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Rheumatoid Arthritis
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Posted 4/18/2009 10:10 AM (GMT 0)
Some days are like that. Why won't my humira work like it used too and now my rheumy has bumped me up to 20mg per week of mtx and still I have pain! My lower back hurts and my osteopath thinks its arthritis, my rheumy says osteoarthritis, my hips are hurting again with bursitis, my thumbs ache and writing is getting hard, my heels hurt early morning until I get them moving. My doctor put me on anti depressants and the side effects are so bad I can't decide whether to keep taking them or not and today my neck is sore. I feel like what next? Sorry just had to have a rant, not sleeping much lately.
Posted 4/18/2009 10:34 AM (GMT 0)

Hi golitho,

I can relate to how  you're feeling.    I've been on Humira since last August and it was a miracle how much better I felt in a few months - HOWEVER, the past month or so I've been having a lot of pain and swelling for several days before it's time for my next shot.   I'm wondering if the New England Spring weather is a big contributing factor.   Going to try to tough it out till the weather squares away and see what happens but it is a real bummer.  I eally don't want to have to take any more drugs.  Today my hands are really bad.   Just listened to the weather and we're in for showers the next four days. cry

Hang in there and I hope you're feeling better soon.  No one knows how devastating this disease can be unless they suffer it themselves. At least we can come here and find others who can relate and know we're not alone. cool

God Bless,

Alicat

Posted 4/19/2009 5:17 AM (GMT 0)

I hear ya! I have many similar complaints....you think, "don't  I have enough pain to deal with? Why add more joints that hurt?"

Hang in there!

**

Posted 4/19/2009 6:19 AM (GMT 0)
"What's next?" you say to yourself.

That's what I wonder all the time. And I'm usually wondering if things are going to get worse. But there have been times when things have gotten better. There was one time my liver panel was so bad I couldn't take anything: no MTX, no diclofenac, no tylenol. I thought I was going to be miserable. But instead I had two weeks when I was feeling great. A few weeks later I got pustular psoriasis and arthritis so bad I could barely walk. But then I started feeling well, again, and got a new drug (Humira) that helped even more. When things are really bad, "what's next?" is generally something better.

Hang in there, we're rooting for you.

Posted 4/19/2009 1:52 PM (GMT 0)
I might as well jump in here too. I've been on Remicade for 8 months and it wears off sooner and sooner everytime. Right now my knees are so bad I can hardly walk and I have a month before my next infusion. I know I'm not suppose to do this but I take an Alieve occasionally and it helps alot. It seems to be the only thing that brings relief so by crackety I'm going to take em.
Posted 4/19/2009 2:42 PM (GMT 0)
Just wanted to say hope you have a better day tomorrow....((gentle hugs))

We all need to complain about this sometime, it somehow helps to try and begin "dealing" again.

Posted 4/19/2009 9:29 PM (GMT 0)
Thanks everyone, it is raining at the moment so maybe thats causing some of my hassles. I seem to have started with a cold too, cross your fingers for me that I don't get bronchitis this time. I think I'm a bit run down, but I really appreciate the responses, lifts my spirits to know you're all out there. thanks again, Golitho.

Posted 4/20/2009 3:46 PM (GMT 0)
Knowing there are people here who understand, has saved my sanity numerous times. Take some vitamins, drink lots of water, and rest, rest, rest! It sounds like you may be fighting something along with the weather hitting you as well.

It's hard when we see other people "push through it all" but I think most of us have learned, that's not going to work for us. So, listen to your body and take care of yourself while it's down.

Feel better soon!

Posted 4/21/2009 4:07 PM (GMT 0)
I know just what you mean!  especially when someone mentioned, what next? I have had RA now for over 4 years, and finally now just on the full dose of the MTX.  The Enbrel was just too expensive:( I also have Gastroparesis, which limits what I eat greatly, but at least I'm not tempted to eat any of the night shade veggies or other things that are bad for us (acidic) since they aren't digested and I also have the Interstitial Cystitis,and have to be careful about things that cause bladder inflammation,  so it just feels like what is next?? Holy cow, I'm 38 and have enough medical issues to be at least 60 or 70!!!  In the last couple of weeks I have been having these gripping chest pains, that hurt when I try to breath, but only last a few minutes, who knows what this is all about. rolleyes If I took all of the medications that I'm supposed to, it would add up to 6 different meds per day skull That is just too many, so I try to limit the meds, and just deal with the issues.
Posted 4/22/2009 1:21 AM (GMT 0)

Hi Momto, I haven't seen you around for awhile. Chest pains don't sound good, are you stressed? I'd go and ask about it, just in case its something more serious.

 I agree about medications, my doctor tried me on an anti depressant hoping it would dull my nerve sensitivity and maybe lower my pain level, so I thought I'd give it a go but the side effects were worse than the pain in the end, so after struggling with them for 5 weeks I've stopped taking them! Stopped my NSAID (mobic) kept getting stomach pains on that one. I've developed osteoarthritis in my lower back and the bursitis in my hips has come back, my knees are swollen but not too sore and I'm struggling with elbows and thumbs. So can fully relate to whats next. Though I must say you're gastroparesis sounds horrendous. I've had problems with recurrent cystitis in the past but it seems to have settled now. I have a lot of cysts on my ovaries, (polycystic) but thats familiar pain, so I tend to ignore it and just pop the codeine if it gets too bad!!! Sometimes I feel I must be paying off some huge moral debt I've clocked up and other times I feel like what can I learn from all this. Sorry to rave on, feel really low at the moment.

Posted 4/22/2009 5:12 AM (GMT 0)

boy oh boy do I hear that! when the world of pain came crashing down on me 15 years ago, I thought for sure someone had put a 'pox' on me, only I had no idea what I possibly could have done to deserve such a horrible fate.

Mom - are you drinking enough water, taking extra folic acid, and adding a B complex to your daily vitamins? I had bad chest and breathing issues on methotrexate. The doctors swore it couldn't have been it. They gave me breathing tests that didn't show a severe mtx reacation/issue....yet the problems disappeared when I stopped taking the medication and I had never had them previously.

Posted 4/22/2009 2:24 PM (GMT 0)
Hi Camama! The answer to all of the questions is no shakehead I admit there are days when I barely drink three glasses of water and rarely take my folic acid anymore, although some days I do remember to take my multi.  I have low B12 so maybe that doesn't help, and I never thought it could be the MTX, thank you for the heads up! I get the gripping, tearing pain about once a day, but I will make a real effort for the folic acid and water and see if that makes a difference, since it can't hurt!
Posted 4/25/2009 4:45 AM (GMT 0)

Honestly, I don't know if it'll help the chest stuff....the water might. But, i couldn't walk 30 feet away from a smoker walking by w/o having an asthma attack. I was that sensitive! I heard from others similar breathing and chest issues while on it.

Good luck. I know how hard it is sometimes to get the water down....with all these drugs. It's not your standard 64 oz...you are supposed to drink more than that, especially when on methotrexate (at least according my PCP). Some days I can't even look at the water glass! LOL

Posted 4/25/2009 6:12 AM (GMT 0)
Hi Camama, were you saying that you'rd tried humira and it hadn't worked? I'm flaring again. still have the cold so maybe viral. I think the humira works but just not enough. Unfortunately the mtx gives me mouth ulcers at this higher dose, but luckily hasn't made my asthma worse, seretide seems to have that under control. Plus I've always had the weak chest, got pneumonia and lots of bronchitis long before I was on any arthritis meds, can't say its worse for taking them, just takes longer to get rid of them when I do get sick. Knees, hips, elbows and thumbs, plus lower back driving me demented....

Posted 4/26/2009 3:56 PM (GMT 0)
Camama...I had an appointment with the rhuemy on Friday and mentioned my chest pain and he said he didn't think it was from my arthritis but if I kept having it to go see my pcp, so he wasn't much help but did offer to give me a handicap placard rolleyes I had told him that I try to get to the University early in the mornings to get a front parking spot so that I don't have to walk to so far and that I also take the elevator most days, but I can still walk after all.  There are people much worse off than I am, and I know a few.  I think I will save the spaces for them. I haven't been on the Enbrel in months because it is so expensive but I sure wish he would have presribed some wonderful prednisone so that I could take the stairs turn No such luck tongue Yes, it is hard to down all of that water and my husband and I were talking that for some strange reason it is easier to drink it from a plastic water bottle than it is from from a glass?? strange!!!! Are we an odd pair or what? smurf
Posted 4/26/2009 4:28 PM (GMT 0)
LOL! I find it easier to drink from a water bottle as well! I started using straws at home when I use a cup over a bottle. But, I refill water bottles as well when I have them on hand!

As for the parking placard, I feel/felt the same way you do, but here's what I've learned: Take it. Just because you have it doesn't mean you have to use it. But, you'll have it on hand for those days you just can't do it or you know you'll be on your feet longer than you can handle to get back to your car. I don't have one anymore, but there are days I wish I still did.....they cost, what - $6? It's worth to have on hand.

Golitho, no I have not tried Humeria yet. I was on Remicade for about 2 years and finally my system broke down that I was non-stop sick with infections and would actually start having allergic reactions while getting the infusion.

Again, my PCP and rhuemy AND the people who gave me the lung test all said the methotrexate was not causing the breathing problems, chest pains, etc. ..yet, it all stopped after I stopped taking methotrexate. And I never had them prior the drug either.

Posted 4/26/2009 4:42 PM (GMT 0)
Can I join the pity party? I don't have RA, but some other sort of autoimmune joint/tendon pain. I've been taken off my Naproxen because I'm having knee replacement in 10 days, and my shoulders are starting to complain loudly. By the time I check into the hospital, I may be non-ambulatory.
Posted 4/27/2009 5:49 AM (GMT 0)
Hi Judy - you are very welcome to join us! I'm so sorry to hear you are in so much pain waiting for your surgery. May your recovery be swift and sucessful!

Naproxen doesn't affect your UC? Just wondering.

Let us know how you are doing! Take care and best wishes for your surgery!

Posted 4/27/2009 11:39 AM (GMT 0)
Ugh! I don't have RA but OA in my hands (could be RA - who knows???) but I can definately relate to that darn domino effect! I used to have pain only in my middle finger of my right hand, now for some reason both hands are starting to swell, they hurt terribly and last night my left hand started burning and in fact, it's still burning. They were a little sore and swollen but then stupid me decided Hey let's pick up a rake and do yard work!!
Posted 4/27/2009 12:05 PM (GMT 0)
CaMama, I'm very fortunate that NSAIDS have never bothered my GI system at all. I do make sure to always take them with food, just to help maintain that record.

The thing about orthopedic sugery for me is that the operation is fine, postop pain is not an issue. It's the rehab that kills me. So, not looking forward to rehabbing at all.

I hope everyone is feeling better today!
Posted 4/28/2009 3:26 PM (GMT 0)

Camama...Straws tongue I use them too! that is hilarious! It just makes the water go down easier and faster..My husband has a dasanti (sp?) water bottle at work that he refills to get his water requirements.  As for the placard, at my next visit I will ask for the information to get it, since my daughter who is 12 keeps saying "just get it mom, you need it" and I do have one more semester to go at the University. Thank you for your input on that...I was listening to the radio one afternoon and the DJ said he was in a shopping center and watched a lady get out of a sports car with a placard and noticed that she didn't seem to have a disability of any kind and thought she was probably just using the placard to get a closer parking spot, and then many people called in with their two cents about how annoying they thought people were who didn't appear handicapped but used the placards anyway.  I guess if you don't use a wheelchair, or limp etc you aren't in need according to other people.  I know it isn't anyone else's business, but gee people sure make their business! sad

I wish I could take NSAIDS..I miss my Celebrex.  But after a couple of days my stomach feels like it is on fire..but if you can take those and avoid the more toxic meds, that is great Judy!

Posted 5/2/2009 4:25 PM (GMT 0)
There are always going to be jerks who are bent on making sure people who use the spaces need them. I got yelled at by somoene when I took my kids to school years ago (when I still had a placard) and was mortified - I just couldn't walk any distance w/o falling in massive pain, but because she didn't SEE me with a cane or anything she assumed I didn't have a card. I calmly told her I had a card and she said, "oh, I see it now." I felt terrible, but you gotta remember we fall under the conceled disease label many times and know sometimes we have to put up with idiots. If I start needing one agian more often than not, I"ll definitely be asking for one again (and if this new new knee problem continues or G-d forbid gets worse, that may be sooner than I'd like.)

Good luck.

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