Rheumatoid Arthritis

[RachelAlexAndSam]

Hi Everyone,
It's nice to see this thread continues even though there is a lull every now and then. I hope everyone is well and not in any pain!

I was just reading over some of the old posts and realised how far I've come since I started medication. I remember being quite scared to start the medication, but the impact it had on my life was almost instantaneous. Best decision I made.

(T - I can't comment too much on how medication will affect your other conditions. But I can say that the medication is so effective at relieving the pain. Your doctor should be monitoring you closely when and if you start any medication so they should pick up ay problems straight away. I hope you can get some relief without any problems.)

I've been on MXT since before Christmas. I'm now on 20mg once a week and I don't get any side effects from it. I used to feel a bit "hung over" the next day, but that doesn't happen anymore. I'm still on Pred (reducing to 1mg/day tomorrow) and I will hopefully be off that by July. I hate the weight gain and skin problems with Pred. Can't wait to finish it. What I'm worried about is the pain coming back when I do stop it. I do still get some break through pain in my hands and feet (nothing like it was before the medication though), but I'm scared that it will get really bad. BW and Babyjoy, I know that you both have been on Pred. Are either of you on it now? Have either of you stopped and had all the pain return?

My little boy turned 1 in April and is now walking. Stopping breastfeeding didn't effect his relationship with me. He's such a mummy's boy. I love it! Maybe he has some memory of breastfeeding. Who know's! My daughter still asks me if my arms are sore, but it's so lovely to say that I'm fine and can pick her up for a cuddle. The best thing is dancing and jumping around in the loungeroom with both my kids. I was honestly at a point where I thought I would never be able to do that. But we do it most days!

I love reading about how you're all doing. I hope everyone's well.

Rachel

[butterfly_warrior]

Rachel, I'm still on prednisone, and I'll be on it at least until I'm 12/13 weeks pregnant and then I'll start to wean off... maybe... I was able to stop it completely after the first time I used it, and I have to say that I was without pain for quite a while. I did eventually need to start using NSAIDs again, and then eventually back to prednisone once we began IVF, but I did have quite a long time without needing the drug at all.

In case people haven't noticed the subtle change in my sig... I'm just over 7 weeks pregnant from our first ever fresh transfer... was our 5th IVF transfer all up. that this one is super-sticky!

BW

[RachelAlexAndSam]

Fantastic news!!!! BW - I am so happy for you . Am sending you lots of good vibes to get you to the magical 12 weeks. I hope all the RA pain goes away soon with the pregnancy.

Thanks for the info on your experience. It's good to know that I hopefully won't go back to the level of pain I experienced before medication. The niggles are there, but hopefully won't get worse. At least I might be able to lose some more weight with the reduced dose of Prednisone.

Hope you're feeling well BW and giving into any cravings!

Hope everyone is well and not having any horrible RA pain.

[Kaeli]

Hi All

I am over in the UK and have developed an artritic condition sice having my second child. In short at 6 weeks pp I got a severe pain in my hip, next day it was my shoulder, then my wrist and the list goes on...4 weeks later I have seen a rheumy who has confirmed it is arthritis...at this point don't know if it is viral or rheumatic, but I have a significantly high RF.

I developed Hashimoto's disease with the birth of my first daughter, so it looks like I may have a prevalence for autoimmune diseases (!) - no more kids for me!

Anyway, I am taking diclofenac and have had a steroid injection. THis is managing the pain, but it is still pretty bad (at least I can move, I was unable to pick up my baby or get downstairs for a while).

My question is - has anyone found that giving up breastfeeding can actually ease the flare of the illness? I have read the prolactin is inflammatory and could therefore be a contributing element to RA?? My daughter is 9 weeks old and whilst I would HATE to give up feeding if it didn't help - I am at the moment not a v good mummy to both my daughters as the pain is quite limiting (and making me v grumpy!)

Hope you are still posting here - it is one of the best threads I have found, and it is so nice to find people who actually understand the level of pain this can cause.

Kaeli xx

[butterfly_warrior]

I'm still around, Kaeli. I don't think I can help at all much as I hadn't heard anything at all about prolactin making arthritis worse. I'd be waiting until you are absolutely certain that this is the case before you wean. It can be hard to get the medications you need right, and things are limited while breast feeding, but there are medications that you can take - it's just a matter of finding them and getting the dosage right.

Hang in there - it was bad enough trying to get the balance of medications right without having little people to care for at the time!

As for me... coming up to 24 weeks pregnant, and it looks like my arthritis is finally going into remission! I'm weaning off one of my arthritis meds (salazopyrin) and sticking with the prednisone for now as the prednisone is slightly safer while breast feeding. I'm hoping to be off both, but only doing one at a time.

BW

[RachelAlexAndSam]

Hi Kaeli,

I'm still around too. Hope you're feeling ok. RA is so horrible. When you have to look after 2 kids it all can seem impossible. My story is similar. My second baby was about 8 weeks old when I started having random pains that I kept putting down to breastfeeding in strange positions and kneeling on the ground a lot. When it got so bad that I was screaming in pain one night I finally got the diagnosis and was referred to a rheumatologist. He was fabulous and was supportive of my decision to breastfeed for along as I could. He gave me Mobic, an anti-inflamitory that worked enough to take the edge of the pain. It was safe during breastfeeding. I did loads of Internet searching for some answers and found a few sites claiming that Prolactin was a cause of inflammation. But there was nothing solid so I can't comment too much on that either. I heard a few stories about women who were suffering with RA, but had it disappear after they weaned. My little boy got to 8 months when I finally had enough of the pain. I had a big flare and couldn't raise my arms at all. So painful. I burst into tears in my rheumatologists office and he put me on Prednisone straight away. The relief!!!! It was amazing. I continued to breastfeed a little bit but was weaning my baby. I was completely devastated about weaning him. (You may have seen some old posts about that if you have read through this thread). I felt so guilty. But everyone in this forum was fabulous and helped get me through it. I started taking Methotrexate and reducing the Pred until I finished with it this July just gone. So now its just the MXT and follate to stop the mouth ulcers. I am a much happier person. I still get break through pain, but I can handle it now. It doesn't stop me from running, jumping and throwing my kids in the air. Very Happy!!!

So I guess (after all that!) I'm trying to say that I know what you're going through and my advice is to find out what medication your rheumy is happy to give you while you breastfeed. If you want to continue of course! If the pain is too much and you need stronger medication that isn't safe, my advice is to wean. As horrible as it is, you need to be happy so you can take care of your kids. But I wouldn't wean just to see if the RA goes away. There are definitely options out there.

Hope it goes well.

BW - Great to see that your pregnancy is progressing well and that the RA is going into remission for you! Hopefully it will never come back. Enjoy the next 16 weeks. It's one of the best times of your life. I'm really happy for you.....

[LenaB]

HI everyone- I came across this all of your posts as I googles RA and IVF and was hoping people may have some advice for me.
I was wondering if people may have some insight or had some experience in what their treatments were.
Me: have RA so I know I have immune issues but I work with and RE who does not seem to think that this has anything to do with my 3 failed IUI's, 2 failed IVF's and now 2 failed FET's. I tend to think that the RA has something to do with it since I do notice that my RA tends to act up more during the second half of my cycle. My RE however does not think it is a cause of infertility and really only has to do with m/c. I tend to think it can cause both (but just my opinion).

When I am not doing treatments I take enbrel which through reading many things I noticed that has helped others with immune issues - I did use during one tx which did not work but my RE prefers I do prednisone during that time but only tells me to use what I think I need to be on.

What dosage have people been on for prednisone or steroids during their treatments? (I used 15 mg this last tx and although very minor I noticed some of the pains starting around 6dp3dt.)
and/or
Any other courses of treatment that people have used that you feel may help?

Any help is appreciated since I meet with my RE again on Tuesday and want to be able to come with some more information. If there was anyone else closer I would change but he is it.

Thank you so much for any help!
Lena