Questions Questions??

Was recently diagnosed with probable SLE, with associated symptoms - Raynauds, positive RO, hair loss, fatigue, body pain etc. Prescribed hydroxychloroquine but developed side effects within days of taking it.

My questions are, is there anyone out there on a similar journey?

As it would be helpful to ask the doctor (who is quite indifferent), the right questions to eventually get to an accurate diagnosis.

Are there any alternative medications both natural and conventional out there?

Do I really have an autoimmune disease or could the symptoms be attributed to the menopause?

[BabyOleg]

Hey, I’m not able to answer your question as I am currently going through the stage of diagnosis however I wondered why it’s “probable” and not definate - what stops them giving you a secure diagnosis

[Hidden in reply to BabyOleg]

It's not a confirmed diagnosis and my symptoms are being monitored. It's annoying as I just want a definite diagnosis so that I can mentally move on with my life and manage my symptoms. I feel like I'm in limbo.

[BabyOleg in reply to Hidden]

I know exactly how you feel right now. So i totally sympathise with you. Are you under a rheumatologist?

[baba]

Lots of good information on this link.

lupusuk.org.uk/

[Hidden in reply to baba]

Thank you👍

[MrsMarigold]

Hi. Based on my experience and knowledge Of the time of life you are in I would say

Yes. It could be menopause. However you

Did not say if you had positive ANA or results of other lupus tests. If those are positive, perhaps you can stick with the hydroxy a bit longer as side effects usually

Subside. Did you also get a hormone panel

Done? Thyroid? These are done here

I’m in US. They help determine a diagnosis.

Best Regards, Titters

[Hidden in reply to MrsMarigold]

I'm seeing my consultant again, so will definitely ask whether those other things such as the hormone panel and ANA have been done and or considered. It's good to know and make sense. Thanks

[Tanitani]

Labs could easily confirm if you have an AI disease or not. Ask the doctor for the labs they did to diagnose you such as ANA and autoimmune panel. What side effects did you develop from HQ? Did you have to stop HQ?

[Cowsaresweet]

Hi For ages I put my symptoms down to menopause but then had a major flare and was diagnosed with Lupus. I found it hard to adjust to the diagnosis, reading helps and as baba has said the lupus uk site is a good source of information. I went from someone striding out on a 16 mile walk to struggling to get up the stairs. I found it helpful to do what I could to improve, so I am now on an anti inflammatory diet, created a routine with rests to pace myself through the day, and doing graded exercise. As others have said the blood tests should confirm the diagnosis. This quote helped me:“Things work out best for those who make the best of how things work out.” – John Wooden

[Hidden in reply to Cowsaresweet]

Hey CowsareSweet

There seems to be a big overlap in terms of menopause and Lupus symptoms, so glad to hear that others have experienced similar things and that I'm not slowly losing my senses.

Will keep pushing to get a clearer diagnosis

😊Thanks for your response.

[KayHimm]

I think by the time the rheumatologist says “probable SLE” it is not menopause. I believe the terms they use are “possible,” “probable” and “definite.” You May have enough symptoms and signs to know it is autoimmune but you don’t have quite enough to confirm diagnosis.

As I have mentioned before, the bar is very high for lupus. There are other ways of capturing other less definite categories and overlap diseases. Also, these illnesses evolve so they often wait to see how symptoms develop.

I think you may be in the majority here. You are certainly not alone! I never developed full blown lupus - still have “lupus-like” autoimmune disease.

Good luck and keep us posted.

K

[Hidden in reply to KayHimm]

Will do and thanks, its useful to know that you can have lupus like symptoms without developing full blown lupus. How is your diet and your weight?

Any suggestions?

🙂

[KayHimm in reply to Hidden]

Lupus UK information about lifestyle changes and lupus, I think. Don’t follow my diet. 😅

[MrsMarigold]

I agree with what is said here and even here in US it is hard to get a diagnosis. Especially Around menopause. It will be useful to have your hormone levels checked as well

As thyroid I hope I’m not repeating myself.

And the Ana is mandatory. They called

Undifferentiated Connective Tissue Disease which many are diagnosed with

It before lupus. After 4 weeks my Rheumatologist called lupus.

[Hidden in reply to MrsMarigold]

That's exactly the terminology, undifferentiated SLE!! When I was told this, I was like what am I supposed to do with this?? Is it or isn't it?? It's confusing and taking medication to manage something that doesn't meet the 'criteria' is hard to comprehend. Thanks for sharing and will ask for the other tests. 🙂Hopefully I'll get to a conclusion sooner rather than later

[MrsMarigold in reply to Hidden]

I felt like you. Why medication? HydroxyMade me feel better fast. So I kept on the plan until my next appointment

[Sara_A]

Hi I have very similar things to u I also have positive anti ro antibodies, chronic fatigue, arthritis, joint pain,migraine, muscle pain all over

I have a diagnosis of sleep and antiphospholipid syndrome have had it since age 21 now 42 yrs old it took several yrs for diagnosis to come about. I have a lot of pain and I am on a lot of medications including methotrexate and steroids I have tried several others but reacted to them. Hydroxy needs to be taken with food as can upset ur stomach I know that much I'm hoping to re start it after 2 hrs off it as had investigations on my eyes as was thought to have caused toxicity but thankfully it's clear x

[Hidden in reply to Sara_A]

Thank you for sharing your experience, there seems to be a range of symptoms associated with autoimmune disease which could do easily be attribute to other things. Several years for a diagnosis is a long time. But I'm glad you've finally got answers and hope your health is much better. Not sure about the hydroxy as it made me so sick and concerned that the side effects outweigh the benefits

[Krazykat26]

Lupus appeared at the exact same time as menopause for me!! It's so difficult to distinguish what's what with symptoms..both for us and the doctors.Stick with us though Bijouxb coz here u will find out all about lupus and other autoimmune conditions. It's often a long road to diagnosis and it's quite easy to believe that your losing the plot too!! I know I did anyway!!

I've learnt more about lupus on this forum than from any of my doctor's. You're not alone 🤗🌈😽😽xx

[Hidden in reply to Krazykat26]

Hey Krazykat26 Will definitely stick to this forum it is very insightful. 😊Interesting to know that your Lupus started around menopause.... is it a trigger??

[Krazykat26 in reply to Hidden]

Lupus is nine times more prevalent in women..so nine women to one man. I have read that it can be caused by hormone imbalance which is why it's more prevalent in women. We go through three stages in life..puberty..pregnancy n motherhood..and menopause. Males have only one surge of hormones..in puberty and then that's it for them.Up until the menopause I had no problems with my health.

Viral infection..in my case shingles set me off on my own journey into the wacky world of lupus..all during the peri-menopause stage of my life.

Welcome to the group 🤗🌈😽😽xx