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New Member - Bstrong - My story

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Posted 7/24/2010 2:12 AM (GMT 0)
Hello All. I am 34 - female,  I have been diagnosed with Polyathritis 2 weeks ago... I am suffering from pain and swelling for over the year and it was progressing pretty quickly. In April 2009 I started to have some little pain in my knees, workouts were ending with some kind of contusion... Then next were elbows, swollen feet, hands etc etc... Extreme fatique...

I had tooth implant placed at the end of the 2008 ad started to blame on that. Additonally I found some info that people who decided to put titanium implant into their mouth started to have arthritis-like symptoms. I did titanium allergy test - was positive, so decided to remove the implant. I remeoved it this year - April 2010 - nothing changed....

Finally I got to the rheumatologist, after testing my blod test showed early RA and vitamin D deficency.

The doctor wants to put me on Humira from next week, I will take plaquenil, prednisone and Humira - that's the plan.

It wasn't easy to hear diagnosis, I cried whole day, but finally I need to start doing something with the pain, swelling and inflamation. I can't live like that....

I plan to visit the site often, thank you guys for being here for people like me, "beginners". It feels good if you can read similar stories to mine and feel that there are people who understand...

 

Posted 7/24/2010 2:12 PM (GMT 0)
Hello Bstrong, welcome to healing well. There are many kind people who will listen/ read your posts and offer support.  When I first came in here I found many caring people who shared their stories with me.  They arent doctors but can tell you their experiences or their opinions and I find that their info helps to make decisions in  your own life.... I am 35 mother of a 7, and 5 year old boys, and step mom of 17,and 16 year old boys.  I was one of those people who never ever thought I would get arthritis at such a young age. I have learned so much coming onto this site. I had never heard of juvenille arthritis either.....

Anyway I am rambling...welcome again and keep posting.  ((gentle hugs)) Have a great day.

Posted 7/27/2010 4:47 AM (GMT 0)
Hi TayIsa! Thanks for posting ... so we are pretty much in the same age, but you have kids! I am married and have really wonderful husband! He is so supporting and understanding. I didn't expect this desease too at all, but who did???... I was always trying to eat healthy, exercise and was working out until I started to have knee problems. Now I am just waiting for the moment that I will feel good enough to go to the gym just for a little bit.
I am on Isoniazid for 6 mths , after 1 mth I can start Humira. My TB test was positive but just because as a kid I got TB vaccine (they practice it in Eastern Europe and Asia). Anyway my doctor wants me still take the medicine as he said we need to be sure 100% that I am OK before taking Humira, so I understand... I am just worying about my stomach how it will take that many different pills. So far is not bad, we'll see.
Of course I have so many concerns... never need to take that many pills, always was healthy. Side effects scares me but like someone wrote on this forum what is more scary - just think what would happen if we don't take the medication.
I plan to stay strong! and positive as that's my nature :)
Thank you for the support!
Posted 7/28/2010 8:14 PM (GMT 0)
Welcome to the forum. So sorry you have to be a member. My wish is that none of us have to go through any of this. Granted it's a big wish. I am 35 and the mother to 6 kids. 3 boys, and 3 girls and trying to get through with my Rhuemy to figure out exactly what is going on with me. I hope to finally find out in August. Anyways, I just wanted to say hi and welcome. I hope you have a pain free day.Heather
Posted 7/29/2010 5:11 AM (GMT 0)
Hi mama6! Thanks for posting. I hope you will finally find the doctor! In my case I went to my first rheumy in October 2009 when my pain was bad I didn't want to waste my time for primary doctor with this problem. I was looking over the internet and reading other people's reviews. As I live in US for last 6 years and don't have family here or friennds with this problem who could recommend any rheumy. I thought he will be great. He didn' t listen at all, didn't explain me things. I was so frustrated, I was telling him one thing he was answering the other. At that time he was telling me that I have probably very early stage of some kind of rheumatology desease but my blood tests didn't show anythng. He prescribed me Meloxicam (anti-inflamatory pills) and Planquenil which scared me with side effects so bad!!!! so I decided to not take it. I believed my symtoms are linked to the tooth implant and was trying to discuss it with him. He said there is nothing like titanium allergy and he didn't want to talk about it with me. It was so strange for me that doctor! is refusing discussion about something I am concerned and he was in so much rush... For next couple of months I was trying to figure out what is wrong with me with my primary doctor, I was on meloxicam which was helping at the beggining and taking steroids when I had really bad days - it was helping for some period of time with pain. Finaly when I removed the tooth implant and nothing changed, my symptoms were getting worse I decided to go to the different rheumatologist. And here we are, I am on th Plaquenil - not so scared of the side effects any more (but I wouldn't say that at all...), I am just doing what doctor says, not trying to figure out things on my own. I am just tired of the pain... My last blood test showed early sign of desease, X-ray of the hand - a little corrosion in one finger - this is enough to convince me. I think I was in denial at first, couldn' t believe that it is long term problem, I thought I can fix it - just find the cause... cure it and I will be fine. Doesn't work like that I guess... It is time to do something about it.
I hope you will finally find YOUR doctor who you can trust ( I always have problem with this part) but I am just trying to turn off this button now ;-)
Good luck to you!!!
Posted 8/4/2010 2:46 AM (GMT 0)
Bstrong,

I am so sorry you have had such a difficult time, especially with no one here to help you or guide you to the right Dr.'s. My husband and I moved 2000 miles away from home in Cali. to Indiana almost 8 years ago, so I know that feeling. Most everyone that I have met in the meantime doesn't have any of the symptoms, or the understanding for what I am going through. I happened to get some good leads for dr.'s from a couple of people here. I'm sorry about your dx. I was wondering in the beggining, did you have any sharp,knife like stabbing pains coming from your elbow joints or three center fingers(both sides).

I have the throbbing pain and stiffness in my hands,fingers, shoulder blades, elbows, knees, and toes and feet. It started with my knees off and on like they were on fire from the inside of the bone(in the joint??). That stopped. Then I woke one morning with my hands stiff like the skin was pulled so tight it would tear if i moved. Then it was one finger of throbbing pain in the lower knucles and joint which would be followed a couple of days later by sharp shooting pain. Anyways, it went like that from there. I don't have long til my app. but it is driving me crazy..all the years of waiting. Sorry to post to you in your thread. blush   Heather

Posted 8/4/2010 5:38 PM (GMT 0)
Hi and welcome!
Posted 8/5/2010 12:30 AM (GMT 0)
Hi Bstrong, its not good getting told you have RA. So life changing, most people associate arthrits with the old and don't realise that RA is a young person's disease! All of us were probably as fit and heathy as you said you were when diagnosed, thats the hardest part going from a very active life with unlimited energy to one with only so much daily juice!
You have to learn to pace yourself and not overuse any particular joints, keep chaging tasks often if something gets sore... but you probably know all this.
Hopefully the humira will give you your life back, it was a wonder med for me for about 4months, I could run and play soccer again. All I can say is enjoy any pain free day or sometimes months while you have them. Don't take them for granted! Hopefully you will be one of the lucky ones who go into remission, I'll keep my fingers crossed for you, golitho
Posted 8/12/2010 3:47 PM (GMT 0)
Hi

I haven't been on line here for awhile but wanted to comment on your post.   I'm so glad you're getting treatment for your arthritis.  I fought taking the Humira for quite awhile but have been on it now for a few years and it's been my salvation.   Could hardly walk before and the pain in my knees and hands was non stop.   I can now walk normally and what pain I do have is minimal.   It's like having my life back.

I wish you the best.

Alicat yeah

Posted 8/12/2010 7:34 PM (GMT 0)
BSTRONG,

 I just wanted to check in and see how you are feeling on the new meds. Has it made any difference? Have you had any bad side effects..I hope not. Hang in there and take care of yourself, Heather

Posted 8/13/2010 1:07 AM (GMT 0)
smhair  ello Everybody,

Thanks you for posting!

 

golitho - Thanks for good advices!!! I totally understand that you need to take advantage of the good days, I mean these days when you feel good because you never know when it hits you... now I know... and I know that it is so hard to plan anything right now.

Alicat thank you for giving hope with Humira!!! I am afraid too and planned to push it a little bit as I felt really good for last 3 weeks!!! But today again I am in pain and start to think that it is good idea do it as soon as possible...

mama6 - I have been feeling good for last 3 weeks, realy good, I think that was Prednisone - injections ( in knees and ankles shocked ) which did the trick and Prednisone - pills. Plaquenil probably is not working yet as they say it will start to work after 4 weeks - 3 months... And here we go again... Second day of pain, I can hardly walk... especially at the afternoon. I can survive whole day at work - somehow, but evenings are painfull... My main problem are the knees and ankles, then wrists and I could go on and on with little joints like fingers , toes etc. I just hope I need to go through this hard time right now but it will be better... Plaquenil will start to work and maybe then Humira... I will be better...

Doctor's appointment on Saturday, I am sure I wil get the shots in my knees again smhair   it will be 3rd time when I get it.

Does anybody knows why we need to be on so many meds? I mean why for example Plaquenil and Humira?? Does one is not suppose to work as the other one or I don't understand??? Why we can not just take one pill which is working for all of it???

 As for side effects - nausea - but I can live with that - it is not constant. Pepermint tea is helping a lot.

OK I am going to take some rest right now.... I will write soon... Thanks guys!!!

 

Posted 8/13/2010 3:55 AM (GMT 0)
Ginger tea is good for nausea too! Plus lots of water!
As for lots of meds, I think RA or arthritis is dfferent in everyone, some people can take just plaquenil and be totally fine. I have a friend who just takes mtx and has done for 10 years, she is totally ok. Another guy I know with Psa takes fish oil only. But I feel like I take everything and still get worse. Just seems to be how the disease prgresses in us or how we respond to the meds. I'm still waiting for that plateau I was promised about 4 years ago now! A bit of remission would be good too.

Heat helps, get those wheat packs you can heat up in the microwave, I wrap my knees up in them when they're sore. Also if I'm sore from being on my feet too long I use ice packs. Go with what feels right for you. The injections are great, I wish they lasted longer.

Good luck with the appt, be honest about everything don't hide pain. Let them know exactly whats going on. Best wishes, golitho
Posted 8/13/2010 9:31 AM (GMT 0)
I guess they've found that combining drugs sometimes has a better affect in some people.  My rheumy said a lot of her patients take methotrexate with the Humira but I was on methotrexate once and had to stop because my liver counts went up.   I guess we're all guinea pigs and they keep experimenting till they find what works for us.   It took several weeks for me before the Humira kicked in but once in did it was amazing.    I still take alleve twice a day too and that seems t o have worked for me.     If you start the Humira give it time to work.    They put me on Enbrel first but I couldn't take that because something in the preservatives gave me a reaction at the injection site.   Haven't had any problems with the Humira.

There are other new TNF drugs out now too so I'm sure eventually they'll find what works for you.   Hoping the Humira

will work for you as well as it has for me.     I always seem to get more pain when the seasons change and the weather bounces around.   Don't know if others find that too.

well I wish you all the the best,

Alicat

Posted 8/14/2010 1:12 AM (GMT 0)
Thanks guys! I know I am just starting my journey and they try to find the right medication for me. But I do feel the progress of the the desease - pain - everytime will hit me I think is stronger. I feel like that. I am pretty good with pain. I kind of get used to it ( if you ever do ). As a kid I had migrenes and always when I was too excited or nervous I had these bad headaches. Then they were ocassional and they dissapeared completelly few years ago. And here you go - born to be in pain I guess ;)
I always hated pills, I was taking pain medications - over the counter when was in pain, they didn't work fast or sometimes at all and I was trying to manage the pain somehow if I needed to. Yesterday I was laying on the couch with baaaad pain in my legs, I don't know if you ever tried infrared light? My husband bought the lamp for me when my problems started and I was using it sometimes, but not regularly. We are both originaly from Poland and in our country they were using infrared lamps in physiotherapy for rheumatoid arthritis. And I turned on the lamp directed on my knee and fell asleep. I felt like someone turned off the pain button :) when I woke up the button was on again.. ;) I don't know if it was the light or just deep sleep. I was in pain again and then went to bed and I was thinking that it would be so nice when you could just turn off the pain button, just tell your brain - no it's not hurting... They say everything is in our heads - we can do whatever we wish, there is power of the mind, so let's just tell your brains that it is not pain and maybe after repeating it milion times it will start to finally listen...

golitho - Thanks for advices with the heating pads! I am going to try it too! I am looking for some non-medication pain relief ways so any advices are very welcome!

Alicat - I have the same with the weather - I am sensitive to changes, esspecially when it is day before rains I can feel it, I used to have headaches and I didn't feel good in overall.

OK I am turning on my magic lamp, maybe it will help again a little bit and tomorrow... cross you fingers for my shots...!!!! But it should help at least for another few weeks.

Hugs for all of you! Wish you best !
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