Drugs

I am new .. to this arena but have been fighting RA for the past 5 1/2 years - for my daughter who was diagnosed around 10 years old. We have refused to put her on biologics and tried every other method - changed her diet, tried acupuncture, sought alternative medicine ... all because we didn't want our little girl to experience any of the grave side effects. We finally gave in and allowed steroid injections into her body which helped tremendously & lasted for over a year. However, the last steroid shot she received in the hand was ineffective - by a novice doctor. In fact, it not only didn't relieve the swelling but also stiffened her wrist and weakened it more. My trust in the medical field has gone down even further .. :-( I am fighting for my daughter and the worry keeps me up in the middle of the night (hence, writing this) as I pray that I am on the right path to helping her - thank you for sharing your experiences on here in order to help others. You are all very brave to endure what I have read ... May we all find a "recipe" for a healthy body!

6 Replies

oldestnewest
  • I do hope you find a consultant whom you can trust. It makes all the difference. I have myself, very reluctantly, gone onto Biologics and they are working very well!

  • Sending hugs to your family.

    Jacqui

  • Hi there , it sounds like you feel quite isolated at the moment and it is great you have joined the forum.

    Have you heard of the JIA at NRAS website this has excellent information about current treatments for JIA. Here is the link : jia.org.uk/ .

    There is also information about family get togethers and art days which are organised regularly which you may be interested in.

    If you would like to talk about any issues you are facing on the telephone we have a helpline open 9.30-4.30 Monday to Friday 0800 298 7650. I hope this helps you.

    Take care Alison

  • I am sorry your daughter is suffering. Please don't be afraid of the biologic group of drugs. Personally for me I think they are much gentler on my body than any of the DMARD group of drugs and have given me my life back. Once any joint damage is done there is no going back. I'm sorry this sound harsh but I know I would not be able to function without biologics. Not as young as your daughter when I was first diagnosed but have lived with this disease and its many twists and turns for a long time. I was 19 and now 50 with one knee replacement done nearly 2 years ago. Living with pain and inflammation is so draining and if you can find the right drug it is so much easier. It is frightening with the biologics as there is not a 'lifetime' worth of safety data for them but I would not be able to live as I do without them. Farm

  • I'm sorry to hear your daughter has this disease. It's hard enough when you get the diagnosis as an adult & your parents are no longer around but it sounds, understandably, as though you're living it with her.

    I wonder if you're not in the UK, for two reasons really, you mention you're up writing (it's 6pm GMT) & you don't mention your daughter trying any DMARDs, here in the UK don't move onto biologics unless DMARDs haven't controlled us well enough.

    Steroid injections are odd, I've had two injected into joints, only one worked, & one general injection & that worked for one day a week later. So it sounds as though your daughter was like me & unlucky, less likely to be how it was admistered & by whom. it does sound as though you've either lost faith in the system somewhat, or would prefer your daughter not to need medicating, understandable again because nobody wants to think that they're having to need specialist med, at any age let alone a teenage girl who should be out with her friends enjoying teenage life. If it helps my niece was diagnosed around the same age as Zoe & responded well to DMARDS, though I must say she still need help at school & worked from a pc. Now at 32 nearly 33 & with young 2 children all she takes is the odd NSAID & has Epsom Salt baths for her feet when they're hurting (usually when she's worn high heels on the odd night out). She was fortunate but still her diagnosis was JIA not RA (or RD as you'll see here often some of us prefer Disease to Arthritis).

    Have you discussed diet with her, not as in losing weight, there are specific diets for inflammatory conditions which are known to help. Also exercise is really helpful to keep joints moving, maybe ask to be referred to Physio for initial help & recommended exercise routines, there's the thought use it or lose it works!

    It might be helpful to have a look at the our sister website for JIA jia.org.uk/, you'll find lots of useful info there. I hope we can help you here too, for support if nothing specifically JIA!

  • Have you considered the other side of the argument - what if the Dr's are right and your daughter suffers more joint destruction and other systemic problems because you chose to prevent her from having biologics and steroids? I was dx age 6 and was put on a steroid injection called A.C.T.H. 3x weekly. I've also taken MTX since I was 18. I'm now 52. Not everyone suffers from side-effects, at least not serious ones. I've no regrets taking these meds. My regret is biologics were not available when I was younger, hence I've ended up with joint destruction needing surgery. Hope your daughter finds an effective treatment to slow down her disease.

You may also like...