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Rheumatoid Arthritis Roll Call #2
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#1 Freckles

Posted 04 August 2011 - 01:39 PM

Time for a new thread folks. original.gif

Old thread is here.

Emma


#2 Guest_Zetetic_*

Posted 06 August 2011 - 07:29 AM

Gold.
        Things on the RA front are really getting me down. I had to sleep on the lounge last night because it was easier to get up off. I can't  bend properly to go to the toilet and my elbows are burning. I wish the bloody injections worked for me but they don't. To top it off my wisdom teeth are killing me and I think I am going to stay on the lounge all day. How is everyone else going?.

#3 Megs25

Posted 07 August 2011 - 09:15 PM

Hi Guys,

I have Psoratic Arthritis. I'm in a lot of pain at the moment, and most of my joints are swollen. Having a lot of trouble getting sleep because of the pain at the moment.

I'm currently taking:

Sulfasalazine
Methotrexate
Prednisolone
Folic Acid
Fish Oil
Brufen
Feldene

and have just been approved for Humira injections. Am just waiting on the script in the mail. My inflammation markers are through the roof, and if these injections don't work I really don't know what I will do.

My kids are pretty much the only reason I get up in the morning. If it wasn't for them I would of had someone shoot me a long time ago!

Nice to find a soft place to land here. Will go now because my hands are in agony xo

#4 Dani

Posted 10 August 2011 - 05:40 AM

Bula from Fiji girls!

I'm in agony.  sad.gif   In between a bit of a rock and a hard place as because I have sarcoidosis as well I'm meant to avoid the sun...with the RA Vit D is necessary, Fiji not a good place for me.  Was due for a MTZ injection yesterday and boy do I know about it this morning.  You know when you feel lieke every knuckle in both your hands and your toes has been smashed with a hammer, individually?  Add to that 2 x shyte hips (hips are a new joint problem for me) and obligatory crap shoulders/wrists/knees...yup I just wanna get home.  Speaking of home if my Enbrel commencement script isn't in my mailbox I reckon I'll about top myself, have high hopes for that sh*t lemme tell you!

Gutted that so many others here are having a rough trot (errrm, understatament) but here's hoping our Rheumy's can get on top of these damn inflammatory markers, sooner rather than later too!


Best get back to room and have the kids pile off for breakfast, starting to wonder if they'll ever stop eating this trip, feel like we're always at the buffet feeding them.  Arrrgghhh!


Chins up guys, if you can physically manage it!



#5 IVL

Posted 11 August 2011 - 10:40 AM

Half your luck Dani to be soaking up the sun (under layers of slip, slop slap hopefully). We are off to Fiji in October, where are you staying? It is such a great holiday spot for little ones.

I am like you and in a whole world of pain as the pred has worn off and I'm not due for another pulse until next week. Its astounding how I can go from feeling fantastic to feeling so horrid in a matter of days ( I think my mood is starting to follow the same sequence as well). Had to go to the GP yesterday and he sent me home with more panadeine fort and endone. I thought I might get some sleep last night with that combo, but it still didn't seem to completley take the pain away. Might try 2 endone tonight and tell DH that he is on kid duty as I don't think I will here an explosion let alone a crying child with that amount drugs.

The mtx injections don't seem to making any difference yet so have to wait until I see my rheumy at the end of this month to see where to next. I am hoping the TB tests are clear so we can start the biologicals as I am really holding out hope that they work. I have also been following the anti-inflamitory diet religioulsy and it hasn't made any difference. I actually think I am worse now then I have ever been. I had to have soup for dinner last night as my jaw is so sore I can't chew.

Anyway whinge over, so nice to be able to come here and have a whinge with people who don't respond with "oh I know how you feel, my grandmother gets arthiritis in her hips...."

#6 Guest_Zetetic_*

Posted 11 August 2011 - 04:52 PM

IVL, I am glad to have someone else to whinge to as well. I swear people just stare at you when you tell them what is wrong. Today I am bloody exhausted and every joint feels like it's been crushed.My left shoulder is so sore & going to the toilet it a nightmare having to bend my knees is a joke. Our daughter who is 8 helps me in the bath, she is wonderful and washes my back and helps me get dry.It makes me sad when I think about it too long, our son who is 9 is having a rough trot this week too.His knees and neck are bad. I am so sick to death of shuffling from the lounge to the toilet.Argh enough of my crap.Dani, you are mad are you not, missing your medication.I would be a head case. I hope you are making the most of your holiday though & your little girl is going well as well.

#7 Dani

Posted 23 August 2011 - 10:18 AM

Anybody around?  How is everyone travelling????

I'm pi$$ed as script finally through for Enbrel, YAY!  Rheumy says can't commence and my bloods have returned suspected tuberculosis.  Oh FFS, cut me some slack!  Hey Ho, more testing being done but definitely not allowed to start biologic yet.  Gutted.



#8 IVL

Posted 23 August 2011 - 12:26 PM

Oh Dani,

so sorry to hear that. Did you have the Quantiferon assay with a chest xray or just the MBAT (skin) test? I have had previous positive results for the skin test but only becasue I have been exposed reguarly to TB via my work. My Dr sent me straight for the Quanitferon assay and I should get results next week. Even if you do have a suspected infection you may be able to start the biologics within 2 months if you start AB's for the TB. How unlucky but!

I am doing OK, had my methly pred infusion last week so pain free at the moment but suspect sometime early next week the pain will return, unless by some miracle my current regime starts working (you may detect an undertone of anger there).

How was your trip away, where in Fiji did you stay? We fly out next month and taking my parents with us to celebrate my Dad is coming out the right side of his recent cancer battle.  

I just can't believe how little strength and fitness I have at the moment. Even though I am relatively comfortable at the moment every time I go to do a task that I could have done without any great effort this time last year I find it really difficult, things like helping DD2 out of her car seat, lifting washing baskets etc. Does anyone have any good strategies for building strength without doing any damage. I dont' know how I would go at a gym as at the moment I am only able to exercise for 2 weeks out of every 4 just after the steroid infusions? Any suggestions/advice would be welcomed ladies. I would really like to get some general fitness back so I can make the most of snorkeling and swimming when we go away.

#9 CoffeeRock

Posted 30 August 2011 - 09:06 PM

Hi
I'm new here, if I'm in the wrong section please point me in the right direction.  I have RA, my flare after coming off biologicals seemed to clear up spontaneously at the start of last year, so I thought I would take advantage and try and get pregnant.  After the long wait to get off the MTX and others I am now 17 weeks pregnant.  So far so good with the RA, coming down off the pred too.  
One question I have is, has anyone had a total hip replacement and had a natural birth?  My otho and Ob seem to think it's ok, but I'm worried about damaging my hip.  My ob will do a c/s if I want, I'm just trying to wade through the options.  
Any advice would be great.

TIA

#10 Guest_Zetetic_*

Posted 05 September 2011 - 04:37 PM

Hi everyone,
                  I hope everyone is travelling the best they can.As for me I was actually doing ok until yesterday afternoon.I was taking the wheeelie bin down the front and the bloody ground gave way.Seriously cranky right now.The water company had dug up our front yard and the idiiots didn't fill it properly,just threw dirt in and didn't bother to compact it.It had been raining here a fair bit a few weeks ago and yesterday it just gave way under my right foot.Not happy.

#11 ~shannon~

Posted 02 October 2011 - 09:40 PM

Hi ladies!
So sorry to hear you are all having a rough time at the moment.

IVL, if I was allowed to take endone I'd become an addict... it's sooo good for my pain, but I was only given that after I had a flare after giving birth, so I doubt I'd ever get it again. What's the reason for having MTX via injection instead of tablets? I only ask because I've only ever had the tablets, and wondered if the injections were better.
Also, I jumped in the pool last week for the first time in ages, and did two laps before deciding it was still too cold. But boy did my joints feel good. It was like they warmed up and became really flexible (even though the water was freezing!) I guess it was because of all the swimming movements I did with minimal resistance. I never get the same feeling after walking, just further intense pain especially in my foot joints. I'm going to swim again tomorrow, so we'll see how it goes.

Dani, hope you had a good time in Fiji, despite the hammer that keeps knocking your knuckles (I really do know that feeling... it's the best way to describe the pain to someone who doesn't know... like all your bones are broken). How's the Enbrel? I've read so many good reports on this so I hope it works for you. And TB? Geesus! Good luck girl!

Zetetic, I feel the same about my daughter who is only five, but helps me so much. I should be helping her with things, not the other way round. My hubby starts work very early in the mornings, so my daughter is the one who helps me at my worst. I love that she's so independent now, but I hate that it's because of my RA.

CoffeeRock, welcome aboard the rusty RA train! And congrats on your pregnancy! I haven't had a hip replacement, so can't really help with your question, but I have had a natural birth (with no drugs!) and hip pain due to my RA, but labour was so painful, my RA was not even on my mind! If I were you, I'd read up heaps, talk to lots of people and doctors, midwives, and then make a plan to have a natural birth with the option of having an epidural for the pain (you can always have an emergency CS if things aren't going well). If your ob says it's okay, then I certainly would be giving it a go. I've also had a CS and the natural birth was a much better experience by a mile. After the CS I couldn't get out of bed for three days, but after the natural birth, I was up and around straight away. Our bodies may be wrecked, but they can still do amazing things like having babies!

AFM, I'm doing pretty well. The pain is now isolated to my hands and feet mostly, so I'm happy to deal with that instead of having it all over. My bloods have been improving from month to month, so I hope I'm heading for a period of remission. I stopped work in June, so my stress is way down and I have a lot more time to rest when my body needs rest.
I'm down to pred, sulfasalazine, fish oil, panadol osteo and calcium pills. No MTX at the moment as DH and I are contemplating trying for another baby.

Best wishes for all of you!

#12 Dani

Posted 29 November 2011 - 09:35 AM

How is everyone?

I took the plunge and got my lapband removed.  I had it put in in July 2008 and was diagnosed with RA 6 months later.  35kgs down (yay me!) and my gut feel said the 'foreign body' implanted in me may not be assisting the severity of my RA.

Made my surgeon take bloods the day before the operation just for comparison purposes in 6 months time...

RF = <20   (duh)

ANTI-CCP = 408.0   (ouch!)


Be a cack with the anti-CCP's reduced significantly once band removed.  Wait & see now I guess....?  (patience not one of my stronger points! LOL




#13 IVL

Posted 29 November 2011 - 11:16 AM

Hi Ladies,

Dani - I hope the surgery is the answer to your problems and helps with the RA. Did you end up starting the biologics, I recall you had some issues with your TB results. I hope the recovery goes well for you. Will be interesting to see what the outcome is.

Shannon - I have been having MTX via injections as the Dr upped my dose and having via injections helps to avoid some of the side effects and also means it is absorbed by the body better (weel I certainly feel it being absorbed by my butt when the needle goes in). I tried the swimming and then relaised I couldn't get my arms out of the water to swim freestyle which we really upsetting as I used to be quite the swimmer, well I was 20 years ago. I went to a hydotherapy class at a local rehab physio and we by far the youngest person there by about 50 years. It was good for my self esteem when I looked at my relfection compared to the other Nanna's in the class but not so good when I sore that they were so much fitter than me. Glad you are well and looking forward to another baby hopefully soon. DH and I always thought we would have 3 kids but since getting so ill after my second we have decided 2 is the magic number for us.

Zetiec, I hope you recovered from your garbage miss-adventure!

CofferRock - good luck with you delivery whichever way you decide is bets. I had 2 nromal deliveries but didn't have a hip replacement so I can't advise you - best listen to the professionals and Shannon is right, when labour starts you will foget all about your RA pains!

As for me my Dr just sent off the paperwork for Enbrel as the medications were doing nothing to help with my RA and the side effects were becoming too much to deal with. I had massive stomach problems and have not been able to keep food in, lost way too much weight and now have some weird rash going on and have had a lung infection since August! I hoep the paperwork is approved soon and I can get off some of the other drugs. I will have to stay on MTX but will be able to lower the dose.



#14 Dani

Posted 30 November 2011 - 06:54 AM

QUOTE
Dani - I hope the surgery is the answer to your problems and helps with the RA. Did you end up starting the biologics, I recall you had some issues with your TB results. I hope the recovery goes well for you. Will be interesting to see what the outcome is.


Yeah was all ready to commence Enbrel (box currently sitting in my GP's fridge, it winks at me everytime I get the MTX out to have him jab me  cry1.gif ) but still have to undergo the Mantoux test at the chest clinic at Manly Hospital and just can't get my act together.  Think though I want to see what my numbers do now this lapband has come out and don't want the enbrel taking the cred.  LOL






#15 TheCeriseClupea

Posted 05 December 2011 - 07:49 PM

Hello ladies,
                  I am back (zetetic) just had a short break. IVL, thanks for asking how I am. My foot has been giving me heaps of grief since that misadventure. Dani I really hope having the surgery reversed is going to help you in the long run. As for me I am waiting to see the quack in January to see what else can be done to help the pain. I have really had enough. Over & out for now.

#16 FeralLIfeHacker

Posted 21 December 2011 - 05:36 PM

Hi everyone,

Guess I belong here now, thanks for the link:)

Got a call from the hospital today and they ahd an appt for me I was a bit shocked as we dont have PHI and I thought being a big public hospital the wait would be ages but doc stressed how important early intervention was.
He is going to wean me of the predisinole{?} and has prescribed
Sulafasalazine{sp?} and Hydroxychlorynine{sp?}, sending me for chest xray, hand xray, eye test and blood and urine test every 3 weeks ohmy.gif  

I don't think I realised how serious this is/can be:(

He has asked me to be part of a study which involves getting an MRI and having a biopsy done to test tissue from my knee but it involves an anestetic so not sure if I should do that or not unsure.gif

My biggest concern over th ewhole thing is that I am fully breastfeeding a 9 week old baby  and I'm so worried about the drugs, the doc said they were okay with breastfeeding but I'mnot convinced -I'm considering switching to formula so I know he isn't being affected by them.
Sorry for the me, me, me post - I am going to go through the thread and read your stories my head is just spinning atm:wacko:

Is it weird or normal that I am having a feeling of just dumping all the scripts and urine pots and blood test forms and xray forms in the bin and forgetting the whole thing, I know I can't right? It will just get worse, I have a false sense of being okay atm cause since taking the pred I am feeling fine but a few days ago I literally couldn't lift my baby. aggh I'm just rambling now.



#17 IVL

Posted 22 December 2011 - 11:44 AM

Hi Humpreymum,

so glad to hear you got into an appointment ASAP. It is so important you get your condition under good control as early as possible in order to minimise long term joint damage.

Only you can choose what will be right for you and your babe in regards to BFing. Perhaps you can call the Mothersafe hotline who advise on the safe use of medicines whilst preg and BF. For what its worth I took both medications plus some additonal pred and painkillers for 6 months whilst BF my now 2 year old. I discussed this with her pead before deciding to continue with BF. It was his opinion that I should continue BF as I was also trying to avoid DD2 developing the same severe food allergies as DD1 (DD2 has no food allergis BTW - yay). In the end I weaned earlier than I planned too, but I just couldn't cope with the pain anymore. As you well know, there is more to being a mum than just making milk - you have other kids that need their mum to think of too! I look back and wish I had weaned her sooner, I suffered so much and was miserable with the pain, but hindsight is a wonderful thing.

I am out of hospital in time for Christmas and home with my family! Thanks to all the steriods they filled me up with I now feel like the Incredible Hulk and don't think I will ever get any sleep any time soon, I am all over the place like a crazed woman on speed, BUT I am NOT IN PAIN!!!!!!!! Hope it lasts a few weeks. Word of warning - make sure you take the pred in the morning, never before bedtime.

Good luck with it all and be kind to yourself over the next few weeks.



#18 FeralLIfeHacker

Posted 22 December 2011 - 01:33 PM

I am out of hospital in time for Christmas and home with my family! Thanks to all the steriods they filled me up with I now feel like the Incredible Hulk and don't think I will ever get any sleep any time soon, I am all over the place like a crazed woman on speed, BUT I am NOT IN PAIN!!!!!!!! Hope it lasts a few weeks. Word of warning - make sure you take the pred in the morning, never before bedtime.

Good luck with it all and be kind to yourself over the next few weeks.

****

Oh that's brilliant, Soooo happy for you! biggrin.gif  I hope you have a lovely (pain free)! christmas with your familyxx

Thanks for the tip too wink.gif

Edited by humphreymum, 22 December 2011 - 01:33 PM.


#19 ~shannon~

Posted 22 December 2011 - 04:12 PM

Humphreymum... I've just replied in the other breastfeeding thread, but now I have read what you're going through... really only you can work out if all the pain is worth continuing with the breastfeeding relationship you have with your son. I truly sympathise with your situation. I also have days where I say, "screw this, I'm not swallowing one more pill..." then the next day my whole body hurts!

QUOTE (IVL @ 22/12/2011, 11:44 AM) <{POST_SNAPBACK}>
Only you can choose what will be right for you and your babe in regards to BFing. Perhaps you can call the Mothersafe hotline who advise on the safe use of medicines whilst preg and BF. For what its worth I took both medications plus some additonal pred and painkillers for 6 months whilst BF my now 2 year old. I discussed this with her pead before deciding to continue with BF. It was his opinion that I should continue BF as I was also trying to avoid DD2 developing the same severe food allergies as DD1 (DD2 has no food allergis BTW - yay). In the end I weaned earlier than I planned too, but I just couldn't cope with the pain anymore. As you well know, there is more to being a mum than just making milk - you have other kids that need their mum to think of too! I look back and wish I had weaned her sooner, I suffered so much and was miserable with the pain, but hindsight is a wonderful thing.


Hindsight is a wonderful thing... for me, I wish I hadn't weaned, it's probably my one biggest regret that still haunts me at times. I could have found other ways to manage my pain without quitting BF, instead I just listened to everyone else telling me to quit.


#20 TheCeriseClupea

Posted 24 December 2011 - 04:20 PM

xmas_mellow.gif Merry Christmas to my fellow RA sufferers I hope Santa brings you all a pain free day.Take it easy, eat & be merry.All the best for a better new year.Cheers to you all. xmas_tongue.gif

#21 FeralLIfeHacker

Posted 28 December 2011 - 03:28 PM

Hope everyone had a good Christmas.

Had 2 appts today one with my Rheumy who had me sign paperwork to have an arthroscope done under GA next Tues (part of a trial) then saw my Gp after that.

Totally confused now, my GP said if it was her and she was bfing there is no way she would have an arthroscope under GA and that she doeesn't think my Rheumy is fully understanding that I'm a bfing Mum. She basically told me not to have it done.

So I'll phone him and cancel probably, I just hope it doesn't mean I can't/wont have access to treatments I may need in the future if I don't have it done.  I don't think so though, he said it wouldn't affect my management shrug.gif .

Gosh darn this is confusing sh*t wacko.gif

#22 ~shannon~

Posted 28 December 2011 - 03:45 PM

Hi Humphreymum, sounds like you are getting such contradicting messages from different sources... no wonder you are confused. I saw this today and thought of you (particularly point number 5):
http://www.rheumatoidarthritisguy.com/2011...hronic-illness/

This is an excellent website and will hopefully lift your spirits a bit.

The latest project by RA guy is a collage of hundreds of RA hands... my hand is in there too!

#23 FeralLIfeHacker

Posted 28 December 2011 - 04:57 PM

What a great site, thanks Shannon,

Yeah #5 is very fitting.  I can see my Rheumy's thing is to attack the disease early for best results but my GP is pointing out that I still have a life going on right now so it's okay to take things slow at this point.

definately had a laugh especially at some of the posts in "You know you have RA when" laugh.gif , hard to laugh when you know the pain involved but def relate to so many of them, some I probably didn't even realise were connected to having RA!


#24 IVL

Posted 05 January 2012 - 08:16 AM

Hi everyone,

hope you all had a great Christmas break and New Year. I actually got some celebrating in after what was a dramatic lead up to Christmas where I got stuck in hospital with a very nasty flare and not so fun series of infections. Anyway almost back to normal now but I have lost so much strength!

I was wondering if any of you ladies had tried hydrotherapy. I am thinking about starting up to try and get some strength and fitness back as I have done no exercise at all in the past year and have a lost a lot of weight and muscle tone. I was thinking this might be good as have tried walking and weights but my feet and and hands are still too sore to do this.

Humphreymum what did you decide to do with the meds and weaning? Did you end up having your knee arthroscope, if so hope the procedure went well.

Dani, hope you are going OK after having your surgery as well.

#25 FeralLIfeHacker

Posted 05 January 2012 - 11:20 AM

Hi all,

IVL I'm glad your almost back to normal:) and had a good Christmas. I have not tried hydrotherapy but I imagine that anything where your weight is supported would be good?.

Thanks for asking, I decided not to take part in the trial so no arthroscope or MRI - it was all just a bit too overwhelming and my GP was concerned about the GA and bfing and I wasn't scheduled to see the anestiesiest{sp?} til right before the op so I decided I didn't need the extra stress.

Had my chest, hand, feet xrays and bone density on Tuesday - huge day -bone density normal so all good, still waiting for xrays.

Currently just taking the sulfasalazine (been taking for 1 week so not up to full dose yet) and still weaning of the pred. No side effects as yet.   I am still not sure about the Plaquenil - my doc says they have pg ladies taking it so to get onto it but as yet I haven't started it - I probably will in the next few weeks - I find I just have to take things slowly cool.gif .

Apparently it's common with RA to be Vit D deficient and she said I would need to be on about 40,000 intake a week to improve it but she has no data on that and bf so I'm just taking 1000 a day as per her recommendation.

Getting a bit more used to the whole thing now and have met and spoken to a few lovely people in the clinic waiting room which really helps and great to be able to get it out in here too original.gif  


Hope your doing okay Dani, Shannon waves.gif




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Essential Baby and Essential Kids is the place to find parenting information and parenting support relating to conception, pregnancy, birth, babies, toddlers, kids, maternity, family budgeting, family travel, nutrition and wellbeing, family entertainment, kids entertainment, tips for the family home, child-friendly recipes and parenting. Try our pregnancy due date calculator to determine your due date, or our ovulation calculator to predict ovulation and your fertile period. Our pregnancy week by week guide shows your baby's stages of development. Access our very active mum's discussion groups in the Essential Baby forums or the Essential Kids forums to talk to mums about conception, pregnancy, birth, babies, toddlers, kids and parenting lifestyle. Essential Baby also offers a baby names database of more than 22,000 baby names, popular baby names, boys' names, girls' names and baby names advice in our baby names forum. Essential Kids features a range of free printable worksheets for kids from preschool years through to primary school years. For the latest baby clothes, maternity clothes, maternity accessories, toddler products, kids toys and kids clothing, breastfeeding and other parenting resources, check out Essential Baby and Essential Kids.