What next?

Lozzy

Niamh had her second steroid injection in her knee a month ago, the first having worked for nearly 8 months. It has helped but not by much. She's still limping, not able to walk far and is in pain.

She is back at the consultant next week but does anyone have any idea what the next step might be?

dreamdaisy

Steroids are unpredictable things, sometimes they work and sometimes they don't. My suspicion is that the consultant may consider the next step up drugs-wise, which is usually methotrexate. I can't remember if she has already tried this, I'm sorry. :oops: Please let us know what happens at her appointment. DD

Lozzy

Hi, thanks for getting back to me, no she's not been on methotrexate.

dreamdaisy

Getting back is no trouble, this is surely a tough time for you both. I was a very sickly child and, as an adult, I now have some idea of what my Ma went through. Life is far from easy at times, no? I am not a doc, nor an expert in JIA etc but I wouldn't be surprised if this is the next step. We'll be here to support, OK?

Take care. DD

Bethliz

Hi Lozzy

I am in a similar position, my wee girl had her 3rd injection a couple of weeks ago, the 1st one worked brilliantly, the 2nd one was given when she wasn't struggling in any way for some strange reason so can't really comment but after this 3rd injection she is stiff in the morning, takes about an hour each day to get her properly moving then she is fine. Almost certain methatrixate is what is going to be suggested but I'm hoping not! Take care let me know how you get on x

Lozzy

Well she has minimal issues with her knee but her left ankle is starting up so that explains why the Ibuprophen was helping but I still don't think her right leg is quite right so I'm going to give the physio a ring today.

dreamdaisy

Oh dear, your poor wee girl, that's not on is it? Arthritis of any type does this, it can spread over time and start affecting other joints. I hope the physio can help - did the rheumatologist suggest any new medication? DD

Lozzy

Another joint injection

Bethliz

Hi Lozzy

Just sending you and your daughter a big hug I am feeling every bit of your worry and anxiety as we seem to be at a very similar stage of development and treatment. take care x

dreamdaisy

Ah, I see. Well, I think that has to be better option at this stage rather than putting her on methotrexate; although that can be a very beneficial medicine it is a strong one, so let's hope the next joint injection does the trick. DD

Lozzy

Joint injection next Thursday.

stickywicket

I hope it helps, Lozzy. I'm not sure, as I've been away, which Thursday you meant. If yesterday, I hope you'll soon see an improvement. If, next Thursday - well, I hope the same. I am thinking of you.

Lozzy

It was today thanks. It went ok but her right knee was flaring too so she ended up having the steroids put into both her right knee and ankle. She only had issues with one joint for 9 months and has had two more flare in 4 months :-(

stickywicket

Thanks for the update. I hope the steroids help. Sometimes a little boost is all that is required. Let's hope that's the case here.

Lozzy

:-( think her left ankle is flaring now. Back to see her consultant next Thursday. Her nurse said they might have to put her on a preventative medication, I'm guessing methotrexate

stickywicket

I'd guess that, too, Lozzy. It's a usual start. How do you feel about that? Most people - both adults with arthritis and parents of children with it - feel a bit apprehensive at first. That's normal but, for those of us for whom it works, it does a very good job. I hope the appointment goes well.

Lozzy

I'm dreading it, from what iv seen they favour the injections which I know I will have to do. Add in the blood tests and I know she's going to end up hating me.

stickywicket

Oh Lozzy, what an awful pickle to be in! As if the arthritis itself isn't bad enough!

I'm not sure about giving meth by injection straight off. Certainly it's not the usual proceedure with adults. I'm not sure about small children.

The blood tests will be necessary but, if you haven't had one yourself for some time, they're nowhere near as bad as they used to be. Smaller needles make them much easier to tolerate.

Have you read any of Arthritis Care's publications about children and all aspects of arthritis? http://www.arthritiscare.org.uk/PublicationsandResources/Youngpeopleandfamilies There's loads of info and maybe something in there about coping withj injections.

Lozzy

From what iv over heard from them talking to other parents after the joint injections they prefer the injections as there are less side affects than when taking orally.
It's not the pain that bothers her/me, she hates having to be held still to get it done, she freaks big time.

Il have a read of that thank you.

stickywicket

I hope it's a good appointment tomorrow. I shall be thinking of you both.

Bethliz

Hi LOzzy

Have you now started using mtx? I was hoping my daughter would be given embrel instead, as my other daughter also has very significant needs, but we have been refused funding. :? I just have to hope and pray mtx will not be as bad as all the literature suggests. I also dread the idea of holding sarah down for injection. Considering trying to do injection when she is asleep. I know she will wake in pain but at least the injection will have been done at this point! I would be very interested to hear from anyone else who has tried this and how they have got on!

Kittkat

Beth I don't have a child with arthritis nor am I child but I just want to say try not to panick about the mtx. Hopefully your daughter will get on with it just fine she will be monitored etc. There was an article in a newspaper I saw about a little girl who was doing really well on methotrexate she was in a lot less pain and running about she was 6. I wish I would have started the mtx earlier myself.Take care x

Lozzy

Went to the oppintment in October and the doctor could find no active arthritis but said it could just be starting, watch and wait he said.

As of last week she was still limping and her left ankle sometimes looked swollen so had her back today. No swelling but he could see her limping and she was very reluctant to let him examine it so he said its obviously niggaling so she's been put on the list for a joint injection which will probably be next month and iv been given some info on metho since this will be her 4th joint that's been affected.

Lozzy

Well we went for the steroid injection on her ankle on Thursday and she ended up with her right wrist being done taking her to 5 joints affected now. She's starting methotrexate in the next few weeks.

stickywicket

At least the steroids should ensure a good Christmas, Lozzy. I hope the methotrexate assures a much happier future too. It works well for me :santa:

westkip

Hi Lozzy
I read your post and your anxiety sounds very familiar. My 12 year old daughter was diagnosed with juvenile arthritis in August. Following 11 joint injections in one go she went straight on to methotrexate. I was very anxious about it, and on the day she was due to start I couldn't think about it without having a tear in my eye (hidden from my daughter). She started on pills but hated taking them and they were not being effective enough so she is now on injections. I have to say she is coping really well. Although initially with injections she seemed really washed out the day after this wore off after a couple of weeks. Also we have had no major flare ups ( fingers crossed/touch wood!). So on the whole it has not been as bad as I anticipated. Obviously everyone responds differently, but I just wanted to let you know it can be positive and it does get better after that initial fear. I hope it all goes well for you and your daughter.