should we be seen at regional centre of excellence

[Jrob14]

hi husband has severe symptoms for 4 months now (fatigue, shortness of breath, rash, joint pain, nausea, weight loss and more) just diagnosed with connective tissues disease, which has already damaged his liver, GIT, heart and lungs. Currently cared for by local rheumatologist who is going to treat with maybe methotrexate, following last 5 wks on prednisone.

Also developed pseudo gout in knees and infection in lungs both of which Rheumatologist doesn’t think is connected to his diagnosis. We think they are connected.

My concern is, does the local rheumatologist have the necessary skills and knowledge to treat such a complicated condition or would be be better at a centre of excellence, nearest one being about 20miles away.

How do we know the treatment is the best one for my husband?

Feeling very overwhelmed

TIA of any help

[lowraind]

What is git?

[Jrob14 in reply to lowraind]

gastro intestinal tract

[Chris21]

Hi Jrob14, is your hubby having treatment from gastroenterologist for GI and liver? and thoracic for heart and lungs and shortness of breath? if not, perhaps ask Gp for a referral to these department.

what medication other prednisone has your husband been given, has he tried hydroxychloroquine? i thought this was the ‘go to’ before trying any other medication, but I may be wrong.

ive never been to a centre of excellence, so can’t saw whether its worthwhile. Its a bumpy journey we all take until we get the correct treatment and then its not always plain sailing!

I hope your husband gets some relief soon x

[Jrob14 in reply to Chris21]

hi yes we have been very lucky I suppose under gastroenterology, physician in chest team n rheumatologist.

Symptoms only started for first time in August this year so diagnosis has been quick compared to some people.

No other treatment yet as been treating pneumonia he’s had. Hopefully treatment in next two weeks/rheumatologist now saying hydroxy and mycophenolste.

[Chris21]

sounds like, hes seeing the correct consultants, rheumatologist tends to ‘oversee’ auto immune, sending you to his colleagues in other departments, where they are more experienced. It takes a while to get it all balanced. never seems quick enough when youre feeling so ill. hoping its not much longer waiting for your husband to start feeling better x

[Jrob14 in reply to Chris21]

oh, our rheumatologist is taking the lead in husbands care, says he’ll liaise with experts!

[Spanielmadlady]

Hi Jrob. I go to the kellgren centre in Manchester. It took 5 yrs to get there as my rheumy tried everything else first. The kellgren arnt treating me as such they feed back and advise my rheumy who has put their suggested treatment plan in place which was to add in tacrolimus. I too have had heart issues ,have breathing problems,kidney damage ,take myclophenolate and have been on pred for 10yrs. Your rheumy wont treat it all most of us have several consultants. Sadly there are no quick fixes which can be frightening when you feel so ill....it is also frightening when damage has been done long before symptoms appear . If you have a good relationship with your rheumy then have faith . Best wishes SML x

[Jrob14 in reply to Spanielmadlady]

Thanks so much for your reply and I wish better health for you. I do think my husband has been very lucky in having so many investigations so quickly, maybe it’s cos I’m a nurse at the same hospital and continually chasing things up. Husband has 3 consultants at min and he has appts every 2wks with each of them. I was hoping for husband to go to Kellgren centre too, heard amazing things bout it.

Husband wants to see how local care is first.

Thx again for your reply

[Spanielmadlady]

Professor Bruce is no longer there he moved on in the summer. I now see Dr Bruce who is lovely. Life is a constant battle now but we are made of strong stuff us lupies. X