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Rank: Advanced Member  Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Hello to all of you. I look forward to your support and advice when my worries and concerns get the better of me, and I hope in turn to be able to support someone else in return. I was initially diagnosed with RA at the end of June 2012. During the consultation the consultant mentioned that there were some 'noises' in my lungs - a few tests later and I've had it confirmed that I have Pulmonary Fibroses with a questionable heart problem as well. I've had two HRCT scans, and on Monday I am going for lung function studies, an echocardiogram and then a further appointment with the rheumatologist Three appointments on one day!! I proudly say I'm keeping the hospital going single handedly  A couple of weeks after getting the RA diagnoses I went on holiday with a friend, my husband stayed home as our dog is now too old to go into kennels. The day before the holiday ended I got a phone call to say my husband had had a stroke, I was devastated. At the moment life is really hard, my own health has been pushed to one side as my husband struggles with my support to learn to speak, understand and generally improve his cognitive function again. Speech and language support is non existent, in fact it is laughable care. You read about how stroke patients must have full on care in order to improve - but there's none there!!  My hand and feet are painful most days, also I have had bilateral greater trochanteric pain which I assume is associated with RA. I was initially started on Sulphasalazine and Hydrochlorquine but six weeks ago had to stop the Sulpha as the side effects were worse than the condition. Although the pain was reducing on the compo regime, it is now quite bad again and I'm looking forward to Monday hoping they might start me on something else. I understand that I cannot have Methotrexate and possibily Leflunomide (?spelling) due to Interstitial Lung disease so have no idea what they might try next - does anyone else know? If I sound low it's because I am, I'm a bit overwhelmed with all that's happened. In June I was a relatively healthy woman who took no medication whatsoever. Now I'm tired, low in mood, burdened, lonely because I cannot share anything with my husband - he doesn't remember what I tell him! I hope this is not too much to start with, I don't really expect anything from anyone I just joined the NRAS to understand more fully the condition, it's progress, management, the extra-articular symptoms specifically related to me, and to read how you all cope , because sharing is halving a problem.
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Rank: Advanced Member  Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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Welcome Gogs to you. So sorry to read about everything going on with you & your husband. I have not experienced things that you have with lungs/heart. You have come to the right place for help, advice, support. We all pull together on nras and help each other with our experiences or write about things like what books we like reading to relax, gadgets to help us out. I've had ra since 2007 after having my daughter, a learning curb being a mum and ra! Sense of humour helps!! [Lol] I started on sulfaz then hydro, then methtrix, and leth (not good at spelling). Three appointments on the same day takes some beating!! I got hospital twice, one day after another in a few weeks, one for knee surgery with orth surgeon to see what he wants to do and rheumy the following day. You say you have a dog, what dog do you have? We have 2 king charles cavaliers, Poppy nearly 3 ruby colour, and charlie 3 and a bit tri-colour. All a bit mad here, poppy in season.......she likes to jump on charlies back (she bosses him around)!!!! He is not able to go near her or she tells him off!! The rest of the time is a quiet and easy going with her mate! Good luck with your appointments. Let us all know who they go for you. Take care, Jane Xxx
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Rank: Advanced Member  Groups: Registered
Joined: 5/7/2012 Posts: 149 Location: S E London
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Hi Gogs,
I'm sorry you have so much on your plate at the moment, bad enough sorting your RA out but with your husband having been taken ill too, must be a big worry for you.
I was diagnosed earlier this year, but haven't had any lung problems so I can't help with that - sorry. My husband suffers from Parkinson's Disease, he was diagnosed 5 years ago when he was only 45, so that was a shock for us, so I know how you feel. My Mum had a stroke when I was only 11 (way back in the 70's) in those days there wasn't the rush to get stroke patients to hospital like there is now, in fact they didn't take her till the day after she had had the stroke! I wish your husband all the best, hopefully he can keep strong and fight his way back to fitness.
Three appointments in one day, there's gonna be a lot of info for you to take in, good luck with them, let us know how you get on.
I'm sure someone will have some idea of what meds could be possible for you, hopefully the hospital will get you started on something quickly.
Anyway, wishing you and your husband all the best.
Mary x
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Rank: Advanced Member  Groups: Registered
Joined: 12/19/2009 Posts: 182 Location: kilwinning north ayrshire
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welcome gogs, what a lot you have on your plate at moment, i hope you find some relief with what they prescribe for your RA, im glad you found NRAS its a great page where you can moan or talk about what is happening in your life we are all here and support each other so please keep posting i hope you are getting some support with helping your husband back to health, i am on sulfzine at the moment i tried MTX but had to come of it its just finding what works for you please keep posting sometime its just good to put your feelings on here. take care thinking of you xxxxx sylvia
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Gogs
So sorry to read and what life's thrown at you these last few months, can't even begin to imagine what it must be like for you.
Just want to say that here there is always a friendly ear for you to talk to and understand your fears.
Mary's replied that she understands what it's like with her husband having health issues, so I hope you don't feel too much alone with it all.
Hope something positive comes out of Mondays appointment, let us know what happens.
Sending you a gentle ((((hug))))
Paula
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Hi Gogs. Sorry to hear that you have so many challenges to face at the moment. I just want to say that for many people, things get easier after the first year of RA, especially once you get established with a drug regime that works for you. It sounds like you have a lot to come to terms with and we are here to hold your hand if it helps and support you through this difficult time.
I'm Naomi, aged 48, and I was diagnosed in September 2011 after becoming very ill in the Spring of that year. I belong to this group and a couple of Facebook RA support groups which helps to stop me feeling isolated.
Do ask any questions that you need to. There are some very experienced RAers on here to answer your questions. There is a lot for you to take on board at the moment. I don't know about you but I have found that it helps to get armed with lots of knowledge about RA. Because of this I am more confident about coping with the disease and fighting it. Knowledge is power as they say.
Welcome to the forum, though I'm so sorry that you had to come here, if you know what i mean. Hugs from Naomi, X
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Rank: Advanced Member  Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Gogs - welcome from me too. I can't add anything to what's already been said - just to say, we're a friendly bunch here and always ready to listen. You've got such a lot on your plate, and I really feel for you. Best wishes and hugs - Sylvia x Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Gogs, welcome to the forum that nobody wants to have to come to lol!! its a wonderful place for support and advice. There's always help at the end of the phone if you need some help in understanding the disease. I'm Barbara, diagnosed in July 2009, have just failed on Humira and about to start on Rituximab I'm sorry to hear about your husband too, that's very stressful and can make your symptoms even worse. I do understand, my husband has ischaemic heart disease, severe diabetes and RA I hope things get better for both of you soon There's always someone on here, and ready to give support, take care x BARBARA
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Many thanks to all of you for such kind support. Yesterday was tiring to say the least. At the heart centre, the technician said he thought my heart looked OK - that's good! At Pulmonary Function the technician said I did have ILD (interstitial Lung disease) but I also had a very healthy lung capacity - again hopeful! She did say that I would need twice yearly testing for life as it is progressive. I guess lung capacity size is probably due to my years singing in a choir and my regular swimming, plus until now I was a very big walker and hiker in the Italian Dolomites. I then saw the Rheumatology Nurse who felt I should see the consultant again, which I did. She said 'my case' would be discussed at the next Respiratory/Rheumatology consultant meeting, and how to go forward regarding meds for me. In the meantime she advised me I should have the steroid injection I have been avoiding, in fact she gave me one herself. I'm not happy about using steroids although I have to admit I am more or less pain free this morning. Yesterday having walked from the car park, then around the hospital to the various departments was very painful, and much to my embarrassment I cried when talking with her. I felt so worn out, so fed up, angry and frustrated, and so despairing at ever feeling OK again. My anger is boiling over as my life has been changed so much. Anyway, enough of that - the injection worked now how long will it last, and when can I ask for another? She said I must go to the hospital for them which is a bit of a pain, I had suggested my GP but she didn't want that. I work on the computer every day with my husband trying to improve his speech and language ( there's very little support from the hospital) I understand this department is grossly understaffed. My dog (someone asked) is a Red Setter called Harvey. He was 13 two weeks ago, and walks a bit like his owners!!  We've had six or seven over the past 35 years and adore them Thanks again for listening.
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Gogs,
welcome from me.
i feel so sorry with what you've been dealt with, and firstly i hope your Husband can make good progress.
glad you had all your appointments .. i can imagine just how worn out you were afterwards!
i know when i was first diagnosed i felt really alone, even though i have a supportive Husband and family, it's something we have to work through ourselves. i am a chatty open book person but i go into myself and have to take things step by step. i used my Consultant, my Rheumy Nurse who is fantastic and my GP who i have known a very long time as support as well as NRAS Helpline.
you get the gammat of emotions, why me, angry, sad, i did burst into tears on the day of diagnosis.
have you got a good GP as i know i can make an appointment and just unburden how i feel, well i did at the start and he answered all my questions that i forgot to ask at the hospital. also make good use of the Helpline.
sorry i can't help with your other conditions,
it took me about 14 months to get my RA under control, as each drug take's time .. but there is light at the end of the tunnel.
keep posting we are all here to listen and offer support.
take care,
Suzanne x
P.S. the depo steroid injection can last up to 6 weeks if they work well, you should rest up for the first couple of days to get the full benefit.
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Thank you Suzanne, what you have said, and the 'feeling' in your words have been very helpful. The injection has certainly worked as I feel amazing today - dare I say it??? - even high!!!!!!  Gogs
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Glad the depo jab has worked for you. They can last up to a couple of months, but everyone is different. If mine last two weeks I'm happy!! I hope they can sort out your drugs and get you more mobile again. I completely understand the problem of moving around the hospital to different departments, I have had some of that too!! Take care of yourself, and try not to overdo things or the jab will wear off too fast. Harvey sounds gorgeous, I love setters too!! BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Welcome Gogs to our lovely forum but sorry you had to be diagnosed with RA to find us.
Without this forum I would have been sunk when I was first diagnosed. Like you I needed an outlet as my Husband has been ill for about six years and he does not understand what I am going through. He knows I have RA and is very considerate with the physical things but does not realise the impact emotionally.
I hate having the steroid injections and actually refused one last time I saw the Rheumatology Department in May. I went crawling back last week and begged for one. Unfortunately the good far outweighs the bad when you are in so much pain.
You must keep talking and reading all the information on this site. Information is a powerful tool in handling RA. I feel so sad that you are getting so little support for your Husband. My Dad has had several strokes and his speech is awful so I know the long road you have ahead of you. You must, however, try and find some time for yourself. Your priorities will now change. My housework is not so perfect (I would spend hours doing it previously), I do not shop until I drop and my hobbies have changed. I used to spend weekends flying around trying to fit everything in. I now sit and rest and maybe do some cardmaking or cross stitch, just to make sure my bottom stays on that chair longer than it did previously.
Keep posting and I hope they can sort out your medication for you.
Jackie
xx
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Rank: Member
Groups: Registered
Joined: 9/20/2012
Posts: 23
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Hello there Gogs. soo sorry to hear how upside down your life must feel at the moment. I was diagnosed in April 2011 and joined this forum a couple months ago , but to have the extra worry of your husband must be overwhelming. Like you I felt very alone and find that when days seem too much to bear I log on and read through everyones entries. I don't always write but find just reading them takes my mind off my own. I really hope your husband improves soon and things get under control for you too. Take care Julie and remember you are NOT alonexxx
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Hi Julie, and thanks. I to have found that just reading through other peoples experiences very helpful. It's a very lonely place to be, and people on the whole mean to be kind and thoughtful but their own life takes over, and then you're left struggling and feeling bad. In the short time I have used this forum it's like there are people to talk to, and if I don't want to talk I can just read then I don't feel so alone. So thank you to all of you, you are most helpful, and welcome in my life. Gogs
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Rank: Advanced Member Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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Hi Gogs You are so right!!!!! Its like you are talking to us and we to you! I read what people have on their minds, and have no energy to reply or feel reading someones thoughts uplifting to be a part of their journey/experience. The ra thing can be difficult (when the pain is throbbing away, body aches, silly joints behaving badly) but the forum community is like a big family and I feel I'm not alone! Best wishes to you. Jane Xxx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Gogs
A welcome frome me. So sorry you have so many problems I do hope by coming on this site
you will find good support and advice.
Take care.
Rose
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Gogs - I'm so glad the steroid jab worked well for you. I had one back in May and it was like magic - blissful with no pain!!! But my friends here warned me not to overdo it just because I felt well, and that's very good advice. I also had a short course of oral steroids, which reduced the swelling and kept the pain at bay, by which time my dmards were starting to work - are you taking any other meds? I know that steroids have side effects but used ocassionally to control flares does more GOOD, and simply having a respite from the nagging pain gives your body time to recharge and heal itself too. There is light at the end of the tunnel - so keep going with your brilliant efforts. Rest as often as you can and keep posting here, for a regular boost and lots of encouragement. Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Hi Sylvia, I am just sooooo happy, I can't really explain how I feel except to say that for the past three days I have been PAIN FREE  Why did I hold back on such magic, if and when I'm offered another one, I'll take it! My medication initially was Sulphasalazine and hydrochloroquine. After two months on that I was a wreck. I'd lost weight, had severe headaches daily, nausea, stomach cramps, and diarrhoea about five times a day - the weight loss was OK  When I went to the specialist she suggested I stopped the sulpha for two week and kept a diary, after that if was no different I was to stop the other and re-start the sulpha. But two weeks after stopping the sulpha I felt a lot better, the only problem with that was, I was no longer on an adequate dose of meds. and so the pain gradually started to return until I was living in misery and not really aware of the cause, believing I was depressed. At the hospital on Monday I broke down and cried I felt so fed up, but if she could see me now - wow They are going to have problems deciding what to give me as I have developed Pulmonary Fibrosis as a result of the RA, sadly it has happened very early in the disease for me - I was only diagnosed on 29th June 2012. Methotrexate and Leflunomide both seem to have negative effects on the lungs and the initial consultant I saw even without confirmation was not happy to start me on MXT. The new consultant feels she wants to start me on MXT and has said she will discuss this at the consultant monthly meeting, but I'm not very happy about it yet feel, I will have no say in the matter simply because to treat a patient with MXT cost pennies per year, and the new biologies can be upwards of £10.000 per patient - there's no contest really is there? Yet all the liturature say it's a no go if there is any lung damage. I want to trust her because she does appear to be really nice, but I'm reading and I'm getting concerned. I note you comment about resting - I might have to learn the hard way!!! I just feel so good that I wish it for all of you because it's a miserable creature this RA. Gogs
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Oh Gogs - I'm so happy for you to be pain free!!! It's a great feeling isn't it? We just adjust to a creeping level of pain and don't always notice when it's getting so bad, and there are meds out there that can help. I'm so sorry that you've got this extra problem of the lung disease, it's going to complicate matters, but it sounds as if you started this with a good healthy body and that will help you to fight the RA!!! About the MTX - you do have a say in this! You are the patient and that makes you the most important person in the discussions - so never forget this. On the other hand the specialists do have broader experience and can weigh up the risks of this course of action or another and give impartial advice. But in the end the decision is yours - sometimes you'll have to campaign harder to get things and that might mean delays and more pain for you so that's also something to consider. The current NICE guidelines do promote MTX as a starting point, and then move onto biologics if the patient fails to get along with it. If you did choose to start MTX then you would be monitored very closely - I started with fortnightly blood tests and that's only recently been reduced to monthly. I had a problem in the first couple of weeks and one of my scores came out high and the rheumy nurse was onto it immediately - I had weekly bloods and I stopped MTX for a week or so and then started back at a lower dose and things are progressing as expected now - but it really reassured me that I am being monitored and anything unusual is picked up very fast. I am told by people on here that new drugs are only given a few months trial and if the patient doesn't get along with them (ie has nasty side-effects) or if the drug doesn't provide the expected benefits then they move onto an alternative pretty quickly. You've obviously been through that already with the sulphasalazine and it's a shame that gave you such unpleasant side effects - but it sounds as if your consultant wants to try all the basic options first and MTX is pretty standard, and I have to say very effective in many cases. But it's not for everyone, and there are lots of people here who are on biologics (they will correct me here, but I think they've all tried MTX but didn't get on with it) so cost isn't a total no-no although different trusts have different policies on this and sometimes it can take a long while to get approval. (there was a thread about this not long ago - can someone help me out???) Anyway - keep on reading and do enjoy being pain-free - but make sure you rest too!! Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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