Had enough

[Sue8]

Hi everyone

I don't post often but I read everything. This is me to date.

Since Xmas I have just got worse, I am on 20mg MTX and at present 15mg pred. The pred was given to me for PMR then 3 months later diagnoses with RA and put on the MTX. The mTX is not working one iota and th eonly time I have some relief is when they increase my pred. I manages to get down to 12mg of pred but over the last 2 months have gone back up as the pain has been unbearable. This has caused me to ring the helpline in my MTX booklet. I only reduced down to 15mg on Monday after being back up to 20mg pred for 2 weeks. I am now in agony. My neck and shoulders are all swollen again my knees and feet hurt so much I can barely move around the house. I just want to sit and cry but I have a 7yr old daughter who I home educate that depends on me though she is really good knowing when I need help bless her. I also home educate my almost 14yr old son with special needs but we have just asked for a special school for him so fingers crossed we get it and that will relieve me a little and give me a break.

I am at the rheumy on Tuesday and it can't come quick enough. Last time I spoke to my rheumy nurse she said my CRP is not reducing so they will probably change me to MTX injections but because of me flaring they may add another DMARD also.

I am really struggling with day to day stuff which is horrible as I was always a very busy mum. I love baking but can't remember the last time I covered my large table in goodies.

Today I have to try and get to the chemist for my meds and really hoping my older daughter has time to take me in the car before she goes to work or I don't know what I will do. It is in our village but down a steep hill and takes me 20 mins to get to then struggle back up the hill. My parents usually get it for me but they are lapping it up in Egypt at the moment. I can't even think about a holiday this year as it would not be much fun for the kids. My almost 14yr old says he is buying me a mobility scooter for my birthday as I walk to slow for him. I will be 50 this year and my mum will be 70 and she runs rings around me and she has had 2 new knees lol.

Anyway that's me, just wanted to let off steam about how I feel as I don't like letting my kids know especially the older ones who are married as they have their own lives to lead. My eldest has Ankylosing Spodilitis so he knows what the pain is like and the meds and he is a specialist nurse so I try not to tell him everything.

Right best try and shower if I can lift my arms to do my hair, well what's left of it cos of the MTX. Bye for now, gentle hugs and keep smiling or you will cry.

PS

Pic of my 8 months old german shepherd being clever.

[Hidden]

So sorry to hear this really hope your rheum appointment will be able to help. take a list with you and another person too. thinking of you xx

[Sue8 in reply to Hidden]

Thank you, my daughter will be taking me but I have an excellent memory so will not need anyone to listen for me lol. I am just so sad that my life has come to this after being such a busy person. Some days my wonderful hubby comes home from work and has to sort dinner. Not once did I ever expect him to do that over our 31 yrs of marriage. He is also a manual worker so he too is exhausted when he gets home.

[Munchkinella]

You're really going through it aren't you my lovely? Sending gentle hugs back to you.

Good luck with the rheumy.

Love Janet xxx

[Sue8 in reply to Munchkinella]

Thank you Janet, we keep going though don't we? Some days I honestly don't know how I have got through the day. Thank goodness for these groups/forums, someone who knows exactly how we feel to moan at lol

[Munchkinella in reply to Sue8]

It really is a great forum isn't it? We all need to offload at times, to some one who we know will truly understand were no question or worry is silly. xx

[minxy1960]

Poor you, it's a sad state of affairs that we are all reduced and dependant on Rhumi appointments and the evil drugs we have to take to " wash our hair or put the kettle on " as some examples, god bless you , hope soon your pain will subside,we don't seem to want to tell our off spring,because in our minds we are all young at heart,and talking about RA is like we are our grandparents ,this hurts that hurts ,I find myself getting embarrassed,so I shut up and chuckle at myself for being an old person when I know inside I'm not lol , lol the stupid things we do . Good luck lovely.

Soft hugs

Angie xx ?? xx

[Sue8 in reply to minxy1960]

exactly Angie and also I am the mum I should be listening to them not the other way around.

[SaraF]

Sorry your feeling so rough, and totally understand how you are feeling. I hope that they are able to look into your meds for you on your visit and that they might give you alittle bit of a break. Do you take an anti-inflammatory as well as mtx and pred?

Does the chemist not offer a delivery service? or is there one you could swap to that would?

Having a scooter is a great help to me, was something that took me a long time to get my head around and also the looks you can get when on it but its my saviour, i hope that i wont be using it forever but for now if it helps, i'm using it. Should you chose this path again i wish you luck, there are certainly everywhere where i live in charity shops, ebay etc

I send you massive hugs for the day and hope that things brighten for you soon. Take Care x

[Sue8 in reply to SaraF]

Thank you, I am fillinf out some forms in th echemist for them to get my script and put it all together. They do a delivery service but not sure on criteria so going to ask.

[cathie]

So sorry that things are so hard. Have you discussed anti-tnf with your consultant? Its well worth consideriing. Good luck XX

[Sue8 in reply to cathie]

what is this?? I am newly diagnosed (last Oct) so I know they try other things before the biologics, I think that's what they are called.

[Hidden in reply to Sue8]

Hi Sue

You're right, the anti-TNFs are a type of biologic drug used for RA. As Cathie mentions below the NICE guidelines state you must have tried at least 2 standard DMARDs (including methotrexate) and have high disease activity before they will consider you for the biologics. I hope your rheumatologist is able to make some suggestions on Tuesday. Methotrexate is commonly prescribed in combination with one of the other DMARDs so this may be an option for you to help get the RA under better control. We do have lots of information about the standard DMARDs and biologics on our website if you did want to look at some of the possible options: nras.org.uk/about_rheumatoi...

We also have an article all about combination therapy that might be of interest: nras.org.uk/about_rheumatoi...

I hope things go well at your upcoming appointment. It would also be worth asking for a review of any pain medication you're taking to see if there is anything else they can suggest to help with symptom control in the meantime.

Kind regards

Sarah Kate

NRAS

[cathie]

The nice guidelines say they have to try the dmards first. It took me 2 years to get the biological a ( anti tnfs). It's a good idea to read up on them and NRAS have lots of info on their site. Good luck

[alibonura]

so sorry your having a bad time this disease is horrible and i can relate to everthing ur saying, must be even harder with younger children,

sending you big hugs and hope you get a break from pain soon xxx