Relative success?!

[DenverKUK]

So after my post earlier today my lovely GP chased the rheumatologist for their letter. It is the most vague thing I have ever seen. It literally says 'we have discussed the possibility of an evolving auto immune disease' and recommends plaquenil 200mg twice a day for 3 months and a follow up appointment in 8 weeks. That's it. Nothing else. Is this common? I've made an appointment to speak to my GP next week as I have a lot of questions but this letter has not told me anything I don't already know!

[Lucy_31]

Hello. Plaquenil can be used to successfully control lupus. Your consultant will usually monitor your progress as different medicines work for different people. Take care

[DenverKUK in reply to Lucy_31]

I think I'm just wondering why there is no indication of what I'm being created for, what the medication will do and the plan if it doesn't work. I'm a 'need all the info possible' kind of person lol x

[Barnclown]

😊 I like the subject line of your post! You've made me chuckle...thanks!

I just read back over your previous posts to orient myself (you got some grrrreat replies 🌟🌟🌟🌟). Am v glad you're here...this forum is the best

My feeling is that "relative success" is the name of this game...especially when we're starting out in the diagnostic & treatment process. This process is a collaboration over time between patient & medic, involving lots of feedback from patients & lots of observation & investigation from medics, and a certain amount of trial & error.

These vague reports from medics are not helpful. But medics do seem to mostly be ultra cautious when writing our stuff up. It's a good sign your doctor is trying you on hydroxy right away...my feeling is that this indicates he/she believes in probable immune dysfunction autoinflammation....and seeing you in 8 weeks indicates your dr is cautious and responsible.

Almost all the lupus meds we take are cumulative in action....if a med significantly disagrees with us, the signs are often clear right away and we try to see our gp & possibly talk to our lupus clinic promptly ...on the other hand, our bodies may grumble a bit while adjusting to a new med, and then begin to settle down + show positive signs of effectiveness after a few weeks or months of daily treatment. In time, if we don't show improvement on a particular med, our medic will think again & give something else a try. This really is a process...and takes time

seems to me it's just plain bad that medics don't do more to advise us on stuff like how to react if a med disagrees with us...medics seem to kind of leave that up to pharmaceutical instruction leaflets....and GPs. My first rheumy initially tried me on a vasodilator. I read the leaflet...so knew to stop taking this when I got a mega bad reaction...turned out to be a good move on my part 😉

I hope something in there helps...this ambiguity is no fun...6 years into the process, I've kind of learned to live with it...but I really don't like it

And I hope you'll let us know what your GP says

🍀🍀🍀🍀 coco

[DenverKUK in reply to Barnclown]

Thank you for this! I was pretty much coming to the conclusion this was going to be an arduous process! Having just finished a law degree and being in my training, I am naturally inquisitive and like to have all the information possible, good or bad!

I managed to get a copy of the rheumatologist letter to the gp this morning. The diagnosis is polyarthralgia with positive ANA and developing auto immune disease. My ANA was 1:640 but nothing of any significance in other blood tests, which I think was expected. She's ruled out RA but agrees my symptoms fit an 'evolving auto immune disease'. Is it weird I actually feel better knowing the minor details?

Anyway got my prescription today and starting it tonight in case I feel like crap with it I don't want to miss work! Fingers crossed and you all are fantastic, really appreciate the support! If anyone is located I South West England, please let me know as would live to have a coffee (decaf obviously lol).

[Barnclown in reply to DenverKUK]

YAY: I like your way of thinking about all this.

OMG: in training at law...you've got a lot on! Oddly enough, a brilliant young law grad I know was under a v grand youngish woman partner in her practice who had LUPUS. Lizzie says you can never tell there is anything wrong with her (you can imagine the cartoon playing in my head when Lizzie says this 😉)

NO it's DEFINITELY not weird to feel better knowing the minor details. Lots of us really truly madly deeply want & need to know (I'm one of them). I'm at the lupus & vasculitis clinic @ addenbrookes in cambridge...our local LUK support group is full of people who feel better knowing. The fantastic audiences at our information events are proof. As are the fantastic discussions here on our wonderful forum

Am so glad you're here

I'd join you for that decaf if I lived out your way. Have you looked into your nearest LUK support group?

🍀😘🍀😘

[DenverKUK in reply to Barnclown]

Awesome, I like knowing I'm not completely crazy. Well I am but in a Murdoch from the A Team sort of way!

Yes, loads on. I've done the degree while working full time and being a single parent. Fortunately I have a very supportive partner now though ee don't live together yet) and his general attitude towards life is pretty positive. It keeps me grounded and from having a lengthy pity party for myself lol!

I've found this group very helpful so far and will see if there is anything local but I doubt it, I'm in the sticks in Devon! May ask my GP for that info.

Thank you again, I rally appreciate your comments! Xx

[Barnclown in reply to DenverKUK]

🤗 Will see if I can add a link to the LUK support group details 👍👍👍👍🍀😘

lupusuk.org.uk/lupus-group-...

Each group has its own special character, of course