First post on here…a bit daunting, but I hope I can get some advice 😊
I was diagnosed with Lupus SLE at the end of June and since taking Hydroxychloroquine, the pain went away and I basically was feeling back to my normal self (I was diagnosed with mild lupus). But for the past 2 weeks, my joints have been very painful, especially my wrists, my chest is hurting too, and I’m so tired all the time. I’ve also developed Raynaud’s phenomenon in my toes and fingers, while it had only happened once before and only in one finger. Now I’m getting it everyday, several times a day.
I had blood tests earlier this month and just got the results - still abnormal - but what should I do next?
Should I contact my rheumatologist to explain the pain has come back? Or should I just take Ibuprofen and suck it up?
I’m also feeling a bit down at the moment. I guess, the whole time waiting for a diagnosis was (as I’m sure most of you can relate) a stressful and anxious time and when I felt good again, I thought that was it and I had found a solution to it all… and now I’m fed up and in pain again…
sorry for such a long post… and thanks for reading!
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Liliepepette
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I hope you are feeling well and as a 51 year old male I have had SLE for 25 years.
So the question you asked was what next? Well the answer to that is how bad you have got SLE. I say this because some people go through life and they have the odd aches and pains and flu like symptoms known as flares, some people suffer from really bad fatigue. This disease is like a lottery and I hope you have the mild symptoms and not suffer from it too much. The important thing is to get your medications correct to what your body feels better with because one medication that doesn’t agree with you can cause a lot of problems. Please don’t be alarmed by my story as I’m one of the unlucky ones and none of what I had may never happen to you so please I am just explaining what can happen in extreme cases.
In 1997 I was rushed into hospital with a blood clot on my brain resulting in having plasma exchanges which by the grace of god saved my life. This was called TTP. If you look at the various conditions you could get or the list of criteria you need to be diagnosed with SLE that is one of them. Just to mention you only need to have so many of these criteria to be diagnosed with SLE it doesn’t mean it will happen to you this is just the beginning of my story. So I was prescribed various medication then I started to get Pleurisy again and again 12 times till I was hospitalised. I did smoke at this time which didn’t help! I tried to stop smoking but suffered a really bad chest infection which turned to Bronchitis. I took antibiotics but I got worse and in 2003 I got double pneumonia and was in a coma for 9 days. The stuff that was getting pumped out of me after I had been woken up was absolutely disgusting. I was 12 stone when I went in and 5.5 stone when discharged from the hospital. During all this time from 1997 till 2003 my chronic fatigue and joint pain was always there, with good days and bad. By this time my medication I felt was the correct mix for me as again although I continued to have flares every now and again I just upped my prednisone tablets in according how bad I felt. Now as you know SLE can affect any of your organs therefore I tried to get as much exercise as I could when the chronic fatigue would let me. In 2011 I felt so so very ill that I couldn’t even lift my arms or head off the pillow so my wife phoned for a doctor. When my doctor arrived he done a few tests then told me my kidneys had stopped working. It was my 40th birthday on that day! What a wonderful birthday present! I was taken to hospital and went for an operation to get a fistula put in my wrist. This procedure swaps your main thick vein to go to the outside underneath your skin with the little veins go to the middle. The reason they done this is so when I now have to go on dialysis they have a bigger vein for the needles to go into. I spent 4 hours 3 times a week on dialysis. My family and friends all offered me a kidney but I couldn’t bring myself to let any of them do it because I would never of forgiven myself if anything happened to any of them. After 9 months of dialysis I was lucky enough to receive the most generous, amazing gift from an amazing angel who had filled in a donor card and sadly died. People like these should have a special statue or something made and show how amazing these people are!
I had my transplant in 2012 and up to this day everything’s excellent on the kidney side of things. I still suffer from flare ups and have been diagnosed with fibromyalgia now as well.
Now that is my story but I’ve been very rare in all of my illnesses. This won’t happen to you. You will have the odd flare up now and again but that will be about the most you will suffer. I know that my story sounds horrendous but I have a cousin who has SLE and she is a personal trainer, fit as anything therefore what I’m trying to say is everyone is different and it affects everyone in a different way! So don’t worry about it, fight it and keep yourself safe and well,
Good Health, Good Luck and don’t let it take over your life,
Thank you so much for sharing your personal story. I’m really sorry you had such an awful time and I’m also very happy you were able to get a kidney transplant and it’s all getting better at last for you.
I am also an organ donor (if anything is good to take 😜) after my grandpa died and they managed to give away some of his organs, including his eyes! 👍
Although your story is scary to hear, as I’m sure it must have been for you and your family, it’s also very encouraging; especially to hear that your cousin is a personal trainer with SLE!
Thank you for taking time to read my post and to reply to it.
Today, I’m already feeling better than yesterday, so I guess I just need some positive attitude and take it day by day. Your message definitely helps too.
Take care and I wish you good health and good luck too
I’m writing this just to emphasise that you will have more good days than bad by far! The fatigue gets you down but when it passes try and take a walk, get some fresh air or just do a few exercises because in my experience the more it gets you down the often the illness seems to bite, so I try and bite back, so although I know I’m not, I like to convince myself I m the one in charge! I have experienced a lot of things through this illness so any advice you need just ask me and I will try and help, if I can’t help I’m sure someone on this fantastic website can. But I will always try and help you if I can because when I was first diagnosed although I have a wife and family I felt so alone, no one understood what I was going through and sometimes it felt like I was making it up because I would look fine on the outside but my inside was raging. So therefore any questions or advice I will help when I can. I am no doctor but the doctors you see don’t know what you are feeling because they don’t know what it feels like! So please feel free to ask me anything and if I can not help I’m sure the forum will. Have a very long pain free time and I will pray that you only have it very mild and rarely suffer any flares!
All the best to you, keep healthy, keep safe and keep smiling!
As you are newly diagnosed it takes time to understand the condition and how it affects you. It can be frustrating, upsetting and painful. Sounds to me ‘you are in a flare’. Your rheumatologist is there to support and help you. Make you as comfortable as possible. Make a diary of symptoms. Dont be frightened to ask. Easy to say… we’ve all been there at some point….,but try to stay positive and consider joining a lupus support group if possible. You will find compassion and understanding from those who have had a similar experience. Hope this helps. Best wishes.
Thanks for taking time to read my post and to reply to it.
You’re right. I thought I’d made up my mind and felt ok with it now I had the drugs and no more pain. I think it threw me when the pain started again, even though I knew it was a possibility… today my pain is much less and reading these messages are also helping me feel more positive.
I will definitely take your advice and write down my symptoms and share with my rheumatologist though. He’s been very good with me, so I’m sure he’ll be able to direct me too. I just don’t want to bother anybody if it’s not worth it.
Hi Lilie, its quite acceptable to have meds increased during a flare. On my experience if you have a lupus nurse you might find phoning her to discuss is a quicker route to sorting the problem. She/he works daily alongside the rheumatologists and can discuss your situation with the rheumatologists much quicker than waiting for an appointment etc. Just a thought! On several occasions I have been told by my rheumatologist ‘why didn’t you communicate this earlier we could have helped you.’ So don’t be frightened to ask is my advice. Best wishes
Welcome! I would always let your rheumatologist know about any new or worsening symptoms. They should have seen your abnormal blood test and may want to examine you to check if you’re having a flare-up, in which case it’s better to address it earlier rather than later. (Remember that lupus can cause damage internally in ways you don’t notice). Flare-ups will usually mean a short course of stronger meds. Otherwise, it could be that the HCQ is no longer working for you and you need to change dosage or medication. Unfortunately, lupus can present mildly but worsen over time. For instance, I presented with joint and muscle pain but went on to develop kidney issues a while later. This doesn’t happen to everyone but keeping your rheumy updated is the best way to help them help you.
Thanks for reading my post and taking time to reply to it.
You’re right - I will take note of my symptoms and contact my rheumatologist about it. I didn’t want to bother anybody if it was just “normal”, but it’s true that it’s best to mention it in case there’s more to it and at least that way, they could always check for anything wrong or see if meds need to be changed.
Today I already feel better, so could just have been a flare up, but I’ll definitely take your advice on board.
Best thing to do is inform yourself about lovely old lupus as much as possible. It's possible your sle was triggered by something. Mine was extreme stress from work. No lupus' are the same.
There's are things that your doctors might not suggest that actually do help. Most docs like to push pills and deal with symptoms, you may need a low dose of steroids atm to help with your pain.
Lupus can not be cured but there are ways to help ourselves. Try reducing your eating of inflammatory foods, this is good one to start with, try something like a a no alcohol, plant based diet for a few weeks , see if you feel better. You soon get use to it, though I really struggle to stay away from sugary foods. Mindfulness and exercise is a must. I have daily pain, but find Qigong is great for my joints.
I've always been told to dramatically reduce if not stop taking altogether, Ibuprofen. Something to do with it affecting our renal functions, but that could be just for my situation. Might be worth asking about that.
You want to ring your Rheumatologist, ask to have a contact. A lot of us on here have a lupus nurse that we can ring for advice. Ask if you have an appt coming up, if not you want one.
You need to get warm socks with a tog, I got mine from Amazon. Try not to warm cold hands up suddenly. This makes them worse, I wear gloves inside as well as out.
Everyday try and find one thing that makes you happy to be alive.
Thanks for taking time to read and reply to my post.
So many great advice here - thank you so much!
I’m ashamed to say I had to Google Qigong 🙈 but it looks pretty cool 👍
I definitely need to start exercising again. I used to, but since falling poorly and then being diagnosed, I haven’t gone back into a routine of exercising…even though I know I should!
Also, I have noticed a difference with what food I’m eating. I’m not sure which types of food are bad for me though, but I’ve increased my intake of green vegetables and reduced sugary/fatty food already. Today I already feel better, so I’m guessing (?) it helped?
I’ve also rested more, going to bed pretty much at the same time as my 4 year old son!! Haha
I will see how to contact my rheumatologist- I’m pretty sure I can message him/his team on MyCare and I think they’ve given me a card with a phone number to ring (I’m not very good at ringing people, but I guess I should).
Also, I wore 2 pairs of socks today (bamboo and big fluffy ones) and my slippers too (Im lucky I can work from home!) and that definitely helped!
Will see what I can do about my hands, as they get cold typing on my computer keyboard and we’re not upping the heating at the moment hehe!
Thanks again for your help, support and advice - very appreciated!
Yes, it could be stress - I never used to be a stressy person, and usually quite the opposite and very laid back (sometimes too much even!) - but I’ve got a new position at work with big expectations and I want to show I can do well, so I guess I got a bit stressed maybe.
On top of that, we’ve had a few issues in our personal life (partner’s grandpa’s funeral and had to travel for four hours to get there and our car broke down, 4 year old son on antibiotics for the 2nd time in the past month, etc…). Nothing major but just additional “hassles” I guess?
I also think I haven’t eaten well enough (fatty/sugary quick and easy food) and not rested enough 🤷♀️
As someone on here suggested, I will take notes of my symptoms though and contact my rheumatologist. We might find what’s caused it.
You've been given some excellent advice above and exactly what I would've said too 😀 So I won't repeat. I will share my history, which should give you hope that things can get better with the right care - both from your consultants, you and your nearest and dearest.
I was diagnosed with Lupus in July 2008. Like most, to say I was distraught and scared witless is an understatement. I was worried for myself, but more than this, I was worried for my wife and mum, and then when they came, my kids. If it was just me alone, I would’ve been absolutely fine with it and would have just gone with the flow.
Prior to diagnosis, I was an absolutely fit and healthy guy. Very rarely sick. I was playing football twice a week – sometimes twice on the same day, afternoon with my work colleagues, then evening with my friends. I went to the gym twice a week. Ran twice a week. Surfed a couple of times a year (wasn’t very good at it… and still not very good at it now). And a few other sports thrown in in between. But all of this ground to a halt soon after returning from a ski trip. After returning I felt a mild pain in my left knee. At first I thought it might have been a mild strain from football, but couldn’t think how I could have got it. Then I got the morning pains and fatigue. Couldn’t bend my knees or fingers, walking up and down the stairs became difficult etc.
I was sent to a rheumatologist who at first diagnosed it as arthritis. After initially being distraught, I thought “OK! I can live with this”. But soon after I received a letter telling me it was SLE. I’d never heard of this so done a Google search. And that was it! I was scared witless. Distraught. I was put on the usual base line drug of Hydroxychloroquine. Then a couple of years later I was on prednisolone. I had no organ involvement until 2017 when all of a sudden my kidneys were attacked. I was put on a high dose of steroids and mycophenolate. I was also asked if I wanted to participate in a trial for Belimumab (Benlysta). I’d read of this drug and the feedback seemed very positive, so I jumped at this chance. As with most trials, the only downside was that I could be trialling the REAL thing OR just a PLACEBO! But I was up for it. To cut a long story short, I was lucky enough to be on the real thing and it worked miracles for me.
I'm now back to playing football, swimming and surfing. I don't have the same energy levels as I did before, but it does feel great to be doing some of the things I used to. But me being me, I have to be very careful and not over do it and listen to my body when it's telling me to "slow it down and rest". I don't always listen and still sometimes try and beat the disease, but there's always one winner in that battle! So as you've been advised above, when you need to rest, most definitely do rest.
I hope things get better for you soon, and we're all here to always offer support and advice 😀
Thanks for taking time to read and reply to my post.
Your story is quite scary and quite similar to mine in some ways.
I’ve never really been poorly before and was a synchronised swimmer at high level as a teen, training 20h a week. Then I stopped and “lived” a little, as most people in their 20s might do, then been exercising about 3 or 4 time a week…until I had Covid (not in a bad way), then went to visit my parents in France and suddenly got a rash on my elbows (of all places!) and the pharmacist said it looked like a sun allergy - I have always lived in the sun (before moving to the UK 😜) but took antihistamine and it got better…until we got back home and on the Monday morning when our alarm clock rang and I couldn’t get out of bed. I couldn’t move any of my body parts, until I really tried and it really hurt, because I had to get up to get our son ready for nursery…but when I struggled to go down the stairs and even walk, I had to call my doctors surgery. After so many blood and urine tests, and saying how I was such an interesting case, they finally got me to see a rheumatologist who told me on the day that I had lupus SLE… to which I replied “what’s that?” And he looked it up in French to help me and said “in French it’s lupus” 😂
Anyway, I guess I just need to learn more about it all and learn how to manage it.
Like you said though, it’s not just about me, but especially looking after my 4 year old son and hoping he doesn’t get it either.
It’s good to hear you are better now and back exercising again. It’s positive and I guess that’s also something I need to focus my mind on too: positivity!
Just need to tell you there isn’t a disease called ‘mild lupus’ and one called ‘severe lupus’ it’s just a label consultants slap on depending on your symptoms. It is supposed to be reassuring but it alarms me because it misleads everyone.
I have had lupus diagnosed since 1994. It changes hour to hour day to day and week to week. If you are feeling poorly you need to tell the consultant. They might increase your hydroxychloroquine or they might suggest immune suppressants. My consultant very cautious about the latter due to flu and COVID …it is a balance of how you feel against risk.
Other things to do….sunscreen always even in winter, vitamin d supplements, get vaccinated for flu and other things like pneumococcal pneumonia. REST. Hot baths and paracetamol are good. Stay warm if you can. Do gentle exercise. All these things work sometimes for some of us.
Biggest advice I have….don’t be passive recipient of treatment. Actively seek help when you feel you need it.
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