Is it really Lupus?

[katidid]

Hi all,

I was recently diagnosed with Lupus and every followup appointment seems to reveal new information. Normally this would be insightful, but I'm more confused than ever.

[whisperit]

It's definitely a complicated and confusing condition; I think most people here have felt at a loss to understand what is going on with them at some point or another.

Are there specific questions or muddles you want help with?

X

[katidid in reply to whisperit]

Thanks whisperit, I would definitely love some clarity. I think I'm having a hard time understanding how many different forms this illness can take. For so many years my aches, pains and issues with things like digestion and my skin were always blamed on other illness/conditions. Even at the time I remember thinking there is no way somebody can have all of these things wrong with them. And, yet, my mind is not accepting that most of what I went through could be Lupus.

My impression of Lupus (which I think is wrong) is that yo uhave all of it or you don't. I never understood it to be gradual or to only display certain symptoms at certain times. I also had no idea all the little things would add up on day and knock me out. It's like I was at a tipping point and then just toppled over. My doctor says this is common, but I haven't heard anyone else describe it like that.

For example, 8 years ago I started getting bouts of unexplained pancreatitis and suddenly had trouble digesting all food. It took years to figure out, but it's because the muscles in my digestive tract don't function properly. This got reconciled as IBD, but I just read that the digestive tract and the pancreas can be effected by Lupus. Don't see many folks talking about it, tho, so just looking for some info or insight.

Then my joints started to hurt. Off and on for years, but now every major joint has some level of sensitivity and if I could rip out my SI joints and hips, I would. Same goes for muscles. I was an athlete and did notice that my muscles weren't developing as they should and my lungs were struggling when they shouldn't be. Then, basically out of nowhere, I get severe inflammation in my Piriformis muscle and the thing start to tear. I'm still thinking it's mechanical, but most Orthos & Neuros have given up trying to treat it b/c they say that my immune system attacks itself every time they attempt an intervention (shots, infusions, nerve ablations ... even PT). Just a little needle prick and my whole body inflames. Muscles, ligaments, joints, skin ... everything. They are all afraid to touch me. I get it, but it just seems so extreme for the body to react that way. Again, is this a thing? I know muscle pain is - and I have that all the time now - but radical muscle and soft tissue inflammation?

As for skin, my doctor and I disagree about this. He thinks my rash is malar. I think it looks like a number of other dermatitis problems. Do Lupus induced facial rashes always have to be a perfect butterfly? I also have classic psoriasis which he has classified as a cross-over illness.

In the end it was the fatigue and the chronic pain that took me down. A year ago I ran 25 miles and trained 6 days a week. I worked a full time job no problem. I was tired, but I was also exerting a lot of energy. Then I had a small procedure on my SI Joint and piriformis, and some how that sent my body into a downward spiral. Within a couple of months I dropped about 35 pounds. I could only do light tasks around the house without becoming winded and needing to rest all the time. I barely remember some months. It's like my brain slowed down to the pace of sludge.

I became sensitive to light, developed dry eyes and didn't tolerate heat like before. That being said, I was indoors a lot so the photosensitivity thing I really need to test out. But, I will say I feel much better walking around in the dark than I do in the day. But, the sun doesn't induce my rash.

Finally, I was diagnosed with Barrett's syndrome (via biopsy and scrape). I know there is a strong correlation between Lupus and the esophagus, so we're working to get control of this immediately.

Now the blood tests: Positive ANA (repeated 3 times @ different labs), but it's weak at 1:80. Positive antihistone antibody ( > 1) and positive Lupus Inhibitor/Antibody. I have a four year history of leukopenia and my IgG levels are always a little off. I'm not super worried about that and it could be completely unrelated.

I have a lot of nerve pain, but that's always complicated to diagnose and deal with. Given my history of sports and sitting a lot at the computer, it could very well be related to those.

So ... all this being said, I'm still struggling with the Lupus diagnosis. Maybe too many years of seeing too many different doctors or perhaps I'm just a little scared. In any case, does any of this sound familiar or like the experiences of yourself or others?

Thanks so much for taking the time to read this. If there is one thing I have learned, this is a very lonely process.

[whisperit in reply to katidid]

That's quite a journey, and I can only sympathise. As I've said here recently (rather too often), my auto-immune disorder has fallen on me like a tiger (or should I say wolf?) dropping from the sky. 18 months ago, I was enjoying 3 part-time jobs, mountain biking twice a week, and volunteering as a warden at a local nature reserve. For the past 5 months, I have been so sick and so bone-tired, that I barely leave the house, instead, spending all day, every day, sat in an armchair. Today is the same, with the added pleasures of a thumping migraine.

I have gone through a battery of tests and diagnostic labels and last week, my rheumatologist told me that there is little more he can do - I have to learn to live with this condition (whatever it is!!!). In 2 weeks' time, I will be signing a form to accept early retirement on ill health grounds.

So I too am struggling, full of questions and doubts, and not yet ready to give up. Please hang on in there, and keep in touch. It may be only a small thing, but this forum is a way of sharing solidarity and ideas.

Mx

PS you *do* have quite a few practical questions in there. Cuttysark has picked up on the pancreas one, but if you don't get much back on the others, would it be worth making a few separate posts, taking each issue in turn?? x

[Hidden in reply to katidid]

Going to be purely clinical here as doctors can be. They speak about the lupus criteria. Your bloods which they love; you have had positive ANA doesn't matter if its weak, low white cells, positive antihistamine, so you've hit those markers. The arthritis is meant to be inflammatory but not destructive, yours may be complicated by being a runner so soft tissue damage may already present. Photosensitivity is another you hit. Rash takes many forms malar is most obvious. Nerve pain could be neurological or a complication of sport. Barrets and fatigue not on the criteria but there are lots of stuff that is associated but not a marker. Ive over simplified but there seems to be at least 4 criteria you meet. However, because so many autoimmune conditions overlap its so difficult. At least most of time treatment is similar. good luck keep us posted.

[Mbgood23 in reply to Hidden]

My ANA keeps coming back normal but skin biopsy is positive, but I'm fatigued, so so tired sometimes don't even want to go to bathroom and other normal and needed life things. I have joint pain in fingers, knees, hips, neck pain. If not related to lupus than what???

[Fg27]

It's very confusing at the beginning, and doesn't get much better to be honest! I think a lot of it has to do with the fact that no one really knows enough about it! So everything is just trial an error, we are all different, have different signs and complications and respond differently to treatment.

The best thing I think is to talk to other lupus patients, there usually seems to be someone who has had the same problems.

I hope your treatment is starting to work, it takes a while to get your head around everything.

[katidid]

Sorry - forgot to add a big one: I was treated for psoriatic arthritis before the Lupus diagnosis. They pumped me full of TNF inhibitors and I got much, mch worse.

[Bacardibabe76]

Hi.

I am sorry you are confused. Reading your further response I just wanted to let you know you aren't alone.

It isn't like other problems where you know the symptoms and you get those symptoms and that's it. For every person their lupus affects them very differently to others. This is because it can attack anything in your body and why it's so hard to diagnose, and why people spend years suffering.

When I look back to before I was diagnosed I wonder how I managed, but I was silent because I was labelled as always sick and a hypochondriac. When my diagnosis came I felt vindicated but also overwhelmed.

Even now I have new symptoms popping up and old ones disappearing for a while.

I was photosensitive years before I knew I was, I didn't always get a rash but very unwell when went to see family in Spain. I would always end up on antibotics. I found hospital lights bring me out with malar rash. Mine never stayed and got crusty just burned like mad and bright red. Some work lights did this too so it doesn't have to be the sun.

As for malar rash, it's different, it could be a discoid rash or a vasculitic rash both of which I get in warm weather.

I started having the odd joint hurting and then all of a sudden loads were hurting. My symptoms did start adding up and got far worse when unwell.

Headaches, memory loss, confusion, irritable, moody, and the list goes on. I even thought I had dementia.

I was in and out of hospital so many times with different surgeries and proper illnesses within 6 months it was ridiculous.

It all adds up, and reading your post could definitely be lupus and a positive Ana is positive even if weak. I used to have a weak ANA and recently started a drug trial and the hospital at guys retested my ANA and it was negative but my blood was also sent to Sweden where the bloods are tested for the trial and they had my ANA at like 1/340. So it depends on the test kit they use.

Best thing is to start the treatment and see how you respond.

Good luck 😀

L x

[Ccupcakes in reply to Bacardibabe76]

Am really relating to your history Bacardibabe

[cuttysark]

I wanted to reply with regard to your pancreatic issues. I am sero negative so basically they dont know what I have, just a Lupus like illness at the moment.

I have had most of the symptoms you mentioned but the worst for me is biliary and pancreatic inflammation. I can tolerate virtually no protein and no fat of any kind. It is totally miserable as I have constant pain which is only relieved if I am on a strong steroid such as dexamethasone. After that I can eat normally and digest,

That drug is too strong to be on permanently so I am on ten weekly steroid injections and oral pred on top every day. They are not keen on using Mycophenolate as I am sero negative and live in Scotland which is increasingly feeling like outer Mongolia with regards to NHS!

I also have muscle and joint pain, severe muscle weakness, eyesight problems, kidney problems, massive brain fog at times, rashes and photosensitivity etc etc.

Almost anything can appear with this illness.

Even my Rheumatologist said medicine is still in its infancy with regards autoimmune conditions.

Just have to keep hoping for enlightened medics to be able to help us more.

All the best, xx

[katidid in reply to cuttysark]

Thanks for your reply and I think I might be able to return the favor w/some pancreas advice. I started seeing a Gastro and I am on prescription-only digestive enzymes. Called "ZenPep". They are basically a pig's pancreatic enzymes that supplement your own. I know it sounds gross, but OMG they work wonders. For me, the only thing I could eat was boiled chicken. Once I got on them, I can tolerate everything but fruit. Still have to cook my veggies, but healthy fats are more easily broken down. You should talk to them about that. They are normally given to Cystic Firbosis patients, but you can push for them. Usually covered by insurance, too.

[cuttysark in reply to katidid]

Appreciate your suggestion. I have actually been on this for fifteen years!! The type I am on is Creon extract of pig pancreas and also Ursofalk a bile acid made from synthetic bile. It used to help a lot, but things have got so much worse in the last three years that by now eating is awful.

But you have given me the idea that I might ask my new gastro if I could even try a different brand which might make a difference. I havent heard of Zenpep. Are you in US?

They think my pancreas is not producing many enzymes at all, hence I cant manage protein. Also they think there is inflammation in the tiny bile ducts in the liver, hence the constant biliary pain, sweating and itching. They can't really do anything for that but the Ursofalk at the moment.

I am fine with all fruit and veg, can even eat raw veg ,as just fat and protein the major problem.

In fact I can't eat cauliflower or broccoli as they are higher in protein, same with avacado, high in fat.

[katidid in reply to cuttysark]

This is really interesting. I was on Creon but stopped because it wasn't working anymore. That's when they started me on Zenpep. It doesn't take away all my gastro issues, but it def helps with pain when eating, especially heavy meals. One trick they added was to stay away from raw, fibrous things like cauliflower, broccoli and bug leafy greens and to try as much as possible to cook my veggies. It helps soooo much. Just cutting back at each meal and cooking finally let me eat them again. Fruits are still 100% a no go. But, I've heard that's common with pancreatic issues since it's involved in the breakdown of sugars. Have you tried cutting out fructose? When I did, the itching and the face redness got better.

[cuttysark in reply to katidid]

Thanks for all that info. I will certainly try your suggestions.

The only thing that helps at the moment is a much higher dose of steroids so it would be wonderful if I could manage better without that.

[soootired]

A lot has already been said, I just wanted to reiterate that this disease is different for each one yet somehow the same. It has been said earlier by bacardibabe76 that some symptoms mysteriously disappear and I really relate to that which is why this forum is so important. Speaking to others helps stabilise you somehow, stops you thinking you're imagining things or going mad!

For me it has changed in some ways improved with hydroxychloroquine in many ways - I was using a walking stick at only 42 but don't need it now. - but got worse in others. So 2 1/2 years later I've had azathioprine added now. The only thing that really works is steroids 20mg but I only take them short term when I flare (which is at least once a month) for about 10 days... but when I'm on then I feel almost "normal" which makes me feel a bit sad because I realise how "ill" I am the rest of the time.

Use this forum, it will educate you and empower you.

Take care and keep in touch. 😊

Claire

[Chanpreet_Walia LUPUS UK]

Hi 001kat1d1d001,

You are not alone! The LUPUS UK Health-Unlocked Community allows you share your experiences, gain support and provides you with the opportunity to connect with other people with lupus making this process easier to deal with.

The symptoms you have described do seem to be those that are associated with lupus; joint aches/pains and fatigue being the most common. A malar rash does usually resemble the shape of a ‘butterfly’ across the cheeks and bridge of the nose. However, lupus presents differently in everybody therefore, the rash may not look the same on every person. An in-depth description of symptoms can be found via our information packs which you can download or request here: lupusuk.org.uk/request-info....

As for the light sensitivity you are experiencing, I would suggest having a read of our factsheet we published on ‘LUPUS: and Light Sensitivity’ which I am sure will be of help to you: lupusuk.org.uk/wp-content/u...

Around a third of lupus patients have some sort of eye related matter such as ‘dry eyes’. We published a factsheet on ‘LUPUS: The Mouth, Nose and Eyes’: lupusuk.org.uk/wp-content/u...

As lupus presents differently in each individual, people may experience periods where their symptoms are persistent (flares) where their lupus is better controlled and they feel relatively better.

Wishing you the best of luck, let us know how you get on.

[Hidden]

I can totally understand your confusion. I've been in a constant state of confusion since being diagnosed and treated for seronegative RA six years ago (well 5 and half!). I met the criteria at the time but then all four drugs I was put on made me very ill (including pancreatitis).

So then I was tested by a new rheumatologist while on steroids and everything was negative apart from inflammation which was still high. And symptoms were quiet because I was still on steroids! The chap said I had polyarthritus unspecified and no connective tissue disease, maybe some form of cancer to explain the consistently high inflammation. Finally I moved again and this time, off all DMARDs and steroids, my ANA was 1:320 with unusual nucleolar pattern and high immunoglobulins so had a lip biopsy which was 100% positive for Sjogrens. Now I'm on Mycophenolate but they change their minds about this too - having scared me witless about Lymphoma and brain involvement and then, once these had been ruled out told me there was no treatment apart from Pregabalin for my widespread neuropathy. This was after encouraging me to start Mycophenolate - which I had already begun. And giving me info on Rituximab to take away with me and think about?

What a muddle it all is! Now I know what I actually do have I realise I've had it for many years, possibly since childhood - along with Hashimoto's, some RA and probably childhood Lupus too. I never accepted RA as my main diagnosis because, even though I met the criteria, it didn't feel right. My rheum and GPs all just thought I was in denial - but I really wasn't as it turned out.

Sjogrens often shows in a positive ANA and can cause Pancreatitis, GERD, Barretts Oesophogus, and neuropathy as well as bilateral synovitis.

Maybe you too have other CTDs in secondary form to Lupus or else have several overlapping diseases mildly, one being Lupus? Or maybe they are right and your form Lupus is just yours? I often think it's a disease that often customises itself to its owner so that no two people ever have exactly the same disease.

[katidid in reply to Hidden]

Thanks for the reply. Yesterday's doc appointment yielded positive for Sjogrens and he does think there is overlap into PsA, while not full blown. We talked about the never-ending pain and the consensus is some of it is mechanical and some disease related. He was helpful in getting me to understand that some of the mechanical issues (and why I flared up so badly when they treat them) are negatively effected by things like Lupus and MCD. You just don't heal and the sublaxation I have in my pelvis and toes may or may not ever resolve. So, more information. Maybe not what I wanted to hear, but I'm getting my head around it!

[cuttysark in reply to katidid]

Glad to hear you have some answers at last. Hope they can find some treatment to help you. x

[katidid in reply to Hidden]

Hi Twitchytoes, do you have any recommendations of where I can learn more about Sjogrens? After all this, my mom (who has RA) was just diagnosed. She also has GERD and neuropathy. We were both surprised as no doctor has ever told us this was part of that illness.

[Hidden in reply to katidid]

If you are in U.K then the BSSA gives out very good information. If elsewhere then the Sjögren's Syndrome Foundation are great. Sjögren's World Forums are a good place to go for info too I have found.

Incidentally - I posted here myself yesterday with photo of my very weird and uncomfortable, swollen , pitted fingertips. I'm wondering if this could be the first manifestation of PsA - since I do have Pompholyx on and off and a lot of arthritis with high levels of inflammation in my blood.

[katidid in reply to Hidden]

Pitted nails are one of the most unique aspects of PsA. If you have any skin leisions or SI pain, def follow through on that diagnosis! treatments for PsA can sometimes cause drug induced lupus or make it worse so my best advice is to really talk it through with your doc and see about a confirmation from another esp if they go the biological route

[katidid]

Thank you all! I really appreciate the warm reception and look forward to talking to you more!