Bitter sweet day! Cysts and lupus correlation? Azathioprine medication?

[Angie245]

Well what a whirlwind since my last post! Had my jaw bone shaved because of the pressure from these crazy lumps in my face, started Hydro which has worked to reduce inflammation in my body. Lost my Fallopian tube and left ovary last week

Saw rheumatology today and at long last he recognises I need more help! I have now been given or due to start Azathiprine. He recognises all my illnesses over the past 15 years are probably an indicator of SLE. Platelets have been dropping again and Ana still positive. Lupus anti has gone from borderline to negative which to me surly indicates hydro having some impact.

Has anyone started on Azathiprine? Have you noticed a significant difference in symptoms I know everyone is different.

Also anyone else suffer with cysts? I have a diagnosis of Benign cystic breast disease which is leading to now my 4th biopsy in less than 2 years and 3rd cyst drain and now my ovary removed because of a burst hemorrhagic cyst. Just wondered if they could be linked?

Thank you!

[Oshgosh]

You’ve really been through the mill!I don’t have much knowledge. But I’ve had random symptoms for years ,atl beast 30 years.

Everything was treated on a symptom by symptom basis.

Last year I became increasingly frustrated Noelle had an 12 day admission to hospital,told. I had NSIP ( a an uncommon lung condition.

Then after a few months and innumerable tests told I have lupus with possible Sjogrens. Overlap?

It’s very discouraging,but am trying to carry on the best I can.

It’s difficult,lupus has had such a negative impact on my life

I really don’t know if your symptoms are related to lupus,but I wouldn’t be surprised,given the complexity of lupus.

You need to rest up and be kind to yourself

[Hidden]

Angie, I am so sorry. That’s so much for one woman to bear. Like OshGosh, I originally was seeing each symptom as separate problems over the decades and it’s only been the past (almost) 5 years that I’ve started to realize that something is wrong with the way my body functions. A little more than a year and a half that my GP figured out I needed to see all the specialists I’ve been going to. All my best to you. And I hope that’s the last of your surgeries!!! Your poor body has been through enough!

[Pickzie]

Hi Angie - sorry to hear it’s taken you such a long time to get a diagnosis and the treatment you need. My doctors initially went down the symptom by symptom route but I managed to piece the jigsaw together myself ( being a nurse) and got the blood tests / first rheumatology appointment privately . That meant starting hydroxychloroquine and NSAIs witching 4 months of the first major symptoms. But after a major flare several years later I started methotrexate ( rather than azathioprine) which helped but I now have rituximab infusions too. The combination of hydroxychloroquine, methotrexate and rituximab keeps me well most of the time and manages the lupus, secondary Sjögrens and vasculitis fairly well so that I have managed to stay working full time.

Like you I have odd ‘lumps’ -leg, forearm, shoulder. They’ve been scanned and appear benign but sit in the muscle surface. No one knows what they are exactly but I’ve been recommended to leave them alone unless they start growing rapidly. The one on my forearm feels different- like a knotty collection of veins- but the others are smooth lumps ( which bruise easily if knocked).

[Angie245 in reply to Pickzie]

Mine sits before the muscle surface all seem to be benign just not pleased it’s on my face. They look bruised a lot of the time and they think that’s my immune system attacking what shouldn’t normally be there. I was born with an extra part to my parotid gland so my body has for some unbeknown reason become confused by them.

I’ve always been treated separately for every illness and it always made sense until the beginning of this year. I had joint swellings, hair loss, butterfly rash, skin rashes, ulcers and sores in my mouth and nose and was incredibly fatigued. I first put it down to having shingles but apparently virus’s like this can be known as a trigger. It’s been all my own investigative work that has pushed it forward so quickly! Taking photos and keeping a diary to of the major components!

Thank you every bit of advice is so, so helpful! x

[RachelD1972]

Hi Angie, I’m on azathioprine for Rheumatoid arthritis and discoid lupus. I’m also on a biologic drug, Abatacept. It’s okish for me. I was also on hydroxychloroquine for the discoid lupus but it increased my sun sensitivity (was a complete nightmare) so off that. Just be careful in the sun as I think it’s one that does increase sensitivity to UVA (even though it’s used for lupus 🤷‍♀️). We are all different so what suits one won’t suit another. Good luck ! x

[Anniejoe]

Interesting Angie, I have been investigated for lupus but rheumy said not lupus: but I have a 30+ years history of 'cysts'; facial surface and max.facs.

(oral/sinus). I also had Poly cystic ovary disease for years (hysterectomy for separate issue).

My dentist always dealt with max. facs .vl

so not part of referral to rheumy.

[Angie245 in reply to Anniejoe]

Yes my dentist dealt with it to! My initial visit to the rheumatologist said no connection. Then after the bone shaving in my face by the dentist he told me to push to find out what was causing it as the stress on my jaw from the swellings was causing bone over growth.

So I saw a maxifacial specialist he from the beginning said he’d do all the investigations but asked me if I’d been referred to a rheumatologist! That’s before he even scanned me! 2 scans, 1 silogram and an MRI he found no stones, lumps or blockages just inflammation.

The cysts in my breasts and now ovaries they say are purely hormonal... I’m honestly not so sure.

I’m convinced it’s all linked and convinced that my history all points to long term lupus that is only just being diagnosed. I received my letter from the rheumatologist today and he wants to fully investigate the lumps and place me on a medication that will now suppress my immune system to see if it will reduce the inflammation and bruising to my face.

It’s all experimentation!! But hydro has made a huge difference to my general well being and joint inflammation!

Thank you all for your reply means a lot! xx