IPRS Blog Pages http://www.palindromic.org/blog IPRS blogs powered by Wordpress Mon, 23 Apr 2012 06:50:15 +0000 http://wordpress.org/?v=2.9.1 en hourly 1 Does PR finally lead to RA? http://www.palindromic.org/blog/?p=146 http://www.palindromic.org/blog/?p=146#comments Mon, 23 Apr 2012 06:50:15 +0000 RajeshGhatge http://www.palindromic.org/blog/?p=146 Hi,
Does PR finally lead to RA? And, does RA lead to death? The background behind this question is that I am trying to get Life Insurance Cover. And, a few Insurers have put an exemption for RA as I have PR.
Cheers,
Raj

]]> http://www.palindromic.org/blog/?feed=rss2&p=146 0 http://www.palindromic.org/blog/?p=144 http://www.palindromic.org/blog/?p=144#comments Fri, 06 Apr 2012 21:16:59 +0000 busman747 http://www.palindromic.org/blog/?p=144 Firstly, I would like to contest on katies blog, her favourite version of “Hallelujah” Being from the UK, I think http://www.youtube.com/watch?v=xaWLsgxDzuw&feature=related is far superior – but I will admit to being biased!
I have just taken my 5th week of MTX and for those that are about to take this medication, I would say “Don’t worry!” Reading other peoples comments, some find that there are side effects but I have had little problem so far except a little nausea in the first week. My main concern is the dampening of the immune system. I presently have a bad cold with a blocked up nose, shouldn’t be unusual – except that I never get colds?? Another “strange” thing is that the other day, I had to take off my wrist watch because of a strange rash that suddenly appeared both under the strap and as far away as the joint of my thumb (around 2 inches away) this took the form of what seemed like blisters that were white, hot and itched like mad almost as if I had become allergic to the plastic of the strap? I likened it to a form of impetigo? but it cleared within hours of my removing my watch. (I have since put my watch back onto my wrist and have so far, had no problems.) Maybe, I am looking for problems that do not exist, I have started counting hairs that fall out when I am showering (8 that I have noticed so far)
All in all, I am very happy at the way things have gone, I haven’t had any flare-ups, just the occasional niggling pains which I can cope with. So far, MTX seems to be doing it’s job well.

]]> http://www.palindromic.org/blog/?feed=rss2&p=144 0 Hello everyone, http://www.palindromic.org/blog/?p=142 http://www.palindromic.org/blog/?p=142#comments Mon, 26 Mar 2012 00:09:55 +0000 busman747 http://www.palindromic.org/blog/?p=142 Since I started getting joint pains, I felt the need to keep a record. Not necessarily for public consumption but for my own benefit.

Can’t continue now ’cause I am up early in the morning but hope to start my journal regularly.

]]> http://www.palindromic.org/blog/?feed=rss2&p=142 0 What’s with the Methotrexate shortage? http://www.palindromic.org/blog/?p=141 http://www.palindromic.org/blog/?p=141#comments Sun, 04 Mar 2012 01:10:54 +0000 katie http://www.palindromic.org/blog/?p=141 Our news says there is a shortage of Mtx for children with leukemia How could they pharmaceutical companies allow this to happen? I have some left over that I would gladly give away, but that’s not safe. If I were still on it I would gladly give my prescription to a kid with cancer. That said, I still just can’t imagine how a mistake like this could happen. Terrible error.

]]> http://www.palindromic.org/blog/?feed=rss2&p=141 0 This stuff hurts http://www.palindromic.org/blog/?p=140 http://www.palindromic.org/blog/?p=140#comments Mon, 06 Feb 2012 17:02:52 +0000 lesliemc http://www.palindromic.org/blog/?p=140 I seem to flare up with stress and strenuous upper body physical activity. Is it wise to increase prednisone if one of theses situatioons is looming?

]]> http://www.palindromic.org/blog/?feed=rss2&p=140 0 How fast the year went! http://www.palindromic.org/blog/?p=139 http://www.palindromic.org/blog/?p=139#comments Tue, 31 Jan 2012 04:07:54 +0000 katie http://www.palindromic.org/blog/?p=139 My last blog entry was “GASP” a year ago! Where did the year go. I mean really?
It went from barfing on methotrexate to standing strong (relatively speaking) on prednisone. The evil drug, I praise the person who invented it. I limped around the yard and by fall it was gorgeous. I played on the floor with grandkids, I laid under electric blanket (another great invention). I fell a couple times. I got knee replacement authorized and then didn’t have it done. I got depressed, I had joy. Everyone got the wrong Christmas gifts because, although I had a great time dragging through the stores hanging on carts, I’m not about to do it again to make returns. I went back to work. There were more good days than bad.

I will never take feeling well for granted. I had ups and downs but it was a better year than the one before. For those of us with autoimmune disease that’s practically a triumph, or a gift from God.

I’m anxious to see what the next 12 months bring. It’s not in my control. What do I expect of 2012? I expect to be surprised.

]]> http://www.palindromic.org/blog/?feed=rss2&p=139 0 Who knows when the shoe will fall http://www.palindromic.org/blog/?p=137 http://www.palindromic.org/blog/?p=137#comments Fri, 01 Apr 2011 00:31:49 +0000 pwetzel http://www.palindromic.org/blog/?p=137 I was delighted today when my Rheumatalogist, Dr. Pierre Minerva, told me there is a website to help those suffering with PR. I have been to at least 25 doctors trying to get answers to what has been plaguing me for the last 36 years. I got PR when I was 22 and I am now 58. I became sick with migratory swollen joints in 1975 while on active duty in the US Navy. It started 2 or 3 months after I had a high fever and swollen lymph nodes. Over the years I have taken many different kinds of medicines even biologics which work for a few years and then suddenly stop working. Each time I would go to a different doctor I would ask them if ever heard of or had a patient with the same issues as me and they would always say no. It is so good to find out that I am not alone with this disease. Is there any research being done to find the cause of PR? Right now I am taking prednisone when I have an episode but it is bad for your bones. My doc gave me a brochure on Simponi but I do not hold much hope that it will work any better than Humera or Enbrel. My knees are most often affected but to tell you the truth it has manifested just about every where in my body. I am not sick every day but I am affected about 2 times a month. My gratitude to Paul for starting this website.

]]> http://www.palindromic.org/blog/?feed=rss2&p=137 0 Spoon theory in action http://www.palindromic.org/blog/?p=134 http://www.palindromic.org/blog/?p=134#comments Fri, 07 Jan 2011 18:21:55 +0000 katie http://www.palindromic.org/blog/?p=134 I’m on a ‘good’ streak so I’m going to journal just one day and see what it looks like on paper.
7:00 wake up…lots to do and nothing hurts. It’s gonna be a good one!

8:00 Coffee, checking forum and facebook. I stretch and hear some crackling and joint popping. This is usually a warning sign, but I have TONS to do and a hot shower will overcome it.

Made the daunting trip to the basement with laundry basket, I am invincible. Forgot one thing, make second trip..hmmm..one trip too many. Go into kitchen and realize that i hadn’t cleaned up last night because I was too tired. I start working on mess…ugh. Am I stiffening up or is it that I don’t want to do this job?

Do a sloppy kitchen cleanup using enough paper towels to make a forest – I feel badly about that. Polish some metal hearts for a valentine’s display at my store. I start polishing at sink, then get a chair-what dope would stand when she can sit?
Oh, I need some of the things in the laundry to make the above mentioned display. And it needs to be ironed. Grab healthy breakfast of Christmas cookie. Thumb and forefinger used in polishing start to throb.

9:30 – I decide that my spoon diary will only be for part of the day since I’m already over an hour behind. Oh crap – need a trip to basement to throw laundry in dryer, and another to take it out. Do I really need this stuff, and how long can it sit before it’s as wrinkled as a Charpei? Hell with it.

11:am Last entry because I’m so out of time. Had healthy oatmeal, hot shower, prednisone, fish oil but they didn’t work. By 10:15 was under hot blanket doing my ‘creative visualization’” “You are resting on a hot beach. You can feel the heat of the sun on your feet as they relax. You smell the salt air and your knees are covered in hot sand…” I dozed for a few minutes and now am up starting all over again.
I think my big mistake was starting the day with a deficit of spoons. Maybe I’ll change my schedule so that I start each day ahead of the game. Or, I’ll call the rheumy and tell him that it’s time to try some other kind of poison. Maybe I’ll do both, but in the meantime it’s going to be a l-o-n-g- weekend.

]]> http://www.palindromic.org/blog/?feed=rss2&p=134 0 diagnosed today http://www.palindromic.org/blog/?p=126 http://www.palindromic.org/blog/?p=126#comments Sat, 28 Aug 2010 11:31:32 +0000 chefette http://www.palindromic.org/blog/?p=126 was just diagnosed with PR today. yikes. lots to learn, adding it to all my other problems. They include Crohn’s disease and fibromyalgia. have been given a script for plaquenil. cant even start it until i see the eye doctor. more waiting and more pain. :( would love to meet others who are suffering from this too.

]]> http://www.palindromic.org/blog/?feed=rss2&p=126 1 kind of depressing song about invisible illness http://www.palindromic.org/blog/?p=125 http://www.palindromic.org/blog/?p=125#comments Fri, 16 Jul 2010 01:24:59 +0000 katie http://www.palindromic.org/blog/?p=125

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