The fight begins

I've pretty much managed my own PMR and GCA in the last 3 years. I'm on 10mgs Pred and can just function at this dose with plenty of little niggles to remind me I have an active arteritis in the background. Saw (yet another) young rheumy registrar yesterday and told him about the Bristol protocol and said I would like to stay at 10mgs for at least 6 months because it is the first time I have felt normal in 18 months and I need a holiday from pain and sickness. Of course he disagreed and said I must push on to 9mgs asap. I knew this day was coming, when some young medic would have my wellbeing in his hands. It has occurred to me that they have no way of knowing what dose I am actually taking when I go for follow up and I could just lie next time and say I've got down to 5mgs. Of course, this would make it totally pointless going for a hospital follow up and be a waste of everyone's energy. I must also look at myself and see if I am being unreasonable or jumped up.

While I'm ranting, one other thing irritates me. I have mild resting jaw pain as a symptom that my disease is active. It goes when I take my pred. Try telling that to an inexperienced medic. It's not claudication because it happens at rest, so he won't accept it's GCA. (Personally, I think that means it's more serious). I tried to educate him and say it's like 'angina of the jaw' - i.e. pain at rest from a narrowed artery. That provoked him because angina is cardiac pain (duh - as though I didn't know)- so he thinks I am saying I have angina. I tell him that GCA can cause infarction of the scalp and the tongue - what's that if it's not ischaemia and ischaemic pain? I am so afraid to be who I am - a patient with really good education who knows this disease from the inside and who has read more than he has. It is so easy for them to write 'difficult' in your notes and then you're doomed. So I have to pretend I don't know what I know, and he is left with big gaps in his knowledge like before. (I remember going to see a doctor donkey's years ago when I had a stone in my submandibular salivary gland that you could actually see like a big rock under my tongue. This doctor said 'there is no submandibular salivary gland' so I went away and lived with the stone for another 5 years until my gland blocked up totally and I had to have an emergency operation.)

Perhaps I am difficult. I have every right to be, I have been so unwell with my GCA and at long last I am on a dose where I can function. I could always fake a flare and stockpile steroids. When I see myself writing like this I do worry that I am being unreasonable. What do you think fellow sufferers. Am I being a bitch?

15 Replies

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  • I can appreciate your situation only too well, Saxjody, and I have been faced with the same dilemma several times. I've tried to take each time as an individual case, decide on a course of action and follow it through grimly. I've had no real problems with this approach mainly because the right hand of the NHS doesn't know what the left hand is doing and neither hand knows what YOU are doing.

    The NHS in general doesn't like knowledgable patients - it's one of it's current failings and one which will be redressed in the balance of time I think.

  • No your not a bitch, we have every right to fight our corner, 9 months ago my care was transferred to a newly promoted Consultant Rheumatologist, after my previous one left. The first time I walked in to his Clinic I hadn't even sat down when he informed me I don't have PMR. This was with no examination, just the fact that the computer says I'm 49. He has never examined me, but constantly put this view across. I have tongue pain and claudicatoon among other GCA symptoms. He has never looked in my mouth, just says he doesn't know what causes tongue pain. When I informed him Neurologist said "possible lingual ischaemia", he said "not in my lifetime". If I prove him wrong God help him. Am currently waiting to see MaxFax, then hopefully referral to expert in Leeds. Keep trying to educate them, it's all we can do. Take care x

  • Saxjody

    "So I have to pretend I don't know what I know, and he is left with big gaps in his knowledge like before"

    No certainly don't pretend anything - he needs educating and you're the one to do it as far as PMR and GCA are concerned. And if he labels you as a difficult patient as a result and fails to take on board what you are saying, then he is being the difficult and arrogant one.

    Rather than just tell him about the Bristol protocol next time, it might be better to put the relevant paper in front of him - perhaps he just might read it! rcpe.ac.uk/sites/default/fi...

  • You are definitely not a bitch!

    We all have to take responsibility for our health and make sure we get the best care that we can get. One of the many things I have learnt is that it is worth finding doctors who are respectful of our experiences and listen to us. I am on my 3rd Rheumy now ( I thought the first 2 were useless) and having to pay to get what I want, but it has been worth it. The worst thing for me is when I feel powerless- the PMR makes me feel powerless enough without the medical profession compounding it! I am into my third year of PMR and down to 10mgs Pred. for the ? time ( I have lost track!)- it has been a very bumpy ride and I have never been out of pain, but at least I do feel supported, especially by my GP who does listen and helps in whatever way he can. I feel lucky to have him in my corner, but actually I had to fight to get him as I really did not rate my previous GP.

  • Hello Suzy. Its nice to see a post from you again .. Its very interesting to read these posts about Good and Bad GPs and Rheumatologists .In 10 years of having PMR I have certainly had a roller- coaster ride .. Consultants who said go back to your GP..( I am not God ) GPS that think the PMR was in my head and no you can't be in that much pain ( try it ) but fortunately for me I was at my osteopaths one day having a gentle massage and ultrasound and she noticed how low my self esteem was ..she looked on the website and found PMR/ GCA Meeting house of Surrey and through them I found out about my Rheumatologist who everyone was talking about and he listens to me as an individual and cares .He has not given up on me and this year has been a real hard year with flare-ups not allowing me to get down on the prednisolone . Years ago I took Methotrexate but had to come off of it because it effected my liver but after discussion with him This Week I have started back on it in injection form hoping that it won't make me as Nauseous as before . I'm OK at the moment but my pain seems to have shifted down to my knees ..I feel for anyone that is suffering with this condition ..The nurse that came out to me to show me how to inject myself told me I need to give myself more TLC ..I'm always saying sorry to Partner, Family and Friends for having this horrible condition. Best wishes to you Suzy and I hope you're not having too much pain .. and PMR pro ,Runrigo and my lovely Celtic .. trish29

  • Trish, so glad to you've finally had the first injection of MTX. I do hope you won't have a repeat of the nausea - hopefully you will have been prescribed Folic Acid which may help to keep the nausea at bay. Live (probiotic) yoghurt can also help, if you don't already have it. Let's hope it's onwards and upwards for you now - you deserve a break. Lots of good luck wishes....and see you soon.xx

  • Thank you Celtic .. Yes I have got my Folic acid prescribed by our caring Rheumy and yes I am taking Probiotic Yogurt .. I'm taking things carefully but hope I will cope with some time on methotrexate. I took the Folic acid yesterday a day after the injection advised by my nurse .I have an appointment for my next Blood tests at my GPs surgery so I hopefully won't get any hiccups over Christmas . I haven't had a flu jab yet as Pete and I have had chesty colds so I'm not quite sure what to do about that ..I hope you are doing OK and all being well I hope to see you soon . love trish xx

  • Thank you Celtic .. Yes I have got my Folic acid prescribed by our caring Rheumy and yes I am taking Probiotic Yogurt .. I'm taking things carefully but hope I will cope with some time on methotrexate. I took the Folic acid yesterday a day after the injection advised by my nurse .I have an appointment for my next Blood tests at my GPs surgery so I hopefully won't get any hiccups over Christmas . I haven't had a flu jab yet as Pete and I have had chesty colds so I'm not quite sure what to do about that ..I hope you are doing OK and all being well I hope to see you soon . love trish xx

  • Lots of colds around at the moment it seems, Trish, and yes definitely wise to wait until you're completely over your infection before having the flu jab.

    I believe you can delete your duplicate posts by clicking on the down arrow in the box at the foot of the post - then click on Report and you should be able to delete.

    Good luck with the blood tests now you're back on the MTX, although it will probably be a few weeks plus before you start feeling any difference. xx

  • Hi Celtic it seems that I have a hiccup with my i- tablet .. Yesterday it wouldn't let me post at all and today it wants to repeat itself ..its possibly my arthritic fingers ..xx

  • Hello Suzy. Its nice to see a post from you again .. Its very interesting to read these posts about Good and Bad GPs and Rheumatologists .In 10 years of having PMR I have certainly had a roller- coaster ride .. Consultants who said go back to your GP..( I am not God ) GPS that think the PMR was in my head and no you can't be in that much pain ( try it ) but fortunately for me I was at my osteopaths one day having a gentle massage and ultrasound and she noticed how low my self esteem was ..she looked on the website and found PMR/ GCA Meeting house of Surrey and through them I found out about my Rheumatologist who everyone was talking about and he listens to me as an individual and cares .He has not given up on me and this year has been a real hard year with flare-ups not allowing me to get down on the prednisolone . Years ago I took Methotrexate but had to come off of it because it effected my liver but after discussion with him This Week I have started back on it in injection form hoping that it won't make me as Nauseous as before . I'm OK at the moment but my pain seems to have shifted down to my knees ..I feel for anyone that is suffering with this condition ..The nurse that came out to me to show me how to inject myself told me I need to give myself more TLC ..I'm always saying sorry to Partner, Family and Friends for having this horrible condition. Best wishes to you Suzy and I hope you're not having too much pain .. and PMR pro ,Runrigo and my lovely Celtic .. trish29

  • Hello Suzy. Its nice to see a post from you again .. Its very interesting to read these posts about Good and Bad GPs and Rheumatologists .In 10 years of having PMR I have certainly had a roller- coaster ride .. Consultants who said go back to your GP..( I am not God ) GPS that think the PMR was in my head and no you can't be in that much pain ( try it ) but fortunately for me I was at my osteopaths one day having a gentle massage and ultrasound and she noticed how low my self esteem was ..she looked on the website and found PMR/ GCA Meeting house of Surrey and through them I found out about my Rheumatologist who everyone was talking about and he listens to me as an individual and cares .He has not given up on me and this year has been a real hard year with flare-ups not allowing me to get down on the prednisolone . Years ago I took Methotrexate but had to come off of it because it effected my liver but after discussion with him This Week I have started back on it in injection form hoping that it won't make me as Nauseous as before . I'm OK at the moment but my pain seems to have shifted down to my knees ..I feel for anyone that is suffering with this condition ..The nurse that came out to me to show me how to inject myself told me I need to give myself more TLC ..I'm always saying sorry to Partner, Family and Friends for having this horrible condition. Best wishes to you Suzy and I hope you're not having too much pain .. and PMR pro ,Runrigo and my lovely Celtic .. trish29

  • Since your prescriptions are written by your GP have you got a GP in the practice who will cooperate?

    I had an identical experience with a newly qualified rheumy who wanted it to be ANYTHING but PMR despite an absolutely textbook response to pred, a whole 6 hours! He was very keen on ankylosing spondylitis - ruled out pretty quickly by an x-ray. Then he decided it must be psoriatric arthritis despite me never having had psoriasis in my life (it CAN appear after the arthritis to be fair) and wanted to give me a very old drug (sulphasalazine) where you can't go out in the sun - I was about to move to Italy to live. But since you have to monitored almost weekly initially because of the side-effects, I had to have a consultant here. Luckily the guy here thought he was off his head! In the meantime, a different GP in my practice recognised PMR and was perfectly happy to give me the prescriptions for the pred and left me to juggle the dose to achieve best control.

    You don't HAVE to be under a rheumy - and you are better off not if you aren't getting continuity of care and sensible advice. Is it you who was under Dr Quick? Does she do private? Or you could write to her and ask for her advice to your GP who can then follow her plan.

  • this sounds so familiar. They tried to get me to the magic 5 and I had a flare and still have not recovered. I have the same jaw stuff and even scalp tenderness. Ii do manage my own dose. When I begin to sink....I up my dose for a week and then try to gradually go down. I was told to manage my symptoms by a very good doctor and that is what I try to do. They would prefer you not know TOO much.

  • this sounds so familiar. They tried to get me to the magic 5 and I had a flare and still have not recovered. I have the same jaw stuff and even scalp tenderness. Ii do manage my own dose. When I begin to sink....I up my dose for a week and then try to gradually go down. I was told to manage my symptoms by a very good doctor and that is what I try to do. They would prefer you not know TOO much.

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