Desperately worried and need some help...

banvap43

Hello,

I've just found this site for the first time today and I would really appreciate any help and support (sorry about the length of this message!).

My wife is just 29 and we had our fourth child ten weeks ago. When the baby was three weeks old, she began getting joint aches and pains (knees, hands, ankles, shoulders - moving round one by one) and this has intensified so that the pain is now excruciating. Her GP gave her some pain relief and then referred her to rheumatology at our local hosp. The consultant saw her just over two weeks ago and gave her a steroid injection and said that he thought it was a reactive arthritis following the pregnancy and would treat her as such.

The injection did not work, so we went back last Friday and the same consultant then said he thought it was Rheumatoid Arthritis. She was started on Methotrexate and given a second steroid injection. This provided limited relief, but she was in agony again today and went for a third injection this morning.

I initially took some holiday from work to help relieve the burden; however I am now back at work and having to leave her each day. Some days she is fine, but others (like today) she can barely lift the baby up and feed him. We also have a twenty month old toddler who runs rings around her. Support from family is limited and my wife doesn't drive (I can take the kids to school, but the journey home is a two mile round trip).

My wife is usually very active and does as much as possible with the children - supporting them in every way. Now she is massively frustrated that she can't do everyday tasks (and feels she can't care for her new baby properly), worried that the medication isn't working and terrified what the future may hold.

I can't help feeling that we were dismissed a bit by the hospital and when I try to ring with some questions, communication is very poor. I just wondered if anyone can answer a few of our questions? I.e.

- after three steroid injections, is she likely to get some relief? And if so, to the point where she doesn't feel much pain?
- has the consultant jumped the gun by diagnosing her with RA, just ten days after initially diagnosing reactive arthritis? And again, if he has, is post pregnancy arthritis something anyone is familiar with and can it go away?
- what may the future hold? With the Methotrexate is she likely to go back to normality, because I know disability would absolutely crush her?
- when the doctor says RA can be 'managed', does this mean she will still always be in pain, or is the idea that any affectation will be minimal?

Sorry for all the questions, but I am so worried about her and so frustrated that I have to leave her with two tiny ones when her movement is restricted and she is in lots of pain. Without sounding too dramatic, we are struggling to see a light at the end of the tunnel.

Please help.

dreamdaisy

Helo banvap43, I am not a member of the Helpline, just an ordinary forum member. I am so sorry about your current predicament - please re-post on the Living with Arthritis part of the forum where we can answer with messages of support for you and your wife - I am sure the Helpline will reply soon. I wish you both well. DD

stickywicket

Hello banvap43. I’m not a member of the Helpline team, just an ordinary forum member who has had RA for over 50 years. This must be so distressing and frightening for both of you. However, let me assure you that, far from being ‘dismissed’ by the hospital, they have been incredibly on the ball. It’s not unusual for people to have to wait over 12 months for a ‘proper’ diagnosis of arthritis. It can be a very elusive thing. The diagnosis of possibly Reactive Arthritis/possible Rheumatoid Arthritis will make no difference to the treatment. The same meds are used for both. Methotrexate is the usual ‘starting med’ but, unfortunately, it can take weeks to kick in.

Let’s look at your questions.

1. Steroid injections. These work for some people but not others. There’s no predicting who they will/won’t help.
2. As I said earlier, precise diagnoses are difficult and can take some time but the same meds are used for both ReA and RA.
3. The future? I wish we could predict the future. If it’s ReA it might well go away but when, exactly, is in the lap of the gods. If RA it’s unlikely to go away but it can be controlled well with the right meds. Some people with RA lead virtually normal lives though it won’t seem so looking at these forums because those leading normal lives don’t come here much and, indeed, why should they?
4. ‘Managed’ is a difficult word to interpret. There is no predicting who will find the meds help so much they can carry on much as before and who will find the going more difficult. Your wife has been started on a DMARD (Disease Modifying Anti-Rheumatic Drug) quicker than anyone I’ve heard of so her chances must be better than most.

It’s common for RA to flare after a pregnancy. I was diagnosed at 15 and mine flared after both my pregnancies but was got under control again. It’s just a matter of hanging on in there. It’s very, very difficult dealing with arthritis plus a newborn not to mention a toddler too. Take any help on offer.

You might find it helpful to read through some of Arthritis Care’s booklets about different forms of arthritis, treatments etc. http://www.arthritiscare.org.uk/PublicationsandResources/Listedbysubject I expect someone from the Helpline team will be along soon.

helpline_team

banvap43 wrote:

Hello,

I've just found this site for the first time today and I would really appreciate any help and support (sorry about the length of this message!).

My wife is just 29 and we had our fourth child ten weeks ago. When the baby was three weeks old, she began getting joint aches and pains (knees, hands, ankles, shoulders - moving round one by one) and this has intensified so that the pain is now excruciating. Her GP gave her some pain relief and then referred her to rheumatology at our local hosp. The consultant saw her just over two weeks ago and gave her a steroid injection and said that he thought it was a reactive arthritis following the pregnancy and would treat her as such.

The injection did not work, so we went back last Friday and the same consultant then said he thought it was Rheumatoid Arthritis. She was started on Methotrexate and given a second steroid injection. This provided limited relief, but she was in agony again today and went for a third injection this morning.

I initially took some holiday from work to help relieve the burden; however I am now back at work and having to leave her each day. Some days she is fine, but others (like today) she can barely lift the baby up and feed him. We also have a twenty month old toddler who runs rings around her. Support from family is limited and my wife doesn't drive (I can take the kids to school, but the journey home is a two mile round trip).

My wife is usually very active and does as much as possible with the children - supporting them in every way. Now she is massively frustrated that she can't do everyday tasks (and feels she can't care for her new baby properly), worried that the medication isn't working and terrified what the future may hold.

I can't help feeling that we were dismissed a bit by the hospital and when I try to ring with some questions, communication is very poor. I just wondered if anyone can answer a few of our questions? I.e.

- after three steroid injections, is she likely to get some relief? And if so, to the point where she doesn't feel much pain?
- has the consultant jumped the gun by diagnosing her with RA, just ten days after initially diagnosing reactive arthritis? And again, if he has, is post pregnancy arthritis something anyone is familiar with and can it go away?
- what may the future hold? With the Methotrexate is she likely to go back to normality, because I know disability would absolutely crush her?
- when the doctor says RA can be 'managed', does this mean she will still always be in pain, or is the idea that any affectation will be minimal?

Sorry for all the questions, but I am so worried about her and so frustrated that I have to leave her with two tiny ones when her movement is restricted and she is in lots of pain. Without sounding too dramatic, we are struggling to see a light at the end of the tunnel.

Please help.

Hello,

Thank you for your enquiry to Helplines. I’m sorry to hear about the arthritis that is affecting your wife. It must be a very difficult time, just when the family work load sounds so heavy.

I see that other members of the forum have already posted to you supportive and thorough responses. I wanted to add to these by saying that if the rheumatology team have started her on methotrexate that shows that they feel that her arthritis is an inflammatory kind i.e. one which is associated with her immune system and this can take up to twelve weeks to begin to be effective and for the person with arthritis to show signs of improvement.

You’ve not mentioned blood results, but with some kinds of inflammatory arthritis the way rheumatology can see that treatments are beginning to work is often by seeing the inflammatory numbers dropping. However it’s not always easy to find the inflammatory evidence in blood results – and I wonder whether that’s the situation here?

Not everyone’s inflammatory arthritis responds to first line treatments – so if the response to steroid injections is not very powerful it can be quite a bit slower. If that’s the problem then it would probably be necessary for your wife to have quite a gentle time until she starts to see an improvement.

If her treatment takes time then it may be worth assessing her support needs. Both the GP and members of Rheumatology could help you think about these issues. You can contact your local social services to see if there is any support that they can give your family during this difficult time. There is an organisation that helps families to access appropriate support when parents have a disability or long-term health challenge. They are called the Disabled Parents network and you can access their website on the link http://disabledparentsnetwork.org.uk/ and their helpline number is 0300 3300 639.

Some information that you can download that may be helpful can be found on the link http://www.arthritisresearchuk.org/arthritis-information/conditions/rheumatoid-arthritis.aspx

I hope that this information is helpful to you and I would like to encourage you to contact us here on the helpline where you and your wife can talk things through with one of our helpline team. Our freephone helpline number is 0808 800 4050 (Open Monday to Friday, 10am – 4pm).

Best Wishes
Dawn