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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi everyone, just some advice please, when I see the consultant again on Friday should I question the fact that last Friday he told me that if it is Sjogren's as the primary that its ok as I'm already on the right meds. I have been on mtx for a year now, and if anything I am worse. As I felt so ill last week and he could see I had trouble walking, I wasn't focussed enough to listen properly. I just dont know what else can be done, as I assume now that I wont be eligable for the anti-TNF if the RA is secondary. I am feeling very down at the moment, its just not like me, but I am finding myself in tears over nothing, and I know its due to the pain and worrying that this is how it will always be now. I know many people are far worse than me, but I think they are at least given treatments to try. What do I do now? If I stop work due to this, which it looks like I will have to, as its only the pred that eases it, and that I know will have to stop it at some point again. Then what?? I just feel that they dont listen and dont understand how hard it is to care for 2 babies all day when you are in pain. Sorry to rant on, but I have just had enough nowBARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Barbara,
I think you should ask about anti-tnfs. I don't know what they do if the RA is secondary, I would have thought it still needs treatment!
Anyway, there's no harm in asking about them, you have tried 3 DMARDs so fit the criteria there.
What are your blood results like, is the CRP still high?
I hope you get some positive action on Friday, tell him exactly how ill you are feeling.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Hi Barbara,
I am not surprised you're teary and emotional, the pain and the feeling you're not being heard and helped is enough to reduce anyone to weeping. It is so very depressing living in such pain and not knowing what can be done.
You have every reason to be listened to properly- so explain exactly how you feel and be very direct.
Bring with you a list of everything (no matter how small) you would like to ask.
It does sound as if the RA is very active and so i would ask for either a second opinion or total reassurance that this IS primary Sjorgen's and secondary RA as I was not aware S's could cause such rises in inflammation and sore joints?
You should still ask about the anti-tnfs if that is what you want.
I am praying for you and here whenever you want to chat.
Love,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi Barbara genlte hugs,postive prayers thoguth for you to be HEARD and offered new treatments that may just be the thing you need . as you may know my lupus is secondary to my RA and they said i have to have medication that works for both,so if they said your on right meds fine but as not working that needs be looked into. i know that when you in such pain as last week and now having a brief precise list of what want ask will help alot,i have do it all time because being pain on pain meds i find i can get side tracked forget what want ask and unable focus as well. meanwhile look into whats used for sjorgrens syndrome and i do so hope that clinic appointment comes threw asap,that will make it easier for rheumy to know which is primary. i know quite few ladies with primary ra and another aut immune issue and alot other way round all i spoken to are given meds that work for both. for me mine was mtx and planequil,here anytime need chat and no shame feeling low you had shock 2 months in row first fibro then this so that along with so much pain,not surpirsing. that will ease i have faith it will. much lv melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Hi Barbara - there is lots of excellent info on SS on the Sjogrens World website. I was told last year that my diagnosis was SS and put on plaquenil. The symptoms of fatigue, joint pain etc are very similar to RA. However, it takes 2nd place to RA, in that anything else, eg Lupus, RA is primary. At least that is what I was told when I was diagnosed with RA this Feb. and reading seems to back this up.
You certainly need your meds reviewed though as you are in so much pain. I would have thought adding another DMARD to MTX would be a good place to start. Try to read up a little before you go to the appointment so you can ask from a more informed POV. There are plenty people on anti-TNF for Primary SS so I would have thought it makes your case stronger if both diseases are not sufficiently controlled at the moment.
Good luck with your appointment - will be waiting to hear how you get on XX Ailsa
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Thank you for all the replies, it helps so much.
Doreen - I have no idea what my CRP is at the moment, as I only have had bloods done once a month, and to be honest I hadnt been for 6 weeks due to the little ones and work. Plus they dont always fill in the mtx booklet. Yes, I have been on 3 DMARDs so obviously dont work.
Amanda - I also have read that the joint pains in Sjogren's rarely needs mtx etc. and that it is controlled by pain meds alone. I have looked on around 3 sites who all say the same thing, that it mainly causes dry mouth skin and eyes etc and not so much pain. I don't really want to go down the anti -TNF but I need to do something, and to be listened to. Thank you for the prayers and for being there, much love x
Melly - I just feel that they never really listen, he often is writing as I speak, and dont feel that he is actually hearing what I say. He only noticed this time as I couldn't walk into the room without holding onto the furniture. Will definitely take a list, I do definitely get sidetracked!! he asks questions and I lose my train of thought. Thank you for your support, I know you are having a bad time too at the moment, its so kind of you to send prayers and love, same back to you x
Ailsa, - I haven't actually been on the Sjogren's World website, but have been on others, and they all seem to say the same thing, that the pain is not very severe with the disease, and is usually accompanied by other AI illnesses. I dont understand how it can just be Sjogren's that is causing all this pain, and has been for a year now. I have been on 3 DMARD's already Ailsa, so there's no point in trying anymore, I had mtx from last July, hydroxy from February, and then sulfa from April, which I had to come off due to rashes and tummy problems.
Thank you all for the advice, I am going to try to be stronger and to tell him straight this time!! He was surprised that I had even heard of Sjogren's and asked me how I knew. I replied that I am interesed in AI diseases and looked it up, he just smiled. Will keep you all informed of the visit. BARBARA
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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aww i know that feeling,feel not being listened to,i find they write as speak so as to remember how your doing it can be unerving,after so many years under consultants im finding the brief list makes me more focused hope it helps you lots. your welcome.ahh right sjogrens is about pain relief hadnt looked it up even though tested for it. crp should be done along with esr,full blood count.have they checked vitamin d levels ,anemia etc. he is lovely consultant really knowledgable and caring to i felt listended to despite writing as talked,ohh yes be prepared questions he will ask alot thats really good helps him know whats happening to help you more. take care. melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 1,035
Location: in a house
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Hi Barbara This is me .Maybe good to tell you . 1st Well if it was me .I would give up work because then you can rest less pain and can sleep if need be .I would defaltly do that and sort out inconpasty benfit . 2ND I WOULD NOT WORRIE . AND NOT LOOK ANYTHING MORE UP ON THE NET . RING THE SORJGINS HELP LINE if need be . Just let the docs do there job as they are the experts and it may be they are still checking you out and it may take time or may be they check 2/3 times to make sure . And stop worrieing it may be now anti t fs may not suit but something will .This will make you 10 times worse worring do something ralaxing insead . And think about work as i am so much better not working .Just getting up earley does me in christine The chocolate eating housewife ...The washer woman .....naughty lady
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 90
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Dear Barbara,
I just want to send you my warmest thoughts. I cannot begin to imagine, how hard it must be to have this disease and at the same time try to work and look after 2 small children.
Your doctor also does not seem to give you his full attention. I hate doctors, who do not look up and keep scribbling, while you are talking to them. What bad behaviour!
I do hope, you will soon get some relief. I cannot advise you on the Sjogren, as I don`t suffer from that.
Merete xxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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Hi Barbara
I'm sorry you're having a bad time, it must be very confusing for you. I can't think for a moment the docs won't try you on other meds. You must keep pressing them until you get satisfaction.
Also, what you say about this is how it's going to be, we all think that at some point, but I'm sure once you're on drugs that suit you, you'll start to feel a lot better.
Lyn
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Dear Barbara,
I am only repeating what my Aunt has told me but this may help. She has had Sjogren's for years and years along with OA and Fibro. She said to me she definitely had never heard it can cause inflammation/joint pain at all and all that side of things comes from her OA etc..
She has recently been give some plasma/serum tears which have helped far more than the over the counter tear drops but then she's in the USA!
Love always,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Barbara, I`m so sorry you are still in such a lot of pain, and struggling. As others have suggested, write a list of all your questions, and points you want to raise, and take it with you to your appointment. Better still, is there someone who can go with you? At my previous hospital my husband used to come in, and prompt from the list I`d given him. Whether the RA is secondary or not - and I`ve no idea if that`s right - it is still RA, still causing you major problems, and still needs sorting. Do please ask about new meds if the ones you are on have not helped. Take care, Kathleen x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Thank you all so much, its so kind of you all to help me so much.
Melly - I have no idea if vitimin d levels or aneimia tests done, never thought to ask about it, I will put this on my list now!! He is a good consultant, he has a kind manner, he kept saying to me poor you all the time he was examining me, so I know he means well, but he needs to listen more.
Chrissie - You are right!!! I know you are!!! I just cant accept that I am unable to do it all, and just keep pushing myself. My worry about not working is that my husband is already on DLA for his illnesses, and that it may be hard for me to get benefits if I just give up work. I know looking up information isnt always helpful, I just wanted to know if it was right that all this pain and swelling etc was from Sjogren's, which apparently its not!! excellent idea to ring the help line, will check what their opening hours are (only just finished work at six tonight) I shall have my list, and listen to what he suggests and recommends, thank you Chrissie x
Merette - Thanks for your warm wishes, it is hard to keep going, so I really need to know what I am dealing with. Hopefully this week I will be more focussed and get more information.
Lyn - I know that what you are saying is that no one knows how their illness will be, its just that I had hoped after a year I would have some kind of relief from the illness by now, when in fact, its worse than a year ago. I have prayed for the right drugs, but so far to no avail, I just dont know if I can have faith in the doctors anymore, he told me months ago we can sort this out, and still its the same. Thanks you for the support x
Amanda, - Thank you for the information from your aunt, obviously in the US they give more advice and help than here!! It does seem that there shouldnt be that much pain from Sjogren's, so now what do I do? Will go through my list and hope I can get my point across. Much love x
Kathleen - I dont have anyone to come with me really, as Roy is not well himself and has his appt tomorrow for Rheumy and anti-coagulation. Georgia can look after Amelie for me on Friday so I dont have to take her, and every one else is working. I know what you mean, it will still be RA, unless he is now saying I dont have RA at all!! I know I do need new meds, thats for sure!! thank you, its so good to have such good friends x xBARBARA
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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aww gentle hugs,thats good georgia able watch ameliea for you,aww wish roy well from me hope his ra appointment goes well also. be thinking of you friday and yes i wish hed listen more maybe this time he will its all about building up a relationship of trust isnt it. with some takes longer ohh yes very kind reminds me my 1st conusltant. take care. lv melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Barbara
I can't add anymore than whats already been said, I agree with what Kathleen said about it's still RA so it needs to be treated. Do take a list in with you, tell him when you go in that you have a list and don't go until you have asked all of your questions and you understand what he said.
Be thinking of you on Friday.
Take care
Paula x x
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 1,035
Location: in a house
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me again . I think careing for 2 little kids i would be in pain .And all the worrieing can give you pain ?? maybe go to job centre i think its job centre plus they gave me good adivse in fact said well you have worked 37 years don,t worrie about working you have this and that meaning r.a etc .You have done your stint .Allways the shaw trust ?? if me i would just take your name of the S.S list and give the mums 2/3 weeks notice there promlem not yours .then sort out something lighter .No one will let you stave .It will come right in the end .The Mums will tell you all sorts but no esuse if you have took name of list . Ha ha i did that cos they would not budge . I think i heard there is joint pain with it but not sure .You could have a mixture of things like me ? ohh they told me i might not have r.a as well as i am a mixture of things then said yes you have but its mild going going gone Christine The chocolate eating housewife ...The washer woman .....naughty lady
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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hi
i dont know what to say to encourage you barbara because I just know how incredbily tough doing things with children is.
the thoughts that come to me is a access to work scheme that should support you with your job- whatever it is.
Also, the anti tnfs are offered to people who have had 2 dmards and failed them and still have active disease (or couldnt tollerate them). It is so hard to push for things when you are sick.
MY red boots are rather dusty but still able to give some welly as needed.....!
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Oh Barbara - so sorry to hear this - I have been in exactly the same situation before - and tried to carry on just like you. The consultant was just the same and had made his mind up what was wrong and how it affected me before I even spoke. I ended up taking a written statement/list of things I needed to say the next time I saw him. He tried to put me off listing everything but but I stuck to my guns and asked all the questions. It might help to do this when you see him again. When is the next appointment? I hope it's not too long. Thinking of you.
Julie
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Rank: Advanced Member
Groups: Registered
Joined: 1/7/2010
Posts: 44
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Hi so sorry you are in such pain & having to battle with your situation when you are so ill. I kind of went through a similar situation. Ill for 7 yrs & my RA team seemed not to care. There is nothing worse than not feeling as though They are listening. eg. I passed the criteria for ant tnf but at that point they said my problems were down to Fibromyalgia.FOr some reason perhaps money,They would,nt give it to me. It took me 2yrs to get a sacond opiniom & now I have a great consultant who has put me on anti tnf & even after a short time i am feeling better & I now have hope & confidance that this guy willcare for me. From the sound of your inflamation & terrible pain It sounds as though your RA is the primary complaint.I would,t hesitate to see another consultant for a 2nd opinion. your GP can sort it & its perfectly acceptable. it shouldn,t upset your present cons.Sometimes its worth fighting hard ,but very difficult with all your doing when your in such pain. Have you got someone to go in with you when you see the cons. It can help as they can remember the things you forget, & gives you a bit of welly power. I do hope thing improve thinking of you take care Rosexx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hii everyone, have my list started for tomorrow. Did arrange a second opinion once before, but its so hard to travel to the hospital, as its by tube and lots of changes and loads of stairs, not even escalators at some of the old stations, and I just cant manage it. I am hoping with the list he will understand more of what I am trying to explain. I do understand it can take a long time to find the right combination of drugs, but they cant even decide which illness I have !! I have questioned whether working is sensible or not, and he has just said that once the meds are right I should find it much easier, that sounds great in theory, but in practice its almost killing me while I do the waiting!! Tomorrow I am just going to say that I would rather he said that its still going to be some time until things get better, then I can make a firm decision. BARBARA
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