Confused

[Haylz2109]

Hey all again, sorry I seem to be non stop on here lately. Hope you guys are all as well a can be 💕 So if you have seen my previous posts you'll know these last few months have been a nightmare and as it currently stands my overall pain thankfully is slightly better however I am now on antibiotics due to tonsilitis so I'm still not right.

Can I ask first did people before being medicated get a lot of illnesses in short periods of time or am I just unlucky?

Now this is where the confusion and upset comes in, my rheumatologist finally got back to me last week however due to my scan on hands showing no inflammation and my liver levels calming down slightly (still not correct) she said there's nothing more she can do for me and won't provide steroids until I've been seen in Birmingham next month and had my colonoscopy. She also said she can't put me onto the other suggested medication Azathioprine until the test has come back but it's been weeks so surely that should of come back by now.

Anyways I was just getting my head around all this and being left to struggle for another 2 or 3 months which isn't fun in itself but then today I've had a call from another rheumatologist just randomly who was following up to check I'd heard off my rheumatologist, so I explained I had and what was said but then I thought to ask about my bloods because I didn't get the correct information from my rheumatologist. She then said my liver levels are lower but not normal whereas my rheumatologist tried to make out as if they were fine now and on top of that she explained my white cells were elevated and my platelets which I've never been told before and asked was I on antibiotics at that time but I wasn't.

I'm now confused as to why my own rheumatologist didn't bring this up because if I'm not wrong doesn't that mean that there's inflammation or an infection at that time ? Which would then explain why I was struggling to walk and in agony when I ended up going to a and e.

Thanks if any of you got this far my heads just spinning atm and I don't know now what to think. Thanks all. 💕

[FandNnan]

Hi Haylz, I think many of us can relate to your situation and it is something that crops up on this forum regularly. How did the condition we have first manifest and then how long did confirmation of diagnosis and treatment take?!

I came to my SLE diagnosis after - a terrible first pregnancy in my late 20s, then intense fatigue and other symptoms for approximately 4 years, an underactive thyroid diagnosis at this point, then still lethargy and symptoms like sinusitus/sore throat/mouth ulcers/migraines etc almost non stop for 3 years until - my GP tested for SLE and I first saw a rheumatologist. I was then around 36 years old.

I didn't have any treatment for SLE for years, just blood testing at each rheumatology appointment and medication from GP for each problem as they came along. In my 40s I started hydroxychloroquine and I'm now in my 70s with several different medications to treat AI Lupus related conditions.

Rheumatologists know more about Lupus now and once diagnosis is confirmed they have medication choices. It seems to me decisions on how to treat you are in the process of being made. It's odd you've heard from two different consultants, not sure why that's happening. I can understand your confusion.

It's right to question what's happening and push for information. Do you have a phone number for rheumatology nurses or consultant secretaries? I think I'd ask to see or speak to someone as you're worried and left hanging for information and some treatment to relieve symptoms. We all get used to fighting for info or appointments or treatments!!

Good luck to you and I hope you get some firm answers soon x

[Haylz2109 in reply to FandNnan]

Hi, Thank you so much for your response.

It really does take such a long time doesn't it ? I had 2 bad pregnancies but nothing was picked up during them it all seemed to happen after my second child. I've been seeing different rheumatologist's since I was 32 I'm now 36.

They didn't treat you to begin with then? They have trialled me on steroids which resolve my liver enzymes and symptoms so proved an UCTD however when they trialled me on hydroxychloroquine it didn't work unfortunately.

It just gets so confusing because I'm seeing so many different specialists for second opinions or to back up my rheumatologist decisions when it comes to medication but the professor I saw said regardless of diagnosis they will help treat but my rheumatologist seems to be holding back.

Especially now when another rheumatologist has come into the mix on the weekend with a completely unexpected phone call and then advising of the raised white blood cells etc that my rheumatologist never even brought up.

I do have numbers for them however in my area there is only 5 available so it's like gold dust trying to get hold of them.

I do have an appointment with my normal rheumatologist next week but she's told me on the phone not to attend because there's nothing more she can do for me until I have my colonoscopy and see another specialist in Birmingham.

It just gets so very hard to keep pushing when you're so unwell all the time.

Thank you I really appreciate that 💕 xx