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Newbie with ReA any info helpful

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Rheumatoid Arthritis
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Posted 5/18/2009 5:14 AM (GMT 0)
Hello to all!

Ok so I am 39 (no really I am) and just a month and a half ago I was diagnosed ReA. Ok so I am use to pain, I have had 16 Knee surgeries starting at age 11 (dang dirt bike), 1 lower back surgery (ruptured disk), Multiple Gout Attaks, Broke my foot at 9, MERSA a few years ago (don't know where I got that from), Prostitis and then came the ReA diagosis.

So this started out about 5 months after a got married to my beautiful wife, so the rest of my first year of marriage as been her and my three kids wondering if daddy was going to make it. It started out with prostitis and then my joints went crazy starting with my left hip. I didn't know what was going on and neither did my docs. I had fluid drawn of my hip using contrast die which is when I found out I was allergic to it cause it almost killed me. Well to make a long story short and many doctors my rhumie finally diagnosed me with ReA. I was and still am a little skeptical because it started in my hip and I can't find anyone who started there.

Anyway, I am now on Methotrexate. I have been on it for a month and a half and am getting some what better. The hip still hurts but I can walk on it now. The Mtx makes me sick the day after I take it and I have no energy for a day or two. What I can not figure out is why am I sweating like crazy. This has been going on since before any meds or any diagnosis. I am sweating and I am cold, its so weired, the back of my neck and my skin is almost ice cold and again I find no one else with this. Oh and ugggh at the brain fog! Is this unusuall? Now it seems that my right hip is starting to hurt but has not got to the pain level as my left hip.

I don't know much about ReA and am glad to have a forum of people to talk to. I am sorry that I typed so much but it doesn't even begin to cover the whole story of the pain or the fustration of waiting to find out what was wrong or if this is really what is wrong. My wife and kids say I need to slow down but that is hard to do, I own and operate a heating and cooling co so that means I crawl for a living (go figure).

I am just looking for your experience, guidence and support thru this and I will be there for you as well as I go foward. Maybe someone has had the same symptoms as I have. I just want to know what to expect and or what is normal. What should I be asking my doctor about (except for the hla-27 marker I didn't have it).

Thanks to all and sorry for making you read so much.

Mike

 

Posted 5/20/2009 12:39 AM (GMT 0)

Hi Mike. welcome to healing well and sorry about your diagnosis. Yep there's lots of us here who suffer from the various forms of pain associated with RA plus the various side effects of the toxic drugs used to treat it. Mtx is a cancer drug at higher concentrations and you really need to drink as much water as you can each day to help flush it through your system. I sometimes get hot flushes with it but not the shivers, also get mouth ulcers and have lost a lot of hair. Its not a nice drug but it really helps with the swelling. Both my hips are affected too and I get occassional jabs of cortisone in them which really helps. You could ask your rheumy about that option. I feel wonderful for about 5 or 6 weeks...no pain. Its worth the discomfort to have those weeks of relief.

Everyones experience with RA is there own, no two alike almost!!! Everyone reacts differently to drugs etc. so you unfortunately have to journey that bumpy road alone but you can at least whinge about it here!!! We are always ready to listen. There are a lot of arthritis drugs out there. So if mtx isn't enough I'm sure your rheumy will move you onto one of the biological agents, they are a bit like wonder drugs and have made enormous differences to the lives of people with arthritis. I'm on humira and mtx but atypically its not enough for me, though I am much better than without them, but I won't go there. Again welcome and let us know how you are going, golitho.

Posted 5/20/2009 1:20 AM (GMT 0)
I got the cold sweats with shivers too. Particularly just after the pain started and getting treatment. It lasted for quite a while after starting the drug MTX. I also have nausia the day after taking MTX and 2 days of fatigue that basiclly steals 2 days each week. I get the brain fog too. If you are on prednisone, that can cause brain fog too. Lists and dry erase boards help me stay on track. I was 29 when I got my Dx. My husband has been great about all of this- make sure that your wife is in on everything- it affects her life just as much.
Posted 5/20/2009 2:30 AM (GMT 0)
Thanks for the replies!!

I wish there was an easy answer for all of us here. I know I haven't endured the pain that alot of you have had and are going through. I have always told people unless you have been there you just don't understand. Pain is something everyone has had but till you live it everyday you just don't get it. I know you all understand what I am talking about. I really do hate to complain as I have told my wife many times but sometimes you just can't help it. Somedays I just want to scream, somedays I just want to wake up and it all be gone.

Ok yes I am whining a little. This week has been a bad one for me. Saturday took my mtx, Sunday sick and in the bed sleeping all day, Monday had to reschedule all of my appoinments so that I could come home and crash due to extreme nausia and pain, Monday night pain in both hips, knees, back and feet up till 3. Tuesday slept till 11:00 went to work ran the calls I could dealt with the pain and nausia, the whole time wishing it would be over so I could go home and crash again. Got home today (Tuesday) son (12) wants to throw baseball (which I love to do) and had to tell him know. Its so hard to see the look on his face when I can't and to hear him ask "dad when are you going to feel better?" Who do you answer that? I just hope that the doc. is right. Is this the right diagnosis? How do I know? How long do you keep taking this medicane before it starts to help? Ugggg I am sorry to ask so many things! I just want to be somewhat normall again.

Ok so thats my rant for the day! I am sure I will be some better tomorrow then a little better by Friday then start is all over again Saturday!
I am sure I will get use to it just as I have the pain in my knees. I just wish that that day will come soon.

Thanks for the replies, they really do help!! It helps to know that you are not alone.
My thoughts go out to you.

Thnx!
mjfs
Posted 5/22/2009 1:26 AM (GMT 0)
Hey Mike, what dosage are you taking? Mabe you should ring up your rheumy and describe your symptoms and check you're in the normal reaction range and not having an adverse reaction. The first attempt of mine to take mtx I had to come of it, I was so sick but the second time I was started on a small dose just 10mg and slowly built up to the 20 I'm now on. I've tolerated it much better this time and been on it for nearly a year. Its such a strong drug, the first time I remember it affecting my breathing and the tiredness etc. this time I'm absolutely fine  but its wiped out my vt D and calcium so I have to take supplements. It is a truely evil drug, if it didn't work so well I wouldn't be on it. Why don't you ring and just ask? Doesn't sound right to me to feel so sick on it. But I'm not a doctor!!!

Posted 5/28/2009 3:18 AM (GMT 0)
I agree with golitho about calling the Dr. Tell then what is going on as detailed as what you described above. I also had to ramp up my dosage for several weeks before getting to the dosage I am at now. I have found with all of my medications- the side effects start well before the wanted effect start. I took MTX for 6 weeks before I noticed a big diffrence. I still feel like I could get better control of my pain. I may have to add or switch to another medcation.
I have finally dropped the prednisone and the brain fog is considerably lighter. My fatigue is better as well. I still run out of energy before I want to, but I can get out of bed or off the couch, so I'll take it. Once you give up so much, to get a little back is a big deal.
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