Hi Paddy

Welcome to the forum but sorry you had to have RA to find us.

Unfortunately it can be a terrible shock when you are diagnosed and it will take you some considerable time to come to terms with it. You have to grieve for your old life. More importantly you have to have patience, if only this was on prescription, I would be at the front of the queue It can take a long time to get the meds right and you have to learn to adapt your life considerably. However, as many will testify on here there is life after RA, it is just finding the right path for you.

My first really bad episode with RA was many years ago. I woke up one morning and could barely move. I was due at a job interview that day but had to cancel as I could not even get dressed. The doctor was called out, blood tests were taken but they said "oh it must just be a virus". Suffice to say I did not get the job and six weeks later I was right as rain so was very miffed. Nearly four years ago, my immune system went completely beserk and I had shingles, flu and all manner of illnesses. Luckily a really clued up doctor this time, realised something was drastically wrong and sent me to a RA Consultant and I was diagnosed with RA. It appears I have had it all my life but it has come and gone in short burst over my life until it is has now gone into over drive. It has been a great shock and even four and half years later, I am still not sure I have come to terms with it and try and kid myself it is not too bad until I see the joint damage with yet another xray.

This forum has been a god send to me with help and support from many lovely people. There is always someone to talk to or answer a question.

Keep posting and we look forward to getting to know you.

Take care

Jackie
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Hello Paddy, and welcome to the forum, which was a lifeline to me when I was first diagnosed, almost 8 years ago now. I, too, was fit and active, so RA came as a terrible shock. I spent 18 frustrating months trying and failing on various drugs/combinations of drugs, until beginning anti-TNF therapy in August 2007. The drug - humira - made a huge difference to my quality of life.

For those first 18 months I was dependent on help to get showered, dried, dressed etc., and with all manner of things in the kitchen and around the house. At times I also had to use a wheelchair, so it was very difficult to remain positive, and come to terms with the changes in my life. I couldn`t even pick up my first grandson for a cuddle, which was soul-destroying. During this period of time, my wonderful family, and my wonderful GP kept me going. There is light at the end of the tunnel, but it takes a while to get there.

You may be lucky, and find the right drug fairly quickly, but in the meantime be kind to yourself, and take a rest whenever you can - fatigue plays a huge part in RA. There will be setbacks along the way, but hang on in there, and things will improve.

The reason I joined the forum was because I didn`t know a single person in my circle of friends/acquaintances who had RA, and I found lots of information and empathy on here. I hope you have a good rheumy team treating you - mine are excellent, but I know things differ quite widely across the country.

Keep posting, and let us know how you are getting on.

Love, Kathleen x

hi Paddy,

welcome from me,

yes i can totally understand how you feel when diagnosed .. i lost over half a stone in weight in the first week with the shock of it all. to be honest i didn't really understand the disease at all, i remember seeing children with it on hospital programme's and my heart went out to them. i just burst into tears in the Consultant's room.

then agree you are faced with all these powerful drugs, given all the pamphlets to read, it was just too much for me. i run to my GP as i always do and he was my rock, also my Consultant is brilliant and assured me that being diagnosed in this day and age is totally different to 25-30 years ago.

i was started on Methotrexate and gradually built up to 20mg but this was too strong for me, it really messed with my sleep pattern ( not in the list of symptoms ) but no matter it did, it left me feeling very troubled at night, ( i am not a good sleeper at the best of times ) Hydroxychloroquine was added 6 months later and my Methotrexate reduced back to 10mg. unfortunately this combination didn't work, so again i had a long wait as i was put forward for Anti-TNF Humira, and had to wait for funding approval again about 6 months, i have not been on this combination and it works well for me.

my main disability now is bad Osteo in both knee's but while i manage as i am no way do i want my knee's replaced or messed with,

anyway enough of my rambling,

what i am trying to say is each drug is scary as it's introduced and unfortunately we have to give each drug time to see if it's going to work. i learnt that very quickly when i first joined the forum.

i haven't heard of the drugs on your second post, maybe give NRAS Helpline a call.

do you have a good Rheumy Nurse?

don't ever apologise for being down on here we've all been there and got the T Shirt. glad you have Alfie there,

do keep posting and reading through old threads .. there's a lot of information on here,

best wishes,

Suzanne

Hello Suzanne and Lisa, Thank-you for your replies, I was a self employed Social Work Manager who had lots of work however I have had to stop as I cannot drive far without pain. At my worst I had to move in with my Daughter and my Grandson who is 6yrs old. My Daughter is 40yrs old. I am back home now but still find the mornings difficult. I need to start working again as I need the money.

When you change your drugs it takes a long while for them to kick in, Just as I think it is getting better something else goes wrong Do you find any alternative therapies work for you. I have tried a few, trouble is it all costs and I cannot tell what is working and what isnt. I love these little smilies Good night to all.

Paddy

Just wanted to add a couple of things after your most recent post.

Unfortunately I have not heard of the drugs you are taking for your osteoporosis but someone on this forum may have.

To be honest I take a whole gamut of drugs, Methotrexate and Simponi injection along with anti inflammatory tablets and pain killers and I have had to put out of my mind all the possible side effects from these as I could not carry on without them.

I work full time as a Purchasing Contracts Manager. I have been very lucky as my company let me work from home two days a week, so I go to work on a Monday, Wednesday and Friday and then work from home on a Tuesday and Thursday and don't even have to worry about getting dressed on the days at home. In the evenings and weekends I rest as much as possible, because even going to work three days a week completely wipes me out but the evils of money ensure I have to keep on working. I do believe that if you can keep your mind occupied as much as possible, then it stops you dwelling so much on what is happening with your body.

I have not tried alternative therapies as my Consultant told me that if they did any good they would be on prescription, but again I think you should try anything which may boost your confidence and give you a sense of well being.

Unfortunately the evils of what we have wrong with us does mean that other illnesses will rear their ugly heads. After a while you just have to laugh and add another one to the list.

I am so glad that you have Alfie to cheer you up. Dogs are a wonderful companion. We lost our most adored Labrador last year at twelve years of age but we are very excited as we are picking up 8 week old Louis a Labrador cross Retriever at the weekend. The house has been so quiet and my Husband has had to retire with ill health at 50 and can't wait to have a friend again to keep him company when we are out. My 17 year old Daughter is beyond excitement

Keep posting Paddy as it is lovely getting to know you and keep smiling

Take care

Jackie
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Forgot to say that I hope your Puppy has arrived safe and sound at his new home. Good luck and I am sure you will fall in love all over again Jackie.

Hi Paddy

I was reading your post about how you read all the information and it freaks you out - I am exactly the same and have to stop myself from reading stuff as it starts to take over my every thought and does contribute to the sleepless nights. I am glad you've got your wee dog for company as they seem to pick up on how us humans are feeling don't they? We've got a jack Russell and a greyhound (the odd couple) but they get on so well. I hope you can get a job that suits you and your RA. As for alternative therapies I have been very tempted to delve into trying them but as yet have just used what has been prescribed although it is a concern what long-term use is also doing to my body.

Lisa

Hi Paddy,
Welcome to the forum, I have had ra now for 6yrs, still feels very strange at times and I still have days when I grieve for my old self!! pre ra, walking miles everyday.
I have climbed Snowdon a couple of times, live in mid Wales, but it will have to be by train from now on
I do take alendronic acid. Had a bone scan only a couple of weeks ago, I have osteopeana. had the results very quickly via my rheumatology nurse. Have lost 1 1/2 cm in last 2 yrs, and bones continue to thin inspite of alendronic acid, very disappointing, and something else to take on board.
I have no problem taking it, no side effects. It is a bit of a pain, because you have to take it first thing in the morning before anything else with a good glass of water, and then wait for 30 mins without bending, can sit or stand upright, before morning cuppa or breakfast.
I have mtx inj, hydrox. and abatacept infusions monthly, which seems to have sorted me out, did take a very, very long time to work out the right concoction!!
best wishes Zena x