LUPUS UK
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Update and medication:

Hello all!

Hope you’re enjoying the snow (in the uk)!

So I had an amazing appointment with my immunologist yesterday - turns out he also works both in Rheumotology and immunology. Was very interested in my extremely lengthy family history of Rheumatoid Artheritis and other very unique ‘auto immune’ conditions....Fabulous!

I took my last two weeks of symptom/ reactions diaries all crossed referenced with food and blood pressure etc.

He took his time and went through them all and then did a thorough exploration of my family history. I had a physical, and he was intrigued by my Hypermobility and also had a good feel of the Parry Rombergs Atrophy on my head.

Then he said those amazing magic words ‘lets get you you on the right medication’ Hallaleulah!!

He believed that although my last two sets of blood have been negative, that they won’t always be and coupled with the aneamia and inflammation that I do have an auto immune disorder. The Perry Rombergs is believed to be one, but because it’s so rare they have very little information!

I may well need to have a bone marrow biopsy in the future. But, he’s happy to see how I respond to the medication first!

So, there I was sat in the consultants room nearly crying - 18 years this has been going on for and it’s taken just two appointments with this man to finally become listened to and treated!!!!

So, more blood tests and in 6 weeks I will be starting immunosuppressants. I’ve been given two options :-

Cyclosporine and azathioprine

Would really appreciate any feedback on the two drugs, as I need to make a choice...... although he did advise the cyclosporine he said it was my choice.

His words were “ you’ve been messed around enough”

I’m over the moon - I may finally begin to feel better - I know it’s not a magic wand, but it’s a start!!!! He said, many aspects of my symptoms fit into Lupus, Scleroderma and Mastocytosis but the medication is relevant for all. I’m so excited for finally pushing for the answers I need. Although, it’s not a definite diagnosis, it’s certainly a step in the right direction!

Thank you for your support and insight. This forum really helped!

C

X

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Sounds like a great doctor, lovely to hear. Good luck , LOU X

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Can I ask who the doctor was? I'm always thinking about mastocytosis. I have eds3, sjigrens, A.S, colitis

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It’s a consultant part of Dr Savics team at St James in Leeds! I can pronounce his name but begins with an A. I’ll dig out the paperwork he gave me and send you it!

He’s such a lovely man! X

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Brilliant ! Sounds like you are on to a winner!!

Strangely enough I am seeing Dr wood, who I believe is part of the same team. I was due a follow up appointment, but unable to make it due to the adverse weather conditions. I don't live locally.

It is always good to hear something positive for a change.

Sue. x

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I think that Jimmys immunology team are amazing! So pleased With how it went yesterday x

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You are giving me hope. So pleased I saw your post today.

x

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Oh I’m so pleased! Usually I’m the one looking for some hope!

I’m sure if I’d have pushed when younger I’d have answers sooner. However, I don’t feel so concerned about a definite diagnosis, I’m happy simply with auto immune for the time being as long as my symptoms are being treated!

I hope you also get the answers you’re looking for also! I know how frustrating waiting and trying different medications can be! X

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I totally understand where you are coming from. 🤗

With treatment, all crossed you begin to feel so much better.

The only way is up! 🖕🏼🌻🌼🌻🌼x

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Hi all I’m called curly I have been on azathioprine for 4 years now bit ruff at start but it’s now helping me back to a normal life well if you can call it normal lol I have behcets it’s very similar to lupus and RA symptoms all very similar x

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How do you mean rough at the start Curly? If you don’t mind me asking x

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I start this and colchicine at same time and was quite sick for a few wks but doc put me on lanzaprosol and ranitidine that settled my stomach down x

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And of course I don’t mind you asking that what I like about this site you learn more on here that at docs lol 😂 x

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Ahr He just changed my medication to Lansoprazole and ranitidine! Perhaps he’s put on these already to get my body used to them!!! 😀

Thank you

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Any time just ask wee are just a big disfuctional family on here lol I love this site x

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It’s helped me a lot!

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Oh and by the way I stay in Fort William and right now we have no snow and we normally get it bad or it’s raining but right now we have blue sky not even in summer do we see blue lol 😂 so I’m dreading nxt few day can only mean trouble x

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It’s been horrid in Yorkshire! But we’ve all had a snow day today as schools are closed. It’s been lovely x

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My twins still in school they’d. Be gutted if it was of it looks really bad down there

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Same In my neck of the woods. Two snow days ❄️

I work part time in school, so it has been a short working week this week. The children and myself would have still been out in it had school been open. x

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I also work in school part time! Although, I wouldn’t have been out in it due to it cold urticaria 😂

I really wish I could, there’s nothing more that I would have enjoyed the last few days being out with my children building a snowman!

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What a coincidence! And yes, the dreaded hives itch - urgh. Fortunately that is something I don’t have. What a nuisance it all is at times. However, well done for continuing to work. No mean feat for many. I’m just about hanging in.

😬😂x

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awrrrrr I wish it was just hives - it’s changed into a terrible bright red burning rash and my face, hands, lips and tongue all swell. I have to carry Epi Pens now. I was so pleased to be given a snow day! As I don’t work Friday so I don’t have to go out all weekend 😂😂

I’ve been struggling with work this academic year. I feel so guilty, but there really is nothing I can do until I have this under control! I’ll get there I’m sure, I just hope work can be patient!

Big well done to you also! It’s tough mentally and physically! X

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Oh no! That sounds horrendous. I am so sorry to hear that. 😏No wonder you are so pleased with the immunologist. At last, a little light at the end of a long, 18 year tunnel! Do hope that you are able to find some relief from all that is bothering you very soon 🤞🏼

I too have had a struggle this year. I returned to work after February half-term having been absent for 12 weeks. Had repeated chest infections and the flu. 🤢

I shall look forward to hearing great things once your medication begins to work its magic!

Lovely to ‘chat’ 🤗

Enjoy your extended weekend. Chuckle .

x

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Oh you poor thing!

Glad you are feeling much better!

Yes was lovely to chat to you also!

Xxxxx

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💐xx

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Brilliant - he needs cloning if only for his manner! Kindness and concern cost nothing...

There are some very special rheumies at Jimmys!

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That is perfectly true! A real gentleman and very much joined the dots of my symptoms/ reactions and historical medical issues xx

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Oh for a minute there ladies I thought you were talking about me lol 😂 x

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Tee hee. Always good to try and keep a sense of humour! 👍🏼😉

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Prob only thing that’s still intact lol 😂 x

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Then hold on to that as long as you possibly can! Not always easy. 🤗

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Hi I’ve been on azathioprine before with good response for the actual illness but not from my liver unfortunately ( it raised my liver enzymes) but I was really reluctant to stop it as it had started to make me feel better, typical!!

From what I gather the azathioprine is one of the most tolerated drugs and the preferred first line to try but don’t quote me!

On the other hand if ur cons has suggested the other I’d possibly (personally) go with his suggestion (he is the expert after all!) it is a bit of trial and error with these drugs and can take a while to find one that suits and works!

Good luck but def try something u never know it may really help.

I’m on mycophenolate now from aza but I think cyclosporine would be the next they would try with me

Good luck!

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Excellent! Thank you for all your info! X

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