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Hydroxychloroquine pain relief not working!

Posted , 4 users are following.

linda17563
linda17563

My sister has been in terrible pain for 9 months due to medium cartiliage damage, and some osteoarthritis in her knee (she`s 49) After many MRI`s xrays scans etc, they say if they operate they could make her worse....so they have prescribed (4 months ago) Hydroxychloroquine, it has made no difference.  Neither do pain killers.  Her leg is so stiff, she is practically house bound.  She does all the excercises, but is in agony afterwards.  Any suggestions please, and has anyone else tried this medication.  Thank you.

0 likes, 20 replies

20 Replies

  • anita78925
    anita78925 linda17563

    Posted

    PLEASE TRY GOING BACK TO YOUR PHYSICIAN  WHAT YOU ARE PRESENTLY DOING DOESNT SEEM TO BE WORKING..I AM NOT FAMILIAR WITH YOUR PAIN MEDS....BUT NARCOTICS ARE ONLY A TEMPORARY  SOLUTION...ITS SO HARD TO KEEP PUSHING THROUGH THE PAIN....KEEP MOVING....I AM NOW AT 12 WEEKS POST TKR...I KNOW THE PAIN AND DISCOURAGEMENT...BE A STRONG ADVOCATE FOR YOURSELF  !
  • linda17563
    linda17563

    Posted

    Thank you for that.  I am worried for my sister`s state of mind, the hospital GP`s etc, don`t seem to appreciate the pain she is in  The medication is what they call a DMARD, .....We have another appointment in two weeks, and I will be a strong advocate!!..Ps , may I ask what is post TKR??
  • debbie02705
    debbie02705 linda17563

    Posted

    go back to the doc and ask for a referal to see a surgeon , and dont let them fob her off , im 53 and have had both knees done , so ive been there ,ended up on morphine for over a year , i have now stopped btaking the morphine, but feeling like that is no joke 

     

    • linda17563
      linda17563 debbie02705

      Posted

      Wea re thinking of asking for Morphine when we go to hospital in two weeks time, what advice do you have on that please??
    • debbie02705
      debbie02705 linda17563

      Posted

      i was on morphine for well over a year and couldnt have done without it , it worked for me and i didnt have any problem giving it up , just a few head  aches and a little sickly feelings only for a few days , , apparently i have a high tollerence to pain meds , it can make you sleepy , x
  • sarah44992
    sarah44992 linda17563

    Posted

    When was the last time your sister visited a physio? From a physio point of view there are a number of things to help her cope with pain and get more range of motion out of said knee:

    1) Muscle release- either use a foam roller or a spikey ball and concentrate on front of thigh, back of thigh, calf. I also get my clients releasing their gluteals.

    2 ) Good old fashioned hot/cold treatment. Probably would prefer hot at this stage due to it being 9 months old.

    3)Gentle passive /accessory movements done by physio

    3 ) strengthening the hip/gluteal muscles so as to off load the knee somewhat.

    My caveat here is that she will need an assessment done by a pro-active physio inorder to get the right treatment and the right order of play.

    Good Luck

    • linda17563
      linda17563 sarah44992

      Posted

      Thank you Sarah, my sister has seen a physio a few times, the only advice was buy an indoor mini cycle (to sit on chair with) she has done this a few times, but her knee stiffens more.  Also they took her into the hydropool, where she felt wonderful while in there but.....the pain was tremendous for days aftrewards, and very stiff.  This frightens her.  I must admit she isn`t walking right, (waddling more like) and now has pain in her hip.....How do we find a physio that is familiar with this type of problem? is it a sports physio, any advice on that would help.  she`s prepared to do anything!  The hospital are`nt doing any good.  We saw an Orthopeadic surgeon last year, he said "I might make you worse!" so wouldn`t operate.  How can she be any worse!  Sorry to sound angry, but I am for her....She`s 49, and has already lost one part-time job, and pressure from the other isn`t helping.  Thank You for any advice...
    • linda17563
      linda17563 sarah44992

      Posted

      Just thought I would let you know, my sister has found a "pro-active" physio....she is having Acupunture....and he has set her some exercises to strenghthen the muscles around her knee, he has also told her to get back on her bike! and more importantly, has told her he can help her if she persistes with these, which has given her HOPE!  which makes all the difference...thanks again for your advice before....
  • carol45436
    carol45436 linda17563

    Posted

    I was 49 when I first tore my cartillage and had it cleaned out as soon as the swelling went down. I managed with it after that for another 17 years but couldn't have done that without the op. Now my daughter is having similar problems at 47 so I'll be interested what they suggest for her.
    • linda17563
      linda17563 carol45436

      Posted

      Good luck wih that!  It will be interesting to see what they do suggest.  Maybe  things changed in recent years I don`t know, but I do think they should at least try to improve the quality of life for someone in so much pain....
    • linda17563
      linda17563 carol45436

      Posted

      Good luck wih that!  It will be interesting to see what they do suggest.  Maybe  things changed in recent years I don`t know, but I do think they should at least try to improve the quality of life for someone in so much pain....
    • linda17563
      linda17563 carol45436

      Posted

      Good luck wih that!  It will be interesting to see what they do suggest.  Maybe  things changed in recent years I don`t know, but I do think they should at least try to improve the quality of life for someone in so much pain....
  • tina1966
    tina1966 linda17563

    Posted

    Hi all I would echo the others concerns and ask to be refered to a knee specialist i have suffered for s long time with knee pains which they put down to problems from my back after going back again and again I got a MRI on both knees both are bone on bone arthritis I have had three ops on each knee in the past two years I have even had my kneecaps moved over to the outside so they cannot rub away any more inside. The pain on the left is still horrendous so i have just been back following a new MRI and my surgeon said my left knee has dereriated a lot since my last op in Feb but as im 47 its very young for a replacement could I hang on longer I told him no I haven't really been out for two years hardly leave the house had to leave my job I have wasted that time and if I hold on im just sitting here getting more depresed day by day if I have the op although im not looking forwards to it hopefully I can start to build myself up again get back in to work I have worked since 13 so its a massive difference to me , so please tell her it can be done it's up to each individual consultant as to whethe you need that operation and good luck .I am now booked in for Jan the 6th so any help tips advice will willingly be noted thank you Tina x
    • linda17563
      linda17563 tina1966

      Posted

      Thanks for your reply Tina.  My sister is the same as you housebound and depressed, her knee problem has really changed her as a person.  I don`t think the hospital seem to realise the impact this type of problem hip, knee pain etc has on patients. She has also gained weight which dose`nt help because of being immobile,, but what can you do!  The Rheumatologist referred us to an Orthopeadic surgeon, but he said he could make her worse....well, how can it get worse, she can`t bend it!!  I go with her in two weeks time, and I`m going to push for a knee surgeon like you have said....Good luck with Jan 6th....thank you, from a worried but a supporting sister!....
    • tina1966
      tina1966 linda17563

      Posted

      Linda by supporting your sister you really are helping her and especially going to see the surgeon your sister may be like me says" oh im ok ,not bad blah blah"doesnt really let on how bad things are. When I took someone with me who said what I had become like and that i was struggling I think he took more notice they have to help me in and out the bath even, tell them your doing the shopping the hoovering things you help with things your suster is struggling with because i then ended up on antidepressants and I know its because of my knee situation .Like you day I think the same how can it get worse because im still young I have aged 10 years this last two years so if I hang on another ten years ( I wouldnt be able to anyway) by then I will be a recluse I never see anyone now except family because I got so depressed I pushed all my friends away when they are all still doing things im sat at home not wanting to go because of the pain gradually they get fed up of asking yes go for it ask her to write a list now of her problems she will remember more each day to add rather than try think at the drop of a hat in a clinic room tell them how low she is feeling and I hope she gets a good result thanks for your good wishes let us know how you get in and good luck Tina x
    • linda17563
      linda17563 tina1966

      Posted

      My sister went to the hospital, the consultant seemed more interested in her weight, so this depressed her, but it`s obvious she`s gaining weight, she`s not mobile!...anyway, she has to continue with the drug they have started her on (Hydroxychloroqine), for another 3 months to see if there`s any improvement.....her hand and ankle have become painful and swollen now, so they are going to xray them.  I just wish we had some answers, so we know what we`re dealing with here.  My sister dosen`t feel the hospital helped at all........this awful weather dosen`t help either.  Hope you are ok yourself......or no worse!!
    • sandra37762
      sandra37762 linda17563

      Posted

      I'm sorry your hospital visit was not more positive. Does your sister have osteoarthritis (OA) or rheumatoid arthritis (RA)? The reason I ask is that I thought hydroxychloroquinine was for RA rather than OA. if she has RA she might benefit from a visit to a rheumatologist. Also in Aust we gave chronic pain clinics. If you have them where you are she may find a visit there helpful as well. Hoping you get some help for your sister.
    • linda17563
      linda17563 sandra37762

      Posted

      Thanks for that...my sister has OA, but with her hand and ankle now becoming painful, we are not so sure.  The xrays and scans should tell us more.  She is seeing a rheumatologist, it was her that put her on this drug.  My sister would really benefit (as she tells me) if someone would tell her why her knee is so rigid!!  especially in the morning, she would just like some answers....and relief!  We won`t give up....
    • sandra37762
      sandra37762 linda17563

      Posted

      Her knee might be rigid because of the OA. It is very unfortunate for her if she has both RA and OA. I really hope you get some answers
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