Swollen fingers.

[ava97]

Nowdays I m seeing that my fingers are swollen..they are tight and make me feel uncomfortable to work or hold anything for sometime.why iis tthis happening?Is it lupus flare??or anything serious??I havn't todl my gp about this.but he asked me about this if this happened than he will increase my dose he said.which I don't want cz I have already gained fat in my body and my face looks horrible cause of steroids.I am on 10mg steroids.I don't want more cause my face has got so much fat..what I should do now??there is no other option??plss suggest me something

[Carolyn1063]

Hi Ava, sorry you're having trouble with your hands & are worried about increasing steroids. My weight gain coincided with having to retire from work & greatly decreased mobility. The steroids (which I've been on for years) are definitely a contributing factor though - especially the round face I've developed over the last few years.

I'm on a higher dose of Pred than I used to be on but happy to take it as it improves the quality of my life. Perhaps because I'm older I don't worry so much about how I look now (note I said I "don't worry" not "don't care" !!) If this had happened in the first few years after I was diagnosed when I was younger (& a lot slimmer !!) I'm sure it would have bothered me a lot more than it does now.

Why not ask to see your Rheumatologist & talk over the pros & cons with them ? Good luck Ava but just remember true beauty is something INTERNAL not the outside packaging. I know my family & friends love me for what's inside. Of course, we all want to look as good as we can &, when I'm well enough, I always make an effort but looks aren't the be all & end all. People who judge others by how they look are shallow & ignorant. Take care & keep your chin up 🤗

[ava97 in reply to Carolyn1063]

yes I know this beauty depends on behaviour or internal manner but I am young just 19..hope u understand my problem...I used to be slim and my face was normal in size.I used to work hard..my camera facce was cute and beautiful..I know you will think me what I am saying its ridiculous...but carolyn its true..I used to be a girl who likes to smile and take selfi but now I just don't do all of this.I know I will get used of this but I m too young to accept this mayb..

[Carolyn1063 in reply to ava97]

I understand you're very young Ava & as I said I think the way I do because I'm older. Am sure I'd be same as you if I was your age. Think best thing would be to talk all this over with your consultant. They may have an alternative to the steroids but you need to know exactly what's going on first. Your Rheumatologist also needs to know exactly how you feel & how it's impacting on your life. Hope you get the help you need so you can get on with living your life. Will keep you in my prayers my friend

[ava97 in reply to Carolyn1063]

yes Carolyn I will talk about this with my gp.thanks a lot for your warmly behaviour.I was totally depressed but after talking to you I feel relief. pray for me that I can live well with this disease.Take care my friend.

[Hidden]

The idea is usually to prescribe a disease modifying antirheumatic drug that will replace steroids after a few months. Are you on one of these drugs yet? Examples are drugs such as Hydroxichloraquine and Methotrexate.

The weight gain from steroids can impact negatively on more things than the way we look. So, at 19, I think you are entirely right to want to get off them. The long term risks should and will be be factored in by your rheumatologist but I would push hard to replace steroids with something that modifies your Lupus for the long term. Swollen hands could be the rheumatic part of Lupus. You should report this to your GP soon but explain how worried you are by the impact steroids are having on your confidence. I'm sure they will be sympathetic and perhaps test you for Cushings Syndrome too. X

[ava97 in reply to Hidden]

thanks for your suggestion..yes I am on 10mg methotrexate every week on sunday and takinh 200 mg hydroxychloraquine.the main problem is in my puffy face.I have gained weight but that doesn't make me worried cause no one can notice the gain too much but the problem is that whenever someone looks me direct ask me either I am greatly sick or something else??cause of my moon face.My face doesn't match with my body weight hope u undestand what I am saying.my face looks like I m a great fatty but my body weights is simple so I am on a great tense how to cope.sometimes I really feel alone and think mayb there is no cure for lupus so there is no hope.

[misty14]

Hi Ava

Sorry to read your struggling with problems with your hands. It might be good to talk to your GP about going to physio or O. T. They can help with exercises to stretch tendons and stop them going misshapen. This will help any pain and save need for extra steroids. I've had similar help recently and also splints were recommended for when I'm doing things.

There is also a young lupus group that if you email Paul Howard or look on the lupus uk website , you can get info about if you'd like to be in touch with other youngsters?.

Hope I've helped and your better soon. Keep us posted. X

[ava97 in reply to misty14]

thanks misty..sure I will contact with paul to be with young lupus group.thank for your suggestion bt can u tell me why this fingers get swollen and feel tight??is it lupus flare??or something else??I don't know the main reason.I feel energyless also so should I take excercise???what types of excercise I should do??

[Hidden in reply to ava97]

I really feel for you. My fingers were very painful, swollen and tight for a while when I was diagnosed with RA. It turned out not to be RA but Sjögren's for me. I still have tight hands now but not the swelling or pain. All these rheumatic diseases can cause synovial swelling in hands and feet plus elsewhere too and Lupus is no exception - although if I were you I'd get this checked out by your rheum asap in case the cause is something else.

Re the moon face - I do understand. I hated it as well when I was on steroids for a while at your age for eczema, skin allergies and alopecia. I hope they could increase your dose of methotrexate now perhaps and allow you to drop you steroid dose very slowly rather than raise it. Definitely speak to your medical team about the moon face and how it makes you feel. This will be an important consideration for your rheumatologist when making decisions about the next stages in your treatment.

I hope you do take up Misty's suggestion of physio and occupational therapy as well as joining the Lupus UK young people's group. TX

[misty14 in reply to ava97]

Hi Ava

Paul may well see your post and my reply and contact you re the young group. They may also have a factsheet about exercise which could help you.

It could be you are flaring specially as your extra tired as well. Are you due to see your consultant?. Might be a good idea.

I suggested physio etc because I saw that you mentioned steroids and were worried about a moon face.!. I get that and it's horrid isn't it?. The lower you can keep the dose the less likely you will get steroid side effects!. What can be helpful is a short course of a higher dose just to improve flare symptoms with minimal risk, your consultant might suggest this.

I hope your taking a calcium tablet daily for your bones, that will help their strength!. It's tough being young with a difficult illness!. I too was young when mine first started but I'm middle aged now and still here!. You've got a lot of living to do and you'll achieve it. You might like to watch out for loulamb's posts because she is young like you and you might like to chat with her.

Hope you have a better week and get some help. X

[ava97 in reply to misty14]

thanks misty.I will discuss about physio with my doctor but he didn't let me see another doctor.I am treating by him in his chamber not a hospital andnd my famuly listens to him.but your idea is great talking to young lupus person is a great helpful to me.cause I want to be active and also slim.I will chat with loulambs...tke cre misty really thnk u a lot

[misty14 in reply to ava97]

Hi again Ava

Glad I've helped you. I meant to say about exercising that you have to be careful if your flaring. Maybe do just a gentle walk. Best to take health professionals advice about what to do. As to keeping slim I'm on daily steroids like you and I limit things like chips, roast potatoes, pizza and biscuits etc carbs basically and eat more fruit and vegetables . I have treat days so that I don't go without the above. I also have cut my portion size down and I do keep control of my weight. It's not easy as I can't be as active as I'd like , like you but it's doable!.Take care. X

[1sam in reply to ava97]

Only you fingers are swollen? How are your feet and ankles? Do your shoes fit as usual?

Swelling/oedema due to Lupus is always a possibility but fluid retention is another that comes to my mind. Both have happened to me. A GP could tell one from the other and maybe modify your medication if necessary, you just need to push the issue. Good luck !

Sam

[ava97]

thanks twitchytoes...I will consult about this with my gp but he doesn't seem to listen to me he said u have to take cre of your internal organ don't worry about anything.they will be ok but don't know.when things will be ok..but it kills me inside I am depressed cause if I was atleast 30 and I was diagoniskng by this disease I have no problem but now I am too young so many question comes infront off me just for having moon face which doesn't match with my body.

[Hidden]

Mine do the exact same mainly when I have been out in the cold they get stiff and swollen so that maybe from the raynauds

[ava97 in reply to Hidden]

is it raynauds?? I don't know mine gets tight and swollen when I get up from sleep also.

[Hidden in reply to ava97]

Maybe you should speak to your rhumy. Mine go like that when it's cold

[Meganx3]

Hi. I have exactly the same problems and on 10mg since last May. My fingets are swollen too. My dr told me its the steroids, fat accumulation/water retention. I am struggling to try to not put on any more weight. I hate myself and the way i look. My fingers ache too. Please dont worry. Go and see your doctor for advice. Hope you feel better soon.

[ava97 in reply to Meganx3]

but I don't know its due to steroids cause my doctor wants to increase my steroids if that happen he allready told me about this that's the main problem.I don't want to increase my steroids

[Hidden in reply to ava97]

Your doctor will examine your hands and should be able to tell whether the swelling in your hands is due to steroids or Lupus.

I have same problem with tightness and pain in my hands when I wake and have mild Raynauds and other problems but nothing visible now. I'm not on steroids so it can't be this with me, but they don't look swollen. I think it's tendinitis in my case as part of the Sjogrens. It could be the steroids are causing this for you or it could be your Lupus is causing synovial swelling.

Either way I feel you need to speak to a doctor who is kind and patient and can explain to you exactly why you have to continue taking steroids when you are also on Methotrexate. Some people have to take steroids all their lives, but hopefully the Methotrexate and Hydroxichloraquine will do their job so that you can slowly taper off steroids quite soon. That's why you are taking two disease modifying drugs already - so they can modify your Lupus and prevent organ damage from occurring all by themselves.

Try to learn as much as you can about Lupus so that you can have a good conversation about this with your rheumy. You are not as alone as you feel. There are many others your age with Lupus and RA and soon you should be able to offer each other advice and support. Take care x

[LouLamb]

My hands are constantly swollen . I could never see it until my mum and doctor told me they were . I've just gotten use to have fat fingers

[ava97 in reply to LouLamb]

but how you survive with swollen...tight fingers??I cant do anything.I feel llike helpless or feeling I will be like this all of my life.I just don't understamd

[Hidden]

Ava don't panic please - you hopefully, almost certainly won't have to live with this happening to your hands for the rest of your life. You are still very young and things will keep changing for you as your hormones shift and many symptoms will come and they will go. This has certainly been my experience so far and I'm 54 with a son your age. I've lived with various autoimmune symptoms all my life. I used to have bald patches, now I don't. I used to have eczema everywhere. No I don't. But I do have other rubbish to contend with.

These diseases are usually cyclic and how well you do will depend on how well you manage your Lupus yourself through attitude of mind, through what you eat and drink, what you choose to do and how well you adapt to living with a long term condition. Also much will depend on how well supported you are by your family, friends and your rheumatology team. But it's a two way thing. If you despair about a symptom then you are less likely to overcome it. The mind is a powerful tool. Look at Stephen Hawkins and what he has overcome over the years through mind over matter?

The outcome for many of us with autoimmunity is not usually about things just getting steadily worse. It's about how we turn the lemons we land into lemonade. Your youth is the reason your symptoms will almost certainly change - it's your strength and a reason to stay positive - because you can learn ways to deal with things as they come and go. Treatments change too as medical science progresses. Older people like me find it harder to adapt because old habits die hard! We are more resigned to stuff like moon faces because we know we are less likely to be around for the new treatments or even a cure. It's not just because we don't care as much about what we look like!

See your doctor about your hands - it may be the steroids and they will probably know just by looking at and feeling them.

[ava97 in reply to Hidden]

yeah I know I will be able to manage if I wish to but sometimes the pain makes me tired and disappointed.but I will talk baout this with my doctor.I am on antibiotic also.cause I have urine infection.I am going to vist him next Saturday.

Hope so your word will turn true and I am going to live well with this disease

[Hidden in reply to ava97]

I know - it's really tough going for you. But just remember that you aren't alone and that your glass is half full not half empty. Pain in hands is horrible I know. But things do just change as I say. Or we adapt to them so they don't notice so much after a while. Lupus and other diseases are all lousy but they can be well managed and prospects aren't nearly as awful as they used to be. Talk to your gp about alternatives to steroids and good pain relief. Hope the UTI clears up very soon, that will certainly be making you feel very low too. Xx