Newly diagnosed, so many questions!!!

Hello there,

I was diagnosed last month, after giving birth to a wonderful little girl last November my symptoms peaked in January to what my Doctor described as a 'nasty flare'.

4 weeks ago, I saw the consultant who started me of on combination of methotrexate, sulfasaline and hydroxchloroquine (also cont on naproxen), also he gave me a couple of steroid injections which has made a huge improvement.

I have read so many positive reports on Biologics (is that right???) and although I did ask my consultant he replied that the meds he was trying first worked very well. I suppose these biologics must be expensive.

Can anyone tell me, do I have to try everything else first? how expensive are these drugs?

Also, anyone on the combination I'm on, how did it go?

I'm due to start back at work in August, I love my work but am concerned how I will cope with family, travelling (driving is a bit tricky) and work.

I have really enjoyed reading positive blogs, they are such an inspiration, especially the lady who mentioned she was out dancing the previous night and was then enjoying her garden.

Will I be able to go dancing again? wow that would be amazing :)

Sorry, last question, coping with my baby? now she is getting heavy I worry that when my steroids wear off how on earth can I lift her, when she starts crawling, what if I can't keep up?

Many thanks for taking the time to read and if you are able to reply!

20 Replies

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  • hi.. at least several hundred pounds per treatment.(bioloogics/ anti tnf). some are £400+, hope you will one whos symptons may sttle a few months after pregnancy/, some people do but with some people pregnancy is both the cause and start.. there are lots of young mums on here who can help and avise.. I wish you all the best and take my advice dont over push your self,,,

  • Thanks Summer, I'm chilled out about it today!

    Thats a good positive thought, that it may settle with hormones :)

  • Hi Wiliby :)

    Welcome to HU and congratulations on the arrival of your baby daughter :). Your lead up to a diagnosis of RA was very similar to my own although many years apart. Here's my blog nras.healthunlocked.com/blo...

    I think you are on a really good drug regime and methotrexate has for many years been the gold standard disease modifying drug used in the treatment of RA. The current practice is to treat the disease aggressively at the outset to try to bring things under control as quickly as possible and avoid long term joint damage. The steroid jabs help to control the symptoms of the disease such as pain and inflammation but do not alter the course of the disease. They do however help you to get over a bad patch whilst the other drugs start to work. This can take 3-4 months.

    The biologic drugs are used only for moderate to severe disease which can not be controlled by the type of drugs you are currently taking. Biologics are not suitable for everyone and majority of people are controlled on less toxic treatments anyway. Please don't feel that you are 'missing out', the drugs you have been given will probably work well for you. If they don't alternatives will be tried. There are certain criteria to be met before Biologic drugs are added and it is usually at least 12 months before that point is reached.

    For now please don't worry about returning to work. I am sure you will see a very positive difference once things kick in. Try to stay positive and enjoy your little girl whilst she is exactly that ... they grow up so quickly! I have had four children since starting with RA and each has been a real blessing. Very hard work but you cope, you adjust and anyway as little one grows, eats more and gets heavier you will be feeling lots better :)

    RA treatments have come on in leaps and bounds and it is no longer the disabling disease it was over 15 years ago. Be re-assured and get those dancing shoes out!

    Keep posting and have a lovely weekend :)

    Lyn x

  • Thanks Lyn, I won't be giving my consultant a hard time this week now!(no moaning about not getting a biologic)

    Your right about the improvement over the past few years and for that I should be thankful :)

  • Hi, I was diagnosed last September but had my last child in 2001 so don't think there is a correlation although it was a horrendous pregnancy and I was very ill for most of it. Sadly I'm not a young mum as I'm 43 and my children's ages range from 27 down to 9.

    I'm on the same combination of drugs as you; methotrexate, sulfasalazine and hydroxychloroquine. I've been on them since September but my RA is still progressing quite aggressively although I'll never know how bad it could have been if I wasn't on these drugs. My Rheumatologist now wants to escalate my treatment to Anti-TNF's but had to wait until I'd been on the combination DMARDS for at least 6 months. I'm seeing her on Monday to begin the process but not sure if or when I'll get them as I know they're expensive.

    I went back to work 2 weeks ago, having been off sick since June last year. I was petrified as I didn't know if I could manage the work or the driving too. I've taken a part time job share as I knew I couldn't do full time. So far, I've managed ok. I have been very tired and needed pain meds to get through the day but I feel better mentally and emotionally (as well as financially.)

    I dragged my husband kicking and screaming into the 21st century and attempted to share the load at home in the evenings and weekends. I'm a bit of a control freak so I've probably found this harder than him.

    I think we all have good and bad days and it's just learning to find the balance and not to overdo it when we feel good and to rest when we feel bad.

    Wishing you lots of luck with the combination of drugs and hope you get more good days than bad ones.

    Ann

    x

  • well done on going back to work after that break did you find it scary.. I did after only 2 months off?, and how were your coleagues were they supportive?

  • Thanks. I changed jobs as my last employers made me feel terrible. It's early days yet but so far so good at new job.

  • Hi Ann,

    sorry to hear the meds aren't working so well, good luck with the next lot! I think it is encouraging that you are still managing to work.

    As for housework, it's hard being a control freak I know lol, my poor husband has also (after 20years together) become a lot more domesticated :)

    I am getting good days but only now started to appreciate them rather than feel sorry for myself...

    Oh and I'm an oldish mum of 38 with an 11year old son already...

    Hope all goes well for you, I'll be logging in to see how you progress

    Good luck

  • Hi Wilby,

    What Lyn said really!

    Also, I've been on methotrexate and hydroxychlroquine since 2008 and it's working for me. I haven't got kids but I do hold down a VERY full time job and most of the time (outside of flares) I'm fine... and I can pick up my very overweight moggie without any trouble ... so while I know I shouldn't compare your lovely daughter to a cat, hopefully weight-wise the picking up might not be a problem once the drugs kick in. They can take up to 3 months to work though so don't despair!

  • Your poor moggie! thanks for that I needed that giggle :)

    Can I ask how often you get flares and how long do they normally last?

    Glad to hear your meds are working and your working full time, that cheers me for sure :)

  • I seem to get flares completely randomly and they last anything from a few days to a couple of weeks. I've sometimes had to have a day or two off because of one but never more than that ... so far! I can go for months and months without any flare and pretty much symptom-free, and then suddenly one starts! Still, months and months without is good!

  • Thats amazing, I pretty much thought it would be like a constant flare! oh my gosh, I can't begin to tell you how much that cheered me up! (again)

    Thank-you :) :)

  • Hi wilby & welcome, I live in Ireland, I started off with plaquinil (hydroxclor?) quickly by methotrexate increasing to final dose 20 mg per week, I was on steroids for 2years 5mg. I am now luckily on two injections a month of humira as well as the others, which has given me back my life almost as good as before including fair long walks, and fairly active life, working week on week off. Try not to be frightened, there is a lot of information to take in, my best advise is to take each day as it comes, enjoy the good ones, and if you have a bad one remember there will be lots of good ones to follow, I have danced again as I thought I never would, and walked distances too, looking forward to keeping in touch :)

  • Wow, thats so good to hear (dancing and walks)

    I am starting to enjoy the good days and I was so very happy when I opened a tin of tuna fish all by myself!!!lol

    The things we take for granted....

    thanks Gina, all this positive feedback was just what I needed :)

  • Hi Wiliby and welcome, I had RA prior to having my child 17 years ago but unfortunately didn't get a proper diagnosis until 12 mths later. I also had it through pregnancy and very bad afterwards, (if you read some of my bloggs you will know more)

    Being diagnosed these days gives you a much better quality of life, don't spend your time worrying about the RA just do what you can when you can.I know how you feel as I couldn't do a single thing for my son the RA had completely taken control,but, as I say that was many years ago and things are different now.

    You seem to be on a very good combination of drugs and in time they should work and if not there's plenty of others these days.

    Spend quality time with your child and like lyn said make the most of it, my son turned 16 last week and I just don't know where all those years have gone.

    Don't be afraid to ask for help either, if someone offers to do some housework, get some shopping or even just make you a cuppa let them do it so you can spend time with you child.

    Take care, have a positive attitude and you will be fine.

    mand xx

  • Thanks Mand, I read your blog, you've had a tough time, I'm lucky my doctor picked up on it so quickly.

    I'm try not to worry constantly, it's hard not to, just the shock I suppose but today although not feeling so good I'm starting to feel more positive.

    Swollen hands are preventing me waffling anymore, but thanks for your reply, this site is such a support!

  • Hello there and welcome to the group!

    My situation is very similar to yours - I was diagnosed a month or so after my son was born. See my blog here: nras.healthunlocked.com/blo...

    I had the same concerns as you but I managed. I use my forearms a lot for lifting my little ones, but now they are big enough to hang on!

    Some tips - if you can afford it buy a buggy that is light to steer - I got a Phil & Teds and it's steering is so light I can manage it one handed if my pesky wrist is particularly sore.

    Changing nappies - get one of those over the cot changing mats or just do it on a table so you don't have to get down on the floor.

    Don't get loads of grow suits or vests with poppers - go straight to cute little PJ's and look for some of the vests that have ties instead of poppers - much easier when your fingers won't work.

    Carrying your car seat - hook it over your arm so you're carrying it in the bend of your elbow rather than straining your wrists.

    Try not to worry about keeping up with her once she's on the move - stair gates anccross doors will keep her where you want her!

    In terms of treatment - I'm on exactly the same drug combo as you. Methotrexate is considered the 'gold standard' treatment for RA but it can take 12 weeks to build up in your system so it reaches an effective level - my rhuemy has added in Hydroxychloroquine and Sulfasalazine in the last few months.

    I went back to work part time when my son was nine months old. I work 3 days a week and comute into London and sometimes it's tough but I have learnt to pace myself and I am fortunate to be able to work at home sometimes too.

    Feel free to send me a message if you want any more tips on being a yummy mummy with RA - it is possible to fit into both boxes! I just did some baking with my daughter - I may not be running through the woodland with them but we find ways to have special times together.

    Being diagnosed can be a strange and bewildering time - especially when you have small children to deal with too and your whole life ahead of you but with a positive attitude and a willingness to adapt you can lead a virtually normal life - I am, two and a bit years after diagnosis.

    Sending you positive vibes.

    Ju x

  • Hi there ju, so much in your reply to wiliby rang bell's with me from many years ago, 17 infact. I too remember struggling with those damned poppers on suits I would press and press and still they wouldn't close! I also remember adapting to pick up my son with my forearms and getting him to hang on. The strange thing is if I had been writing this a few months ago I would have burst into tears by now as I would so often feel that the RA had robbed the special times with my son. I too would do the things that didn't require to much energy like sitting and reading or teaching them words etc. leaving the others to run around and get the energy out of him. It all seems so long ago now I just wish I had the help then like there is today.

    Thanks for listening and take care, but most of all carry on being a great mum despite RA.

    mand xx

  • thanks for that Ju, it's good to hear you managed to get back to work, I love my job and worried also that I wouldn't make it, so thats a boost!

    Poppers are impossible, trying to find zips or velcro is impossible but managed to find some PJ's. Haha even taking her bottoms off using my teeth (only 1st thing in morning) amuses her!! shes's an angel. I managed to get a 3 wheelers similiar to a phil and teds, much easier.

    I am positive today for the first time since being diagnosed, hearing stories like yours help for sure :)

    Thankyou

    x

  • Hi Wiliby -- I'm in your boat. Gave birth to my third child in September, thought I was going crazy for three months, and was diagnosed in January. I started on Mx and Enbrel and got my life back, mostly. Be hopeful that it will get better once the drugs kick in. You need an understanding partner to help out until you feel better. I'm learning that I'll probably never go at full speed again in my busy life, but you make adjustments as need be. Slept for 11 hours last night and could still use a few more.

    Little things that help me -- hot showers, heating pads, heatable mittens and slippers. My almost 7 mo. old is still sleeping in my room to save trips down a cold hall at night. I have full service baby stations upstairs and down to reduce stairs.

    When I feel good, I stop and embrace every moment of it, but don't overdo it. Learned that the hard way.

    It gets better and it will be ok. It may never be perfect or what you had wanted or imagined, but that's all overrated anyway. ; )

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