Symptoms and time !

[Ginge1234]

After 20 years off living with and managing this disease .. fighting .. have people found symptoms have got worse better or stayed the same ?

[Barnclown]

Interesting question! This is a complicated question for lotsa reasons, especially cause, as my current rheumy said at our first long appt : not all your issues are due to lupus...

eg. of your 20 years since the lupus diagnosis:

- how many years do you feel your Lupus has been ‘adequately medicated’?

- are you diagnosed with multisystem secondary immune dysfunction & conectibe tissue disorder diseases? If yes, how many are multisystem & how quickly were they convincingly diagnosed + adequately medicated?

For instance, my Lupus was diagnosed when I was a toddler in 1954. At that time it was relatively mild, which is unusual for infant onset lupus, but we think my simultaneous early onset primary immunodeficiency disease (PID) could account for the relative mildness of my lupus until, say, the 1980s when stuff got worse & kept getting even more worse

Of course, back in the 1950s-80s lupus & co + PID science etc was more basic than they gradually became. So I more or less survived with emergency systemic meds + lifestyle management until my early 50s by which time multisystem debilitation had progressed due to my lupus ( & secondaries (sjogrens, vasculitis etc) + PID & its secondaries having gone so long without adequate daily systemic meds.

My current rheumy took me on in 2010 & soon after so did immunology HURRAH...so I’ve been MUCH more adequately medicated generally for enough years now to know how great it feels when lupus & co + PID are relatively well damped down.

But figuring out how to safely medicate me has been a complicated trial & error thing...as it is for most of us, I guess. I’m a very compliant patient, but I only take a med long term if the benefits out balance risks inc side effects, and I’ve been dedicated to self help/lifestyle management all my years

Meanwhile I’m 66 & inevitably my multisystem debilitation has been progressing even though I’m finally well medicated...so I’m quite disabled & my care has segued into the palliative category due to a rare type of AID/CTD/PID organ failure...which is one reason why I’m drawn to your post & tapping such a lonnnng reply 😉

hoping you’ll tell us about your lupus story. looking forward to this discussion ❤️🍀 Coco

[miccika1]

I believe usually people feel better over time. Thats what my rheumatologist said to me. Everyone is different thou, but if you vould normalize all it tends to get better. I have heard that people get better after menopause and that they aren't sure if it is time or menopause. No good research on that unfortunately.

[Jumper99 in reply to miccika1]

Some people get better after menopause but by no means everyone. My lupus has got worse as Ive got older. I’m 67 now so 17 years past my menopause.

[miccika1 in reply to Jumper99]

Did you feel any change in symptoms after menopause? Was it worse if yes which symptoms?

[Jumper99 in reply to miccika1]

Even more affected by heat and sunshine. Had rashes on my arms this year which I’d never had before. Breathlessness and palpitations are worse, although still not really bad. Get mouth ulcers more frequently. Teeth are falling apart 🙁 hair is falling out more now.

I’ve not had bad lupus often in the past and I do have APS but these are more lupus type things. Can’t tolerate hydroxy which doesn’t help. Fatigue and pains are worse but could be either APS or lupus or arthritis. Oh and my face rash is worse, but then it isn’t only a lupus rash in my opinion.

But I was only diagnosed with all my problems when I was 48 and peri menopausal so I can’t differentiate between ‘after menopause’ or just length of time. But some of my condition goes back to when I had glandular fever 50 years ago.

[miccika1 in reply to Jumper99]

Thank you for your insights. Im not in perimenopause and was wandering if experimenting with inducing menopause temporarily would relieve some of the symptoms i have...

[WinterSwimmer]

Hi Ginge - I think the answer to this depends on a lot of things - not least what sort of lupus you have and whether you have organ involvement. I certainly feel better now compared with the early days - but I don't have such bad pain in my joints and tendons as I did back then. In medical terms - although I feel better, my health is worse, because the lupus is now in my kidneys, which can be life threatening. There is also - as someone said below, the question of age, and comorbidities. Add in other life stressors - potentially family issues, work, housing situation etc - all of which have the potential to impact your health both objectively and in terms of how you feel. The key (for me - I can't speak for others) is to acknowledge the illness and not try to deny its existence, while not letting it rule my life.

[fabwheelie]

I cope much better, plus physical health on blood tests etc shows fantastic (often normal and low or even zero SLEDAI scores.) Mental health is much more stable too. However symptom wise my fatigue is getting worse, and I've developed both worsening of pain in some of my "usual areas" plus new pains. I'm however in a bit of limbo about best way forward regards if other treatment options are worth it ... so far managing with hydroxychloroquine, various pain medication, lots of strategies especially pacing myself. As I "do manage" my drs don't really want to change my medication. I was hoping menopause would have perhaps made improvements (no luck there if anything I'm worse...not sure if some of my symptoms are now also older age). I've also only been on low dose hydroxychloroquine so always thought upping that might be an option for me but been on it 17 years and have very very mild colour vision problems on my last specialist eye hospital tests so rheumatology consultant not happy to change the dosage. As my symptoms that "limit me" are mainly the fatigue I'm also not convinced any medication will make much difference there, and still in discussion about would any meds make a big enough difference to pain ( so far going down the physiotherapy, extra pain relief, the occasional localised steroid injection route)

[Ginge1234 in reply to fabwheelie]

Iv managed on hydrolraquine now for 20 years but been in horrendous flare since March managed to get a steroid injection helped for 3/4 weeks but symptoms now back the same plus new symptoms this heart/breathing . Not being given any alternatives ??

[fabwheelie in reply to Ginge1234]

I think often if we've been stable for years we have to really push if we think further options and treatment are probably needed, my consultant does listen to my concerns, however side effects/ risks usually loom in any discussion, especially things like low dose prednisolone, and as I'm a great believer in "keeping moving" I usually try physiotherapy referrals and thing like occupational therapy advice regards equipment to help me "manage" for now. However prednisolone low dose even on a long term basis is needed for many with SLE so that would probably be the next option for me. Plus some consultants are willing to consider methotrexate as an addition to hydroxychloroquine, even for "mild/moderate" lupus

It might be worth doing a little research yourself into treatments and see if you think it's worth pushing for medication change. The charity Lupus UK have all kinds of good info , including things like this factsheet which may be a good place to start lupusuk.org.uk/wp-content/u...

your GP and/or consultant should also be willing to discuss treatment options. There are some recommended guideline that might help you and them reasearch useful options for your case. some good links to those

lupusuk.org.uk/recommendati...

Table 7 in this summarizes recommended treatment startegies according to disease severity

academic.oup.com/rheumatolo...

[Ginge1234 in reply to fabwheelie]

Thanks x I tried to discuss treatment options and was desperate so got the injection / steroid after low dose didn’t work that helped for 3/4 weeks now back to square 1 and they won’t give me an apt until next may !!

[fabwheelie in reply to Ginge1234]

That's terrible about wait time for next appointment. If it were me I'd be ringing my rheumatology helpline on a regular basis, plus keep reporting to my GP worsening symptoms and asking both directly can I have an earlier appointment.

When we've had Lupus for many years I think we become the experts, and we know when current strategies are no longer good enough

[Ginge1234 in reply to fabwheelie]

I totally agree 20 years on I know my body and I know I need an alternative !!

[Hamptons]

My symptoms have developed over time so more joint pain reducing my mobility. I bounce back less well as things deteriorate after each flare. It’s managed better and I have a team supporting me.

[LalSD]

Hello Ginge1234, We found that our symptoms stayed the same. Having said that, Knowing lupus, I did not allow things to escalate and asked for help when I felt things were changing for the worse.

Our lupus is manageable as long as we keep our routine and rest in bed and do not go out to sun and have our regular medication without interruption. Doing all this, we have a close to normal(almost) lives. This meant, for instance whilst everyone stayed five hours at a party, we left after two hours. We made sure we were at home before 6.00 (took breaks in between contracts or could not work for few years) on a working day and only agreed activity for a short period regardless of how well we felt. Always in bed resting whatever happens in our lives and sleep at least 9-10 hours a day. We also did not opt for heavy medication unless absolutely necessary, negotiated an alternative and asked for the doctor's support until we were ready to use it. Doctors are great but sometimes we are not given the full picture of side effects. They have many patients, understandably, therefore I always asked time to reflect and search about the treatment plan, unless we were in an emergency room(even then, I called for second opinions). It is not an easy journey. Lupus taught us to be grateful for every day of our lives, given we were not sure about the next. This was the most difficult part of our progress. Everyone is different and lupus is always unpredictable. With love, Lale x

[Ginge1234 in reply to LalSD]

You just never know when it’s gonna hit you and normally I can manage/fit it but since March it’s taken hold !!

[LalSD in reply to Ginge1234]

March 2020 was difficult for all of us Ginge1234. Our illness took a bad turn too and because I gave my medication to my daughter, I was in pretty bad shape with constant inflammation. I had no access to consultants. It felt as if we were waiting to die and waiting for our turn. I got great help here. It all opened up after I got from this site. Thanks to everyone here. Valuable site.

Hope you feel better..

lale

[Ginge1234]

This has opened up some very interesting valid points and Food for thought thank you .

[Barnclown in reply to Ginge1234]

Thanks again for posting...you’ve all helped me a lot.

[Ginge1234]

Menopause was forced on me at 28 after having a hysterectomy and for me it improved my general health so other than that I can’t really tell .

[Frosty1960]

I'm same had subcutaneous lupus same amount of time, and mines has got a nightmare now. I had cancer aswell 3years ago and after that everything went haywire im now photosensitive and nothing seems to stop uv getting me somewhere no matter what sunblock i have on had to give up all outdoors stuff as end up rashes from head to toe just needs any little exposure on any part of skin then sets off chain reaction to all other areas that no longer see daylight!

[Ginge1234 in reply to Frosty1960]

Me neither bit D dificiency just don’t go out much !!