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Hi there,

I'm a 20y/o female who lives Queensland in Australia.

I moved here with my Mum, Dad and brother 5 years ago- in a bid to alleviate the symptoms of Dad's RA.

Dad's only 57 y/o. He used to be a very fit and very active man. I've watched him over the last few years deteriorate to the point that he now looks and walks like a 70 year old man.

It is absolutely gut wrentching to watch and tears my heart out to see him now as opposed to what he was only a few years ago.

To put the severity of his RA in perspective- he was being treated by the best Reumatologist in Victoria and is being treated by the best orthopedic surgeon and reumatologist here. All three have said it is the most aggressive and worst case they have seen in over 20 years. He has had a full knee replacement of his left knee and is due for his right some time this year. That is after he has a lamenectomy to fix the bulging discs in his lower back. His skin is paper thin and tears at the slightest bump. Cuts bleed for hours and they seldom fully heal; all as a result of the disease and the meds he takes.

I've seen him in so much agony that it hurts him to stand up but he vomits when he puts his head down. It's enough to reduce him to tears on a regular basis.

My dad is no pansy by any stretch of the imagination- I've only ever seen him cry once and that was at his dad's funeral. He is the kind of guy who would cut his hand open and ask for a bandaid when it's clearly in need of stitches.

I do not know the medication he is on by name, all I know is that he's basically on the best of the best and there's nothing else left for them to try.

I have seen him stuggle to walk ten feet on some days and climb a ladder to paint walls on his 'good days'- only to be practically bedridden for the week following his defiance of his condition.

I know how depressed he is. I see the pain in his eyes even when he lies and says that he is OK.

Basically, I'm just here for some support and some insight in to what others are going through....

Maybe I can pick up some advice that might help Dad cope a little better.

Thanks guys

RA Hater

If he's been on the meds and 'there's nothing left for them to try' I seriously suggest you try www.roadback.org and lurk and learn.

I'm what we call an APer - we use antiobiotics to control the beast. There is an Aussie Roadback contact.

AP saved my life.

Hugs,

Pip

The name of his injection came to me- Humira.

Very expensive.

Once fortnightly.

Thanks PIP I'll have a look.

Hugs

Ally

Ally, welcome to the boards . lorrie2008-11-23 23:20:02

Awww geezus Ally sweetie....I am so very sorry to read and feel your anguish over your obviously adored Dad. I sure cant offer any advice as I have only been diagnosed with RA for 2 months ( after it showing its ugly blardy face 2 weeks earlier) but I can give YOU some support and send my prayers to your Dad. So for now (((((((hugs)))))) to you and your family. I am obviously very lucky because after not being able to comb my hair, drive, or hardly walk I am a new woman on 10 mgs Prednisone. Just started other DMARDS now.

It might be helpful if you can post Dad's meds here for the more knowledgeable to comment on. I have already learnt heaps about what supplements ( like folic acid, probiotics, VitD, Fish Oil etc) I should use to counteract damage by certain meds and maybe help symptoms/side effects of the meds. I see he is having Humira but anything else??

There are other dietary supplements too but Im not convinced diet itself plays a part in this disease. A friend who is a nurse specialising in RA recommends a tablespoonof blackstrap molasses in a glass of blood temp warm milk every morning so Im going to give that a go. She reckons she has seen remarkable results so it wont hurt at least! Well it may taste bad but hey!! lolol

My love to you Ally..... and best regards to your Dad. Is he able to join the forum?? It may help just knowing there are others out there having enormous problems with RA although he does sound extreme poor bugga.

I will PM you my email addy.

You are a brave loving young woman and your family must be so proud of you.

xxxxxxx Lyn

Edited to add: Cordelia, a member here, will be a fountain of knowledge I am sure, on all kinds of things relating to RA. She has been in Hospital and still may be, but hopefully she is better soon and at home with her daughter. I mention Cordelia as she appears to suffer terribly from RA and she is in Australia. xxxx

LyndeeNZ2008-06-17 01:13:43

I can't help with advice but I will certainly say some prayers that something can be found to make your father feel better and do better than he is doing now.

Please come often to unburden your mind.

I have had RA for 20 years but have no advice for your Dad. I feel for him and you as I know how horrible this disease is. I think you will get a lot of ideas from this forum. I am new here also but have gathered a wealth of information. Good Luck!

I am so sorry for what your Dad has gone through, as well as you and your family. This disease takes so much from us. But he is very lucky to have a loving daughter like you.

Like others have said, we don't know what he's taking or tried before other than the Humira, but I'm sure you will find lots of info around here. What works for some doesn't work for others, and it seems to take a long time to figure out what works.

One bit of advice I can offer...although we have mostly women on this forum, there are some men, and the fact that they are not always able to be the responsible breadwinners that they were raised to be is very upsetting to them. I would say to you just to make sure you acknowledge the contributions your Dad makes to your family...whatever those contributions are. Also, if you can find any ways to help around the house or get things for him without him asking, I know he would appreciate it. It's hard for any of us to ask for help all the time, and I would think even harder if you were taught to be the man and take care of your family, but instead they are taking care of you.

I hope they are able to find him a treatment soon that will help. In the meantime, does he have something he can take for pain?

Wow, what a sad story. You're a wonderful, loving daughter. Your dad is so lucky in that respect. I agree that he may find this forum helpful as well. Tell him about us. You and your dad are so welcome here and maybe we can offer some good advice, but at the very least, we can support you during your struggles. Hugs and prayers for you both. Hello there guys,

Thanks for all the advice and warmth.

I am almost 100% sure he is on MTX and Pred. Also takes copious amounts of tramal and theres a few others two. It's his twice daily "cocktail". Giggles. And one thing's for sure- when he forgets to take them he sure as hell knows about it.

Dad's in hospital today having a spinal block to see if that can help with the pain in the meantime until he goes for the big back surgery (here's praying that it helps and the surgery doesnt have to happen)

I emailed dad details of the forum yesterday and made him promise to have a look. I won't tell you his name just in case he decides to stay anon. I have faith that he will have a look as I know he is craving some empathy from someone(s) who truly understand what he is going through.

A little OT here- has anyone else been accused of "it all being in your head"... This is a common accusation from mum- though she can see the pain he is clearly in. She thinks it's just a matter of "pushing through" the pain. Like she often tells himto "exercise" pfft- yeah right, like he can exercise when he's flat out trying to walk!!!

Best wishes.

Ally

Ally, so many of us have been told by someone...family, friends, coworkers, even doctors...that it's all in our heads, at one time or another. Check out http://www.butyoudontlooksick.com/the_spoon_theory/ or http://www.usresolve.org/A-Letter-to-Normals-from-a-Person-With-Chronic-Pain.php. Maybe these can help your mother to understand. It's not easy to deal with this disease, whether it's happening to you or to someone you love. Sometimes people go into denial, other times they just don't want to understand. Sometimes they have to go through a grieving process before they're ready to accept it. Does your mother go to the doctor with him? Sometimes people need to hear it from the doctor to really believe it.

Exercise is often "prescribed" for people with RA, even if it causes discomfort, and it can help many, if not most. But for some of us, the RA and other conditions we have are severe enough to prevent exercise from being helpful. Maybe your mother has read about it and doesn't realize how bad off he is. My docs told me only to exercise in a heated pool, and even that sometimes leaves me in bad shape for a week.

Anyway, glad to have you here and I hope your Dad joins us when he's ready. I'll keep my fingers crossed for the spinal block to do its magic.

Hi Ally....I'm glad the others asked you about his other meds..

I just knew he had to be on prednisone, before you gave us that info about his other meds, like mtx.

how long has he had RA, how long on prednisone, and how much of it?

Although inexpensive, its the drug we all have a love/hate relationship with....It can safe a persons life, like someone, like my daughter, having severe mono, that her throat closed up..Used for may things, prednisone is

It can thin the bones, and what you described about his skin...

If Humira isn't working, it took me a few years, and i got off prednisone, there is Remicade option for me, and a host of other new meds..

I hope he starts posting, it might help him, and you, to read what the other posters are going through..
glad you found this forum!/take care!

Hi Inner Glow,

Thanks for those two links… Both made me cry. I can sympathise with what is in them particularly the spoons- that’s exactly how dad is. Both are a pretty fair description of what he’s going through- I’ve been a witness to it. I’ve seen what it can do to someone. I have never once doubted Dad’s pain.

I would not like to spend a day in any of your shoes- I consider my self lucky to be so healthy.

Hugs

Ally

Dad has had RA for about 6 years now I think. I don't know much about the meds he is on but I will ask him when I see him this week.

Hi Ally,

What a great daughter you are!

How did your dad's procedure go? Do it help him any? I wish him some relief and he is lucky to have you as a daughter. Like someone said earlier, do things for him without him asking. Bring him lunch or dinner or a special treat he would like or just be there to talk or sit with him. I hope he decides to join us here. It was the best thing I ever did for myself. I have met some very special people here that really care.

take care and God bless you and your family

Unfortunately, Ally, a lot of us get that "it's all in your head" treatment. It's part of the "But you don't look sick syndrome." I don't know how many doctors told me in the beginning my disease "was all in my head." I even was referred for a psych consult -- The shrink asked if I was depressed. I said "You're damned right I'm depressed. I'm feeling awful and the doc says "it's all in my head."

It's really a disease that few who haven't experienced it could ever understand.

You're a good daughter. Thank you for trying to seek help for your dad and believing in him.

Yep yep, we've all gotten the "it's all in your head." I've gotten the... "you're only 21, how can there really be this much wrong with you!?" or the "can you really not lift your arm or does it just hurt a little?" NOOO! I can't lift my arm... as in it just won't do it! (when flaring)
It's very frustrating, I know. Hopefully your mum (hehe I think that's so cute when people say mum) can start to realize that your dad is honestly doing everything he can. We must feel for her as well though, because she is going through an awful lot as well. Her healthy active husband has been invaded by RA and that's a very difficult thing for her to watch and understand.
My prayers are out to you, your father, and your mum
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