Major Health Issues.......................

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Lone Gunman

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Mar 19, 2010
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I haven't said much about this, but back last winter I started having some major issues with the joints in my jaw, hands and feet. Not all of them but there were several knuckles/joints that developed knots on them and the were very painful early in the morning.

Went to the Dr and he did some blood work in March, which he said showed that I had Rheumatoid Arthritis? Scared the crap out of me and I immediately went looking for a Rheumatologist. Found out there was only ONE in town and the earliest appointment he would give me was December 22nd 2016? WTF? So I called my Dr back and told them what I had found out and they tried to get me an appointment at UVA, but, they put me on a waiting list with no promise of when I could be seen?

So here I sat with what I was told was a debilitating disease and NO Dr in site to offer treatment??

So I started loading up on NSAIDs, Tylenol and Tramadol to ease the pain and finally decided to look at some other cities. A Google search located a Rheumatology Clinic about 70 miles away in Danville, Va so I rolled the dice and called them. Lucky for me they had just started seeing new patients a week or so earlier and I got an appointment for the 23rd of May. Additional blood work done by the Rheumatologist office came back that I actually have Lupus erythematosus educed Poly Arthritis, Sjogrens Syndrome and Temporomandibular Joint Disorders. WOW?? Or more like WTF?? Looking back I could see that I'd actually had some of the symptoms for about 2 years before it was diagnosed.

So the Dr started me on Plaquenil and Prednisone to see if my system would tolerate those. Two weeks later I was off the Plaquenil and back to square one because I was having vision issues. Another blood test and the Dr put me on a stronger DMARD called Methotrexate (MTX) along with Folic Acid. I about had a heart attack when I looked at the possible side effects but hey, I had to do something, so here I sit now into my 4th week on that and so far no major side effects. Have another appointment for September 14th for more blood work and while I'm somewhat better I'm still not in full remission so I'm guessing he's going to up the dose of that MTX and I hope I don't loose my hair, which is one of many possible side effects.

Ennywho, at least I waited until I was 70 years old to get sick and since I'm in pretty good health otherwise, they say I could still live a somewhat normal life from here on out. Either way, this is the hand I've been dealt and I'll have to deal with it regardless.

So now you guys know what's going on here at my house.
 
Getting old just isn't as much fun as we hoped, is it? Sorry to hear what you are going through, that can't be fun at all.


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I hope things go well and you get a good report on the 14th. Keep us in the loop!
 
Hey LG, sorry to hear about your problems. The RA was what attacked my mother in 08, and about got her then. Actually it was a rare lung disorder that almost killed her, it was brought on by the RA, though. Now she has permanent lung damage and sometimes achy joints, but isn't on oxygen full-time any more. She's been on the metho for several years now, and I think only 5mg of the prednisone. So far both seem to be helping her a great deal, she pretty much does everything she used to do, but at 77 it takes more time of course. They test the blood for liver damage when you're on methotrexate, I think about every 60 days. She has a bad knee, but that was just old age I think. Something that may help for joint pain, if you haven't heard from anybody else=cherry juice. We get it on the big website that sells everything else, concentrated cherry juice. Tablespoon in some juice or tea, may help you, it has some natural substances like aspirin but without the stomach-problems you get from strong aspirin. Keep moving those joints, and let us know how you are progressing.
 
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Sorry to hear this, Gunman. I hope the meds get it under control and things get better.

I know it can be hard at first when you get a diagnosis of something like this, but hang in there!
 
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Methotrexate once a week and a shot once a week have allowed me to return to an active life. Prednisone didn't do it. Can't drink alcohol. Don't even miss it.

Right now I'm on 10mg MTX (4 pills) once a week along with 1mg of Folic Acid each day. I won't take Prednisone because of the weight gain that comes with it, along with killing what little libido I still have. :oldwink Right now I'm seeing some pain relief but I can still tell that the joints in my hands are swollen when I clinch my fists. Also have problems with joints in my left foot but it's not making me cripple at this point.

For the first few months I was on an emotional roller-coaster not knowing exactly what I was dealing with. If you do much reading on this stuff online it will scare the crap out of you so I had to start looking at what was actually happening rather than reading the horror stories others have posted. Seeing a Dr was helpful with this also as I got someone now that can answer questions that pretain to ME, and from what I've found there's no two cases of this stuff that are the same.

So what are you taking by injection and what were you diagnosed with, if you don't mind me asking?
 
Just an FYI for you in case you didn't know. Researchers strongly suggest that Lupus is or can be genetic but it hasn't been proven yet. (see link) And along that line, I've got a brother that's 10 years younger than I am who was diagnosed with Lupus over 5 years ago. His body attacks the platelets in his blood and along with the drug Plaquenil he has to have transfusions about every 18 months to build the platelets back up.

http://www.lupus.org/answers/entry/is-lupus-hereditary

There's a lot more of this autoimmune disease out there than I was ever aware of, until I got it. Now I know 3 other people/friends that have some form of it and I never knew they had it. One of those 3 one has RA and is on a BIOLOGIC drug that costs $2400 a month for 4 shots. Another with RA takes Plaquenil along with MTX and the 3rd hasn't seen a Rheumatologist yet so I don't know her exact diagnosis but preliminary blood work showed she tested positive.

And thanks to all of you for the "well wishes" and info.
 
Just so you don't go broke, check the Medicare Part D plans available during open enrollment next month. If your doctor wants you on a name-brand med, it could be better in the long run to get a more expensive plan that covers your meds well. Humira or Enbrel could be $20-30k/year without any insurance.

Edit: I'm not sure about this year, but last year Walgreens had the ability to look up the copays through different plans if you gave us your med list. You just need to come into the store and be patient as the computers can be slow.
 
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Hang in there Lone! Hopefully it will be manageable.

As an old guy told me many years ago when I was a youngster: "There's only one thing worse than getting older... that's NOT getting older." I'm starting to see what he meant as the years pass by.

<BIG HUG> for Lone Gunman
 
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I haven't said much about this, but back last winter I started having some major issues with the joints in my jaw, hands and feet. Not all of them but there were several knuckles/joints that developed knots on them and the were very painful early in the morning.

Went to the Dr and he did some blood work in March, which he said showed that I had Rheumatoid Arthritis? Scared the crap out of me and I immediately went looking for a Rheumatologist. Found out there was only ONE in town and the earliest appointment he would give me was December 22nd 2016? WTF? So I called my Dr back and told them what I had found out and they tried to get me an appointment at UVA, but, they put me on a waiting list with no promise of when I could be seen?

So here I sat with what I was told was a debilitating disease and NO Dr in site to offer treatment??

So I started loading up on NSAIDs, Tylenol and Tramadol to ease the pain and finally decided to look at some other cities. A Google search located a Rheumatology Clinic about 70 miles away in Danville, Va so I rolled the dice and called them. Lucky for me they had just started seeing new patients a week or so earlier and I got an appointment for the 23rd of May. Additional blood work done by the Rheumatologist office came back that I actually have Lupus erythematosus educed Poly Arthritis, Sjogrens Syndrome and Temporomandibular Joint Disorders. WOW?? Or more like WTF?? Looking back I could see that I'd actually had some of the symptoms for about 2 years before it was diagnosed.

So the Dr started me on Plaquenil and Prednisone to see if my system would tolerate those. Two weeks later I was off the Plaquenil and back to square one because I was having vision issues. Another blood test and the Dr put me on a stronger DMARD called Methotrexate (MTX) along with Folic Acid. I about had a heart attack when I looked at the possible side effects but hey, I had to do something, so here I sit now into my 4th week on that and so far no major side effects. Have another appointment for September 14th for more blood work and while I'm somewhat better I'm still not in full remission so I'm guessing he's going to up the dose of that MTX and I hope I don't loose my hair, which is one of many possible side effects.

Ennywho, at least I waited until I was 70 years old to get sick and since I'm in pretty good health otherwise, they say I could still live a somewhat normal life from here on out. Either way, this is the hand I've been dealt and I'll have to deal with it regardless.

So now you guys know what's going on here at my house.
i was diagnsed with ra years ago. i can not take any injections because of side effects. so i take nothing. my hands and fingers are badly deformed but i have been in remission for some time now.
 
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