support girdle I refer to at present is simply a supportive panti girdle.  An orthopaedic consultant did get me measured and fitted with an all-singing all-dancing corset (you know those awful ones with laces and bones) many years ago which really did help on those occasions when my slipped vertebrae went into complete spasm.  However, that was assigned to the bin long ago when I grew out of it!  The panti girdle is sufficient help in times of need these days.....and much more comfortable!

    • EileenH
      EileenH Kassie_beetle

      Posted

      You could get both sorts of pain from myofascial pain syndrome - it traps/irritates the sciatic nerve and also causes referred pain into the thigh and upper leg.

      Try searching for myofascial pain syndrome - the pictures tell the story better and quicker than I can write!

  • erika59785
    erika59785 Kassie_beetle

    Posted

    I have to agree that Sciatica pain is one of the worst pain which made me go to Urgent Care in the middle of the night right after Christmas.  Physio and certain execises have helped a great deal --- together for the piriformis syndrome and the displaced sacroiliac joint at the time It was  HORRIBLE PAIN but much better now.

    I wish you speedy recovery!

     

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