`Due to the priceless knowledge and support my family and I have been provided by you all over the last 7 months we were in a position @ the last Rhummy appointment to request a further consultation without my father post the initial consultation with him present (He feels uncomfortable when we question any professional in any way). At the time my farther had reduced from 50-40-30-20-15 without any significant set back and was instructed to drop to 12.5 the week after. He had not been on MET/Humeria for over six months and had no obvious R/A (initial diagnosis) or PMR (potential diagnosis) since August although he has been heavily fatigued for two months.
This appointment was a follow on from 2 weeks in hospital in the comfort of the infectious diseases wad were they treated him for sepsis (previous admission with tis infection), following the admission from his own GP. During the two weeks & multiple investigation no sepsis was found and numerous specialists commented that he is a mystery and presents himself as someone with potential vasculitis. This statement could not be supplemented with any data and all specialists informed us that it would be something that our Rhummy would discuss with us on the follow up appointment??
Anyhow the conclusion of the follow up was that they stated that he is one of 20% of the people who are admitted to infectious diseases unit, who presents with infections symptoms and extremely high CRP (170 on admission & 90 on release) but they cant find an infection. Note: No pain or R/A visual symptoms
INFECTION OF UKNOWN ORIGIN!! - Intrinsic inflammation disorder !! This was the new diagnosis provided during the consultation and he is one of the 20% who cant explain why the have high inflammation levels and are extremely fatigued and always unwell. and After saying no to the Humeria again we agreed to keep tampering with the steroids and monitor
1 week later we dropped to 12.5. This was over 8 days ago now and he has rapidly detreated to the pint were his legs wont enable him to get out of a chair or walk up stairs. Strangely this is without any significant pain only a bit in his groin area although he is fatigued as much as he as ever been before. We fitted a chair lift to get him up the stairs and will be taking out the bath shower for a walk in over the weekend. On top of all this he is now in the most depressed state I have seen and not really recognisable to our normally strong minded farther. We called the R/A nurse on Monday to inform that he has lost the leg movement and they informed us to go to his GP. They took his bloods again and informed us that we will need to see the Rhummy (Planned for this Tuesday)
Infection of unknown origin, has anyone ever been diagnosed as this?
what is the normal treatment if any?
Happy new year all, lets be strong for 2018!!
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Sonofjimmy
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Did they do a pro calcitonin blood test as it's much more specific for infection than ESR and CRP?
Has anyone ruled out a periodic fever syndrome? They are auto Inflamatory disorders, different from auto immune but can share some features. The thinking now is that some people have overlaps between auto immune/ auto Inflamatory and immunodeficiency. Here is a link
As below with Celtic, it seems hard to be referred to a vasculitis specialist, they say that our Rhummy covers this area and would evaluate and treat accordingly
I don't know if you read my link but if they are now thinking that it's an auto Inflamatory disease then they are very rare and require a specialist referral to the Amloidosis centre in London.
Personally I would ask for all your comments/ concerns to be documented, you also have the right to record any conversations.
We mentioned the PC blood test to the consultant @ the infectious diseases ward during a sit down. The consultant stated that this would not indicate the difference between the two, he followed this up by stressing that it was not down to cost why he thought the test was not worth while which I found odd at the time
I agree it's very odd that they mentioned cost for PC!
There are numerous academic articles detailing why PC is useful, it differentiates very well sepsis from Inflamatory diseases which can present with similar symptoms. I go to a lot of conferences on Vasculitis etc and Dr's are increasingly using PC for this function.
Yep, very odd. At the time I was recording the conversation in my diary and we requested the opportunity to strike off some of the potential diagnosis that we wanted to suggest. He did at the time strike off verbally, however this did not reflect on the discharge summary when some of the suggestions were mentioned as still possible. When we challenged this they informed us that it was a junior who completed the discharge and apologised. Image repots could not rule out a heart condition/ infection, with him having the blood clots we wondered about sticky blood syndrome. This was the third time he had been omitted to hospital by the GP or other professionals stating the my farther is a very unwell man and presents himself with an infection with very high inflammation markers. The discharge stated unknown origin and blamed the steroids again!! Two consultants and most junior nurses in the infectious disease ward stated that he was presenting as someone with vasculitis although they would not commit as they stated that it was the call of the rhummy who my farther was under. In the follow up he blamed the steroids aswell and informed us that he had been through allot lately and this was the reason he was so unwell. When we asked why other professionals were mentioning vasculitis he stated that they did not may farthers history and the full story which makes more sense of his conditions?
Ryan, I like a good medical mystery! I used to be an ITU nurse which is why I know a little about Pro calcitonin.
My own experience with getting a diagnosis of Vasculitis and the work I do with Vasculitis UK means I come against this type of scenario all the time. A lack of clinical curiosity and an unwillingness to collaborate with colleagues/ ask advice. It makes me very sad as it's the patient who suffers.
Hi Celtic, we are based in Liverpool, we have mentioned seeing a vasculitis specialist, however the Rhummy consultant stated that it was not required and should come under him. He informed us that then treatment would be the same as R/A even it was vasculitis: Pred, Humeria & Met so it would not make any diffrence
Well he could well be wrong! I think that they have a fixed concept of what they want it to be - and they won't budge. I really don't know how you can get your father out of their hands though - unless he is well enough for you to take to London.
I can't help much regarding treatment but just wanted to say I admire you and your families tenacity trying to get correct care for your father. My dad used to go mad if we asked questions of any medic treating him so I understand how delicate that can be. Good luck getting effective treatment for current down turn🌻
Thanks I read on here about having an agenda ready for the consultation and informing the consultant of you intention at the start. The two times we have done this we seem to have got some answers and rule outs verbally but they are never logged on the summary documents!!
Sorry one more what we are finding hard to reference against (Maybe pred). He is currently having his eye pressure monitored after it was found to be high during an appointment made before Christmas when he complained of some bleared vision. I think it around 31 and the optician has now refereed him to St Pauls eye hospital. They have said it will be a side effect of the pred?
Yes raised eye pressures can be a side effect of Pred - I had it on higher doses of Pred - not enough to warrant any further medication but just monitored for a few months. As I reduced the Pred the eye pressures reduced accordingly. You should also be aware that Pred can affect cataracts as well, but if your father is going to an Eye hospital they will monitor that as well.
Good luck, and I do hope you get a definitive diagnosis soon!
Pred can raise occular pressures - I think about 23 is the top of the acceptable range. It should then be managed the same way it would be anyway, with eye drops initially - I would suspect that may be high enough to affect vision.
New development today, his bloods returned from Wednesday appointment with GP, high potassium & enzyme levels. They have called last night and admitted him to hospital, started taking more bloods and investigating this morning !! Sixth admission since September, hopefully this time we will may find the route cause. Its looking like muscle issues?
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Continuation of cold plus possible further infection/food poisoning
chest infection
Temporal biopsy listening to Bruce Springsteen
