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    Old 09-18-2007, 05:13 PM   #16
    Baybreeze
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    Re: Pain...

    Wow! OMG, I wonder if you hold the record around here for most amount of
    x-ray's! Well, at least your doc seems to be very thorough in all the testing he's sent you for. I really do hope that a reason is found somewhere for your pain, maybe in all the blood tests.

    My rheumy used to always take me in right away when I called in alot of pain...either that same day or the next day. I just have to sit there & wait awhile until he squeezed me in between some people. Though all of a sudden the last time I had to wait 3 weeks to get in, even on the cancellation list.

    I hope the new med helps you somewhat & gives you some pain relief and I wish you luck in finding the source of your pain.

     
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    Old 09-27-2007, 02:40 AM   #17
    davidzzz
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    Re: Pain...

    Hey all...
    Well tomorrow is the big day - after all those x-rays and blood work. I guess my Dr. will tell me what kind of arthritis I have and get me on some med's. I'm really nervous about this... I don't know why, but I am.
    Also, the Ketoprofen - 75mg twice daily, doesn't really help much. A couple of times I took it 3 times a day and that seemed to help some, but not much. I'm also nervous about asking for stronger pain med's. I don't want him to think I'm a druggie or just want to get high. In the past I have noticed that I have a high tolorance for pain med's and need something stronger. Should I tell my Dr. this ? I also have a high threshold for pain. So when I complain about pain - it's usually severe. Should I also tell him this ? Any suggestions ? I'll let you all know the out come of my visit tomorrow.
    Bye for now...

     
    Old 09-30-2007, 04:15 AM   #18
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    Re: Pain...

    Hi all...
    Well I went to my rheumy Appt. on Friday the 28th. And he said "yep you have RA" What a relief ! - Not that I have RA, but that I have the diagnosis. It's like a weight being lifted off my shoulders being able to finally know whats wrong with me, to cause all this pain. I'm sure some of you know what I'm talking about.
    So... here's the med's he put me on... Humira - self injections - every other week. Hydroxychloroquine 200mg - take 2 once a day. Prednisone 5mg once a day - after I finish the intro pack. ( He said he was only going to have me on Prednisone until the Humira and Hydroxychloroquine kicks in. Which he says in about 2 months. ) And he wants me to stay on the Ketoprofen 75mg - 2 times a day.
    Does all this sound about right to you all ? I told him I really didn't want to take the Prednisone, because I didn't want to gain a lot of weight, but he said not to worry, just eat more carrot sticks and less buttered popcorn and pizza and I'd be fine. He said it wasn't the drug that make you gain weight. It's what you eat. It makes you more hungry. He also said to watch my salt intake.
    It's amazing what those drugs have done for me in just 2 days ! Almost no pain. And I was even able to finally sleep for more than 2 hours last night. I got 6 hours ! Now I know this is probly just temporary and that these drugs will probly stop working for me after awhile, but for now it feels good. Compaired to the way I was... anything is better.
    Have any of you had any experience with any of these med's ? If so I'd like to hear your comments. Or for that matter any comments on anything I've had to say. That's why I'm writing here... to share with others and to get feedback.
    Bye for now...

     
    Old 09-30-2007, 07:02 AM   #19
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    Re: Pain...

    Hi, yes I know all too well what a relief it is to finally have a diagnosis for something. I got diagnosed with my spine problems right away after having an MRI. But I still have other inflammatory issues and joint pains, etc that I thought were diagnosed, but now it seems not. Lupus was suspected for me about 18 yrs ago due to facial rash & the dermatologist asked all sorts of other questions like other symptoms I might have been having, which I was. He suspected lupus, but I couldnt really follow up due to no health insurance. So over the years I've had flare ups of joint pains, swelling, rashes, visual problems, headaches, hives, angiodaema, muscle pains, major fatigue, etc..
    In 2004 I finally got health insurance thru a job and finally saw a rheumy for the first time. He gave me Bextra first , but a few weeks later it was taken off the market. And of course the Bextra was working pretty good. He had me try Mobic & relafen (both of which cause my eyes to swell shut), then I went down fast. I got so bad he finally put me on Prednisone. I took 40mg per day for about 1 or 2 months, then tapered off slowly over 8 months. I tell you this Prednisone is like a miracle drug, I hadnt felt that good in years! Every symptom disappeared, including in areas I didnt realize were bothering me. I did gain some weight, which was mostly bloat and moon face...but I was able to exercise again so I guess that helped to keep me from gaining too much. He also had me start Plaquenil (200mg twice per day) at the same time. Plaquenil takes many months to build up in your system so the doc gave this at the same time so that it would be built up enough when the steroids were stopped. So I've been on the same dose of Plaquenil for several years now without any side effects or anything. It seemed to keep my flares more under control...either they were less severe or didnt last as long. Sorry I do not have any experience with Humira but Im sure others will post about that.

    One strange thing...I didnt gain too much weight from the oral prednisone, but I did gain alot (and massive moon face) from all the spinal epidural steroid injections i've had. But then again I had developed severe spine problems so therefore could not exercise at all. I also had one ankle act up on me again. However, I did watch what I ate (I seem to completely lose my appetite while on any steroids)..so I ate even less than before and that did not prevent me from gaining steroid weight and bloat. The good thing is, the steroid weight will gradually come off once the med is stopped. For me it takes a while (5 to 6 months) but at least it does go away.

    Again, I'm really happy that you are being treated & that the treatments are working for you. I hope it stays that way and you are able to get back to a more normal life!

     
    Old 09-30-2007, 01:11 PM   #20
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    Re: Pain...

    Thanks for the comment Baybreeze.

     
    Old 10-03-2007, 03:44 AM   #21
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    Re: Pain...

    Hi Davidzzz
    Am very pleased that things seem to be getting sorted out for you, it is so very hard to come to terms with having RA as things that we could all do once seem so difficult such as bathing, dressing, driving etc. I have only recently been dx but have joined a few societies where you can discuss with others about drugs/support etc they have used which really helps you to make decisions as to what to do. It's a nice way of meeting others as you find there are people who live near you who are in the same boat and can possibly meet up! In england you are offered the old style drugs first such as MTX etc before you can try the newish ones such as humira, i guess that's the NHS system for ya, all comes down to budgets etc.!Good luck and keep us posted of your progress.
    wenXXX.

     
    Old 10-03-2007, 03:50 AM   #22
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    Re: Pain...

    Hello baybreeze
    My doctor has decided that plaquinel and steroids are the drug to try for me, unfortunately i have now have amoon face and have put on about a stone so far, think it would help if i could exercise but due to pain am unable to at present. I havent actually started the plaquinel as yet as am a bit concerned of side effects, but think im am just going to have to get on with it as all drugs have side effects! Althouhg i have been dx with RA i am awaiting an appointment at a hospital in london which specialises in auto immune diseases, as they think i might actually have lupus! It's reassuring though to hear that you are doing well on plaquinel. Keep us informed of your progress.
    wenXXX.

     
    Old 10-03-2007, 05:45 AM   #23
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    Re: Pain...

    Hello, message for Wen,

    I have read your threads and wanted to talk to you as you live in England. I live in England as well and appreciate the NHS very much when reading how people in other countries have to cope with getting drugs etc.. I have been on all the DMARDS, sulph, mtx and leflunomide and am now on daily dose oral steroids. You mentioned that you were on steroids and plaquenil, I havent heard of plaquenil or been offered it, do you feel its working well? I have been trying to get the anti tnf drugs - humira or remicaide but when I was assessed my arthritis was quiet and only a few joints were hurting and didnt qualify for it!! I am back to rheumatologist in November to see where I go from here. I have psoriatic arthritis and have had it for 4 years, I have now had to give up work and a times use a wheelchair if my toes ankles and knees hurt too much. Are you still working? You mentioned meeting up with other sufferers do you know a website that informs of these organisations?

    Regards and best wishes,
    Ronnie

     
    Old 10-03-2007, 03:30 PM   #24
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    Re: Pain...

    Hi Ronnie
    Your right, although we pay contributions to the NHS atleast we have access to medical services as oppose to waiting till we can afford them! Im from East Anglia. Due to trying for a baby i havent actually started the plaquinel as yet but just take the steroids but the RA is getting worse so i know i will have to start the DMARDS soon! Another name for plaquinel is hydrochloquin, you've probably heard it called that. You could join arthritiscare and NRAS (National rheumatoid arthritis society) and ARC which are the main arthritis organisations. You soon realise that there are many people who probably live near you who are facing similar problems as your self. One thing i've learnt from other experienced sufferers' is that you have to be heard to get things done, so do keep going back to consultant until you are happy with drug/treatment. Am now not working, unable to drive most days, some times difficult to dress, bath etc..so am trying to rest at home as flares dont seem to be calming down really. What part of England are you from? Takecare.
    wenXXX.

     
    Old 10-03-2007, 04:01 PM   #25
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    Re: Pain...

    Hi Wen,

    Thanks for your reply. Having bad day today, swelling up and aching, flare on its way. I also live in East Anglia, Bedfordshire. I have been very lucky with my hospital treatment and my doctor is brilliant so wouldnt want to move away. Hopefully soon have something other than steroids. Do you have hot flushes on the steroids?

    Ronnie

     
    Old 10-03-2007, 04:22 PM   #26
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    Re: Pain...

    I am so alone with my health problems. Really. There is no one out there that have the problems I have caused by what caused mine and like mine. There are no support for any of mine. I wish even for just the osteoarthristis as minor and major as it was I could find one person to talk to.

     
    Old 10-03-2007, 04:57 PM   #27
    davidzzz
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    Re: Pain...

    Thank you all for all the comments... keep them coming. It's good to talk about it.
    As for me ? I'm doing o.k. Some of my pain is coming back due to ( I think ) the lower doses of Prednisone I'm now taken. My first six days of it came in a blister pack. You take 6 the first day, 5 the next, 4 the next and so on until you get to one a day. and thats were I'm at now. After the 4 a day is when the pain came back. My Dr. also has me on Plaquenil ( Hydroxychloroquine ) 400mg once a day. I've also only have had one shot of Humira so far. ( I didn't like giving myself the shot ! ) The next shot I have to give myself is Oct. 12 - it's every two weeks. Also taken Ketoprofen 75mg twice a day for pain. So folks I'm just going day by day and waiting to see if all this works. I don't go back to see my rheumey until Nov 28th. Oh yea... for got to add that I'm not really having any side effects from any of the drugs except a couple of times some light headedness and some pounding in the heart, that went away shortly after it started.
    Bye for now you all... Try and stay positive - it helps...

     
    Old 10-04-2007, 01:15 AM   #28
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    Re: Pain...

    Hello Davidzzzz
    Humira has received very positive reviews, some call it the wonder cure! Goodluck and best wishes, keep us posted of progress.

    Hello Becauseofhim
    Try not to feel so sad and lonely as you always have people on here that are listening and chatting to you. Am sure your doctor could help and there must be local/national organisations with in your own country/town to help with specific illnesses or even counselling services. Takecare.

    Hello Ronnnie
    Sorry to hear you've had bad day, every day something on me is swollen or unuseable, that's the joy of having RA (great isnt it)! Im from Suffolk, was in Bedforshire a while ago as went to Whipsnade animal park, a very nice place. Do consider joining the organisations i mentioned as they really are very good and have all the latest up to date info on all types of arthritis. Am looking in to trying to have use of a hydropool as this is ment to really help with pain and overall well being, plus it enables you to meet others who are in similar situation as yourself. Do you attend anything like this?
    wenXXX.
    wenXXX.

     
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    arava, bextra, celebrex, codeine, enbrel, folic, humira, ketoprofen, lyrica, methotrexate, mobic, relafen, vioxx



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