OT Anyone on Plaquenil

[6PtStar]

I was sent to an Arthritis specialist who did a blood test and informed me I have Rheumatoid Arthritis. Wrote me a prescription for Plaquenil. When I went to check out I was given orders that I must have a blood test every two months and some kind of special eye exam every six months. At that point all kind of alarms went off. From what I can find this drug depresses the immune system, effects the liver and causes macular degeneration in the eye to a point some people go blind because of it. I am not sure I want to take it.

Just wondered if anyone here has had any experience with it. Thinking about trying to get a second opinion.

Jerry

[chunkyfrog]

Just checked it out on Wikipedia:
http://en.wikipedia.org/wiki/Hydroxychloroquine
It sounds like your doctor is being appropriately cautious--time to be optimistic, perhaps.

[Todzo]

I was sent to an Arthritis specialist who did a blood test and informed me I have Rheumatoid Arthritis. Wrote me a prescription for Plaquenil. When I went to check out I was given orders that I must have a blood test every two months and some kind of special eye exam every six months. At that point all kind of alarms went off. From what I can find this drug depresses the immune system, effects the liver and causes macular degeneration in the eye to a point some people go blind because of it. I am not sure I want to take it.

Just wondered if anyone here has had any experience with it. Thinking about trying to get a second opinion.

Jerry

Today I will likely spend an two hours on a cycle at the gym. One of the reasons that I do this is to keep arthritis out of my knees.
I have moved from pain ascending stairs which made me wince to no pain ascending stairs and kept it that way for over a year. Recently I have added weight to the exercise which brought the arthritis to my attention.

From: http://www.arthritis.org/conditions-tre ... arthritis/

- - - - -
Self-care

Self-management is an important part of rheumatoid arthritis care. Staying physically active is the key to keeping joints flexible. Too little movement can lead to joint stiffness. Strong muscles protect joints. Overall fitness improves health in many ways. Managing your weight, eating a nutritious diet and getting a good balance of rest and activity each day are important, too.

- - - - -

In my reading about microbiome I find auto immune disease mentioned often. The basics of obtaining and maintaining a healthy microbiome are simply to eat a large amount and good variety (try things you have never eaten) of veggies, fruits, and legumes.
Also fermented foods (yogurt (plain with no growth hormones), Kimchi, many others) would also be good to include. This both seeds and feeds the microbiome as the food will contain the microbial life and also provides a food source on which it can live. Stay away from added sugar.

The pill may get you through a crisis but long term I think that self care will get you further and in much better health.

[Thewino]

Star,

Plaquenil is classified as a DMARD (disease modifying anti-rheumatic drug). It is utilized as a first line defense med against many auto-immune disorders. Plaquenil can cause vision problems and this is why it is so important to see an optometrist before starting this medication so your eye physician can get a base line look at your eyes. In addition, you should see your optometrist every six months while on Plaquenil. If problems develop with your eyes, your Rheumatologist will immediately stop this medication. And, this is not a medication that one needs to be weaned off so you can stop it immediately without any ill effects.

To answer your question, yes, I take Plaquenil and I have had the baseline eye exam completed. The chances of developing eye problems are small but certainly need to be followed up on. Untreated rheumatoid arthritis can cause absolutely severe pain, unfathomable fatigue, cardiac issues, stiffness, and swelling.

Rheumatoid arthritis is an autoimmune disease so your immune system is attacking your own body. There isn't a single person who knows why this happens. Some people become debilitated, cannot work any longer, and have a very poor quality of life. The sooner you are treated, the better the outcome.

Plaquenil is the very first drug given for auto-immune diseases and if it works and helps you, consider yourself lucky as the other medications become progressively worse. Unlike the other medications, Plaquenil does not cause much immunosuppression.

Usually, insurance companies want to know that you have failed two of the three DMARDS (Plaquenil, Sulfasalazine, or Methotrexate) before bringing it to the next level and approving an anti-biologic medication. There are nine of these type medications so hopefully one will offer you relief. A couple of these type medications that you may have seen advertised on TV are Humira or Enbrel. All nine are injectibles medications that a nurse teaches you to administer to yourself. All nine of these medications are big time immunosuppressants. The theory is that since your immune system is attacking itself, you will be prescribed an anti-biologic medication to slowdown your immune response so your body cannot attack itself.

I hope this helps.
TheWino

[Goofproof]

That's the normal for these kinds of drugs, that's why I don't attempt to treat mine. Instead of treating mine and dealing with the side effects, I embrace the pain, that way I know I'm still alive. Jim

[6PtStar]

Right now I have no pain and have not had any for two months. I had a couple of flare ups that my PCP treated with steroids, went away very quickly. He originally thought it was Gout because my Uric Acid level was elevated. I understand the eye test but a blood test every two months, I already have three for my PCP and Cardiologist. That's 9 a year for the rest of my life, you have got to be kidding. I checked the Mayo clinic sight and it says there is no test for Rheumatoid Arthritis. I just don't feel like I have enough symptoms to go through this at this time, seems like the risk is to great.

Jerry

[chunkyfrog]

My osteoarthritis responds well to meloxicam and moderate activity (walking)

[Captain_Midnight]

Jerry, I just looked up Plaquenil online, and I understand your concern. (It's an anti-malaria drug adapted for other things)

While I am a scientist, I'm not a physician, and I don't recommend that anyone does or takes (or doesn't take) anything.

That said, it is sometimes worthwhile to read about alternative strategies, and maybe talk them over with your doc (or even get that second opinion).

I have arthritis in my lower back (much of it from distance running, much of it from stupidity).

I spent about a year in pain and low mobility until I went to a physical therapist who taught me more in an hour than I could learn from any other source. Part of what I learned was that my ddd (degenerative disk disease) was largely of an inflammation origin; and, if I treated the inflammation, (and did the exercises and stretches daily), I might avoid surgery. I did, and I did. My pain went from a Richter 8 to a Richter 1 (very manageable.).

So, as far as treating inflammation, I was not interested in steroids or nsaids if I could avoid it (side effects, dontcha know.)

Now, I take Vitamin D3 and fish oil supplements daily (perhaps a largish dose, but blood tests provide useful feed back for D3 supplementation).

I feel great, I'm running 10 ks and half marathons (not bad for a 65 yr old), and I'm not prescribed the drugs that scare me.

Again, this is not a recommendation for anything more than to (if interested) do your dd on Vitamin D3 and Fish Oil supplements; and to check w your medical professional.

Here are a few websites (can we give websites? If not, mods please remove.)

http://www.livestrong.com/article/46142 ... arthritis/

http://www.arthritistoday.org/arthritis ... sh-oil.php

http://www.lef.org/index.htm

Good luck managing that RA!


.

[Todzo]

Right now I have no pain and have not had any for two months. I had a couple of flare ups that my PCP treated with steroids, went away very quickly. He originally thought it was Gout because my Uric Acid level was elevated. I understand the eye test but a blood test every two months, I already have three for my PCP and Cardiologist. That's 9 a year for the rest of my life, you have got to be kidding. I checked the Mayo clinic sight and it says there is no test for Rheumatoid Arthritis. I just don't feel like I have enough symptoms to go through this at this time, seems like the risk is to great.

Jerry

Your mention of uric acid reminded me of this book: http://www.amazon.com/Fat-Chance-bitter ... 0095ZMPTU/

probably eat more fibre, less added sugar, and more exercise.

[Thewino]

Star,

You, sir, are exactly correct in that no one single test confirms or denies Rheumatoid Arthritis. It is a finicky disease and sometimes can take years to diagnose. The gold standard that would have your Rheumatologist starting care immediately is a very high RF (rheumatoid factor) lab along with an increased anti-CCP blood draw. They would start care that day if this occurred. The Rheumy always draws an ANA lab as well which measures the amount of inflammation in your body.

Another interesting fact which brings additional challenges to diagnosis is that as much as 30% to 40% of patients do not have changes in any of their labs at any time. They could still have RA and this would be considered seronegative RA.

Steroids make you feel better because they are an anti inflammatory. So, they decrease your body's immune response. They are utilized in patients with RA experiencing a flare - extreme swelling and pain levels off the charts. Long term steroid use is very harmful to your body so you don't want to take them forever.

Personally, I've been on a maintainence dose of steroids for two years. One of my major goals is to reduce and then eliminate this medication completely within six months. I need to find the right medication that will enable me to do this as any current tapering of my steroid dosage throws me into in instant flare and I cannot move much and spend days on the couch and in bed.

Another poster stated that they run marathons, have DDD (degenerative disc disease), and lower back pain all fixed by physical therapy. Rheumatoid arthritis and osteoarthritis arthritis are two very, very different animals. You cannot 'fix' RA with physical therapy. PT can improve your quality of life but you will still need to decrease the auto-immune part of RA or suffer the long term consequences. Because of my pain problems, I do pool therapy as a form of exercise.

I'm sorry about the lab draws. If you advance and take additional DMARDS with the Plaquenil or simply advance to a different DMARD: Sulfasalazine or Methotrexate, you will require even more labs. I currently take Sulfasalazine and Plaquenil and have a standing order at a local lab to have my labs drawn every two weeks as both of these medications are more liver toxic than Plaquenil.

The good news is that once you find the medication that works for you and your labs prove that your body can handle this med, your Rheumy will probably decrease the amount of lab draws.

Untreated RA can be fatal as it can do real damage to your GI tract, lungs, heart, and your eyes in the form of iritis or uveitis all caused by the unrelenting inflammation.

A second opinion is not a bad thing. For people that are seronegative, it can take up to seven years and many different changes in your Rheumatologist to reach finally reach the correct diagnosis. This can be maddening if your pain is severe.

If a second opinion confirms RA, you will need to wrap your mind around a lifetime of medications. Some of them in the thousands of dollars so hopefully you have a decent health insurance plan.

Regards,
TheWino

[49er]

I was sent to an Arthritis specialist who did a blood test and informed me I have Rheumatoid Arthritis. Wrote me a prescription for Plaquenil. When I went to check out I was given orders that I must have a blood test every two months and some kind of special eye exam every six months. At that point all kind of alarms went off. From what I can find this drug depresses the immune system, effects the liver and causes macular degeneration in the eye to a point some people go blind because of it. I am not sure I want to take it.

Just wondered if anyone here has had any experience with it. Thinking about trying to get a second opinion.

Jerry

Hi Jerry,

I am not a medical professional and have no personal experience with RA but wanted to mention anecdotal reports of people greatly improving their condition with the paleo diet.

2nd opinions never hurt, particular when the issue is a powerful med as Plaquenil sounds likes it is.

Best of luck to you.

49er

[Hawthorne]

I've had RA for about 22 years. I have progressed through a number of drugs in that time. I have blood work (CBC and liver function) done every month.

People who have it are really the only ones who understand it - even my Rheumatologist said that!

Finding the right drug cocktail FOR YOU (it will likely be more than 1 drug) AND doing THE RIGHT KIND of exercise daily is the key to controlling this disease, in my opinion. Eating a healthy diet helps as well but there is no diet or no particular foods that will make it better. I do pretty well.

I have had flares and I have and remissions but I still have it. It has been described well by the people here who have the disease. The others are speculating. It is very different from OA although you may have some of that as well - I do.

[robysue]

People who have it are really the only ones who understand it [RA] - even my Rheumatologist said that!

I do NOT have RA, but I have known people with RA. And Hawthorne is right: There's no way those of us without RA can fully understand the full affect RA has on someone's life.

Star, it's extremely important for you to remember that osteoarthritis (OA), which is very common, is a very different disease/disorder than RA. The causes of OA and RA are very different as are the treatments. In particular, OA is NOT an autoimmune disease; hence modifying the course/progression of OA by lifestyle changes is a reasonable expectation. But while lifestyle changes may help manage the pain of RA and help maintain joint mobility in RA, lifestyle changes by themselves are not going to address the underlying autoimmune disease that is at work. And hence, RA may continue to flare up and progress even if you're doing everything "right" from the lifestyle end of things---i.e. eating a healthy diet and getting the proper amount of the proper kind of exercises for the joints that are affected.

Best of luck as you deal with the RA too

[49er]

People who have it are really the only ones who understand it [RA] - even my Rheumatologist said that!

I do NOT have RA, but I have known people with RA. And Hawthorne is right: There's no way those of us without RA can fully understand the full affect RA has on someone's life.

Star, it's extremely important for you to remember that osteoarthritis (OA), which is very common, is a very different disease/disorder than RA. The causes of OA and RA are very different as are the treatments. In particular, OA is NOT an autoimmune disease; hence modifying the course/progression of OA by lifestyle changes is a reasonable expectation. But while lifestyle changes may help manage the pain of RA and help maintain joint mobility in RA, lifestyle changes by themselves are not going to address the underlying autoimmune disease that is at work. And hence, RA may continue to flare up and progress even if you're doing everything "right" from the lifestyle end of things---i.e. eating a healthy diet and getting the proper amount of the proper kind of exercises for the joints that are affected.

Best of luck as you deal with the RA too

Hi RobySue,

Actually, many people who had RA found that a paleo diet did completely address the issues at work. One person mentioned in a blog that she realized over months, she forgot to take her medication because it wasn't needed.

I realize this proves absolutely nothing and that this isn't going to work for everyone. But at the same time, I think the effect of diet is greatly minimized in the medical community and isn't going to be studied in clinical trials because this isn't profitable to drug companies.

And even if it doesn't completely relieve symptoms, it might make the difference between someone having to take a multi med cocktail vs. one drug. That could greatly impact somone's health in a positive way.

On a related note, Dr. Terry Wahls, MD, greatly relieved her MS (an autoimmune condition), by a paleo type diet after being in a wheelchair for several years. She now bikes 5 miles a day.

She did engage in another non drug treatment whose name escapes me but in my opinion, the diet still was a big factor. To her credit, she is running long term clinical trials to see if this outcome can be replicated with a scientific study. So hopefully, she will be able to afford to do this long term.

My point is I would never be so arrogant to suggest that diet and exercise are the answer to everything as I don't like it when people make that inference regarding my own situation. But at the same time, I feel the role of exercise and diet is greatly minimized in the medical community.

49er

PS - Thanks to mnevan, here is the link to Dr. Wahls talk on the subject:

viewtopic/t93934/OT-TED-talk-about-eati ... ng-MS.html

[Hawthorne]

You got it Robysue!

While OA is wear and tear on the joints and most people will get some as they age. RA is the body attacking itself. The cause of RA, as is the cure, is unknown. RA can run in families. After I was diagnosed, I found that an aunt of mine in Scotland had it. Even children get RA.

Your life changes but It can be managed with drugs and with exercises that will not do further harm to your joints and a healthy diet. All the drugs have many POSSIBLE side effects. All side effects that anyone on a drug has, must be listed even if the side effect may not be caused by the drug. Careful monitoring (blood work) will identify any side effects and you can come off more RA drugs without weaning (except for prednisone).

I trust my Rheumatologist and have for 22 years! She has kept me as mobile as I am - and that's pretty good! Unfortunately she is retiring next year!

I don't like being on the drugs but, so far, I am free of side effects.

I wish people here, who do no have RA, would not post in this thread. You give false hope and can cause harm or, at the least, delay proper treatment!

I have tried many of the so-called alternative treatments. I am only poorer and wiser but none of them did anything for my RA!

By the way, there are over 100 types of arthritis. Some are worse than others and RA is bad but not the worst type.

There are a lot more effective drugs available now than when I was first diagnosed so it can be better managed and less joint damage may occur if a person gets on these. They are not cheap! I am on one of the newer ones, in addition to a couple of the older ones but have been through many. Your body sometimes stops responding to a drug and another has to be tried.

You can live quite well with RA but do what you have to do to achieve that! A good Rheumatologist is key to successfully living with RA.