Hubby now given continuing Prednisolone but what else does he need please?

Hi. Ive been reading and learning a lot here.

I believe my hubby has vasculitis. Sorry, bad memory. The four letter one that includes nasal polyps sinusitis and awful chest involvement. Plus he has the definitive rash which I have found nowhere else. Looks like a circular coral reef photod from the air, ragged line, looks normal inside and outside ring. Varies from nipple to shoulderblade size under arm, to size of thumb nail size. Burning itching. Tired ill.

Went to doc, usual story ignorance. But put him on steroids. All calmed down. Only three days, wham, back again.

He has prostate problem abd quack tried to say skin allied to prostate problem. Not that I could find. Saw urologist, said same. Phew. Went to see other GP would not give him blood test results. Requested formally.

Went back to quack, I primed hubby with giant clues re vasculitis. No comprende but on steroids. Is there optimum dose at first?

Right. Doing it the hard way.

Where in the north west are there vasculitis specialtists please? This doc has him on nothing else. My hubby has osteo and cant remember word. Crumbling bones. Been bone scanned. Takes weekly meds but I know from here must take supplements ie calcium. What type is best? What other supplements would you recommend until I can get him proper diagnosis, or not!

Failing nhs specialist, will save and get private consult. What area does vasculitis come under please? Is it Rheumatology? Hope not my Rheumy (Lupus et al, useless).

Thanks for your great responses. Sorry for brain fog, hope you follow me. You are all gems

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If you know me

Footygirl

[PMRpro]

Oh Footygirl - I'm sorry. Good luck finding the right person. You're in good hands here.

[Hidden in reply to PMRpro]

Thanks guru

[Hidden]

Hi Footygirl,

Prednislone isn't a good thing before diagnosis as it can blunt the evidence and make getting a diagnosis harder. They are part of Vasculitis treatment but usually long term, a week or 2 makes a temporary difference but isn't a cure.

It's usually Rheumatologists or Nephrologists that manage Vasculitis depending on the type and the organs affected ( there are 18 different variants ). Am I right in thinking your nearest big City is Manchester in which case Prof Bruce and The Kellgren Centre would be your best bet. Leeds and Newcastle are excellent as well. I am on the helpline this week if you want to phone.

Lynn

[Hidden in reply to Hidden]

Hey guru

Well Liverpool too. Had great response from the team at Kellgren personally, but on return to Great Plonkers nothing done, no tests as requested so nice thought, but would he benefit? Must try I suppose. Must get him prepped for request.

Thanks as always

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[Hidden in reply to Hidden]

Vasculitis is very complex, diagnosis of variant and specialised treatment is key. The last thing you want is GP's prescribing repeated courses of prednisolone. Vasculitis should never be managed by GP's as they don't have the knowledge or experience. You must insist on a referral to have it ruled in or out.

To answer your question what he needs from the GP is a referral, not treatment!! Anything else is potentially dangerous.

[Hidden]

I've just spent the last two hours trying to get the new beta app to send a lengthy reply (grrr) but I'm pleased to see Lynn has answered your message.

I'm sorry to read of your frustrating experience at the hands of GPS so far but I'm sorry to say, it's not uncommon. The vasculitides are a rare set of conditions with a great deal of variability, even within each type and the majority of GPs will be unlikely to encounter it in their career. However, ignorance is no excuse and your husband clearly needs more than calcium tablets and steroids, especially if he does have vasculitis.

A rash isn't normally associated with organ affected vasculitis but it clearly warrants further examination.

It's worth adding that there are no private-only vasculitis specialists in the UK (as far as I'm aware) so the best you are likely to achieve is, perhaps, a fast track appointment with the same consultant you would ordinarily see in an NHS hospital.

If vasculitis is diagnosed then it's likely to involve a multidisciplinary team of specialists depending on what organs are affected. As Lynn has said this is typically led by a rheumatologist or nephrologist but ENT, respiratory and neurological specialists may also form part of the team during diagnosis, treatment and long term monitoring.

Vasculitis is a difficult and enigmatic condition to diagnose at the best of times so it's vital to involve an appropriately experienced consultant as soon as possible. I'm sure if you'd care to give Lynn a call on the helpline she will be able to help you further.

Healthy wishes.

[Hidden in reply to Hidden]

I appreciate your lost reply, and the one I have read and note your, and Keyes repeated warnings. I succeeded in getting a referral to the Kellgren this year and will arm hubby with as much intelligent and well reasoned argument as I can to ask for a referral too. If granted I doubt it will be marked urgent, but I will try my best. I know he will be in excellent hands.

My lament, personally, is that all the new diagnoses and requests for more investigation for me have fallen on deaf ears at this surgery. I am suffering with SS at the moment but still have not received the recommended medication, from May!

Anyway I will not project my failings on my husbands case and will strive to get his referral.

So much appreciate all your kind and cautious, resposible responses

Love

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[EOLHPC in reply to Hidden]

👋👋👋👋⚽️

Am vvvv much feeling for you & hubby...and am vvvv glad you've posted here: this forum is one of the best for sound serious responses.

Sorry if I've missed it, but just want to check you're taking close up & mid distance pics of hubby's visual symptoms...my consultants all are enthusiastic when I bring mine to consultations. Because hubby is on gp-prescribed pred which can be damping down symptoms, historic pics taken before pred can be even more vital when he is seen in clinic

🍀🍀🍀🍀 coco

[Hidden in reply to EOLHPC]

Hi guru

Yes many pics taken thanks but meant nowt to GP hence my initial fear that we were in the hands of yet another Grand Plonker in the awful surgery. Further readiing of all matters vasculitis further fuelled my feeling that he needed specialist care. Ha funny it turned out to be the Prof of our previous aquaintance.

Rolling up of sleeves and girding of loins coming up!

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[EOLHPC in reply to Hidden]

Good 👍👍👍👍🍀🍀🍀🍀

[PMRpro in reply to Hidden]

It might be worth speaking to the practice manager about the fact your recommended medication has not materialised nor the tests. And probably VERY worth contacting the specialist nurse at Kellgren - someone else had similar problems and a stroppy letter from the specialist did get a result.

Worth trying, you have nothing to lose have you?

[Footygirl in reply to PMRpro]

I have done, twice guru to no avail. Dead end both times. Stumped. In correspondenc with P manager at the moment.

Asked for one years worth of my medical notes =£15. Asked this week for notes from Feb to now, £50 quoted. Deary me.

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[PMRpro in reply to Footygirl]

Maybe time to move to another practice that DOES have a good policy on patients seeing their own notes. That you have established in advance!

[Footygirl in reply to PMRpro]

Our local hospital has a GP practice. We went to have a look this week and to get the forms.. I have an impulse to interview the practice manager, but dont know if that would gain me anything. Or whether it would allow GPs to refuse me if really not up to the task but then would anyone take me on knowing beforehand how much I need help?

Feels so cold and lonely being my own advocate. Well trying to be.

Thanks guru your support means a lot.

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Ps Prac Man says £50 for full record £15 for records got last time?

Why have they edited my recods? I received "everything the doctors see" . Presumeably full means also docs scribble? They have ways of putting you off!

Hm

Going for £15 showed me everything requested by specialists but never done last time. May try Kellgren again.

[PMRpro in reply to Footygirl]

As far as I know you have to fill in a form to join which may or may not have past history details on it - so they could still say no.

When I had a similar problem the receptionist was obviously used to people transferring from the practice I was with! I warned her we weren't low maintenance and she didn't care. We filled in the form - and saw the doctor 15 minutes later!

[Footygirl in reply to PMRpro]

Got apt for a chat next Tuesday. We will see. Nothing about previous historyon forms: all data protection and admin

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[Hidden in reply to Hidden]

Every best wish to you both and sincerely hope you have a more positive time from here on in.

[Footygirl in reply to Hidden]

Thanks Martin. Your positive vibe and sincere good wishes mean a lot

Regards

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[izzygran]

I see an excellent consultant in the Rheumatology department at Wrightington Hospital. He diagnosed my GPA within a few hours of seeing me in A & E. I was admitted with severe pain in most of my joints, especially my knees, and with a rash over most of my body. My GP is very good and knew there was something seriously wrong but didn't know what. He took blood tests and examined me but was baffled. My hubby took me to A & E when the pain became too bad. That was almost ten years ago. I am still on Azathioprine, (& AdcalD3 for extra calcium), but stopped the steroids after 3 years.I still see my consultant every 3 months or so and I know I can contact him if I ever have any problems.

Hopefully you'll get a satisfactory outcome soon. Good luck.

[Footygirl in reply to izzygran]

Wow izzygran thanks so much. What an intelligent GP you have. Would you know the name of the vasculitis recognizi g Consultant? Maybe a ref there would be quicker than the 18 weeks hubby just quoted by Kellgren. Im getting frantic now,

We only live in St Helens so really close for travelling etc.

Please help.

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Sorry taken so long to see you. Running round in circlesxx

[PMRpro in reply to Footygirl]

If you had a decent GP they could probably send you to A&E as an emergency - or do they not feel he is an emergency?

[izzygran in reply to Footygirl]

The consultant who diagnosed my vasculitis is Dr. Gladston Chelliah. I trust him totally. I hope you can get your husband an appointment with his team at Wrightington who are all very good.

Good luck.

[Footygirl in reply to izzygran]

We will try very hard. Thanks so much. Will ring tomorrow

Hope you are well today

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Ps mri 18weeks

Dr Chelliah 18 wks

Too coincidental

Only ever wait 6 wks before

Govt trying to break nhs again

Disgusting