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Thread: Rheumatoid Arthritis

  1. #55

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    Hi Babyjoy, the tissue salts are more like a complementary tool, you get it at the chemist and it’s wholistic - well, that’s my understanding, anyway. I looked up the website and they state that it’s safe to take during pg, and it can really take the edge off a bad flare. Worth looking into, but since I gather they don’t like you butting web add’s up here it may pay to google.
    If you’re not happy with your rheumy, maybe it would pay to look around for another who is more prepared to look into alternative options? It’s your body after all, and it can take trial and error to find someone you can connect with. I knew I had the right one the day she said “if the sh** hits the fan…”
    I really hope you get pg so they can sort you out, or even better, go into remission too
    I'm putting this most recent flare down to lack of sleep - a 2 year old and a 5 week old who feeds every 2 hours doesn't leave much room for deep sleep, though I'm lucky dp is at home to do all the things I can't and let me get a bit of extra rest sometimes in between.
    BW, I was told that about plaquenil too, but when I asked the rheum she said they'd done some really extensive testing recently and she wouldn't hesitate to use it on pg women (she works at the rwh clinic as well).
    I really wish you guys well and hope things improve for those in pain
    xo


  2. #56

    Default

    Hi guys,
    Well, I'm feeling super guilty for my previous comments about my rheumatologist because he was fabulous today. Went through my bloods step by step, then we discussed plans of action if I get worse either before or after falling pregnant, and then even options once a baby arrives.
    We discussed all sorts of meds that you have mentioned and I didn't need to prompt him, all I said was, "what's my options?"
    He really is a great doctor and saved my life in 2005 when I was first diagnosed.
    He said plaquenil is not as strong or as effective as MTX or salazopyrin.
    The latter was his preferred choice if things get bad and I decide not to go down the prednisone route.
    He also said diclofenac - the voltaren, anti-inflammatory that I take now - has been tested to the nth degree and with his patients he has seen very little side effects, as opposed to drugs like mobic.
    We didn't really get deep into discussion about what's safe while breastfeeding because my toddler started playing up and I could see I was taking up his time, so at my next visit in April, I'll ask more. The other thing I didn't mention is that this rheumy is the only one north of Townsville which means he looks after all of Cairns, and every single town in between and out west, as well as Papua New Guinea (patients fly down specifically to see him). He wants to retire, but he has too many patients who would be left without help, and many of them young women having (or planning on having) babies!

    Now the good news... my blood tests were surprisingly good and my flare has settled. I now only have morning stiffness to contend with and as long as I try hard to stay stress-free, I know I can beat this thing - it's mind over matter!! (until winter comes along )

    I did a pregnancy test today and it was negative, so we'll just keep trying. It took me three months with my daughter, so perhaps we'll get lucky in the third month again.

    Hope you are feeling better soon Lara... can't imagine dealing with two littlies and flaring at the same time! My sympathies go out to you!

  3. #57

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    Babyjoy, I'm glad your rheumy pulled through for you! We tried plaquenil first because it's a bit milder in side effects than the others. I'm completely fine with the salazopyrin now, but I had a rough time trying to get myself up to the right dose - I'd get awful headaches from it. In the end I had to take it much slower than normal, and instead of taking a straight increase I'd alternate doses. When I was fine with one tablet per day, I'd take two one day, one the next and keep switching until that was fine, then I'd take two tablets every day. It's one of the biggest reasons that my rheumy insists I set my own dosage levels to what I need. Good to hear that the flare has settled!

    BW

  4. #58

    Join Date
    Oct 2007
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    Moorooka in Brisbane
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    Hi ladies,
    It feels like it's been a while. Babyjoy, so sorry to hear you had a flare. Glad it's under control. You're off the methotrexate aren't you, as you're TTC? Glad your rheumy has re-estanlished their place with you. They are important people I have discovered! Mine is wonderful even though I cried my eyes out when I went in last time. And it seems I will have a long relationship with him. There's not many out there though.
    I've been on methotrexate for about 6 weeks now (10mg once a week) and am feeling pretty good. No major side effects apart from a bit of nausea the next day. I'm down to 5mg of Pred a day. It did make me gain weight but Christmas didn't help either! My rheumy wants me off the Pred in the next 5 months. Hopefully I won't flare. I'm still having a small amount of pain in my feet, but the pain is nothing compared to the pain I had in my entire body 2 months ago. Glad I made the decision to go on medication. I'm such a better wife and mum.
    I'm still having issues with not breastfeeding. I really miss it. But talking to everyone on this forum really helped (thank you!!!). I also wrote everything down and sent a letter into a well known parenting magazine. They actually published it in January's edition! I actually had forgotten about the letter until someone pointed it out to me. I think I just needed to write it all down and do something with it. Once I had sent it, I forgot about it completely!
    It's great to read about other peoples medication as well. Gives me something to discuss with my rheumy at the end of the month.
    Hope you're all pain free. Good luck with TTC this month Babyjoy.

  5. #59

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    Hi everyone!
    It's been a while since I popped in. We're still not pregnant, but fingers crossed for this month! Flares are happening daily now... morning stiffness followed by the odd joint playing up during the day, then serious aching all over at night. By the time I get to bed and lay there really still, it feels like I have clamps on my ankles, wrists and knees and someone is tightening them. Fortunately my pain tolerance has improved over the past few years so I can sleep okay.

    WARNING TMI: The problem with RA and trying to conceive a baby is that ... um... certain sexual positions really hurt! My hips scream at me while my shoulders stiffen and knees crack... my moaning and groaning is not due to pleasure, it's because I'm in pain!

    I'm so lucky my DH is understanding.
    Hope you are all doing well... keep us posted! I'm signing off now...

  6. #60
    maddiesmom37 Guest

    Default I have RA...

    Hi there,

    I see this post is a little dated but maybe someone will still respond..I also have RA, and I'm sero-negative and have been going on three years. I have three children ages, 11, 14 and almost 16 and have had two failed IVF cycles and will be moving on to donor egg.

    My dh and I began our journey of IVF before I developed RA, and now I'm scared to stop my meds for fear of the pain that I will have without them (Enbrel, Methotrexate, and Plaquenil) I still have joint pain most days, although it is only unmanageable if I get sick with a cold or something like that..

    My children are from my first marriage and my dh very much wants a child of his own and feels empty without one. Right now I'm trying to get over my fear of stopping my meds and dealing with the pain as we go through an IVF cycle.

    My children are much older and able to care for themselves and I also worry how I will care for an infant and if I will be able to nurse as I did with my others or if I will be forced to go right back on my medications, so many worries!!! I agonize constantly over this and no one here understands what I'm going through, not IVF (especially donor egg!) We thought I would be a great candidate since I had had three children but we were very wrong! With an FSH level of 5, I failed miserably, and on my second try my FSH went to 35. At 35, I was told donor egg was my only option and by the time we were saving for it, I developed the RA and here I am.

    Since I'm sero-negative I keep thinking maybe some day the joint pain will just go away, but it has been three years and I started out on all the NSAIDS and now I'm on Enbrel so it doesn't look like it's improving any.

    Thanks in advance for listening to my ramblings!

  7. #61

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    MaddiesMom... I can feel your frustration, fear, pain and anxiety... it's all familiar to us women with RA or similar illnesses. I can only suggest that you try and stay positive that your IVF will be successful and that your RA will take a back seat while the baby-making process takes place... you might actually surprise yourself at how well you cope without medication.
    I have been off meds for eight months now as DH and I are also trying to conceive.
    I was terrified of how my body would handle it but I've coped amazingly well, and I've found new alternative ways of dealing with the pain when it strikes. I'm incredibly frustrated that we haven't fallen pregnant yet and my rheumatologist isn't happy about me being off MTX but I'm not giving up yet! I'm still working part-time and looking after an energetic toddler, and the pain doesn't go away fully, but it's managable.

    One idea for you might be to see a naturopath, herbalist or nutritionist to help you formulate the best diet for your needs. Or try some relaxation techniques such as Tai Chi (apparently it's great for RA but I'm yet to try it myself). Stress is one of my main triggers, which is why I suggest relaxation as a way of coping.

    There is definitely a fear of not being able to breastfeed so I can truly understand your anguish over this. In my case, I only lasted four months, then had to wean my daughter and go onto meds again. It was a very distressing time for both of us but in the end I was a better Mummy when I could move again! I'm going to be a lot stronger next time (emotionally) and stress a lot less (being my first child I worried about everything!) and hopefully will be able to nurse for a lot longer.

    I really hope you can find your inner strength again - after all, you are a superwoman having already raised three kids! - and that you are successful in having another precious baby. In the meantime, I'm here if you ever want to vent or chat!

  8. #62
    tmancuso Guest

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    Hi Everyone, I stumbled across this forum when goggling RA. I aqm 35 have 3 children 8 5 3. I have started seeing a spec regarding my sore wrists. It all started about 3 years ago when one knuckle on my left hand was a bit sore. It never bothered me just played up now and again.

    Now for the last year or 2 I have had sore wrists. Went to doc in Jan and wss told I had a positive Rheumatoid Factor. Off to see the specialist I went. One the first visit he was not too worried basically said we would repeat test in 3 months and to come back then.

    I saw him for second time this week. My sysmptoms are basically the same, sore wrists, one owrse then other. Mainly feel it when I pick up heavy things. Never had any evident swelling. My hands feel stiffish sometimes at night or if I have been using them alot. In the morning I think they are best.

    I notice they (my hands) go red when holding things like mopping or sweeping or even sometimes when driving. In summer they itched a little.

    On the second visit he suggested I go for a MRI with a dye to be injected. This will give him more clues. He doesn't know if this is the start of RA or not. He said one blood tests suggests it the others don't. If it is the start he would like me to start medication, which scares the hell out of me.

    I have PCO too so I am already at risk of getting diabeties and also heart problems. What do I do? Do I get a second opinion. He said if I start med now it would only be for a year or 2 and we would stop it now. Or of we wait it would mean med for a life time.

    This is all depending on what the MRI shows.

    If anyone has any thoughts that would be great as I am really worried and scared.

    T x

  9. #63

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    Hi T and welcome.

    I have both PCOS and the weird RA thingy... I'm fairly sure that the RA medications aren't going to impact on the PCOS in any way, unless you can't avoid prednisone. Prednisone is a steroid that does impact on blood sugar levels - it has created some problems with my PCOS, but we are able to work around that with a strict low-carb, low-GI, high protein diet.

    If you are not actively TTC you have many more options in terms of arthritis treatment than I do. I hope you find relief soon.

    BW

  10. #64

    Join Date
    Oct 2007
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    Moorooka in Brisbane
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    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

  11. #65

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    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

  12. #66

    Join Date
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    Moorooka in Brisbane
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    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.

  13. #67
    Kaeli Guest

    Default Newly diagnosed with potential RA and breastfeeding

    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

  14. #68

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    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

  15. #69

    Join Date
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    Location
    Moorooka in Brisbane
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    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.....
    Last edited by RachelAlexAndSam; September 28th, 2008 at 08:27 PM. Reason: Bad grammer!!!

  16. #70
    LenaB Guest

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    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

  17. #71

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    Lena, where abouts are you located?

    I'm afraid I don't know much at all about embrel, but I have been on prednisone for IVF transfers.

    The reproductive immunologist I saw prescribes a dosage of 20mg of prednisone after ovulation/EPU/ET, and doesn't reduce that dosage until you are out of the first trimester.

    I have to admit that I think that particular dosage of prednisone was interfering with some other health problems I have (PCOS - severely insulin resistant), and in the end I went with a dosage of only 10mg for the cycle that gave us the munchkin I am pregnant with now (after three early miscarriages). As my arthritis didn't go into remission as much as we'd hoped with pregnancy, I'm still on the 10mg I've been on since transfer... looking to start reducing very soon, at last!

    BW

  18. #72
    LenaB Guest

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    BW- I see an RE in New Hampshire.
    Thank you for the information and congratulations on your pregnancy!! I hope you are able to get off the prednisone soon!! It is nice to see positive stories and to have women who understand the stress and strains of dealing with an immune disorder while TTC or even after.
    I will be talking with my RE today about our next steps and hopefully he will be willing to look at different options for the next cycle. The hard part is everytime we do a cycle it all "looks good" but never ends up with a positive. I am still hopeful though and realize that it can take many times before it happens.
    I was just so grateful to actually read the stories and gain some hope from other women who are in similar situations. It is very hard to find anything out there on RA and infertility challenges.
    Thank you again!
    Lena

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