Taking Steroids before my first Rheumatology appointment?

[ALJ780]

Hello,

I am being investigated for autoimmune disorders including lupus. I have a strong family history, rashes, history of low wbc, unexplained fever, G6PD anemia, nerve muscle and joint pain, fainting episodes, a positive ANA, (at this time, it is low at 1:40 homogeneous pattern and mytotic centrosome pattern) raynaud's and many other indicators.

My problem is that my symptoms fluctuate in severity. The list of symptoms is quite long and most doctors just make me feel embarrassed when I try to explain what I'm experiencing.

For some reason my GP is dismissive of many of my symptoms and abnormal blood work. She is going to give me a referral for a rheumatologist who will do further blood work, but she wants me to take steroids for two weeks first. Won't the steroids impact my blood work?

I am a bit discouraged as it seems the road to a diagnosis will be a tough one. It makes me uncomfortable that I am perscribed so many pills, but I have no idea what is causing these issues.

Any advice would be greatly appreciated.

Wishing you well <3

[Spanielmadlady]

Hi my lovely.the journey to diagnosis is a long one I'm afraid ...in many cases including mine 5 years+ is not unusual.gps dont know how to handle auto immune illnesses and their complexity so rheumatology is the best place to be heading.dont be embarrassed by your long symptom list...believe me we all have one of those but a good rheumatologist will listen to that list.as for steroids I've been on them for nearly 7 years and have had an issue with the steroids masking some things but I doubt 2 weeks will make much difference. I think of you put us all together and gave us a shake wed sound like one enormous marrakech as many of take alot of tablets.i take 20 at breakfast and another 12 at tea time 🙄.

Be confident in how you feel, keep going and keep smiling you will get there. Best wishes xxx

[miccika1]

It's good you take steroids first. If you notice you are better it's also a diagnostic sign that this might indeed be autoimmune related. Sometimes people get better after one round of steroids! I dont think it will have a significant impact on your blood work and the rheumatologist should adjust accordingly

[Spanielmadlady in reply to miccika1]

Oh to be sorted by one round of steroids lol......in my wildest dreams either that or I'm on one round lasting 7 years 🤔🙄 x

[miccika1 in reply to Spanielmadlady]

Spanielmadlady SpanielmadlSpa I was responding to the ALJ780 question 😁

[Spanielmadlady in reply to miccika1]

🤣 x

[Bebe76]

What dose of steroid does your GP want you to try? If our rheumatology appointment won't be for a few months, perhaps the two week trial is to determine if steroids help, though I would have thought that was the rheumatologist's role, not the GP's. If the two week trial is right before you do tests, be aware that it may increase your white blood cell counts

hopkinslupus.org/lupus-test...

It may also reduce inflammation blood markers. If you do the steriod trial, it's important to let the rheumatologist know.

[CecilyParsley]

Bless you. It is a journey that all of us here would not wish anyone else to go through and a journey that some of us are still travelling . My diagnoses have changed so much and so frequently in eleven years. I think the steroids will help you with pain and inflammation and as long as your Rheumatolgist is aware of your bloods prior to commencing them then he or she will be able to observe how they have helped you. GP’s are still not generally as knowledgeable on AI issues as they should be in my opinion but if you get one that wants to help you that is a real bonus. Keep photographs of rashes, swellings or any changes in your body and keep a symptom diary so that your Rheumatologist can understand how your symptoms impact you. I wish you so much luck xx

[ALJ780]

Thank you everyone for your kind responses and encouragement! You've made me feel so supported and much less alone =). What I'm learning from you is that communication is a key component in this journey. I need to make sure I am keeping track of my experiences and bravely expressing all my concerns with my providers.

[nanleighh]

No it won’t change any abnormal bloodwork except maybe CRP or send rate but they are in themselves not diagnostic for auto immune disease, just inflammation. And it should help you! They should be testing for auto antibodies such as double stranded DNA, anti Smith or anti RNP antibodies, along with complement testing. There are a multitude of tests for the different auto immune diseases. Along with symptoms over time is how diagnosis is made. Lupus is one of the most difficult to diagnose and can sometimes take years unfortunately because it mimics so many other diseases. I wish you the very best in your journey, and hope you will find answers soon. X Nan

[badpiglet]

Hi ALJ780,

Just seen your post and wondered how you're getting on?

We share a lot of the same problems including G6PD deficiency, Raynauds, nerve/joint pain, fever, arthritis etc. I'm AMA positive as opposed to ANA but like you have gone through the rigmarole of being tested for everything.

It is highly unlikely in the UK that your GP (or for that matter your Rheumatology consultant) will have good knowledge of G6PD deficiency let alone the possible subclinical issues that you may have experienced all your life that may have shown up as unexplained tiredness or random fevers. I think - could be wrong - systemic lupus is one of the possible differential diagnosis for G6PDd sufferers.