Arthritis?

[Bob_Skurka]

Bob, did you ever get the whole "you're too young to have arthritis" thing from people? That drove me nuts .

Eric, I was actually very lucky. As I stated mine was diagnosed when I was about 20 years old and it only happened because my dad had RA and I was exhibiting some of the same symptoms. I had very severe pain in my upper arms/shoulders and quite often could not lift my arms from my side (impossible to put on a button down shirt, dry after a shower, etc) so I was taking asprin until my ears were ringing, all the normal treatments. Finally my mom and my wife realized my symptoms were similar to my father's symptoms. I went to my dad's Rheumatologist and he started me on Plaquinil immediately. It didn't work for me, and has the nasty side effect of creating light sensitivity in some people. Every part of my skin that was exposed to sunlight burst out in red inflamed rash within a week or two of starting. I then went directly to Methotrexate. I've had a lot of ups and downs, but for the past couple of years (knock on wood) the RA has been in 'near remission' and as long as I don't over do things, I live a nearly pain free life. He has suggested I try Enbril or Humira (sp?) in combination with the Methotrexate and possibly other drugs, but my X-rays are not showing further joint damage. So he and I agreed that I will move to some other combination of drugs AS SOON AS there is any evidence that the disease progresses with further joint damage. Until that time, I'm content to feel pretty good!

I do also think there is a MENTAL component to RA that is a very big problem. It is easy to go into serious depression. And again that is another reason why I keep harping that people need to go to a Rheumatologist as quickly as possible. Run don't walk. The faster they get your physical pain under some level of control, the quicker you can figure out that you won't end up in a wheel chair or hospital bed for the rest of your life.

 

[roxynoodle]

When people tell you you are too young to have arthritis, just remind them that even some children have it. That usually stops them in mid-mouth. When Lyme disease was first discovered, it was the children who were the most common victims. All they knew is that they had a large number of children in Lyme, Connecticut with arthritis, which is what caused them to begin investigating the cause. Children can also have RA and Lupus. I also tell people there are a lot of different kinds of arthritis, not all of it is osteo.

I got a surprise day off work due to heavy fog! I'm taking a lunch break right now, but then back to my stone veneer. Hopefully I'll be feeling ok tomorrow.

 

[Phils]

Twenty years ago, 6 months after I'd removed a tick from my underarm that had been there for a few days (combination of circumstances that I didn't find it sooner) I began to have symptoms of arthritis. Daily I'd wake up with one or two more fingers that wouldn't bend, first affecting one hand then gradually moving through the other. I'd read about Lyme disease so I naively went to Urgent Care and asked to be treated for it. "We don't have Lyme Disease in this part of the country" I was told. They made me an appointment with an area RA specialist. That appointment was a couple of months away and at the speed I was being affected, I felt I'd be in a wheelchair by that time.

I went to my regular doctor (my, how hindsight shows one the right decisions). He didn't know a thing about Lyme disease. But he sat down and read about it for 20 minutes and then said he'd prescribe an antibiotic that would either cure it or do nothing, as antibiotics won't help arthritis.

Two days later I was free from the arthritis in total. My doctor kept me on the antibiotics for 6 months as the spirochete (sp?) had been "in me" for that long and had migrated into areas that could only be fixed by taking the medication that long too. It's been twenty years and I've had absolutely no other symptoms of arthritis or anything else that could have been caused by Lyme disease.

I consider myself VERY lucky! I think there must be MANY people with the disease that get misdiagnosed. I also now understand how painful and debilitating arthritis can be.

Oh, and the evening I got home from seeing my doctor, there was an article in the local paper that the "The first case of Lyme disease" had been reported in our county..... unfair as I'd "reported" my case a couple of weeks before.

Phil

 

[3RRL]

Thanks for this thread.
I have suffered for years with pain thinking it may be from sports injuries and basic abuse of my body over the years. I am still very active but have found warming up takes forever and afterwards, there is the pain. Not so much during the activity where I actually feel better, much like Bob describes. It has gotten to a point now where I am constantly in pain. At one time I thought I might be suffering from a kind of Fibromyalgia but my wife thought I was crazy.

I never thought about RA until reading this thread. But thinking back to some blood work done a couple years ago, the test came back with elevated RA levels. I have made an appointment with my Doctor this morning to discuss these possibilities and get a referral to a Rheumatologist. It would be nice to have at least one pain free day before I die.

 

[Dargo]

As Bob knows, I got the test results a couple of years ago verifying that I had RA. My physician told me that I did about 3 years ago, but I put off getting the tests done just sort of hoping it would go away. It didn't.

Since my RA seems to be very slow at it's progression I'm opting to simply "ignore" it as much as possible. I used to be into very heavy weight lifting and competing. The extremely heavy lifting is out. I've squatted, in sanctioned competition, over 700 pounds before. I'll never see that again. However, I still use the same lifting routine as before, but I just go much lighter on the weights. I have my physician's blessing to do this and, so far, so good. I'm not taking anything yet for the RA. I can't remember to take a vitamin, so I'm sure I'll be terrible at remembering to take any meds.

My physician told me that I'm basically in denial, but it seems to be working for me. Some days are worse than others, but I get by. The worst thing to my workouts now being more cardio than heavy weight is that I cannot tolerate getting overheated. Eight years ago I had a rather serious heat stroke while out digging downspout drain ditches on a 103 degree day. I only had about 20 feet left to do of the approx 180 feet I dug by hand and I just didn't want to quit. I was dizzy, my mouth was dry, and I'd stopped sweating (now I know all those were bad signs). I tried to push on to finish the ditch but my wife found me about 10' further along face down in the ditch unconscious. I don't want to make this serious of a mistake with RA, but I don't see it hitting me all the sudden like a heat stroke. I can't stress how much I regret not stopping that day and ended up with a serious heat stroke. I only mention that in hopes that I may possibly have one person recall my incident and stop when they begin to show the signs of heat stroke. Trust me, it's not worth pushing on.

 

[Bob_Skurka]

Since my RA seems to be very slow at it's progression I'm opting to simply "ignore" it as much as possible.

My physician told me that I'm basically in denial, but it seems to be working for me.

Dargo, as we've discussed via email, you are playing with fire. What is happening is that your joints are deteriorating and your body can't repair that damage. While it does not hurt you too much YET, when it hits, there will be no turning back.

I've said it before, start treatment.

 

[Dargo]

Dargo, as we've discussed via email, you are playing with fire. What is happening is that your joints are deteriorating and your body can't repair that damage. While it does not hurt you too much YET, when it hits, there will be no turning back.

I've said it before, start treatment.

(Said as I look at my shoes) Yes Sir. I understand. You're telling me that actually getting the blood and other tests to confirm RA and getting a prescription (never filled) for that "methotricky" stuff isn't quite enough.

I suppose I'll have to call my Doc now, that scrip is over 6 months old. I doubt that the pharmacy will fill it now. Does it make you sick or feel weird or any stuff?

 

[Bob_Skurka]

Does it make you sick or feel weird or any stuff?

I have not known anyone who has had any weird side effects from Methotrexate. Ditto Enbril. Ditto Humira. I experienced some side effects with Plaquinil and had to discontinue use of that drug.

 

[roxynoodle]

3RRL, I also have fibromyalgia. The symptoms are muscle and soft tissue pain, migraines and sleep disorders. It can easily be diagnosed by a rheumatologist based on a pressure point test. If I recall, there are 17 pressure points he/she will press on. I think that if you have at least 11 of them, that qualifies you for fibromyalgia. I think I had 14. You can look this up online to learn more. It is largely untreatable though. The fibro is one reason my RA diagnosis took so long; many of the symptoms are similar. Actually, although RA is probably the most common disorder, there are about 100 disorders with the same/similar symptoms. There is one auto immune disorder that only affects men. Many of them, including RA, primarily affect women, so guys be aware that your doctor may not bother to test you despite your having the symptoms. Strangely it can also affect men and women differently. Men are more likely to have lung involvement with it.

BTW, I was also told that Lyme disease was not in my area. There have been recent cases on the news though of people who did in fact get it here. There is no good test for that though either. Mine was "indeterminate"... there is a range between positive and negative and that's where I was. If you know you were bitten by a tick, demand treatment. If it gets past that early stage I don't think there is any cure.

 

[utahmule]

Bob,

Enbrel is what really saved me a quality of life resembling me prior to RA. I've experienced no side effects whatsoever in almost six years. The downside is it must be refrigerated, and is only available as a subcutaneous injection. It used to be twice a week, but changed earlier this year to once weekly.

The subcu is a really small needle, and is poked in the belly, upper thigh or arm area, just not in the buttocks. It's nothing that any insulin dependent diabetic wouldn't laugh off . Humira has a pen-type needle thingy, similar to the ones for anaphlyactic shock (Bee allergies, etc.) it still counts as a perforation .

There's an article in this month's Arthritis Weekly about new studies on the fficacy of Enbrel and Methotrexate in combination. It says the rate of control is pretty darn good, better than thought previously. I don't remember the specific numbers. I've had minimal side effects from the metho. The only thing that really gave me side effets was seriously big doses of predisone that were used before I got on the Enbrel/methotrexate regimen.

I agree wholeheartedly about the mental aspect. Untreated, RA can and will rob you of the things you love, and anybody would get depressed about that. not to mention the severe pain driving you nutty after months on end without relief.

Roxy,

I here you about kids getting all the crummy diseases. it seems a lot of people aren't aware of it.

Rob,

I know what it's like to yearn for pain free days. I can't agree with Bob strongly enough, get thee to a Rheumatologist. I have to travel a good three hours to mine currently, and it's soooo worth it. RA is not well understood by most docs, (not a rip on them, it's a hard one to diagnose and treat) making a Rheumatologist vital.

Dargo,

The risk of no treatment with slow onset is that by the time you seek treament actively, the damage is done, and irreversible except for joint replacement surgery. When I saw X-rays of my joints, and the damage done in a short amount of time it was shocking.

My apologies if any of this sounded preachy, that was not the intent by any means. I was off work for 6 months from the stuff, and it has really changed the way I can live my life, so I 've thrown myself into keeping up with any ways possible to treat it and get as much back as I can. To all my RA suffering kin, I really feel your pain and frustration. If I see one more Aleve commercial "just one Alve,and my arthritis pain is gone!", I'll explode.

Tractor-related content, the RA was the prime reason I got the HST on my JD.

 

[Bob_Skurka]

My apologies if any of this sounded preachy

AMEN And what you wrote to Dargo is what I was trying to say but didn't say as well as you said it!

If I see one more Aleve commercial "just one Alve,and my arthritis pain is gone!", I'll explode.

I think sufferers of RA are in a whole different category of pain than the folks lucky enough to ONLY have Osteoarthritis. The diseases share part of the same name but they are DRAMATICALLY different in what they do to your body. Aleve will help people with Osteo, but unless you take massive doses, it won't even touch the pain caused by RA, and it sure won't work for more than a couple of hours and won't be very effective even for that short duration

 

[3RRL]

Well,
I took the first step and went to the Doc. He set me up for a physical, x-rays and complete blood/lab work. He also gave me a referral to a very good Rheumatologist in Pomona. Not my town, but well worth the drive. My doc is a D.O. so he is very hands on. He wants to review the tests so he can talk with the Rheumatologist in a manner that best addresses my problem(s). That way, the Rheumatologist will be more informed of my over all health instead of just looking at lab results. He explained a lot to me and is quite "up" on this.
Thanks again.
Oh Roxy,
The reason I said my wife thinks I'm nuts because she is under the impression only women suffer from that (fibromyalgia). I told her so we'll see about that? I have associated muscle pain all the time and at least to check that out too. Like you said, similar symptoms?
Dargo,
I see you are still actively training but obviously reduced your routines? In my day, (late 60's and early 70's) I trained very heavy with many of the big boys out here in Southern California (including Arnold and others) My best total was 1950lbs as a 242'er and I'm sure it has a lot to do with how crappy my joints are now. I still exercise daily but it is only that ... no weights. I've cut down to 189lbs at 56 and in pretty darn good shape other than the daily pains.
I'm glad I read this thread. Thanks for starting it Nat and all the great input from everyone else.

 

[roxynoodle]

Well, a much higher percentage of people with fibro are women, but men can get it too and that's another one that can unfortunatly affect children. They will probably also run an ANA blood test on you because lupus causes muscle pain as well as arthritis. 90% of lupus sufferers are women but that means 10% are men. That's not insignificant. I don't remember the stats on fibro but I know men get that also. In fact, it affects 3% of the population, which may be higher than RA. A lot of people don't consider it a real disorder though, which drives me nuts. If I have 14 pressure points on my body that give off tremendous pain when touched, it's real! My ex husband never believed me that I couldn't carry heavy or long objects over my shoulder. Well, now I know why, my shoulders are where 2 of those pressure points are. At the time all I knew is that if I did I got a pain that could bring me to my knees. And when the fibro flares up, so does the RA and vice versa. Right now I'm paying for my 8 hours of putting up the stone veneer yesterday. Joints all swollen and red. I still think it's better for me to continue my lifestyle as much as possible because otherwise I tend to feel like a useless blob waste of oxygen.

And, for everyone seeing a doctor for the first time for possible RA/related disorder symptoms, please bear in mind that the average length of time for diagnosis is 4 years. It can be frustrating as all heck. I wish for all of you, a speedy diagnosis but it took nearly 10 years for me. I especially hated people asking what was wrong with me and my having to say, I don't know, no one knows. A lot of them just think you are nuts then. Others see your red swollen joints and are more understanding or they think you will give it to them. Just hang in there though, eventually there will be an answer for you. And try to remind yourself that as bad as it is, you don't have to look far to find someone who has it worse. I actually feel better finding people on this forum who understand.

 

[Nat]

Bob, Maybe everybody alread know this, but I have found that taking Motrin and Tylenol Arth pain reliever mixed together helps some. My sister is a nurse and she has had me taking both at the same time for years, something about the combination makes it better. I take 2 of each when needed. I know this is more than they reccomend, but I'm also 215 lbs and I've always heard the the dosage on the label is for a 140lb person.
I've found a Rhumitoligist (sp) and am waiting for an appointment. I went to a flea market on sat. and after walking around all morning my heels and ankles hurt like the dickens all day sunday. I felt fine this morning so I cut out a window in the foundation , through 12" block and installed the window today, guess I'll be taking the day off tommorow to recuperate. What the hay, al least I can still get something done even if it makes me pay for a couple days, Later, Nat

 

[Bob_Skurka]

I've found a Rhumitoligist (sp) and am waiting for an appointment.

That is the first step to feeling better! One thing about threads like this, they actually provide some help and some hope to people

As for the Motrin/Tylenol mix, I'd not heard that one. I know for children it is often recommended to ALTERNATE those two drugs every 4 hours. The child first gets one, then 4 hours later the child get the other one, then 4 hours later gets a second dose of the first one, etc.

 

[N80]

Interesting discussion. A lot of good info. Some less good. I won't spend any time nit-picking technical stuff. The advice to see a rheumatologist, or an internest with experience with rheumatological diseases is a good idea. Any competant internest or family practice physician can tell you if a consultation with a rheumatologist would be beneficial.

There are two things that I'd throw out:

First, rheumatoid arthritis is often misdiagnosed in both directions. Sometimes the diagnosis is missed. Sometimes it is made erroneously. It can be a tough disease to nail down, even for rheumatologists. This frustrates people who really want a firm diagnosis like you can get with strep throat or high blood pressure. And sometimes this makes them think their doctor doesn't know what he's doing. I get lots of reports back from rheumatologists with 'tweener' diagnoses like seronegative RA or unspecified connective tissue disease. So find a good doctor that you trust and be a patient patient. Diagnosis can be difficult and treatment can be hit or miss. And for those few who criticize doctors in general for not having a magic pill, well, it may come as a shock, and many of us might not like to admit it, but we can't fix everything and often times 'fixes' can be nearly as bad as the problem. That's not an excuse, its just reality.

Second, I think folks need to be careful comparing the effects of RA vs osteoarthritis. While RA is a systemic illness and can be severe, the truth is that OA can be equally as painful and debilitating. OA can destroy hips, knees, hands and feet and result in deformity, severe pain, loss of mobility and independance. Erosive OA and OA of the spine can cause significant morbidity. OA is much more common and often no more than a nuisance, but severe and debilitating OA is hardly rare. And similarly I have patients with RA who have it very mildly and have little pain and take no meds. So just be careful about general statements about which one is 'worse'.

 

[roxynoodle]

He gave me Mobic to try. It is an anti-inflammatory (NSAID). Other than not taking it with other NSAIDs like Ibuprofen and watching for signs of GI problems, is there anything else I should know about this med?

 

[N80]

Just like all NSAIDS it can cause liver and kidney damage. This is uncommon and typically only seen with long term use. Routine blood tests done once or twice a year are sufficient. Mobic is less likely to cause GI (stomach) bleeding than some others but it is still a possibility. Generally an effective and well tolerated medication.