Looking for a lupus doctor

[Olibop]

Anyone now a good lupus specialist in and around the crewe Cheshire area please ???

[moondance]

Hi I live in Sandbach and for a long time have been going to the University hospital of North Staffordshire in Stoke. The Rheumotology team there are good and there is good OT support at the Haywood in Burslem. I don't know if they have a Lupus specialist at Leighton in Crewe but they didn't when I was diagnosed.

Hope this helps,

[willow80]

I live in Congleton and have also been going to the Rheumotolgy Dept at North Staffs hospital. I initially went there due to haematology as there was not an outpatients dept at Macclesfied. I do know there is a specialist there now too.

How are you? Hope you are taking each day as it comes.

[Olibop in reply to willow80]

Thank you for your reply x I am coping at the mo but the thought of loosing Dr Patrick is such a shock as I have trust in him he was the only doctor that understood how I am feeling xx How are you doing ? X

[tennissenior]

What is a "Lupus specialist?" I never heard of such a person - ever doctor sends you to a rheumatologist. I went to several and all they do is prescribe meds and read your chart and talk. I stopped a while ago afte they recommended some kind of chemo and another drug, which my hematologist/oncologist phoo-phooed. He said they had one side effect in my case - death! Every once in a while when my ITP kicks up and my platelets drop to the 30's he prescribes the massive dose of Dexamethosone. It helps for about 4 weeks. And then back to Square One. One thing I found out long ago - we talk to people about Lupus - but most of them don't have a clue as to what Lupus actually is! I know this for a fact! I wrote an article a year ago, describing Lupus and sent it to a friend. She thanked me because she finally admitted she did not know what it was.

[madmagz in reply to tennissenior]

Lupus specialists "are" rheumatologists and the chemo type drugs you refer to are immune suppresants as that is what chemotherapy does is suppresses the immune system generally azothiaprine or methotrexate both of which I have taken myself and they have made a huge difference to my symptoms and made me feel much better along side steroids and folic acid with the methotrexate. There are lots of scare stories out about these types of drugs but the best people to speak to about them are those who have tried them and the doctors who prescribe them or not if like yourself for some reason you can not take them. They do have a side effect that means you are susceptible to catching illnesses more easily but then we all have that problem anyway. These drugs have made it possible for me to go bake to work and start living life again I just thought that I would comment on this so that anyone reading this thread would not be scared about trying these drugs if offered them if they thought that the side effect that was mentioned to you was true of everybody.

I hope that you have found something that has been more suitable for you as a regular treatment

Good luck

Madmagz x

[tennissenior in reply to madmagz]

Perhaps the rheumatologists in the UK are better with "bedside manner" than the Florida rheumys. I went to 2 or 3 of them, and basically, they mostly read yourchart, order labs and prescribe meds. They are also over loaded with patients, and it's a 3 to 4 hour session on each visit. My hematologist disagreed with most of the meds the rheumys talked about because SLE is more difficult to treat than Discoid. SLE also can cause drastic changes in various lab results, which causes concern on the part of the patient. The two meds one rheumatologist talked about were Benlysta and Rituxin. My hematologist said no to both. I see the hematologist most often and he is the "monitor," as well as my Primary Care doctor. The nurses that work for my Primary pay a lot more attention to my labs than the hematology office, and I know I can count on them if anything peculiar shows up. The best medicine is staying active, paying attention to your symptoms, and researching the lab results that come in. We get them by email, and if anything is "flagged," I call my Primary, as I know I can count on his office.

[madmagz in reply to tennissenior]

I think I am "lucky" being a lupie and living in London as we have a dedicated Lupus unit that is known over the whole of the UK and renowned for being the UK's Lupus unit the doctors there are very dedicated and do all they can to help and there are many secondary clinics within the same health authority for the discoid lupus such as dermatology and haemotology also some GPs are getting improved knowledge too. I must admit though I do come to this sight quite a lot and have read some research studies in the past to try to help myself, I think that if you are photosensitive you are at a disadvantage in the states so maybe your doctors have a tougher time over there trying to control you.

Good luck and take care my fellow lupie

Madmagz x

[Olibop in reply to madmagz]

Thank you so much for your kind reply's hope you are all keeping as well as you can be ️xxx love to you all ️xxx

[tennissenior in reply to madmagz]

Dear Mad,

I agree with you. The US is always hesitant to try new meds that come out that may help Lupies. Everything I ask my doctors about, the answer is always the same "They're in clinical trials." I order most of my meds from Canada, as they have generics which I can't get in the US. If the UK ever comes up with a "cure" for Lupus, please let us know and I will be on the next plane out to Heathrow!

[notoverthehill]

I travel to Manchester Royal Infirmary to attend a rheumatology clinic. There are several good consultant. I see Professor Bruce but referral is by GP.First class treatment and goodd specialist nurses.

[emilyb]

Yes I agree with the previous post. I have attended Manchester & under Dr Gorokin for the last 22 years+ and firmly believe that if I hadn't I would not have my beautiful son!

p.s. I am happy to travel from Liverpool to Manchester .

Good Luck x