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Just returned from seeing Rheumy! Oh dear...

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linda17563
linda17563

Have just had my much awaited for appointment...well, we did not agree at all...Feeling ill, with blurred vision and very drained, practically house bound to cut a long story short...I had in the meantime split mt my dose since last week.  She told me I MUST get off these steroids, because three years is far too long, I went up to 15mg xmas gone, because of the blurred vision, she now says I must come down 1mg per month, so I suggested when I get to 10mg, that I do it slower....no way, (but I am!) she says the report which I quoted was rubbish, about less relapses....I have had a blood test, and I`m to have another if I get a flare, but whatever happens, I must come off them.  Because of having Fibromyalgia as well (20years) and not being able to tolerate any bisphohonates (?) bone thickeners as I call them, I`m to have a yearly injection, I would welcome any comments from anyone who has had this....All I can say is she would not budge from what she believed, and certainly wouldn`t listen to me.  She ended by saying dosn`t worry, you`ll be off these awful steroids soon!....( I hope so one day, my way, it will be......SLOWLY)

2 likes, 29 replies

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  • mrsmop
    mrsmop linda17563

    Posted

    Poor Linda,  regarding your Bisphosphonates,  I took them [Alendronic Acid] for about a year but they caused me so much pain, I stopped them.  Have you had a DXA scan?  That surely, should be your first port of call.  I was on steroids for 3 years and my Dermatologist wanted me off them too.  I took the last one last October.  I was on Methotrexate, as a steroid sparing drug but I don't think you benefit from it with PMR.  I stopped taking that after 18 months, again because of bone/joint pain.  I had a DXA scan last November but the results are a secret!  

    I really dislike doctors who don't listen.  It wastes your time and wastes their time and alienates you, the patient.

    Can you see anyone else?

     

  • pat38625
    pat38625 linda17563

    Posted

    Hi§ Linda, I am so sorry to hear of your experience with Rheumy.  My first appt.  with a Rheumy was Friday 27th March and he prescribed A Acid.  I asked him about a Dexa Scan and he said "Yes further down the line".  He gave me a letter for by gp.  I made appt with her and seen her a week later.  I told her I would not be taking the A.Acid and I will take full responsibility for making that decision.  She also couldn't read his writing re: pred, she said she would wait until she received a report from him.  

    Rheumy said he would see me in 8 weeks time.  I will deal with that situation as and when it arises.  I will be doing it MY WAY not anyone elses.  Good luck on your journey.  All the best.  Pat

     

  • audrey25251
    audrey25251 linda17563

    Posted

    I too couldn't stand alendronic acid and soon stopped them. With regard to steroids, stick in there whatever your rheumatologist says. Doctors ALWAYS want to get you off them IMMEDIATELY, but you will know what is right for you and reduction MUST be very gradual.
  • tina-uk_cwall
    tina-uk_cwall linda17563

    Posted

    Oh dear linda, you are to have another blood test should you have a flare?! She quite clearly does not grasp that by reducing slowly, it's precisely that that you are lessening the chances of occurring. Also does she not understand that if you have a flare you will have to up your prednisolone so where's the sence in attempting to reduce you quickly in order to get you off them quicker when the end result could be that you could end up having to up your dose because of a flare and therefore you will actually be on them for much longer.

    i'm afraid you may have to be as stubborn as she is. I don't know if you have PMR or GCA or both but if you only have PMR you do not have to be under a rheumatologist and so if you trust your GP you could request that they handle your recovery plan.

    don't forget there's lots of lies that you can say in order to prolong your period on each dose, there's colds, coughs, sore throats, upset tummies, bereavement, stress from events. I'm sorry but I would have no qualms about lying in order to get my own way. Deceitful? Not in my book, drs are not gods and after all she is treating you how she wants to treat you and not how you want to be treated. She is not even willing to compromise so stuff her, drs need to work with their patients not dictate or enforce a certain treatment plan when in fact there are recognised treatment plans written by clinicians who have taken a special interest in this condition. Personally I think her attitude is disrespectful to both you and the clinicians who made the effort to study this illness with more commitment than she is. Stay firm. All the best, christina 

  • Oregonjohn-UK
    Oregonjohn-UK linda17563

    Posted

    I'm just imagining the confrontation with your rheumy - must have been an interesting conversation, wish I was a fly on the wall!   I would stick to your guns Linda and sit down with your GP and work out  a plan that you are 'happy' with.  I'm sure your GP wouldn't want you to reduce so quickly either.  At the end of the day it's your body and you know whats not working and what needs doing - or have I just got a good GP?

    Best of luck, looks like you need it!

  • MrsO-UK_Surrey
    MrsO-UK_Surrey linda17563

    Posted

    Oh dear Linda, not easy when you can't get a rheumy to work with you rather than against you.  Is there not another rheumy in your area who you could see for a second opinion?  You do need to be under a good rheumy if after 3 years you are still unable to reduce successfully below 15mg.

    I believe the yearly injection is still a bisphosphonate - has she given you the name?  Meanwhile, I assume you are taking a calcium supplement, and have had a Vit D blood test to check for any possible deficiency.  Also, have your iron levels been checked for any signs of anaemia which could lead to you feeling so "drained".

    If you have no symptoms of GCA, then the blurred vision is probably being caused by the steroids.  

    Do try and get referred for a second opinion.

     

  • audrey25251
    audrey25251 linda17563

    Posted

    Do you need a GP to work out your plan? If you've been on steroids for 3 years I'm sure you know yourself what would be a suitable plan. I rather envy those of you who talk of "my GP"! My practice is one of those so huge you never see the same GP twice, and if you happen to see one you like and trust and ask to see them again, if you're lucky you'll be given an appointment several weeks ahead, but more normally you find that they've left the practice or are on maternity/paternity leave, or on a sabbatical!

    One good thing about my practice however is that none of the doctors has tried to get me to make a rapid reduction of steroids. (I am currently on 25pd and find it difficult to reduce - I have both PMR and GCA). They seem happy enough to let me choose how I manage the illnesses. Of couse (being cynical) they may well think she's almost 80 and not much longer for this world anyway so it doesn't much matter what she does!. I am not being critical of such an approach; it means they trust me not to do anything stupid and allows me to work out a plan that suits me without having a doctor hovering over me and nagging me! I do sympathise greatly with you in having to fight your medical consultants. PMR and GCA are horrendous enough without having to fight them.

     

  • Susanne_M_UK
    Susanne_M_UK linda17563

    Posted

    Linda. I'm sorry your rheumy appointment went so badly.

    I have my appointment on Thursday and I know he is very keen to get me to a much lower dose asap and has mentioned probably starting methotrexate as well. I've been on 40mg Pred since Friday due to flare up and its only today I've felt able to move off the sofa for brief periods.

    • linda17563
      linda17563 Susanne_M_UK

      Posted

      I hope you have a more positive response than I did, but go armed with your questions..It`s ok to lower quicker when the higher dose is for a very short time (a week perhaps) but it`s been written on here that after that never more thaan 10%, which for me is sometimes too much.  We  are all different, but like your Rheumy, mine said yesterday that maybe if I relapse she will try me on something else....well, if Methotrexate is mentioned to me, she can go and whistle (that`s putting it politely!)  have seen what it has done to my sister (with OA) and would rather suffer the pain!... I am so intolerable of medication.... but we are all different....

      Good luck on Thursday...keep me posted....Thanks for your reply..

    • Susanne_M_UK
      Susanne_M_UK linda17563

      Posted

      I attended a talk this morning ar the Surrey Support Group, given by Professor Dasgupta of Southend University Hospital. He is also President of PMRGCA UK and a real authority on PMR and FAX and seems to care deeply about the patients' s voices.

      I asked him afterwards about his opinion of my rheumy wanting to try me on methotrexate. He was totally for it and said he supported that and that it was absolutely the right decision in my case, having been on Preds fir over 5 years.

      I know we are all different and each situation is different, but I'm relieved to hear his view, as an authority I trust. I'm sorry your sister has suffered because of methotrexate.

      I am now willing to give it a go and hope I don't have to eat my words down the line!

    • Susanne_M_UK
      Susanne_M_UK

      Posted

      Blasted autocorrect! GCA, not fax!
    • EileenH
      EileenH Susanne_M_UK

      Posted

      I'm afraid to say I do wish that man would get his brain in gear - he has signed his name to a paper that says MTX does not have a place in reducing pred and there are many rheumies outside the UK who are totally convinced, and have been for a long time, that it has not got a place in GCA at all. You have been on pred for 5 years for PMR, now you have GCA. That is a different kettle of fish IMHO.

      However - I would say try it - but do not accept feeling worse rather than better just to be taking MTX if it isn't working to reduce the pred. That just puts 2 lots of side effects onto the list. 

    • linda17563
      linda17563 Susanne_M_UK

      Posted

      He has only been known to be very good....how lucky to be to attend that.

      Go for it I would with mxt....in my case the Fibromyalgia gives me lots of problems....I can just about take one Paracetamol for pain without side affects for the pain......Good luck.....

    • Susanne_M_UK
      Susanne_M_UK EileenH

      Posted

      Eileen, I will try methotrexate and see how I go. If it doesn't work out, I will say so. I'm a bit desperate to get meds right, like we all are, and I will give it a go. Who knows, I may be saying I hate it in a few weeks time.
    • Susanne_M_UK
      Susanne_M_UK linda17563

      Posted

      He was fantastic. Very concerned about how WE feel, rather than how GPS and they'd feel. His whole ethos was about the patient.
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Susanne_M_UK

      Posted

      Susanne

      The following post has appeared on the Healthunlocked forum this morning and I thought you'd find it very helpful:

      "I began taking MTX for my GCA from the very beginning of my illness because high dose steroids caused mania. So I have never been on 'just steroids' for the last 18 months. About 3 months ago I finally felt vaguely normal and pain-free and had some ENERGY and was only on 8mgs pred. I hate my MTX (diarrhoea, blood tests, always having to stop and start, can't get my surgery to prescribe them, reduced skin immunity) so I thought I would try stopping it and see what happened. It takes about 6 weeks for MTX to begin or stop working. Over those 6 weeks I gradually got more and more shoulder pain and stiffness. This week, I was waking up in the night groaning in pain! I didn't increase the pred although I thought I might if I needed to. So, here we are, 8 weeks into the experiment and I started back on MTX yesterday.

      What did I learn? Well, it works! Whether as a steroid sparer or as a disease suppressant - it is definitely doing something. I also learnt that I can't bear to increase my pred. Months and months of dropping the dose and still looking like an over-inflated hamster - I just couldn't bear to put myself up to 10. And I still have active disease after all this time (4 years and counting now). Boo  [sad]  One of my hopes was that I might get some feeling back in my hands - they went all fuzzy overnight about 6 months ago and I work as a pianist. They are just the same. It makes me so sad. Another loss to grieve. I'll never know if it is the drugs or the disease causing a peripheral neuropathy.

      So I suppose I had 2 months off MTX and avoided 2 blood tests and may six trips to the doctors and pharmacists to try to get my drugs. Now back at square one. But sometimes you have to just suck it and see. I am going to accept 8mgs pred and MTX for another few months and then I might just run the experiment again!"

      It was lovely to see you again yesterday in spite of how poorly you are feeling - shame you were on a fasting day with all that lovely food around though!  Hope hubby enjoyed his share of it anyway!smile

       

    • Susanne_M_UK
      Susanne_M_UK MrsO-UK_Surrey

      Posted

      Thank you, MrsO. That makes very interesting reading. I'll have a look on the forum, as I'm now also a member there.

      I found Prof Dasgupta' s talk very interesting and informative. I'm glad I made the effort to come. Yes, hubby enjoyed the lovely spread! I had to wait until 6pm!

      I'll do a separate post on today's rheumy visit.

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