Potential change in diagnosis from R/A - PMR - Vascilitis

[Sonofjimmy]

Good evening all,

I recently posted an update on my dads condition and instructed reduction from 30-20mg pred last Tuesday. The plus side is no R/A PMR pain has come back 1 week in!!

On the negative side, he was admitted to AMU on Friday based on fever symptoms consistent with his two recent hospital visits with Sepsis (Gram negative). So far this time blood curing has not identified the Salmonella bacteria that was the recent causes and they have started to investigate further due to his continued fever type symptoms and his normal fatigued presentation. His condition since being in hospital has gradually got worse.

As always consultants will visit assess and comment that he is a mystery!! todays consultant is now looking into potential Vasculitis, this is based on small black spots recently appearing around his finger tips. They will now commence with additional scans and follow up assessments (Pet scan taken two weeks ago with no feed back on vasculitis)

As previous this has led us all to review my dads medical notes and personnel diary he has kept since this nasty illness (whatever it is) first hit him 18 month ago. This review has highlighted so much confusion in diagnosis from different consultants and consistent remarks that he is not responding to the diagnosed treatment in the common way.

Sorry for digressing, as I am writing this am not sure on my purpose. Just hoping someone has been in a similar situation and could have a positive suggestion at this time.

Anyway two items for consideration if possible:

H Pylori: A review of historic records showed a dramatic (only) decrease in ESR / CRP when he was taking anti biotic medication for this bacteria in his stomach. Has anyone known this to be linked to R/A PMR in anyway? The week of this medication he referenced a 2/10 in his diary stating that he feels normal again.

Infectious diseases & R/A - PMR: Since his pain miraculously vanished back in August he has been hit for six with infections, blood clots, pneumonia and more infections. Is it possible that his illness has been an infection throughout hitting his joints / muscles before moving internal to his system?

I am sorry for posting and not reading & commenting on other posts, this is something I will do once they have solved his mystery and I can share our positive findings (Soon)!

Thanks again

Ryan

[Hidden]

Hi Ryan,

Please feel free to phone the Vasculitis UK Helpline if you would like to talk things over. Prednisolone suppresses the PET signal after around 10 days leading to false negatives, also there isn't an evidence base for PET scanning in Vasculitis outwith types affecting large vessels such as the aorta.

vasculitis.org.uk/helpline

Vasculitis is a rare complex disease, there are over 18 different variants ( GCA is one of them ), they are characterised by the size of vessel affected, Vasculitis roughly translated means inflammation of the lining of the blood vessels.

The most important factor in getting a diagnosis is how much experience the Consultant has in diagnosing and treating Vasculitis. I would suggest that your Dad's Consultants are struggling and a second opinion is warranted. There are pockets of Excellence throughout the UK and Vasculitis UK will be able to point you in the right direction.

[PMRpro Ambassador in reply to Hidden]

Tell me Lynn - you know, I know that pred suppresses the PET signal. Why don't so many doctors?

You've just reinforced what I've felt all along.

[Hidden in reply to PMRpro]

I wonder if it's because it's a shiny, new investigation Eileen! As you say it's not hard to find evidence that shows the PET signal is suppressed by pred if only Consultants would do some research.

Don't start me on the interpretation of PET scans in Vasculitis! I suspect that very few Radiologists are experts.

[PMRpro Ambassador in reply to Hidden]

It took me about 2 mins to get links to studies showing it! I had to look it up for someone else whose father was being totally wrongly treated for GCA in a district hospital (now under investigation) and was so ill he was circling the drain and almost half way down it. Since then he's been transferred to people who know what they are doing and he is improving. The doctors were being totally precious about looking for an expert opinion and doing the same as Ryan mentions "but you aren't responding in the typical way". Maybe it is because you are treating for the wrong thing?????????

Um - never mind vasculitis! OH had a CT done for lung problems about 4 years ago. Last year a new pulmonologist pulled it up to look at - and told him he'd had TB at some point in the past. No mention on the report from the previous time though!!!

[Hidden in reply to PMRpro]

The lack of clinical curiosity and unwillingness to collaborate/ ask for help is infuriating. I spend a lot of time in the helpline coaching people how to challenge Consultants and get a second opinion. This is hard enough when well but much harder to do when unwell and feeling vulnerable.

I worry about the patients who don't find their way to the various charities/ support groups.

We just need to keep plugging away Eileen and make a difference when we can. Xx

[PMRpro Ambassador in reply to Hidden]

I've just suggested someone come and have a look at/chat with you. Also a non-curious rheumy it seems to me.

There have been several posts recently where people are commentaing about having the knowledge to speak up and they are getting results - so we are getting there! And younger doctors do seem to be less precious about patients who have some background knowledge.

[Sonofjimmy in reply to PMRpro]

Thank you PMR Pro, We have requested a meeting with the ward manager with the intention of formalising some of the conversations and comments that are regularly muted. We intend to request that we are fully communicated the current diagnoses and treatment. From Fridays admission we have only been informally told that he has no infection yet they are treating him with anti Biotic consistent with gram positive bacteria? The last time he was admitted it was with gram negative bacteria and the anti biotic was different?

We have read on here about consultation management and intend to provide an agenda to the doctor with our main items and will have two copies, one for the doctor and one for us. To many times have our suggestions been immediately dismissed verbally. We will now ask for demonstration of how they medically factor out are suggestions and record for future reference.

Many thanks again

Ryan

[Soraya_PMR]

Did they re-bump his pred if they think vasculitis?

I’m sorry your Dad is back in hospital again, he really is going through the mill, as I’m sure are his family 🙁

[SheffieldJane]

Nothing positive to add, just feel so sorry for your dad and his family!

[Sonofjimmy]

Many thanks again for your kind advice and words, Keyes: we did not know that and will highlight during todays rounds with the consultants. Soraya: this has been mentioned in conversation but nothing at the moment, again we will bring up today.

[Hidden in reply to Sonofjimmy]

Hi Ryan,

I am one of the Helpline volunteers for Vasculitis UK and I can't stress enough the importance of seeing a true Vasculitis expert.

Steroids mask symptoms very effectively, the priority is getting a diagnosis which will then dictate the treatment. Vasculitis doesn't respond to drugs like Humira ( except for Behcets and PAN ).

[Sonofjimmy in reply to Hidden]

All noted and thanks again Keyes. Although the hospital have informed us that he did not have the sepsis again on this admission last Friday, we have managed to get his anti biotic details and they are all for gram positive bacteria. As far as we are aware the blood curing would have confirmed no infection by now, asking the question why the ant biotic? In terms of the vasculitis, we have raised GCA etc on many occasions, his response to pred @ 60/50mg was consistant with him feeling a little better. Each time we raised the withn the R/A consultant it was dismissed immediately without discussion really. We will see what comes about today and start our investigations and look at the support

Brill thanks

Ryan

[Hidden in reply to Sonofjimmy]

Hi Ryan,

Ask them if they have done a pro calcitonin blood test as it can distinguish between infection and inflammation ( CRP is non specific ).

If your Dad is getting a Vasculitis type rash then that's more common with a small vessel Vasculitis, not large.

I hope you get some answers today.

[yogabonnie]

Will be thinking about you and your father. What a wonderful group of supporters. NOT just support but such knowledge. I am overwhelmed with gratitude...for past and future help for all of us.

[Hidden]

Your comment on infectious diseases is interesting. Quite a few auto immune inflammatory diseases can present with " fever of unknown origin ". The patient presents with fever and raised CRP but no infection is ever cultured in the blood, sputum, urine etc.

Generally these patients are given repeated courses of antibiotics which they don't respond to. The blood test which can help is a pro calcitonin, this is a basic explanation

labtestsonline.org.uk/under...

If you do a google search there are a few academic articles discussing how pro calcitonin can be useful in differentiating between infection and fever/ raised CRP caused by Vasculitis etc and can aid diagnosis. Unfortunately many Consultants aren't that knowledgable about it.