More advice please

Hello

Just a quick recap.... My wife lost her sight in march this year to GCA. She left hospital on 60mg of pred.

The rheumy she saw about a month after leaving hospital put her on a program of reducing to 30mg then by 2.5 mg every 4 weeks, currently she is on10 mg.

The problem is I have noticed that she is getting worse with every reduction, not her sight which I guess will never improve but in her general health. Currently she can barely raise the energy to get out of bed and if we have to go out just getting washed and dressed she needs to rest for a period. She spends most of the time asleep. In fact she is as ill now as before she lost her sight.

Looking at the RNIB website on GCA it says that steroids can be needed for two years. we are seeing our GP on Wednesday, do you think we should ask to increase the pred dose Also should we ask to see an opthalmologist as well as the rheumy as she hasn't seen anyone about her eyes since she left hospital.

We only get to see the GP every couple of months and when we do we often leave feeling we've been fobbed off.

Do you think we should be more assertive?. I have printed off the RNIB stuff and highlighted the relevant bits. which I hope will help get our point across. We are of a generation that was brought up to respect doctors etc. and find it quite hard to more forceful or question what they tell us.

Thank for listening. Barry

11 Replies

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  • Hi Barry,

    I agree with you. This is just not good enough! I even feel that you have got grounds for a complaint. My heart goes out to you both. At the very least your wife's medics should be explaining all of their prescribing decisions.

    Quality of life does not seem to enter the equation.

    I have bolshie children who would step in. Do you have anyone like that?

    I think we were raised to be far too polite and respectful to the medical profession. Grateful too. I often feel dismissed by them as an older woman. Yes more assertion, backed up by a quiet righteous anger. Yes to all your questions.

    Your wife and you deserve better. Bless you both.

  • Hi Barry,

    So sorry to hear about Joyce's problems.

    In my opinion, she has been reducing too quickly - not her fault if that's what the Rheumy recommended. FYI it took me about 2 years to get from 60mg down to 10mg.

    If she's getting worse at each reduction then obviously the dose of Pred is too low, and her problems are only going to increase as she gets even lower.

    Think you really need to have a strong talk with your GP. When reducing Pred, you need to be sure that the inflammation is under control at each level BEFORE you reduce again. That means almost pain free, not completely but enough to live life reasonably, and really her bloods should be tested before the reduction takes place.

    The doctors may want you to follow a plan, but that's all it is - a plan, which has to be amended as you go along depending on how the patient is!

    Unfortunately the fatigue can be attributed to both the Pred and the GCA, but hopefully if she gets on the right dose it should improve.

    One of the major things that the doctors are worried about with GCA is sight loss, so normally they make sure the patient is on enough Pred to stop that. In Joyce's case that has already happened, so maybe they are not as diligent as they should be! I would hope not, but ....!

    Hopefully your GP will do a blood test at next appointment. I had mine done every month prior to reducing. You don't actually need to see GP each time, you can ring up for results, and provided they've been seen by doctor and a comment made, between you, you can then decide to reduce or not. I always made sure I asked for the actual reading as well as the comment made by GP.

    Do hope you get some positive results on Wednesday, and yes you do have to respect the doctor's view, but sometimes in the case of GCA they know less than a well read patient - or spouse!

  • Speaking of respect, at the very least the physician should respect your wife enough to do everything he/she can do to give her back her quality of life. Loss of sight is devastating enough, to be dismissed to a life of avoidable physical disability is unacceptable. Yes, see an ophthalmologist; at the very least s/he should be able to give guidance about how to move forward with a life without sight.

    The fatigue and sleepiness can also be a sign of depression, no doubt made worse by the pred, and I think a perfectly understandable reaction to all that has happened over the past few months.

    She's so fortunate to have an advocate in you. All the best to you both.

  • Do I think you should be more assertive? I most certainly do. The people who shout loudest are heard - whether that is good or bad depends on your point of view I suppose. And medics are only humans - if a patient accepts what they are told there is often little incentive on the part of the medical staff to do more, they assume you are happy with the status quo and there is no more to do.

    Runrig has said most of what I would have said so I won't repeat it. I'm not sure seeing an eye specialist is going to be particularly useful if she already has lost all vision, it isn't going to improve so there is nothing they can offer. You DO need to be in touch with the RNIB for information about assistance and support for your wife and I think they are probably the best people to tell you what and where. I'm assuming you are in the UK?

    The high dose she started at was in an attempt to salvage her vision - it didn't work so they probably simply decided to reduce the dose steadily to avoid the longer term problems with such high doses. However - they have not taken into consideration the fact that she probably still has GCA affecting other arteries, which it frequently does, and she will be suffering the effects of the autoimmune part of the GCA. If it were me I would be asking for further imaging to identify whether there are other arteries affected - PET-CT or PET-MRI (Positron Emission Tomography) are probably the most useful - which are expensive and they may be reticent to agree. But she is ill - and they need to find out why. If the GCA is still active in the chest arteries then she may need to remain at a slightly higher dose - IF it makes her feel better, if it doesn't there may not be much point but it should be considered. If the current rheumatologist is not being helpful, then maybe you need a second opinion from a vasculitis specialist unit. Where are you? There may be other medication to help - but there you may need a specialist in the field.

    I would be very suspicious that she is very depressed - and especially so if she is not receiving any support, i would be. Fatigue is a part of vasculitis but it is also a component in depression and it becomes a vicious downward spiral - she does very little so physically she becomes weaker so that the least effort tires her when she does try do something. And perhaps she sees little point in trying to do anything - it is a massive bereavement and readjustment she has gone through.

    And I would also ask for an interview on your own with the GP and tell them in no uncertain terms you are not happy with how you and your wife are being managed. There is no need to do it in front of your wife and distress her even more - but your GP needs to know they are failing her. When I had a similar experience I moved to a different practice who were wonderful. I know it isn't as easy these days in the UK but it can still be done.

  • First thank you all for your wise words and kind thoughts.

    I agree she is very depressed. The fact that other arteries my be affected has been worrying us for some time. She had a heart monitor fitted for a day but with no result but I will ask about the Pet scan when we see the GP. She had a blood test last week so hopefully that may give us some clues.

    The RNIB and the Kent assoc for the blind have been very helpful coping with the loss of sight. But the medical side finds us feeling very much alone.

    Thank goodness for this forum!!

  • Just thought I'd mention GPS in the UK are not allowed to order PET scans. Hopefully she is at least under a Rheumatologist, who would be able to organise one. They are used to detect vasculitis in the chest and arteries to the arm and neck. Usually the ask you to lower steroid dose before having one, they are expensive scans and the criteria for requesting is very strict, but there is no harm in asking, and yes you both need to be more assertive with your medics. At the end of the day this is a partnership where both parties agree a way forward, and should not be a dictatorship. Your wife is very lucky to have someone who is so understanding, and wants to understand more about this invisible illness. Good luck 😃

  • You MUST be assertive I'm afraid and, if you find it difficult, please try to find someone who will speak for you. I still find myself being a bit of a wimp when I see my GP but I know that I would fight hard on someone else's behalf. Keep on touch with this wonderful forum and very best wishes to both of you.

  • Such a hard place for both of you and yes I would agree with everyone that you need to be more assertive. Being assertive doesn't equate with disrespectful- you can be assertive in a very polite easy way - it is just using that opportunity to voice your concerns and worries. You may have to do it more than once- that's called the " broken record technique" which just means again that you have to keep on keeping on, albeit in a respectful manner until you feel that you are moving forward . Most of all that your wife is receiving the treatment and care that she desperately needs. All best wishes for your next GP appointment, have you also got a rheumy appointment lined up? You might want to do a list of questions and queries that you have and write these on a piece of paper so you have them to hand when you visit the surgery. It is so easy to walk away and realise you haven't covered exactly what you wanted to. Also it might be helpful for you to keep record of how your wife feels each day on a scale of 1-10 , including pain, fatigue and possibly how low she feels, including her dose, as information to present to the GP, and rheumy. Do continue to keep in touch and let us know how both of you are getting on.

  • My doctors surgery does 5 free councilling sessions under the Health and Wellbeing people. Don't know if you have this in your area. It has helped me to come to terms with grieving for a lost life and other practical things. It may help her to talk to someone. I have not lost my sight and it must be very difficult for her. Before getting GCA I was a sighted guide to a 52 year old who had lost his sight because of meningitis. In time he had made great strides and led a reasonable life, going to parties, out with friends, shopping going to the bank etc. - all with the help of me as his guide. Things will get better for your wife. Hang on in there.

  • Thanks for your suggestions.

    We are both getting counselling over the phone. separately. from the RNIB. Just had the first sessions last week, had wait some weeks to get to the top the list This is for the emotional side of what we are facing.

    I have got a print out about GCA from the RNIB and have highlighted all the bits relevant to her condition. I have also started list which is getting longer by the day.

    GP on Wednesday and seeing the rheumy on the 17Nov

    I'll let you know how we get on.

    Barry

  • Barry, am I right in picking up that you are in Kent? Can you both get to any of the Kent meet ups ? I am involved in the one in Maidstone and you would both be very welcome and may feel a bit less isolated.

    Also, I am a counsellor myself and disappointed to hear that you are getting telephone counselling which I personally don't think is enough. I hope you are finding it helpful, but if you aren't- face to face counselling, especially for you, could work better.I also happen to know of a blind counsellor in the Maidstone area which might also be helpful. She is in private practice and charges, however.

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