Advice needed please

I was diagnosed in January 15 with PMR and after a couple of hiccups have now reached 8mg of Prednisolone using the very slow method. This has been successful for me. I saw a locum in October who said I was doing the right thing and to carry on until 5mg. I changed doctors at my practice as the one I had wanted a very fast reduction which didn't work obviously, and to date I have had no reason to see my new doctor. My question now is that my husband is very poorly and I have in the last two weeks become a full time carer apart from help to get him ready in the morning and a cleaner to help with the heavier housework once a week - starts today thank goodness! Do I stay at my present 8mg, try and keep lowering the dose or speak to my new doctor. I realise that I am getting into the territory where my body is going to have to fight its own battle. 

Any advice from you would be very welcome as I fear this is not going to be a short term illness with my husband and I will have to pace myself somehow. I am in my mid seventies but don't feel it mentally!!! I am so lucky that my family and friends are being very supportive in getting shopping for me until I sort out Internet shopping, banking etc. On the downside my hubby still has my old doctor so I will have to deal with him although I gave my reason for change that I wanted a lady doctor. I now think I made the right decision even though I chickened out at the time. 

Thank you for any advice you can give.

12 Replies

  • Hi Patricia,

    Sorry to hear about your husband, his situation will certainly make things a little more difficult for you, know that, been there etc, and know quite a few others who are in the situation. 

    For the moment I would stay at 8mg so long as you feel okay to do so, there's no need to rush into a reduction. Give youself, and your body time to adjust to your new situation, but if you begin to get a return of symptoms, which hopefully you won't, then you may have to consider increasing your dose.

    As you are still at the same practice then your "new" doctor should be aware of your husbands situation, but it won't do any harm to remind him, and also advise the practice staff that you are your husbands carer - at least everybody is aware then.  

    Once you feel ready, you can start your reductions, but there is no great race, just remember to take care of yourself as well - that's one thing that carers forget! 

    I know exactly how you feel about seeing your old doctor, I was exactly in the same position when my husband was terminally ill and I had to deal with the GP that had misdiagnosed me for 18months, bit awkward, but that's life! 

  • DL has said it all - and she has all the t-shirts.

    As long as you are having to do far more, together with the stress of your husband being ill too, then you will probably need a slightly higher dose than if your husband were not ill. There isn't really any reason not to try 1/2mg using the slow plan - maybe you will manage that still but it sounds as if the new doctor does understand the PMR problem so it probably is worth discussing it all with her and being clear with her if you have any problems at all with returning symptoms. 

    You have my sympathy over the GP problem - my husband remained with the practice who had nearly killed him by not recognising 3 lots of antibiotics that didn't work for a "chest infection" might be a message it wasn't bronchitis. A colleague sent him for the tell-tale x-ray - and then the proverbial hit the fan. I was assessed to be "interfering" and they treated me like a bit more of the proverbial. So I moved practice - but still had to interact with them on his behalf since he was in no fit state to do it himself. Changing doctor was the best move I ever made for me and the girls, who I took with me, within months my husband had changed to the new practice too which was the old-fashioned "I know all my patients and do my own on-call" variety. Not many of them around these days!

  • Patricia, I'm so sorry to hear about your husband's illness.  You've already had some helpful and understanding replies from DL and PMRpro from their experience.  My experience has been that when serious illness strikes our dear ones, at the time we appear to cope well....simply because we have to.  But the stress can in due course take its toll on our bodies, add PMR and/or GCA to the equation and the toll can be even greater.  If it were me, and you feel well at 8mg at the moment, then I would remain there until at least you feel you have sorted all the finer details, such as with your shopping and banking, etc, before continuing with the slow tapering.  I do hope that your hubby will improve over time.  Meanwhile, hats off to your family and friends - where would we be without them?!

  • Thank you Dorset lady, PMR pro and Celtic for your very helpful comments. This has all happened so suddenly and apart from the caring aspect he was treasurer of charities. I have had to try and bring the cash books up to date and hopefully get rid of them to someone else. I just hope he doesn't think he is not capable anymore-which he's not for the foreseeable future. 

    You have guessed that I am not happy with his and my ex doctor as I feel he is lacking in many aspects of care etc. etc. etc. !!! I feel he has dragged his heels with my husbands problems since last autumn and now they have come to a head. Sorry for the rant. Anyway many thanks once again for your advice, I value your help.  Best wishes to you all. 

    Ps luckily I can do accounts! 

  • Feel for you with your husband. 8 mg is not terribly high so. I would stick at that as your husband is ill but pleaee please keep resting between chores if possible as it is so easy to have a flare up which would occur after too much activity-one does not notice at the time and you want to avoid having to up your dose.

  • Thank you so much for your concerns. I am trying to sit and have a cuppa when I make one for him. I hope things will get a bit easier once I have sorted out everything and get into more of a pattern. I am lucky I am further down the PMR path now compared to the early days although I know how easy it is to have a flare. I had one last July and that was horrible. I am trying to keep a good sense of humour -too easy to get depressed about it. You never know what is around the corner so make the most of each day if you can. 

    The sun is shining here and the daffodils are out. I hope you all enjoy this weekend. I have put a tin I was given in a prominent places which says ' keep calm and carry on ' 

    I will need to read it often! 

  • Hello this lovely spring morning

    I had a similar experience. I was diagnosed with PMR in July 2015 and was beginning a slow reduction programme with some success. I was taking 9 mg Prednisolone per day when WHAM out of nowhere my Apparently fit and healthy husband had a heart light ambulance situation. I was totally shocked. Thankfully he recovered well. This was late Feb this year. I seemed to seize up. My GP said increase Predict to 10 and hold for a couple of months. My husband was soon walking faster than me and driving again and asking when he could return to golf! We hired a cleaner and gardener to take some chores away. It has gone so smoothly that I have just started a slow reduction again....very slow. I think the sunshine helps!

    Hope that your journey thru PMR continues well. I have found 2 girls locally with the same condition and find their understanding and support really good. We laugh about the same tribulations!

  • I see from local contacts you are only 16 miles from me. If you send me a private message I can let you know about meeting people near you, if you are interested. Valerie

  • Hi Patricia, I have read your story with much empathy, although my son was the one I was caring for. He spent 3 months in Intensive care hospital, part of that on life support.  He is a paraplegic, and became ill with flu, then pneumonia, then went into septic shock.  I live in another part of the country and went to stay   My point here, I have had PMR for almost 3 years, and at the time he was so ill, I was taking 7 mg prednisone. I just took my dose, rested every 3 hours or so, and road the roller coaster through that horrible time.  The most important thing you can do is to take care of yourself. As the flight attendant instructs us, put the oxygen on yourself before you put it on the others.   I made it through the experience of being alone in another city, where I knew no-one else, living in a motor home on hospital grounds, and being terrified that my son would die.  He survived, as did I.  We are 1 year past that terrible time, and I am taking 2.5 mg pred. I think my PMR has begun to extinguish itself.            

    i wish you and your husband well. Keep us posted, Jerri 

  • Thank you for your good wishes. I am so pleased that you came through all that distressing time. I wish you all the best for a Pred free time soon. I will take your advice. Many thanks and have a lovely Easter with your son. Patricia 

  • Hi hope all goes well with hubby . Mine was very ill and my father died before diagnoses of PMR . So my advice is keep as you are unless you feel worse then go and see that lady doctor . My husband is better now but  I believe some times these illnesses can come on through stress . I have been on 9 mg of prednisalone for 4 months because of no change in my ESR so it won't hurt to take it slow . Look after your self as well as you can ,only he needs you .to be bright eyed  and bushy tailed . Rest as much as you can🌷🌷🐇

  • Thank you Car00b for your advice. I am very pleased that your husband is now in better health. It is a stressful time but I have good support from the family and friends which is helping enormously. 

    Many thanks 


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