Hi all. Im new to this. I was diagnosed with ra 2 weeks ago, and will start on sulfasanazine (think thats right) on 20th sept. At the moment im finding the whole thing scary. Im still unsure whats going on in my body, so explaning to others is difficult. My employer has the attitude that if i need time off sick through ra i will be referred to occupational health. I must admit i have days when i find work very tiring, and end up having a sandwich and then bed when i get home. (I work 18.5 hours over 3 days). Sorry if this is rambling but any help/advice would be appreciated.
Penny
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PennyW1
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It's actually a good idea to be referred to occupational health. They can be a great support and help with explaining to your employer what would be useful adaptions to your work and that they are required to do them by law.
You will have lots of questions - keep looking at the NRAS site and download some of the information, or get a leaflet, on things like employment and treatments.
Welcome to our humble abode, when you first start sulphasalazine you will need to keep your shoes on for at least a week so that you don't lose any of your toes and if you wear your shoes it will keep them all together, then all yo need to do is get some gloopy glue and stick them all on again but make sure you put your toes in the right place because failing to do that, your fingers will fall because they are all linked with each other, very similar to the old cotton bobbin when you use the band and a matchstick to make it go all over the bedroom and sometimes it goes under the bed BUT be careful that the sock monster doesn't grab you, you won't find the sock monster there often because he's normally in the washing machine. Mmmmmwwwwwwwwaaaa
But seriously there's lots of lovely peeps on here and I'm sure you'll fit in just nicely. Take care.
Philip
Lol only kidding. Lol, but the sock monster is the real one who lives in all of our washing machines.
PENNY When i was on sulfasanazine i had rashes on me hands so i stopped and took some folic acid that sorted them back ok Just if your hands go like itching in the palms cos sometimes it dosnt suit some people they say my rumi said i did the right thing to stop it and they put me on predistone
It is a good idea to keep a diary of what is happening to your joints/soft tissues so that you can let Consultant know how things are progressing when you have your appointments. It's easy to forget when your appointments are months a part. You can include side effects / any thing untoward as well in your daily/weekly record. It takes a while to find the right drugs that have a good effect and suit you and don't expect immediate results when you start the sulfasalazine (it can take anything from 4-12 weeks to see any results), so be patient. Common jiggly side effects such as headaches, nausea, etc., generally settle down after 2-3 weeks - again be patient.
A lot of people using this site, have had differing problems with the Drug medications, but remember there will be a large proportion of people doing well on their drugs that don't report on this site - so don't be put off or get despondent. Good luck and keep us informed about how you are doing.
Hi Penny. I think I can speak for everyone when I say that the " scarey" feeling you have atm is perfectly normal. You've been given a diagnosis of a disease you probably knew nothing about until now- and you have probably only heard horror stories since. I was diagnosed 2 years ago and was terrified. I've had various drugs, not sulphasalazine, and after they kicked in properly, I feel totally different and can do things again that I would never have thought possible.
Kicking a ball with my grandson, cutting my own food up, kneeling on the floor to do the weeding- the list goes on. I do still have " off" days- but on the whole am much better. There will always be someone on here who will answer any questions, however daft they may seem to you. Hope all goes well when you start your drugs. ☺
I'm new to all this too, and just started on Sulfasalazine this week. (Taking hydroxychloroquine since end of January, but cannot tolerate the high dose.)
I share your concerns about occupational health, fearing it is a means of getting rid of staff-likely-to-need-time-off. I'm open with my line manager and close colleagues about everything, but as I'm not as yet obviously affected by RA, I'm not sure they understand the seriousness of it. I had to take time off in December after I had a steroid shot in my shoulder for tendonitis. I wanted to work, but the constant use of a mouse was paining my shoulder and, although I wasn't ill ill, I knew I needed to rest it from that particular action. I took two days off sick, then took lieu time until I broke up for Christmas. I was a bit cross that I was expected to take lieu time when it was probably the repetitive nature of my job that had caused the problem in the first place. Then I had to have a "back to work interview", which seemed a bit extreme after only two days' sick leave.
Where I work there are at least two other members of staff with RA, and others with other forms of arthritis. I might make enquiries about their experiences with OH.
Em 13 you've hit the nail on the head. I have 7 months to go before i can claim early retirement (which i intend to do) with my reduced pension. I just hope my employer doesnt try to get rid of me before then, because i wouldnt be able to get my pension for a further 12 years😞. All you other lovely people, thank you for your replies. I am taking everything you have said on board. I am still scared about my future with this illness, but i know i have a support group who can help. 😀
My hospital gave me a leaflet about rights and disability that's written specifically for employers. I'm very lucky with mine so wouldn't dream of giving it to them as it's just not necessary but it's informative for those who might be less fortunate. I had a manger once who did a lot of research off her own back so was very understanding too. If only everyone was like that!
Sorry for this quick reply. I've been on sulphasalazine for 2 years now and doing great on it!! As for your employer, you are covered by the disability act and therefore they have to offer you things so don't worry too much. If I was you I would definitely join a union and they will be able to give you loads of help and advice. Hope things work out and keep us updated.
I've just had my diagnosis confirmed after my second appointment with the Rheumatologist last week. I started taking sulfasalazine a month ago and have just had methotrexate added, with folic acid and vitamin D. Before that I had spent two years being pointlessly treated for gout as GPs refused to refer me - two years I could have been treated properly for! The way I see it, is that it is scary, but at least you are getting the help you need now. It would be scarier left ignored I think. I work full time in a busy hospital and have put a brave face on things, my walking is pretty slow and useless but I am just about still able to do my job thankfully. I've only been in the job just under a year and it's a sought after position which I've wanted to do for years so it has been a concern. I'm also about to become a dad for the first time!
Good luck, you should be fine with sulfasalazine, aside from my appetite taking a knock (no bad thing for me!) and some nausea, it has been ok. MTX, after one dose, has had a similar effect.
Sorry to hear about your recent diagnosis but welcome to this site- you will find lots of help and support here from other community users. The booklets that the others mentioned can be found here: nras.org.uk/publications and we have one for the employee and one for the employer (they can be downloaded or requested by post).
In the meantime, do give the NRAS helpline a call if you have any queries or concerns. They are available on 0800 298 7650 Monday to Friday 9.30am-4.30pm.
Sulfasalazine, that's what they start you with first as it is the cheapest like gobstoppers, I suppose like everything some work for some but not for others, about 12 years ago when I first encountered it everything appeared okay with 4 a day then when I was increased to 6 my scalp being similar to Kojaks, started to break out so the Doc stopped it right away then I was moved to Methotrexate and I then suffered breathlessness and it made a helluva mess of my toenails but the doc. said no it cant be that so I was stuck with it for many years, so if any of these symptoms occur you will know the reason I hope they work for you good luck!!!
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