Being monitored for lupus

Hi every one, I posted this in the thyroid community but wondered if someone here had some advice. I am 55 and have been hypothyroid since I was 29. I'm on 200mg of thyroxine at the moment. I have just had another bad water infection, second in four weeks. I do suffer from back pain and cramps a lot, among a host of other things, but I'm just getting over the most excruciating back pain I've ever had at the bottom of my back. It started all across my back then seemed to centre itself on the left hand side and I've been in so much pain I've even had to have help to go to the toilet and feeling so sick and also feeling very dizzy with it. I've never had it this painfull before and it's lasted over a week. The doctor gave me trimethoprim for the water infection and tramadol for the pain and I've had a kidney scan which he said came back ok. He said its my immune system which is attacking my tissues but that it would eventually calm down. I have a whole lot of symptoms for years mainly down to my immune system and was told for years by my old doctor rheumatoid arthritis, which now does not seem the case. Bad recurring skin conditions where my hairs actually fallen out and my whole body swelled, also regular bouts of conjunctivitis. He also said that they are monitoring me for lupus ( which my daughter was diagnosed with about a year ago) my question is what will they be monitoring and how long does it take. Thankyou for taking the time to read this, I'm at my wits end with all this for years, I would just like answers from my doctor which at the moment he doesn't seem to be able to give me

3 Replies

Hello bluesmum

Am v much feeling for you: the types flaring signs & symptoms you're describing are something many of us are managing. It is hard going, often especially tough for immune dysfunction & connective tissue disorder patients at the outset of the diagnosis & treatment process.

Lupus UK's info pack can help you understand what your consultants are monitoring & how long the diagnostic process can take. Here is a link:

Lupus UK's other downloadable info leaflets cover many aspects of the diagnosis & treatment process, and are very helpful and accessible too:

Am very glad you found our wonderful forum

Hang in there: the processes you've begun do tend to take time....there is trial & error involved as your clinicians zero in on the individual characteristics of your version of immune dysfunction & which treatments suit you best & help most...this is very much a collaboration over time (sometimes years) between you & your doctors. So keep a little log of your multisystem signs & symptoms & take pics of anything visual: your doctors will find these very helpful

I hope you'll keep us posted

🍀🍀🍀 coco

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Well thankyou very much for your reply. As I've just changed doctors as I was getting nowhere with the other one I suppose it's going to be a long road. I've had most of these symptoms since I was very young which have been passed as hay fever ( asthma) thyroid trouble and your just a very allergic person. Thankyou for the links I will look at them later when I can I can get to computer and keeping a log and photographs is a very good idea, so I've got a diary and I'm going to log everything in there. Thankyou so much for taking your time to answer and do take care

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Glad to help!

Here are 2 links to useful downloads that have helped many of us here:

1st a lupus checklist:

2nd an appt prep guide:

🍀🍀🍀🍀 coco

NB look carefully at each link for the right tab to click for these downloads, because the page also offers a lupus journal which is only available to people with USA addresses

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