Hello, I'm Ailsa and was diagnosed a couple of weeks ago with RA but had been seeing a rheumatologist for 14 months with what he said was Sjogrens Syndrome.

I'm 50, mum of 5 (4.5 still at home!) and teach full time. I am struggling with taking in the new diagnosis and getting used to methotrexate. I have been on 400mg plaquenil since last March and also take amitriptyline at night, tramacet and folic acid. I'm on a tapering doen dose of pred too.

I worry about carrying on with work and family commitments. My parents are in their 80s and only have me around. How do you all manage to stay on top of things? I feel very weepy and haven't really tried to explain to anyone about the new diagnosis - feels like I always have something wrong. Prior to this happening 14 months ago, I'd rarely been to a Dr except when I was expecting!

So glad to have found this site and read some similar stories. xx Ailsa

Hi Ailsa

Welcome to the forum but sorry to learn that you have been diagnosed with RA. This is a great place to be to chat with people who have experienced first hand the problems you are going through. I love this place; everyone is very friendly and you will soon feel at home. Do fire away with any questions, there's always someone around to offer advice and support.

I'm Lyn, married to Mike and we have four children, all at home (thought I'd sent one on her way once, but she bounced back!); so I know just what it's like to bring up a large family. I have had RA for almost 22 years and gone through the various drug regimes, numerous surgical procedures, fusions, replacements etc. and monthly blood tests. I was an HEO in the Civil Service but had to take very early retirement on ill health grounds 20 years ago. I now do voluntary work with the PTA at my son's school and a bit of counselling, when I'm able.

It's difficult to stay positive when things are giving you a tough time however with a confirmed diagnosis you will be better able to obtain the treatment that is most suited to you and hopefully will bring the RA under control. Today's drugs are so much more effective in disease control giving a more optimistic outlook for the future. Methotrexate is the gold standard drug for RA and once it kicks in you should begin to feel some benefit from it. I have been on it for years, along with other drugs and currently an anti-tnf Enbrel and together my quality of life has been much improved. Today I have actually been taken off methotrexate but that's another story!

It's an early night for me, it's been a long day! Look forward to speaking with you again soon. Take care,

Lyn x

Hi Ailsa,

I'm julie, 46, been with my partner about 26 years and we have an 8 year old son. I'm still working as a civil servant but work part-time/term-time so I don't have to pay for childcare ane can be with my little boy. I understand what you are going through - it feels like you have the weight of the world on your shoulders and are too tired and painful to deal with it. I didn't find the forum until 3 years after I was diagnosed but have found it a godsend. Looking forward to getting to know you.

Julie

Hello Ailsa, and a warm welcome from me,Julie (58) on Humira and working part time in two schools.
You're bound to be in shock right now, the diagnosis of RA is a heck of a lot to take in all at once.
Don't try to sort everything out in one fell swoop. Your meds will take time to get sorted and kick in properly leaving you hopefully feeling much better.
The best advice i can give you right now is to concentrate on using the energy you have for work and kids and ignore 'other stuff' like the odd giant dustball floating round the house!

Can you afford to have someone do a bit of cleaning for you? Or ironing? (or both!) etc.

Being weepy is very common at this stage. If it persists for long and starts to interfere with your life then have a chat to your GP about it.

Thankyou so much everyone for making me feel so welcome. Your advice is so welcome as I don't know anyone else who has RA. My first rheumy did not act on the raised Rh factor, so I think the RA would have been picked up at the same time as the Sjogrens by someone more alert! The new rheumy is lovely.

I'm looking forward to reading up on the forum and getting to know you all a little better and also getting to know more about RA and how to keep it in its place. Thanks for all the encouraging words. Have a good weekend XX Ailsa

Hi Ailsa- a belated welcome from me.

I'm 53- started with RA whe I was 50 too. I'm also a teacher and have been working full time . Have you spoken to your head yet? I was completely upfront with mine and he's been very supportive. He referred me to occupational health who were fantastic, arranging a risk assessment. We disucssed my needs and they sent their recommendations to the head who is obliged to put them in place. I had handrails put in my teaching block, an ergonomic chair, smalll lightweight laptop. Employers have a duty of care and must make 'reasnoable adjustments' to enable you to work. Also- as a secondary teacher, I was not given a form, so I would have more time in the morning to 'get going'. The head was also happy to re allocate tasks and when a vacancy came up in my dept he reworked the post so I no longer had to do the drama productions (which I couldn't have done anyway!!). i apprciate that if you are a primary teacher it might be different for you though. I think you can ask to be referred- or maybe your dr can? It was well worth it for me. Please push for as much as you can.


I must admit though, teaching is not an easy job for someone with RA, with all the stress. I find that I go in when I'm feeling rough, when really I should rest. I'm sure your'e familiar with that one!!

I've found 5 days too much so from Sept I will be going down to 4.

I understand about your parents- mine are also in their 80's and in poor health. I live about 130 miles away from them and although my 2 brothers live near them they don't do much. Have you thought about contacting social services and getting them some support at home?

Being weepy is all part of having RA. I went through a positive phase but recently have been very down. At the moment I'm going through a 'why me' phase. I also find ithard to accept that I can't do thigs like I used to.

Looking after 5 kids? I really admire you. I don't have any myself so don't have that added pressure.

Take care- and keep posting- there's aways someone here to listen and help

love

Maria x

Hi All

I don't suppose this is relevant, but I thought it may interest you. This info is taken from the Sjogren's Society web site.


Q. What is the difference between Primary Sjögren’s versus Secondary Sjögren’s?
A. Sjögren’s syndrome is usually classified by a clinician as either primary or secondary. Primary Sjögren’s occurs by itself and secondary Sjögren’s occurs when another connective tissue disease is present. However, this classification does not always correlate with the severity of symptoms or complications. Primary Sjögren’s and Secondary Sjögren’s patients can all experience the same level of discomfort, complications and seriousness of their disease.

Sjögren’s syndrome often is undiagnosed or misdiagnosed. The symptoms of Sjögren’s syndrome may mimic those of menopause, drug side effects, allergies, or medical conditions such as lupus, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, and multiple sclerosis. Because all symptoms are not always present at the same time and because Sjögren’s can involve several body systems, physicians, eye care providers and dentists sometimes treat each symptom individually and do not recognize that a systemic disease is present. The average time from onset of symptoms to diagnosis is 6.5 years."

Hope it's helpful.

Love Jeanxxxx

Ailsa

I was apprehensive about going to OH but it was fine. I was initially worried that if I told them too much I would be deemed unfit for work, but that wasn't the case. They are there to get you the help and support you need and will make recommendations to the school as to what needs to be put into place. They basically asked me for an account of my symptoms- how it started, how long I've had it, what treatment I'm on and how RA affects me. I made a list before I went so I wouldn't forget anything. At the time my main needs were physical, difficulty using stairs, getting up and down out of chairs, opening doors and carryng books. I was also suffering badly from fatigue so regular breaks were recommended (not easy once the timetable's in place!) If I remember, the final report was confidential but I chose to discuss it with the head as I was determined to get what I needed. I made sure that I told the head about the fatigue and he said that if necessary I can ask for the occasional lesson to be covered if I'm struggling.



I also remember the advice in one of the NRAS booklets about not making any major decisions early on as things can and do improve.

My biggest problem is self management- it's so easy when I'm having a good spell to forget I have RA and overdo it. Often!

I also contacted my union- they were very supportive and the branch secretary came to one of my meetings with the head. If you haven't done so already it's worth it-even if only to log that you have a long term illness, then if things become difficult later you have the back up. Sorry- I don't mean to tell you what to do- typical teacher


all the best on Thursday- let us know how you get on.

Maria