Misc. Ramblings | Arthritis Information

http://www.springerlink.com/content/7873416104563028/

Gee..maybe I can fix my RA by coming down with a whopping case of chicken pox and pneumonia.

I'm finding some pretty interesting stuff as I prepare to make a decision on meds. My symptoms are progressing faster than I had expected (denial at play here) and I now have much more pain, swelling and yuk symptoms than 5 months ago when I began this journey.

I've also noticed that I have had more opportunistic infections-HSV1(3 bouts) and sinusitis that just doesn't seem to want to clear,in spite of Rx's for same and a lot of reflux. I think the latter is from all the NSAIDS I'm consuming.

Does anyone get inflamation and pain in the soft tissues? Right now, I have this localized swelling and pain on the back of my hand that hurts like hell when I flex my wrist up or down. It also feels like it could be inflamation in the veins/tendon sheaths...whatever.

Oh, and one more question. How in the world do those of you who take mega amounts/kinds of pain meds manage to function? I was recently given an Rx for 25mg demerol BID and was down for the count that whole day and a good part of the next. The only time I'll be taking those again is if I'm going on a long, boring car ride and don't want to crap for a week.

Hello Katalina,

Sorry things are progressing so fast! I don't have soft tissue issues or more infections luckily.

I was very resistant to taking pain meds. But after some trial and error I have 3 different type of pain meds for different levels of pain. I couldn't work if I didn't have them. I actually feel more energitic on them because my pain is reduced.

Hope things go better for you!
Katalina,

Demerol (meperidine) is often a poor choice for chronic pain management. It has a metabolite that tends to build up in the body that causes headache, confusion, aggression and seizures. This isn't usually a problem for acute pain (like the typical ER patient), but it can be a problem for long-term use (like a chronic pain patient).

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Katalina,I also am having problems with tendon sheath pain.My achilles tendon on the bottom of my heel has been very painful when im walking alot or sit down for a while and then walk.RD said tendon pain is common for sero-neg RA which I have.He would not give me a cortizone shot there as he said it would not help so I am off to PT for two months.I have had cortizone shots in my foot at the base of my toes for tendon sheath pain and it worked wonders.Maybe you should say something to your RD at your next appt.I also over react to pain meds,I have had good luck with motrin 800 for light pain an save the big guns for flares.This is all new to get use to.You will have to go thru lots of trial an error before you settle in with something that works for you.If you have any questions ask away, everyone is very knowledgable here about different things.

Katalina-

Immunocompetent? He was immunocompetent? What are we - immuno-incompetent! LOL

OK, from the AP perspective this is what happened. The old boy showed up with RA and was immediately diagnosed which in itself is pretty much a miracle. He's darn lucky he tested positive with those tests - the lucky bastard! So, they immediately put him on Pred and MTX - both of which suppressed his immune system. This in turn allowed the buggers to quickyly multiply so he ended up with a huge viral infection (shingles) and bacterial (pneumonia) so they put him on antivirals and broad spectrum antibiotics AT THE SAME TIME and whoa and behold - no RA for at least 2 years.

And every doc I ever saw thought I was a looney tune because I wanted AZT.

Morons!

Pip

www.roadback.org

Okay, we haven't done the chicken pox booster for my daughter because it is a live vaccine, so she is likely to get a mild case like her big sis did. But they don't treat it, as far as I know. They just treat symptoms. How did the guy get a med for it? Because he is old, or because he is in another country?

Ped rheum said my daughter looked the best he had ever seen after she had pneumonia. I can totally see how this could work. Why were these doctors so amazed? Suzanne, you can treat chickenpox with antivirals (acyclovir, etc). It is entirely unnecessary in most people, and the risk (side effects, viral resistance) are not worth the benefits to an average healthy person. If someone is having complications from chickenpox, or is in a high-risk group, many docs will prescribe antivirals. Dear Katalina, I know what you mean about that tendon/flare except mine was on the bottom of my foot. I was sure a cortisone shot would work (it was a bump, swollen, felt like walking on rocks), but my RA insisted it wouldn't help. I'm into 6 months of Remicade and finally ....no pain in the bottom of my foot! LyndaI guess since he had RA and pneumonia and was on immune-suppression, that made him high risk. Lucky dog LOL.

Probably because he had 2 things going on at the same time. Maybe because he's in another country. I know the case study I saw about the 19 yr. old in Belgium treated with AZT made me look at the NIH and when I was looking - NOTHING - absolutely nothing on antivirals and RA.

There amazed because they're in the auto-immune camp. It can't possibly be an infectious agent.

LOL

Pip

P.S. Katalina - sorry, not trying to take over your thread. I can't help with the pain meds - by the time they finally prescribed Vicodin for me I was already on antibiotics and didn't need it so much any more. I think I only took 3. I had soft tissue but that's gone now. Listen to Jasmine!

At his age it wasn't Chicken Pox - it was shingles - MUCH more painful. Girl I worked for was 2 years healing without antivirals.

Pip

And with regard to AP protocol treatment, I just googled a few sites for prices on the brand, pellet formulation Minocin. My God! $$$$

www.buylowdrugs.com

Shhhh! Don't tell the Canadians!

Pip

Arrrgh!

That's all I can think of to say: ARGH!

I just read that study. I mean, how hard is it to connect the dots here?
PS: You know what Pip? As much as it is our tax money, I get so aggravated at people who defend a system that lets fellow man suffer that I say Americans, order drugs from Canada any time!

(Although I have to admit I was a little peeved in Sicko when the American girl came to Canada and lied about citizenship to get healthcare. It wasn't so much that she did it but that she thought she wasn't hurting anybody. That is OUR tax money she's spending. But I'm glad she got help, and that's another story....)

Back to the current thread: ARGH.....

GoGo -

For the record, I know what I'm doing is 'wrong' but there was no other way at the time. I am just now starting the process of getting a lawyer to deal with the insurance company. Hopefully that will work.

I also am of the belief that when we're ill we can't do much about changing the laws here.

I'm better now so I'm working on this where ever I can. It's why I keep posting political links. We Americans need to protect ourselves and our children.

Pip

Pip, I guess it's a little bit wrong, but people not having access to the medications they need is WAY, WAY WRONGER, so until you guys get that healthcare thing sorted out I for one am prepared to live with a little wrongness if it means people like you can get what they need.

You know what's ironic? That Minocin people are odering from Canada is manufactured in the US.

Pip,

Thank you for the med link.

Question: I didn't see a brand listed or a mention of the pellet formulation, which is what I want. Please advise if this is where you purchase.

Thanks.

PS: Don't get me a'goin on the politics of US medical policies/practices/big biz/pharmalobby-politico bed partners....please don't open that door for me even a little crack. Grrrrr!

Katalina -

That's where I get mine. They have a really good rep. If the meds get stopped at the border; they replace. When I called to verify they got my order I spoke to a wonderful women who said "we only do the Brand, it seems that's all you guys want."

I think they know all about the Roadback. LOL

Pip

P.S. Thanks for understanding, GoGo.

P.S.S. Katalina - girl! We've got to talk. Something is really wrong here and nothing is going to improve until people DEMAND change.

P.S. GoGo - are you sure it's made in the USA? The brand is different colors here and there. I know because when it arrived I went online to verify. It didn't look the same. The interior did (little green pellets) but the outer is orange/purple-y.No I'm not sure, and I can't even remember where I got that now dubious
piece of information. The website says it's manufactured BY Steifel Canada,
but it doesn't say where.

So for now I'll believe it's actually manufactured in Canada, because then my
world will be just a wee bit less messed up.
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