Please tell me this will get better

[KathH]

Hi I've not yet had official diagnosis but consultant has confirmed inflamatory arthritis and suspects RA. I've had a steroid jab and I'm taking naproxen but have had to take cocodamol today as the pain in my hands and feet is so bad. I'm really struggling to come to terms with it, I'm not depressed just bloody angry tbh ..... Please someone give me a glimmer of hope I miss work and getting out and about, I'm so worried that this is going to get worse not better!

[sylvi]

Kath i can't tell you that it will get better over night,but it will come that much i can tell you. Its a disease even the specialists don't know enough about. Take the tablets that are given you it will help.Keep your chin up it will come.

Sylvia.xx

[BossyB]

Kath

I too am in a similar situation to yourself and have had hydroxy and arcoxia but had to com off hydroxy due to headaches. I had my second sterod injection 11 days ago and it did settle it down but still have aching wrists with little strength and pain in back of my knee. I am back Wednesday and pending the blood tests and reaction to steriod injection they are putting me on MTX and some other stuff to go with it. I will let you know how i get on but I think it seems to go on for ever and I wonder if they will ever get the meds right.

Does anyone know why they are waiting to see the reaction from the steroid before they give me the MTX as she seemed to hint if the reaction is good, i will be going on it. I would have thought if it was good, they would not bother with the MTX and just keep giving me steroid injections. Still don't know enough about it to understand that one.

[bpeal1 in reply to BossyB]

I am not sure why they are waiting to see the reaction to the steroid before deciding whether to start MXT but it might be possible that they are checking the pain is caused by inflamaion rather than a mechnical problem - I had a lot of pain in my hip a couple of weeks ago and the consultant said to me the quickest way to find out if it was RA related or mechanical was to see if it responded to steroid injection.

The reason that they can't just treat RA with steroidsis that steroids only treat the symptoms by reducing inflamation but don't stop the disease. MXT is a DMARD (disease modifying anti rheumatic drugs) they all work in slightly different ways but with the same aim to try to stop your immune system working in over drive.

I am not an expert but this is how I believe it is from my own experience and limited research.

If you look on the NRAS website they have a really useful section which describes all the different drugs used to treat RA

Hope this Helps

Becky

[bpeal1 in reply to bpeal1]

nras.org.uk/about_rheumatoi...

Here us the link for the bit about drugs on the NRAS website.

[beachbabe]

Hi debbie

sorry cant give you any answers but it seems even the medics find it hard to get the right combination of drugs.

i think it is a matter of trying things to see what helps and doesnt make you feel too bad with side effects.

anyway i am on mtx and Enbril which has made a vast difference to the pain strength but still very tired but, hey, i can walk my dog, watch my son play rugby and visit my daughter at uni so i will put up with tiredness! ! !

hope you start to feel better,

xxx

[Judi]

We all know where you are at Kath.

I was diagnosed with RA almost 20 years ago and was as angry as you at the time (and many times since). I managed to work full time - at least 18 of those 20 years, (I retired two years ago as I was officially a pensioner - I did not retire due to ill health).

The medication does take a while to get into your system, if you are not feeling any benefit from them have a word with your GP or phone the rheumy team you are under they may be able to give you more help.

Sometimes it takes a while for rheumy teams/GP's to sort out which medication is best for you, we are all so different and react to the meds. differently - unfortunately it's trial and error. If they dont know the medication is not working for you then they cant help you. Give them a call, they wont think you are a nuisance (remember that rheumy consultants and rheumy nurses choose specifically to work within the rheumatology department,)

In the meantime as your hands and feet are so sore try resting them in cold water for a time (or try a bag of frozen peas etc.. - some people find that hot helps them whereas I have found cold helps mine.) I think the cold helps to reduce the swelling and inflammation a bit and definitely helps me.

As Sylvi says - difficult as it will seem to you at the moment - keep that chin up. I have found that the best way to fight RA is having a positive attitude - OK I have it, nothing I can do about it just take the meds. offered .....

I dont 'put up or shut up' with any associated pain - as far as I am concerned I expect to feel the best I can !

If you pay for your prescriptions you may be able to get a pre-payment certificate if you are regularly taking a few medications - I'm not sure how many but your chemist will be able to advise you (or someone on here) - it will work out cheaper in the long run especially if they try you on different medications.

Sorry my answer is so long.

Judi xxxx

[stbernhard]

Hi KathH,

There is HOPE! I was diagnosed with RA in December 2009. Started off with steroid injections, then tablets and other conventional drugs. I couldn't hold a plate or knife and fork and hardly walk at all. I am now on biological drugs as well, after a fight for them. Yesterday I went for a 75 minutes cross country walk and after a bit of icing my joints were ok'ish. I can now cook and bake, go swimming and walking. I am not in pain all the time. I never thought I'll get this far at the beginning, but here I am! My main advise is to inform yourself about RA and the relevant treatments as much as you can. Don't let the system direct your treatment. Demand everything you can get. Drugs, physio, specialists etc. Be a pain if you have to, you are the one in charge. You are the one with an illness. Once the care team realise that you mean business, they will do everything they can and you will feel better. You are the boss, not they or the illness! I wish you all the very best! Willyb.

[Hidden]

Hi Kath,

My story is very similiar to willyb above but just diagnosed this feb when I couldn't walk ect but now 80% with a biologic, he's given you great advice, I was lucky as I didn't have to fight for it, where I live I suppose

It will get better, I can't believe I 'here' other (like willyb says!)

take care

[Julie1]

Hi Kath

I get some good days and those are wonderfull.Keep talking to others so you are not alone.x

[cathie]

Yes, me too. I wrote a blog a week or so ago about how I was doing things I couldn't do a few months ago. If you can get stable on the medication - and there's a lot of options - and can keep moving and getting exercise that will help your general well being. I really believe that RA is worse when I have high stress levels so if you can work on relaxing that may help.

It can get better, there's a lot of variability in people's experiences.

Hope you feel a bit better soon,

Cathie

[Hidden]

Things will get better, It may be that it takes a little time, and trying a few different drugs.. and I hope that all the above answers will help you,

The steroid jab will provided relief whilst any outstanding tests are done and will act as a temporary fix until some treatment is sorted

best wishes

Alison x

[Gina_K]

Hi Hon,

I agree with all the above. It may take some time, there is no standard, but the sooner you get a confirmed diagnosis the sooner you can get started on a plan & Dmards. Steroids and pain killers only mask the disease, but do not slow its progression. The word progression still scares me.

I know how you feel, the anger & fear, but you will come to terms with it and with some adjusments you will cope. Look at it this way, it won't kill you, and even though it is incurable, this is the best time if you do have it, with anti tnfs and new drugs coming on stream all the time, there is sure to be one that will work for you.

In the meantime, be proactive, if you don't have faith in your medical team, get a second opinion. Make lists of questions you want to ask and make sure you get answers and clearly understand. Throw away leaflets when you have read them on medications don't obsess about side effects or you will experience them. ie. this causes headaches, oh I have a headache, > I have to stop taking this. You will know when something really does'nt agree. This is my opinion anyway.

Be easy on yourself, you are still you, just with a new challenge. Keep in touch.

Best of luck, Gina.

[julieporter]

You will feel better -it's a lot to come to terms with and it feels all doom and gloom at the beginning.Once your meds are sorted out(which can to time to find the right mix)things will improve.Make use of the NRAS helpline they are really good and they understand.One piece of advice don't Google RA -i did and frigtened myself to death! ask on here or Arthritis care website.Many people are still able to work and live relatively normal lives .

Hope you feel better soon

Take care

Julie

[KathH]

Thank you all so much for your advise and support

I've had a pitiful few days and felt very sorry for myself. I'm doing my best to keep positive but some days it gets the better of me .

I went for a little walk (hobble) today in the rain and saw a little old lady in a mobility scooter taking her dog for a walk, as she came towards me she said ' give us a smile love things could be worse' I've never laughed so much ! Spent 10 mins chatting and her parting comment was ' see ya tomorrow, come out n play, if you get tired I will give you a backy' Bless her she didn't even moan about the rain. So yes things could be worse eh !

Anyway got hands and feet xray tomorrow. Going to phone consultant and ask for better pain relief untill they have decided what they are doing with me. And find something constructive to do on the good days, think that's half the problem stuck in house moping around looking at the things I can't do rather than the things I can do.

And I'm meeting my new friend at the path and having a little walk by the canal at 11. (sore feet permitting)

Thanks again it's nice to know I'm not on my own x

Kath