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Reducing my pred.

Posted , 13 users are following.

Crystalcave
Crystalcave

Hi there,  haven't been on here to write for a while but I do read others blogs. Wondered if you could help me.  I've been diagnosed with pmr for three years and have gone from 60mg when first diagnosed to14 mg which I'm on now.  Like everyone else suffer from all the pains every time I reduce, even by 1mg per month.  I went to see my Rheumy this week and he wasn't happy with me at all as I was still on 14mg .  He said he wants to see me going down by 1mg every two weeks.  I can hardly walk at the moment, my shoulders, neck and arms are all very painfully, which I told him.  He has referred me to a physio.  I feel that I know my own body better than he does but feel I have no choose as he can stop my medication.  Has anyone got any comments.

thanks,  sue

0 likes, 47 replies

47 Replies

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  • yvonne76152
    yvonne76152 Crystalcave

    Posted

    i did try methatrexate for a while that may be better than pred alone and if that helps you may be able to stop pred altogether.

     

    • EileenH
      EileenH yvonne76152

      Posted

      This is aimed at everybody, not just Yvonne but the new format of the site means it would appear somewhere else and I want it close to these posts.

      There are no trials of LDN in these diseases, it has been tried for MS and the results did merit further study - it wasn't particularly convincing as it was - although some other countries (Sweden I think) do try it and I do know one lady there whose doctor prescribes it and for whom it certainly made her feel better to start with - I don't know how she is getting on with it now.

      Of course the websites supporting the use of LDN tell you how wonderful it is - all the alternative treatments are the same and not entirely reliable. Currently LDN is only available privately so is not controlled or monitored. It is approved and used for drug addiction in the UK however - this would be what is called off-label use. 

      Methotrexate alters the way your body metabolises pred and may allow you to achieve the same result with a lower dose of pred. Some rheumys use it and it was part of the guidelines formerly - however, it has now been decided there is no real evidence that it achieves a long term effect. It is the first line treatment for rheumatoid arthritis and about a fifth of PMR diagnoses are later reconsidered, the most common change of dx being to late-onset RA (LORA). It is now felt it is likely that the patients who benefit from methotrexate may be LORA patients who were given the wrong diagnosis and that was why they were unable to gain benefit from a lower dose of pred.

      If you have PMR then taking methotrexate will not replace the pred - it may reduce the pred dose you need but you are taking 2 drugs instead of one and it also has some quite unpleasant side effects - although, of course, not everyone suffers them. Don't assume because you take mtx that you will be able to stop the pred any sooner.

    • mary68968
      mary68968 EileenH

      Posted

      Thanks for your post Eileen.  As someone fairly new to PMR & pred it is very useful.  I have been on pred for about 3 & 1/2 months now.  First 15mg then 20 now back to 15mg.  Was able to do this with help from this site. I had a really difficult time adjusting to pred the first month.  So many weird side effects I just wasn't sure I could take it, but knew it was really the only alternative.  I think for many of us less is more.  I do not want to add yet another drug that may or may not help with all the side effects that could even mask the original problem & think this will come up at my next appt.

      My niece was diagnosed with lupus & they put her on so many different drugs it was hard to tell what was going on & many years later she was rediagnosed with RA.

  • yvonne76152
    yvonne76152 Crystalcave

    Posted

    eileen what you say is true to an extent but Naltrexone has been used and accepted for years for people coming of drugs and drink.This low dose naltrexone has been used for years also for many conditions.it is fully monitered by the doctors of each patient.I was practically bed bound when my body started to ignore the prednisilone.pred is a necessity to control early symptoms but is not advised long term.LDN will i am sure be used and fully tested in the future.but for now many people like me have to find an alternative to pred.there are people joining every day, its not for all but worth a try.Please dont close your mind to a product which works and has little side effects.Untill there is an effective treatment to stop our bodies immune system failing this way,we have to try to get some way of carrying on our lives. I would not put forward ,anyproduct i did not believe in. nor would i do it without my doctors full permission.

    Please look into it and if pred doesnt work then offer them this LDN as a possibility at least. very sincerely Yvonne.

  • arthur36
    arthur36 Crystalcave

    Posted

    When I read an earlier note from you about being ;clumsy;, my heart went out tio you. Bad enough haaving all these probs without haviingaaan understanding shoulder to lean on. I live on my own, so do not have to ccare for others. To do so would be quite impossible. I only  wish I could offer you some advice, but since hitting my hheard , am not qualified to do so. Can only say that when things get too much, I am not afraid to taake the additional co-codamil -also- a zimmer is a visible sign of a need for support.

    All the best for your futurre

    Arthur24

  • muirkelsi
    muirkelsi Crystalcave

    Posted

    Good afternoon Sue,

    I have had PMR since last November, and after consulting with my doctor who was not really very knowledgeable on the subject, decided to start me on 15mg of prednislone. It was great, but as soon as I tried to reduce the pains came back.   She sent me to a rheumatologist,  who was great, and gave me the following prednisolone reduction regime.

    15mg for 4 weeks, 12.5 for 2 weeks, 10mg for 4 weeks, 9mg for 4 weeks, 8mg for 4 weeks,  7mg for 4 weeks, 6mg for 4 weeks, 5mg for 8 weeks, 4mg for 8 weeks, 3mg for 8 weeks, 2mg for 8 weeks and 1mg for 8 weeks.

    I have just started on 7mg, and see the rheumatologist at the end of this month when I will be half way through the 7mg.

    When I initially drop, I have a couple of day with aching shoulders, but am then ok.

    The problem I have is that I have put on weight, and my eyes are puffy with dark shadows. I will keep going, but really was hoping to see some improvement in the way I look by now. I just feel so puffed up!!!!

    Regards

    Grace

    • Crystalcave
      Crystalcave muirkelsi

      Posted

      Hi Grace, 

      sorry for the delay in righting back, I've not been too well.

      i am also on prednisalone, 14 mg at the moment and have put on a couple of stone.  I'm hoping that it will come back off as I reduce. It's so uncomfortable isn't it?  Also if I get a cut or bruise it takes forever to go.  I am on the reducing schedule that was given me on this site.  It's slow but the pains aren't so sever to cope with.  My rheumatologist said he wants me to reduce by 1mg every two weeks but it's just too painfully.  Rheumatology nurse said it's not him that's in pain!!  Which is true of course. I do hope your feeling a bit better soon.  Do you work at all?  I had to give up working three years ago due to having hip dysplacia.  I'm waiting for a hip replacement.  With pmr and diabetes on top it's as much as I can cope with.

      anyway,  look forward to hearing how you are

      take care

        

      Sue 

    • muirkelsi
      muirkelsi Crystalcave

      Posted

      Hi Sue,

      I too think that the extra weight is so uncomfortable, and when I look in the mirror I see dark shadows under my eyes. I am also so lethargic, and wonder if this is the effects of the steroids. I was diagnosed with PMR last November, and started on 15mg of steroids. I am now down to 7mg, and only really feel my shoulders sore first thing in the morning, but it feels like I have had it for years. I go to see my rheumatologist in ten days time, and hope he tells me that being lethargic is normal, and not just me being lazy. Maybe it is a bit of both!!!

      I have had a double hip replacement (three years inbetween first and second operation), and it was one of the best things I ever did. I have never even had a twinge since. I went into hospital on the Sunday night, operated Monday morning, and home on Wednesday morning once the doctor saw that I could walk up and down stairs with the help of a walking stick. I used the  walking stick for a few weeks, and then was  just about back to normal.

      I was working part time, and went back after a few weeks, but  that was about two years ago as I am 69 now an thoroughly enjoying my retirement.

      Please let me know how you are getting on.

      Kind regards,

      Grace

    • EileenH
      EileenH muirkelsi

      Posted

      The lethargy or fatigue is part of many autoimmune disorders and unfortunately the pred doesn't have any effect on that part of PMR, it just makes the symptoms bearable until the underlying disease burns out. Not normal - but normal for PMR! I found I was less so if I could force myself out to the gym for an aqua class - about the only exercise I could do at one time. After the class I was less stiff and felt more healthily tired. For most people though the most important thing is to learn to pace themselves. Even young people with autoimmune illnesses find they need to rest - and strangely it actually gives you more useful hours of the day if you have at least a rest in the afternoon, many sleep. Instead of forcing yourself through the evening to stay up until a "normal" bedtime you find you are able to get a second wind - and whilst you may not be out partying, you are able to do things more as you did pre-PMR. 

      I have had PMR for 10 years now, for 5 years undiagnosed and untreated - and for the first time am on below 5mg pred. I feel almost normal (I think) and have just spent 5 weeks touring the UK, visiting family and friends and attending a couple of meetings. I did almost all the driving, probably over 3000 miles in total, and didn't ever feel the horrible fatigue of PMR. It does get better, it really does!

  • lynn90758
    lynn90758 Crystalcave

    Posted

    Hi, I am writing this on behalf of my father. He has suffered for many years and has had numerous scans ct's etc and has been told it is due to old age.

    He was very active, but his walking is now a shuffle he is in constant pain. My question is where do you get a diagnosis as I have been with my father to the GP's and they have never come up with PMR. In my opinion he has the symptoms. We also live in Tamworth. Can you help lead us in the right direction.

    Many thanks

    Lynn

    • MrsO-UK_Surrey
      MrsO-UK_Surrey lynn90758

      Posted

      Lynn, what exactly are your Dad's symptoms?  PMR usually manifests itself with pain around the shoulder girdle and the hip girdle.  Some people find it is their legs that are more affected, particularly in the groin area and down the front of the thighs, whilst others find difficulty in raising their arms.

      Has your Dad's GP carried out blood tests to check for inflammation in his body, namely ESR and CRP?  Many patients with PMR have high markers although it is possible to still have PMR even if the blood markers are not raised.

      The Daily Mail carried an article last week about a man in his late 70's who failed to get a diagnosis for his PMR until an osteopath friend suggested the possibility.  There is no specific test available and it's often a diagnosis of exclusion after tests for other conditions have been ruled out.

      If, after reading the above, you still feel your Dad may have PMR, and his GP isn't helpful, then he should ask his GP for referral to a rheumatologist.

    • EileenH
      EileenH lynn90758

      Posted

      If your father has stiffness in shoulders and hips, morning stiffness that lasts more than about 45 minutes, difficulty in raising his arms above shoulder height, stiffness after periods of rest, systemic symptoms such as feeling fluey, fatigue, lethargy, loss of appetite, weight loss, low-grade fever and depression, oedema in his hands and feet then this would be typical of PMR. The GP should take a blood sample and have the ESR and CRP levels checked. These are indicators of inflammation in the body and if they are raised then that would be another pointer to PMR - but 1 in 6 patients do not have raised levels. 

      If the GP isn't prepared to help, then ask for a referral to a rheumatologist - or try a different GP.

      Follow this link to a post elsewhere on this forum

      https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

      and in the first post you will find more links to a site with a lot of info and the last one is a link to a paper called "Our approach to the diagnosis and management of polymyalgia rheumatica and giant cell arteritis" by members of the Bristol rheumatology group. It is aimed at GPs to help them do just that. 

      This link

      https://patient.info/doctor/polymyalgia-rheumatica-pro

      is to the PMR page on this site aimed at professionals.

      Both are actually not too difficult for many people to read but you could point the GP at them if they confirm your suspicion about what your father has - they should have no problem understanding them.

      I don't know any particular centres of excellence for PMR in your area to point you to but what I have written is the starting point. How old is your father? By the time people are in their late 70s/80s half of them have developed PMR, it is the most common inflammatory arthritis in over 60s - but it could be another inflammatory arthritis. But to dismiss it as "old age" is not acceptable - and CTs and scans won't show a lot unless it was a particular type of scan which is pretty new, very expensive and isn't commonly available. Go with your father to the GP and ask "could it be..." - which was I did in the end - and hand over your references if they show no interest. Then it is a case of someone agreeing it is apossibility and trying a moderate dose of pred (as described in the Bristol paper). 

    • lynn90758
      lynn90758 MrsO-UK_Surrey

      Posted

      Many thanks for taking an interest and the suggestions.

      Dads symptoms are mainly his hips and legs. he has had shoulder pain in the past along with the neck, but it is mainly his lower back, hips groin and legs. He has difficulty in standing up, walking etc. He has night sweats. To my knowledge he has not been tested for ESR and CRP. We did see the Daily Mail article which was the prompt for this diagnosis as they have not been able to give one.I will be getting a referral to Rheumatolgist,

      My father is 84 and it is haeartbreaking to watch him suffer the way he is as he has always been active. His father went off his legs a very long time ago and he was diagnosed with Parkinson, which on reflection he did not have and my father definately does not have it.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey lynn90758

      Posted

      Lynn, I can so understand how wretched it must be for you to watch your Dad suffering like this.  I'm sure he appreciates all that you are doing in trying to help to get a diagnosis for his pain.  His areas of pain, together with the night sweats, do sound very much like PMR, and the linked condition GCA can cause neck pain.

      It's so good if the DM article should actually prove to be of help for your Dad - one of the main aims of the Charity PMRGCAuk is to raise awareness into PMR and GCA, and the DM is a good vehicle for doing this as it has such wide distribution.

      One gentleman contacted me recently suspecting that he might have PMR but he couldn't get a diagnosis for his pain because his GP said that he didn't have raised blood test markers.  On hearing that around a quarter of sufferers never have raised markers, he returned to his GP with a suggestion of being started on a trial dose of 15mg of the steroid, Prednisolone.  He had complete resolution in his pain in a couple of days, and is now starting to slowly taper down the steroids.

      In which part of the country are you?  It may be a long wait for an NHS  appointment with a rheumatologist - meanwhile the blood tests might reveal inflammation, in which case your Dad's GP might be more agreeable to starting a trial dose of steroids - if his pain reduces by around 70% in a few days, then he will have an answer.

      Do pass on all good wishes to your Dad, and do come back and let us know how he gets on.

    • EileenH
      EileenH lynn90758

      Posted

      Yes - I think what MrsO has said is a good place to start. Ask your GP for ESR and CRP to be done but ALSO if they would please consider the "sandwich diagnosis test" described in the Bristol paper: one week of vit C, one week of 15mg/day pred and another week of vit C. The symptoms should improve dramatically during the week of 15mg pred and return in a similar time on stopping the pred and restarting the vit C. That is what the Bristol group have used to "test" whether atypical patients (i.e. young or with normal blood values) do have pred-responsive PMR or another inflammatory arthritis that resembles it. 

      If it is PMR and/or pred relieves the symptoms, at 84 I don't think they need to panic too much about long term side effects and if it makes him more comfortable and mobile then it will have achieved a great deal. If it weren't PMR with no response to pred then the least they could do is offer an opinion from a rheumatologist who might offer another medication to help with the pain and immobility. 

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