Need some reassurance

[susanfay]

Hi, saw the consultant last week and he said my lupus was very mild. Im taking hydroxychloqine. This has really upset me and made me feel like im imagining my symptoms. My joints constantly hurt and swell and my bones hurt. I have diahorrea on and off. Feel so tired all the time. Have a constant sore thoat and feel very low. Sorry for the rant but feeling quite alone with this at the moment

[Natura]

Hi Susan...i am considered mild too, but there are days I do not feel like my symptoms are mild. I have pain in my shoulders every day and my back. It doesnt go away. I keep getting told to drink more water because my muscles are so tight in my back. I am tired of explaining why to people. I dont think people generally know what lupus is. I have scarred kidneys, clotting disorder, itchy dry scalp, sore throats all the time. And exhaustion, and depression and anxiety.

We shouldnt be counted out of this disease because we are mild..the pain is still there for us. I feel for those that have extreme symptoms. I do not know how they cope.

Hope you can come to terms with. One day at a time.

[susanfay in reply to Natura]

Thank you. Im starting to feel more hopeful already.

[Barnclown]

Hello susan & welcome: you've come to the right place to rant!

When did your diagnosis come through? I ask, because I heard similar things from several of the lower level rheumatologists at my lupus clinic during the first 2 years after my initial consultation with the head of the clinic. I learned here on forum that I needed to keep a detailed log of my multisystem symptom status so that I could make a convincing case for a more effective treatment plan. Many of us find the first years are all about you & your consultants getting to know your version of lupus & what therapeutic treatment plan can help you most

E.g. 1 1/2- 2 years on from that first consultation, it was clear that even the cumulative effects of daily hydroxy + low dose amitriptyline weren't enough to keep my version of lupus adequately damped down. At that point, I pressed rheumatology about the issues in my log of multisystem symptoms and was allowed to try a 4 week 10mg prednisolne taper, which magically damped down the symptoms that hydroxy wasn't. Eventually I proved that 3 of these pred tapers per year weren't enough to consistently damp everything down. At that point we added daily mycophenolate to my treatment plan, which is helping me a lot...and I was still allowed 3 of the 10mg pred tapers per year when chronic symptoms flared. Last year I had a glitch...now I'm on daily low dose pred along with amitrip + myco + pred. This combined therapy treatment plan nicely manages my version of relatively mild lupus...it's wonderful because each of the meds I take is relatively low dose...which makes the risk/benefit ratio better generally

I think this is fairly representative of how treatment plans develop in relatively mild cases of lupus. These first few years are quite tough on us. Am vvv much feeling for you. And I'm glad you're here. This is a link to a good recent discussion here about monitoring symptoms and prepping for appts...there are 2 good links in this post: you can download a checklist which helps you keep a multisystem symptom log ...and you can also download an appt prep guide...both help me a lot ...they might be useful to you too:

healthunlocked.com/lupusuk/...

Take care, keep your chin up: things can & will get better

🍀🍀🍀🍀 coco

[susanfay in reply to Barnclown]

Thank you so much for your advice. It really is appreciated. I will follow your advice and keep a diary. Thanks again

[littleeffie]

Hi Susan,

You've had a couple of great replies so far and I'm sure others will follow.

I just want to add that by consultant saying" mild Lupus " doesn't mean they think your making it up otherwise you would not be on any meds.

Some medics class mild Lupus as no severe organ involvement i.e.. kidney shut down cardio involvement or seizures which can happen with more severe cases.They may even have been trying to in a cag handed way reassure you that so as not to have you overly concerned.

Hydroxy can and does cause upset gastro so please don't be too disheartened by your appt,.

You have found a good place to be here as we all know to an extent how each other feels so care and share with each other ranting,crying,laughing etc.

As coco said keeping a diary of ups,downs and completely sideways regarding symptoms,meds and feelings is the best tool you can have and use.

Take care thinking of you and sending kind caring wishes your way

[susanfay in reply to littleeffie]

Such kindness thank you so much.

[Tiras]

👣👣👣👣👣👣👣👣👣👣👣👣

Hi Susan;

As it has been stated before, you have come to the right place. You have some good advice from the previous post. We here have been sharing our issues as well as our lives.

Lupus effects us all in different ways, but yet it is still the same. Mild case or not you can still feel awful, and have all the symptoms of the worst case of lupus. I have SLE and have been told by my doctors that I have the worst kind of lupus. In the same token I do not have nor do I get rashes on my face. All of my issues are from the shoulder down to toes.

I hope you find answers soon. I also hope you get to feeling better!

I have photos on my home page of some rashes and along with personal life.

Tiras

👣👣👣👣👣👣👣👣👣👣👣👣

"The Barefoot Gardener"

👣👣👣👣👣👣👣👣👣👣👣👣

[susanfay in reply to Tiras]

Thank you that helps.

[Bebe76]

Don't be upset by the 'mild' classification, it usually is referring to whether the lupus is or isn't attacking your kidneys and other organs and people with mild lupus can still have joint and muscle pain and fatigue. It is very important to let your doctors know exactly how your symptoms are affecting your quality of life, as the hydroxy may not be enough to control your lupus (eg: you may need more pain meds, steroids or immunosuppressants).

[susanfay in reply to Bebe76]

Thanks that makes me feel better. I was beginning to think i was imagining my problems

[susanfay in reply to Bebe76]

Thank you.

[chrisj]

I'm diagnosed mild as well Susan....had all the symptoms you mention along with other things, had no idea what was wrong with me until I was finally sent for blood tests....You have Lupus the doctor told me...whats that I asked and I was given a leaflet detailing symptoms etc....I know its not easy but when I read of some of the problems people in here have I'm grateful...most of the time anyway...that it is mild. Take heart you're not on your own and mild or not or its a way of life thats a daily struggle....I know how you feel xxxx

[susanfay in reply to chrisj]

Thank you.

[Ginatay4t]

I had a doctor that told me i had quiet lupus to the point where im on oxygen now i was never treated or put on anything i was only being treated for the flares so is that quiet i do understand anything you can feel is not quiet

[susanfay in reply to Ginatay4t]

Thank you for your reply. Being here is making a difference

[Hobnobbing]

I consider my Lupus mild - I have an overlap with another illness and the nurse told me this can mean my symptoms won't be as severe. I do get joint and muscle pain aa well as fatigue a migraines.

The things that help me are gentle exercise, good sleep, avoiding stress and (please don't hate me for this!) thinking positively and a good sense of humour! Supportive family and friends really help alleviate the stress.

It might be worthwhile looking at the bigger picture. I went through a bout of severe anaemia, vitamin D deficiency and low thyroid function. Taking vitamin D supplements was a real revelation to me - my mood, energy and joint pain al improved.

Hydroxychloriquine made my stomach feel like it was on final spin at the start. It has improved. Don't forget your yearly eye tests. Hope you feel better soon.

[susanfay in reply to Hobnobbing]

Thank you. Already feeling better just by being on here and the support has been brilliant.

[Eddie66]

There's not an easy answer, except to be persistant with your consultant. Maybe ask questions like " what can I take when I feel like xxxxxx?" Maybe in the short time discuss with GP. Try phoning the consultants secretary and get an earlier follow up appointment.

Please don't give up, its tough.

Maybe a pain/symptom diary will give you more ammo when visiting GP's or consultants.

Best wishes x

[susanfay in reply to Eddie66]

Thank you.

[Tre123]

Hi Susan I can really sympathise aa I'm supposed to be in the early stages as they say. I was diagnosed in 2014 at this present momentI'm in bed unable to get up to go to work as in so much pain and sooo tired. I've been feeling really really tired for about 2 weeks and knew it meant something was coming. Went to bed Saturday night woke up Sunday morning and wham.. Swollen joints. Swollen tongue aching everywhere and feeling very feverish which I think is new for me. Had a steroid injection back in May but I think it's obviously worn off now. Not on any meds at the moment as hydroxy made me sick so did azathioprine. They say they will be putting me on mycophenolate on. My next visit. Im in so much pain just typing this and this. As all ur wonderful responses have said you r not alone and this is a wonderful site for us lupues. Im think I'm going to ask my gp to refer me to Guys and St Thomas as they are a specialist centre as along with all the other symptoms I have lost a lot of hair and my rhruemy doesn't seem to bothered but it's a hell of a big deal to me and it brings me really down. Has anyone been to guys? Anyway hon I wish I well also😀

[susanfay in reply to Tre123]

Thank you

[Emily5678]

I just joined ,tonight in fact .or you can say early morning. I know just how you feel . I am feeling exactly the same way.it seems as if there's nothing any of us can do . Noone listens . They just stare at you and expect you to go along with it ,as if it not all that bad . When its you that has just done a total flip in your life . And your never ever going to be the you that's inside that wants to be on the outside ,ever again . So sorry ,cause I am screaming to come back out to .

[susanfay in reply to Emily5678]

Reading peoples replies is helping me to understand and not feel so isolated.thank you