I made it to Monday! Thank you everyone!

[Maya23]

Just wanted to make sure that everyone saw this :

THANK YOU SO MUCH everyone for your support over the past few days, I made it to Monday!

So it turns out that steroids are NOT FOR ME! The phone lines were down for the GP this morning and we were phoning and phoning, but thankfully my husband had taken the day off and he drive me to the GP and we got seen straight away THANK GOODNESS!! What a relief to get help. I think he used the words "unmitigated disaster" as I sat there shaking, sweating and wheezing in his chair ... I could barely talk so I handed him the list of side effects with the bits underlined that I was experiencing : "feeling depressed, including thinking about suicide, feeling high (mania) or moods that go up and down. Feeling anxious, having problems sleeping, difficulty in thinking or being confused, frightening thoughts, changing how you act, having feelings of being alone.." all of those and more.

He said that he'd never seen someone with such extreme reaction to steroids before!! And I was only on 10mg!! I didn't even get any relief from the lupus symptoms either!!

I'm taking 7.5mg today, 5 tomorrow, then 2.5 and then I'm off them by Thursday.. so I'm not out of the woods yet but there is light at the end of the tunnel. At least I'm not alone today.

Thank you everyone for your support, it's been a life-line.

[MandieR]

you poor love!!!!!

its always scary when you read the worst side effects and it always worries me too, but we all live in hope that maybe the next medication prescribed will actually be the one that takes our pain away xxx

[Melinda]

We are always caught between a rock and a hard place with illness and medications. So glad you're feeling a bit better. Take care.xx

[NickyQ in reply to Melinda]

That is so very true :/

[Hidden]

WELL DONE DRYAD! You did it. Big hug to you and to your compassionate caring husband. He is a keeper indeed.

Be certain that in the future on all medical forms to list Prednisone under ALLERGIES / medications allergic to. It is absolutely imperative that you avoid it. It is a Rx that is NOT for you.

There are other options Dryad. A treatment protocol specifically for you will be found.

May you find a better path of lupus management very soon.

Take care.

[mstr]

Yay, I echo all of the above, so pleased you made it and you have been listened too. I hope the week continues to go well for you. Also you have an aim.......to make that swim that we have been talking about. Take care Marion xx

[Hidden]

Thats brilliant im so happy for you and you must feel relieved that you can now start to feel well again,side effects on powerful drugs can be horrendous for some people as i too can suffer side effects.

i wish you well and remember if you need us we are always here.

take care

[Maya23]

Thank you all so much for your support and kind words. I am so relieved to be weaning off them. I cried with relief as I walked out of the doc's today, I'm so lucky to have an lovely GP and a lovely husband.

[Lg1968]

Glad you're feeling more positive. Keep strong for the children and your husband and remember to talk to someone when your mood gets this low again. Sometimes expressing these feelings is enough to make them go away. Did the gp give you anything for depression or offer you any councelling as I think it would help. Sending you hugs x

[Clairebear]

Well done. So glad to here you got something sorted. Wishing you the best for the next few days xx

[tiredmum]

You brave thing, at least there is light at the end of the tunnel now. x

[Maya23]

Thank you The GP said it was too early to prescribe me anything else, but I'll be going back when I'm off the steroids. I've had counselling many times before, it always helps but then the sessions end and I seem to need something regularly all the time!! Having this forum helps a lot though, to feel listened to. I've had anti-depressants before too and I would rather not have them if possible... but I accept that I might need them for a little while. I am still concerned that the lupus will be left untreated and I'm still worried about the burning pains in my arms , I think it's joints + tendon + muscle + nerve pain. But I have to trust that I don't know that answers yet but that I will do one day. One day at a time.

[loopy-lou in reply to Maya23]

Hope you feel better as the steroids are reduced. Take one thing at a time. Keep positive and take care x

[flutterby]

((hugs)) am glad that this are looking brighter, it must have been dreadfull, best wishes for better days ahead xx

[Hidden]

It is Thursday Dryad!

Prednisone begone! You lucky duck you. Well done.

One hurdle done. Tomorrow is a new day with new hope. It will get sorted.

Be the dryad Dryad. Root yourself to all positive thought. I can. I will. I am. I love. My loved ones matter. I matter. Etc...

May your healing path continue forward. Take care of yourself.

[Maya23]

Thank you x I made it to the local lupus support group today -so good to get out of the house and talk to some lovely people face to face. They were helpful and supportive. Friends have rallied around and are cheering me up with cups of tea and a chat. This is giving me hope and I'm feeling the love. Life is starting to feel a bit more hopeful. Thanks so much for all your kind words and support, it's much appreciated.

[tintin49]

lucky you dryad to have so much support and love surrounding you. my immedeiate family dont know about my lupus and my gp apointment is today. i will be asking for some real help and support from her but i know i will not get it but i will go in positive and pray she will listen and support me. feeling very depressed with the steroids and i think that it is wearing off now so feel the pain like hell returning.

[Maya23 in reply to tintin49]

How did your GP appointment go? It takes time to build support and it's not been an easy journey for me either. Before I was diagnosed, my immediate family (husband) didn't understand why I was always trying to lay down and was irritated when his dinner wasn't ready when he got home from work. When I was diagnosed I told him and showed him the leaflet I was given and he started to 'get it' a bit more, and started trying to help me manage the illness. This was a fantastic first step in building support in my life. My mum struggles to understand, so he's suggested she watch the lupus UK DVD. I have gradually talked to my friends about lupus and some have been brilliant -others I have distanced myself from as they weren't understanding. I found out about my local lupus support group and started meeting them, there are many all over the UK -you might be able to find out more on this forum. I would urge you to try talking to your immediate family about lupus and give them some leaflets from lupus UK. You need support. The steroids can have awful side effects like depression (as if it isn't bad enough being ill in the first place!) so I hope you talked about this with your GP and that they listened to you. All the best tintin49 xx

[tintin49]

hi dryad thanks for your support and kind words. my gp did not agree with my diagnosis origionally and i need a second opinion so asked if i can be referred to the lupus hospital in london she did not feel it was necesary. she was shocked at how ill i am now looking and feeling and wanted to admit me to hospital but i dont want to go as i have an appointment with my rheumy in a week. need to try and stay away from the meds as they dont agree with me at all.

strangeley she seemed to know a lot more about lupsu than she did 3 months ago i suspect she has been reading up on it and may have spoken to the hosital.

i want to get my case reassed by anather doctor though as i dont want to take drugs that are quite strong without a reason.

my family dont know just a few freinds. i have 3 daughters and no partner but i ma close to my children. i know they will be devastaed if they knew so i want to spare them as much as i can. i would like to join a lupus group as most people are not familiar with lupus and its frustrating. oddly i fel that my gp is taking my illness more seriously and could well be my allie after all we shall see.

thanks agin dryad xx

[Maya23 in reply to tintin49]

That's really good news that you have got your GP on your side at last. I reckon you are right- she's been doing a lot of reading up about Lupus! I would encourage you to talk to your daughters about lupus, how old are they? Obviously don't scare a younger child with the worst of the facts but if they are in their teens or older, they may well be able to support you. I think they might feel upset if you got so unwell and they didn't know what was wrong with you, and then they found out later that you have been keeping the diagnosis a secret. You must be ill if your GP wants to admit you to hospital, I understand you not wanting to take the drugs unnecessary but it might be essential that you get some treatment. I hate taking the drugs too, and always put them off for as long as possible. Are you taking any anti-inflam painkillers? That's what the Rheumatologist wants me to try next and I'm putting it off - I do take the odd one or two in a day but he wants me to double the dose (1000mg per day) and do this for 2 weeks or so. I think this sounds a lot more doable than steroids (yuck!) Have you tried taking Plaquanil at all? When I was really depressed on steroids and wanted to take my own life, the doctor I spoke to reassured me that there were other drug options to try and that I wasn't at the end of the road -that they just hadn't got my treatment right yet. This helped a lot to know there were other things to try and that I may end up being like other people in my lupus support group who no longer feel like lupus dominates their lives, that it is merely in the background. It's nice to hold onto that hope. All the best xxxx

[tintin49]

thanks dryad whart a lovely post. its hard feeling bad but i am frightened of the drugs. planequil does not agree with me at alland i dont want to take any more steroids even though they take the edge off the pain. i dont think i am a very good patient and lupus is so unpredictable that does not help. i dont really want too many people knowing about my dx as i feel that people judge so much regarding illnesses like lupus and to put up with unkind comments when you feel so ill would be the last straw for me. what are anti-inflammatory drugs called dryad and do you know if the side effects are like?

thanks again

[Maya23 in reply to tintin49]

I take Naproxen, I take 250mg up to 3 times a day. I find them quite good. The side effects are increased brain fog and dizziness. And they can be hard on your digestion too. I've been given 500mg twice a day but I haven't taken any yet, as these are hard on the stomach so I have to take pills that protect the stomach lining. Sounds rather unappealing! So as usual I'm putting off taking them.

I understand how people misunderstand lupus and it can be really tough. However I have found it useful to tell people so that they understand why I'm not going to do certain things that they ask me to do (eg. run a stall in the sunshine at school fair). And also its good to be able to ask people for help. But I guess we all have different ways of coping and that's fine, we have to find what works best for us and stick with it.

[tintin49]

was on naproxen but my kidney function fell while on it quite sharply and only after a couple of weeks so rheumy took me off it.this did help with the pain though. i think you are right about people knowing but i still think people can be either good or unsympathetic. thats life i suppose. thanks for your reply dryad