Hi all, I'm new here after my sister suggested I join. I have recently been diagnosed with SLE and am still trying to wrap my head around the whole thing- medications, diagnosis, what this means for the future etc. I've been on my medications for a week now (hydroxychloronine, prednislone and naproxen) 2 days after I started taking them i woke with parts of my gums feeling cold like/numb and the teeth in those areas feeling loose although they don't appear to be. Is this a common side affect of the medications?
My rheumatologist had also mentioned to me that headaches could be a sign of the lupus attacking my brain but it could also be just another symptom of the lupus, is this something that anyone else has experienced?
I'm so totally and utterly confused about what I should be concerned about and what is considered normal for lupus!
Any help, advice or information would be greatly appreciated.
Thanks, Penny
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Penny_P
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I know that this is a scary time for you and you feel like your life has just flipped and you don't know where it is going after diagnosis. You are still the same person you were before diagnosis, only now you will have answers to why you feel bad, and that gives you a lot more control. When I was diagnosed, I had no real idea of what Lupus was, all I knew was that I had been ill for 6 months and now someone was going to help me - that was 6 years ago. My husband was very worried and asked Rheumatologist what was going to happen next. She said, "lets just treat what is happening today, and not worry about what may or may not happen". It took several months for the hydroxy to really make a difference for me and I went through lots of Doctors, tests, headaches (seemed like it was always there), nausea and body pain, but then I realized I was feeling way better. Have had a couple flares a year since but otherwise I am holding steady. I am 63, so I ask myself, what is just getting old or is it Lupus related. My advice to you is, don't think that everything is Lupus, you will make yourself sick just worrying about it. Carry on your life as you were, you are not Lupus, it is just something you have, don't let it take over.
Why did you get referred to Rheumatologist, what were your symptoms?
I started with joint aches and pains in my hands then it started to travel into my arms and then into my shoulders. It eventually was all over. My doctor thought it may have been RSI to begin with and then carpal tunnel until it started to travel. He did some blood tests to check for the rheumatic factor but it was negative. It did show low white blood cells and high antinuclear antibodies and a few other bits and pieces I didn't understand. when the results came back he referred me to a rhuematologist. I wasn't aware until after meeting with the specialist that all the other little health problems that had been going in were all actually related (headache, swollen lymph nodes, fatigue)
I guess this is why it's so confusing for me because I went from being told that my joint pains were probably RSI or rheumatoid arthritis to being diagnosed with an auto immune diease but I don't feel 'sick' I'm not otherwise happy, healthy and very active. It's just not something I was expecting 😔
No, I understand completely. I was going to chiropractors and acupuncturist for 4 years with sore arms and shoulders, couldn't even dress myself sometimes. I ended up getting diagnosis after my face swelled up and had bad rash, Rheumatologist put it all together first visit - Lupus - I didn't know what that meant, but was happy to have an answer.
Yes! That's almost exactly how it played out for me as well. My hubby would have to sit me up in bed and help me take my pain killers because I couldn't move my arms even in the slightest because waking up in the morning and trying to move was excruciating- forget even trying to get out of bed for at least an hour after waking up or opening the door handle. I wasn't prepared for a lupus diagnosis. I'm happy I have an answer and I can start to get back on track again but I know very little about lupus so this whole thing is unknown territory for me. It's funny because I had previously been told I was allergic to UV rays after I would break out in hives like rashes if I was in the sun for too long (oh to my delight I broke out in one of these rashes on my anniversary holiday in Fiji) my specialist had actually since told me that too is a symptom of lupus. So many little things that I would have never imagined were connected are all linked back to lupus
Welcome to a whole new (and weird) world! Everybody seems to have their own version of SLE and its related conditions; I suppose because it is "systemic", it can affect pretty much any organ or tissue, and no one person will experience exactly the same combination of symptoms.
When I was first diagnosed and started on hydroxy and prednisilone, I had a variety of unpleasant symptoms. I rang the rheumatology specialist nurse several times in those early weeks, and also saw my GP several times.
Lupus is a significant diagnosis, and starting on these meds - especially higher doses of steroids - is not always without problems. I would suggest that at this point, it isn't reasonable to expect you to know what is normal and what you should worry about. So don't be shy about using your GP and your rheumatology service as often as you want to.
You'll find alot of support in this group Penny, we all share our experiences and helps us deal. We all have such an array of symptoms and sometimes they over lap with other people. It's a difficult pill to swallow being diagnosed but it atleast helps you deal.
I was really scared when I was first diagnosed, being a pin cushion and after many different diagnosises they finally settled on lupus, but even with that there's extra "bonuses". I'm not an active member of this group but I stumbled on it a few years ago when asking google countless questions. It's been a life line in my darkest moods, and has helped me come to terms as well support me.
Having family support is one thing, but it's hard to describe how tired you are. You will feel and hear people say you're over reacting and that you're playing on it because it's so hard to explain things others can't see.
We all have lives to live, and it's great having this network of likeminded people.
Welcome to the lupus Forum, hope you enjoy being here!. Having a sudden diagnosis of lupus can be a very worrying time but if you stick to the lupus uk website and this forum you will get the right info.! Lupus can produce some interesting symptoms, no one sufferer has the same !. I'd say that your mouth ones could be nerve related as the inflammation can affect nerves!. Others on here have more experience of those symptoms than I have. You've only been on the medications a week and Hydroxy needs time to build. Good your on steroids as they work faster. What dose?. Hope you've been told about reducing them slowly!.
Headaches are also a big feature of lupus, can indicate a flare because again it's the inflammation that can cause them. For me and others on here a migraine can be the first sign of a flare coming. Helps us adjust what we do!. Your consultant may well do a brain scan, not because he's specially worried at your symptoms necessarily but as a routine check, gives baseline info to work with!. I had one when first diagnosed. You will probably have other tests too with this in mind, just to stop you worrying!.
Lots of TLC for you and given time you will put it all into perspective. It's tough at the mo, you've had a shock!. Had you been ill a long time?. Take care and keep posting. X
My rheumatologist has put me on small doses to medications to start with and he has said we can gradually move up the dosage of needed. He's put me on 1000mg naproxen, 400mg hydroxychloroquine and 5mg prednisolone to start with. It's only been just over a week since my diagnosis so everything is still a big jumble for me 😳
In regards to how long I had been ill- I had been having lots of joint pain since October and it was gradually getting worse. My GP had thought initially it was RSI then carpal tunnel then rheumatism so referred me on to the rheumatologist. It wasn't until that appointment that all the other little things That had been happening for 3 or 4 years that I always passed off as nothing were identified as actually being part of the overall problem (headaches, swollen lymph nodes, fatigue, rashes, hives after sun exposure etc)
For me yes I agree it was a big shock because there was nothing mentioned about any auto immune issues through all of it until the specialist linked all the dots together and at that point even though my sister has had auto immune issues for years (initially thought to be ITP but later diagnosed as lupus) I really don't have any idea about at all. It's all 1 big learning curve.
Saving grace at this point really has been my sister and this forum because it's showing me that it's really not a death sentence and when it's under control I can still live a normal healthy life 😄
Have you spoken to your rheumatologist about the possible side effects you may be experiencing?
Absorbing lots of new information can be overwhelming which is why we offer a free information pack containing simple yet, informative literature on the symptoms and diagnosis of lupus which you can download or request here: lupusuk.org.uk/request-info....
If you would like someone to speak to, we have local LUPUS UK contacts that cannot give medical advice but are there as a listening ear to offer support over the telephone. These contacts mostly have lupus themselves and are volunteers. To find out more on having a local contact to speak to, as well as information on support group meetings you can email me at chanpreet@lupusuk.org.uk
We have more information about lupus headaches in our factsheet, ‘LUPUS and the Brain’ which may be of interest to you. You can read and download this at lupusuk.org.uk/wp-content/u...
Yes I have spoken to the specialist and he doesn't think it's anything to do with the medications even though it started right after I started taking them.
Thank you so much for the links. I will definitely have a look at these.
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