Help: Hello my fellow Lupus friends. I'm way over... - LUPUS UK


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Hello my fellow Lupus friends. I'm way over in USA across the pond. I am so thankful for this site. I've had Lupus for 15 years and this site has been so helpful. We don't have this support here. I have a question. Right now it's very hot - 93 and humid. Not normal for us in my area. My symptoms have become unbearable. Pain, swelling, fog, fever in the am, major fatigue. Pain in my back, chest and swollen in my tissue in arm pits and sides, headaches and rashes, wah wah right? I don't like to complain but I hurt. My question and thoughts are what do you warrant a trip to the emergency? I haven't called my rheumy yet but I've wondered what happens when you go to emergency? Can they do anything? What symptoms require emergency and what treatment do they offer to help you? Does it require a hospital stay? Sorry to be stupid here but I've never been so bad that my normal meds and steroids don't help. I'm not currently on steroids so maybe that is all that is needed. I'm on plaquinel, methotrexate, levoxyl for low thyroid, naproxin which is an anti inflammatory. Any thoughts?

12 Replies

Hi Judylynne, sorry you are feeling so rough. It's been hot and humid in the UK too and my symptoms were also worse. In my experience a call to the Rheumy is the best move as in the emergency dept I find that they really don't know anything about Lupus. Hope this helps. x

Thanks, I'll make the call today.

Hello judylynne

I grew up in Philadelphia where the heat & humidity can get pretty bad....I remember a lot of temps in the 90s. My infant onset lupus meant I reacted really badly...I struggled with summer weather much more than anyone else in my family....and we didn't have air conditioning...I'm thinking back to 1950s-70s. So am v much feeling for you. I moved to the UK at 21 and for sure, the summer temps here were one of the reasons I stayed on & on here. Even so, I do tend to flare when uk heat & humidity are greater.

So, back to your question....because my mother kept my lupus diagnosis a secret until 3+ years ago when Brit drs finally figured out that SLE was responsible for virtually all aspects of my weird health, my experience of A&E was coloured by the belief I was a hypochondriac with "nothing really wrong"....of course. I am not alone on forum in this....plenty of us have lived with unrecognised lupus for years.

Sounds to me as if you need to be checked out relatively promptly...with your experience of the condition, saying this is "unbearable", means: see a skilled professional, and hunker down to discover how things evolve...try to take it all one step at a time may not end up an inpatient!

one the results, for me, of my tendency not to seek emergency help over the years, was that I only got to A&E when someone actually looked hard enough at me to suspect I was in BIG TROUBLE, and then dragged me virtually kicking & screaming to A& mother-in-law & my boss + my personnel officer at work & my gps literally saved my life at times like those - once from full on septicaemia due to poisoned hand tendons. Another time with a malignant tumour close to bursting. Both of course meant being an inpatient. And A&E has always done right by me. As I began to wise-up about my vulnerability, I got better on the uptake...but, even now, I'll push my limits and usually take advice from our national emergency lines & lupus friends before choosing the A&E option. This year I've become part of a big national lupus trial, so I have more experts available for SOS, and contact with my medical team generally is more frequent....and if I began to sense I was in a critical state, I think I'd contact them....but, yes, my modus operandi is to "hang on in there" much longer than I probably should

Reading your post, I think you're at the point where I'd at least ring up my specialist lupus nurse to talk the A&E question through....but you say such support networks don't exist...ARGH, YIKES, well, am sure you'll get some really good replies here because forum members have definitely been discussing this question over the years...and I'll be vvvvv interested to read these replies

Keep as cool as poss & take care!

Hi Judy,

I'm on your side of the pond in SoCal. I stopped all of my meds in early March. I was allergic to Plaquenil, and methotrexate made me feel like crap and did nothing. I have been on a strict anti-inflammatory Paleo diet, since January, and it's working amazingly well. I feel much better, I have more energy, and I'm not suffering the horrible fatigue and depression I was on the meds. My joints still hurt, as the osteoarthritis that the Lupus accelerated has not reversed, but I'm doing so much more than I was before. I have he full support of my PCP and Rheumatologist on the dietary approach. Also, they both recommended yoga (which I practice 2-3 times per week, but especially Bickram's (heated) yoga.

Hi and thanks. We might be neighbors. I'm in north San Diego county. I'm not familiar with the paleo diet but I started following a Mediterranean diet which seems to offer antiinflammatory benefits. Yoga hurts me and I have no balance so I get frustrated. The bickram is a killer I've heard. I'm sure it's great to get the toxins out. That's amazing you have gone off medications although I'm sorry you are allergic. Thanks again.

Yoga hurts me, too, but it helps me maintain my range of motion. It also will improve your balance. I do about 30 minutes on the treadmill before yoga, and it really helps ease the discomfort in my joints. If I don't move, I get worse, so I'm walking 15-20 miles per week, practicing yoga twice a week (gentle yoga), and light weight training. I'm hoping to get back on my bike soon.

I lived in North County (San Marcos, Escondido, Carlsbad) for many years. I am now living in Santee.

Hi Judylynne

Sorry to read of your health problems but you've come to the right place as we've all been struggling with heat and humidity. Healthunlocked is going to launch in USA I've read recently.

My advice would be to contact your Rheumy re treatment adjustment . It's a pity your not on steroids as these can easily be altered in good and bad times. A&E would be appropriate if your chest pain suddenly worsened or you had shortness of breath. I've recently had this and they're great for an emergency, my pain was so unresponsive I was scared and grateful.Hope I've helped and you feel better, hope it cools off in USA , it has over here now.

What part of USA do you live?. I've got a pen friend who lives in New Jersey.X

My daughter has been told as soon as symptoms appear to start the steroids and increase plaquinel to manage the condition so that's what I would do and see the doctor. If you feel really poorly go to emergency they will properly start you on the steroids or give you a high dose injection to start you off.

Hi: I live in New York City-Manhattan. I have APS but was I have to be retested for Lupus--that after stroke on 3/1/14, it was evident that I had the Lupus factor. I'm on Plaquenil and Warfarin. Are you near the NYC area? I have a great rheumatologist who is the Director of the Lupus Center at Presbyterian Hospital. You're right. It can be very frustrating here because finding doctors that are experts in treating Lupus and APS is difficult. The Lupus Foundation has support groups in every borough of NYC and the one in Manhattan is a huge resource for information. Look online You can also e mail them or call the Manhattan Office.

Jessica Rowshandel, Social Worker, 212-685-4118,

The heat affects me terribly, but it's nice and cool right now and only 68 this morning-hooray!

Best to you.


Hi Judylynne, I too live in the US. The ER is not the place to go for lupus. Call your rheumies office and ask them to send a request for a steroid pack to your pharmacy. This will help quickly, as it sounds like a flare. If you have a good rheumy, he will understand. If not, I suggest you find one that truly understands Lupus and not just arthritis. Have they ever told you that you have fibromyalgia ? Anyway, I hope this helps a little. Take care.

Emergency departments won't do anything unless you're unable to breathe, or are in severe pain - in which case they are likely to put you on painkillers and injectable steroids and then send you home.

The increase in symptom severity is due to the weather - it depends on whether you can bear it or you'd rather do something about it now. I've had an increase in symptoms too because of the heat and humidity but as soon as the weather settles, the symptoms settle down too, so I've chosen to just take anti-inflammatories (e.g. Ibuprofen), rather than go back on steroids.

In your shoes I'd take anti-inflammatories for few days on a regular basis (e.g. Every 6 hours) and see. If symptoms continue to escalate, I'd then email the rheumatologist and see what he says, whether to start steroids at low dose for a short while, etc. it is likely that the symptoms will diminish this way and will go away once the weather improves.

Emergency rooms will only be able to help with the immediate symptoms, not the disease. I am in NY and there are thousands of rheumy's to choose from and not all are familiar with Lupus. My first doctor was a year and a half disaster with someone who was treating my SLE, but totally off base with my meds and current breakthroughs. Every time I mentioned something or told him about the pain, fatigue or any of the other million daily surprises that come with Lupus he made me feel as if I was just a whiner and overreacting. I finally found my dr. through a recomendation from someone at the Lupus Foundation (or one of the local chapters). THey also have an online board much like this one and I know they have support groups as well. Contact them and find a good doctor who is experienced with Lupus. If you are in the NYC area or Long Island, contact me and I will give you the name of my doctor if you'd like.

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