Really unsettled by consultant change

[phoenix77]

After several years of trying I finally found a wonderful consultant - Dr Yousef Karim - at Frimley Park Hospital. He's now left the hospital and I've been switched from immunology to rheumatology.

My diagnoses is APS with Lupus elements, and PCOS. I'm on Hydroxychloroquine and Aspirin, but I don't think the Hydroxychloroquine is doing anything and the potential for eye damage terrifies me.

I saw my new consultant yesterday and I'm really upset. He was nice enough but he didn't seem interested in anything I had to say or in discussing options for treatment. He suggested I take amitriptyline for the joint pain, but didn't prescribe it. He's referred me for a neuro appointment because I kicked off about them never finding the cause of a stroke-like-event last year which I still have symptoms from, so that's something. But I always felt like Dr Karim and I were working together to find the best outcome and I don't feel like that with this new guy.

[jetjetjet]

Phoenix -- welcome to site - you are in the right place for APS -- Hydroxy works very slow i take it 400 mls a day and it took me 6 months to get to that ML -don't give up on it to soon -- they use to check my eye's every 6 months and now they have dropped the bar to 12 months - i have mild g and cat - and irt hasn't bothered me - we are all different BUT the drug does work and a lot on it -you got to give it a lot of time is all - i have had a lot of people ask me about it on here and that is my answer to them

[phoenix77 in reply to jetjetjet]

I've been on the hydroxychloroquine for almost 2 years now and I've definitely gotten worse in that time.

I'm just a bit discombobulated by going from having a consultant that I had complete confidence in and a rapport with, to one I don't feel comfortable with at all. I'm not sure why I was switched from immunology to rheumatology either. No explanation or anything. I'll give this new guy a chance, but I feel much less safe than I did six months ago.

[jetjetjet in reply to phoenix77]

understandably so .

[MaryF Administrator]

Hi and welcome, a lot on here with Hughes Syndrome/APS are on anti malerials such as you are taking, my daughter is and is doing well, however I can't tolerate it at all.

I enclose our charity website: ghic.world/ This is full of great information not just for yourself but also for your new consultant. The site also carries a lot of consultants from across the world as it is very important that you have one who understands this disease completely. When doing the blood tests it is important to do all three which are listed on the site, and also in that to include Thyroid testing plus also vitamin D, B12 and Iron etc. Our forum also has a list of specialists in the UK, listed under pinned posts over on the right hand side of the forum.

You will learn a lot from being on here plus find a lot of support with questions you feel you wish to ask.

MaryF

[phoenix77 in reply to MaryF]

Thank you. I've actually been a member here for several years, just haven't logged in for a year or so. I've had an APS diagnosis for 13+ years, the confirmation of Lupus involvement is newer though, 2 years or so for that which is when I started the hydroxychloroquine.

[MaryF Administrator in reply to phoenix77]

I really hope you get the chance to discuss it all in detail at your next appointment. Best wishes. MaryF

[Maz189]

I have been taking hydroxichloroquine since 1997. It has not harmed my eyes. You are supposed to have your eyes checked once a year though.

[lupus-support1 Administrator]

Hydroxychloroquine is well tolerated and a central drug in SLE. It can take several months to feel any benefit. Prior to taking it, you should have seen an ophthalmologist ie a medical doctor, not an optician. You should see the ophthalmologist annually unless the doctor advises something different. I have been taking it for 20 years and some studies suggest that there may be a concern only after long term use.

Amitriptyline is an old tricyclic used as a muscle relaxant and is very effective.

With good wishes,

Ros

[Zamalek]

Hello there Phoenix 77. Dr. Karim was my Consultant for 6 years. I like you were

referred to a Rheumatologist. Luckily for me, by mistake I was given two referrals

for different rheumatologists at FPH. Having seen then both I have chosen to continue

seeing the lady rheumatologist. The male rheumatologist, was very nice but his letter

o my G.P. stated, "it is hard to understand what is the matter with this patient" I have had two retinal vein occlusions, I have all three types of antibodies, and was diagnosed

with APS by Professor Khamashta in 2008. I am on lifelong Warfarin with an INR range

of 3-4., yet he found it hard to understand what was the matter with me. Needless to say

I wont be seeing him again. The rheumatologist I am now seeing was I believe trained

at St. Thomas's.

[phoenix77 in reply to Zamalek]

I wonder if the male one was the guy I saw this week. I hope not to be honest. That must have been awful to read. I will ask for a different consultant if I'm not happy with him at the next appointment, but I could do without that hassle, as I'm sure you understand. Dr Karim was so good. I'm very sad he's not there anymore.

[Zamalek]

Well he is on a Sabbatical for a year I believe. You never know he might re-appear.

[phoenix77 in reply to Zamalek]

I asked the new consultant and he said he no longer works there. I hope he was wrong.