My husband has just been diagnosed with rheumatoid arthritis.:( He has a mild/moderate case. He's been prescribed plaquenil. In reading about it, two big concerns regarding side effects are eye damage and immune suppression.

If anyone takes this, can you share your experience with it? Have you gotten more frequent colds since you've been using it? Would nutritional supplements help? Have you had any eye problems?

Unfortunately, the rheumatologist hasn't really given a whole lot of information - my husband has had to ask a lot of questions, and while that's fine, it's discouraging that she's not been very helpful in general. It's sort of like, "Well, you have RA".....and so??????

She didn't mention anythiing about the risk of NOT taking medication. It's my understanding that w/o meds, damage to the joint tissue is inevitable. Because his case is somewhat mild (at least as it is at the moment - she didn't ask much about his history with it which has had more painful flare ups), we are hoping to research much more and be able to use natural methods to both control pain AND stop long term damage. Is that possible?

Thanks for reading my long post!!

we are hoping to research much more and be able to use natural methods to both control pain AND stop long term damage.

Hi JD,

I was rxd Plaquenil for RA confounded by a number of other collagen vascular diseases. But since I know 2 folks who suffered irreversible vision damage & a number who were on it for years without significant improvement, I passed on the Plaquenil. The vision damage was not blindness but blurring, however, not something fixable with lenses. I have also met some folks who love Plaquenil, use it for years successfully. But I didn't want to take a risk.

Dietary connections are worth looking at. Several research studies have shown that a subset -- I believe about 20% -- of RA sufferers are diet-responders. Those who did respond to dietary change had significant benefit, most being able to reduce or come off of meds. The tricky part is finding the food trigger. Dairy, egg, gluten, citrus, peanut, corn, beef -- many foods have been implicated, but this is a highly individual thing.

Personally I have had considerable success removing nightshades from my diet. My symptoms still occur with weather changes, stress, & who knows what else causes a flare -- but they are greatly notched-down in frequency, extent, and intensity. Before starting NF diet, I did a baseline for 3 weeks, where morning & evening I scored, 1 - 5 scale, every red, aching, inflamed, painful joint. Before NF diet, I never had fewer than 11 joints in my hands that were inflamed & painful. Needless to say, this interfered a lot with my ability to care for myself & accomplish simple tasks. I am now more than 2 mos. into the diet, and never have more than 3 hand (finger/wrist) joints active. I am able to wear my wedding ring again, and do so many more chores as my finger strength increases.

A nightshade-free diet rigorously excludes: potato (incl. the starch), tomato, eggplant, tobacco (incl. 2nd hand smoke) and peppers (bell & spicy type, including dried spices like chili pdr, paprika, cayenne, & spice blends). Nonorganic soy has also been added to the list, since 80% of US soy crops are genetically modified with a petunia gene, thus putting GMO soy into the nightshade camp.

I found the diet fairly easy to follow, except for a lot of label reading on commercial products at first. To learn more about NF diet, I recommend the book, Arthritis -- A Diet that Stops It! by Norman Childers. There is a great NF cookbook available with alternatives for ketchup, tomato sauce, Mexican dishes, salad dressings, potato salad, etc.

Nightshades are very toxic to mammals. In grazing animals, those that survive nightshade consumption (many weeds are nightshades) suffer terrible, crippling arthritis. This information was the impetus for Childers, a horticulturalist, to do an experiment on himself with NF diet, about 40 yrs. ago. Since that time, many people have found benefit from removing nightshades.

Another book that I found very helpful, and one which I believe every RA sufferer should consider reading, is the book, Arthritis: The Simple Solution, by Virgil Stenberg. This book tells the story of Helen, a lifelong RA sufferer, and the program designed by her husband, a chemistry professor, to successfully treat her RA.

Both the Stenberg approach and the NF diet are things not commonly promoted by the medical profession.

There are many drugs available to treat RA, however none of them is without significant risk of side effects. IME, the newer the drug, the more expensive & the more that is unknown about longterm side effects. Virtually none of the drugs cure RA in the sense that the drugs can be discontinued, so most medical treatment is long-term management.

For inflammation, I have found tart cherries & serrapeptase, a silkworm enzyme, very helpful. If you try cherries -- juice, dried or fresh, consume close to bedtime, as they do contain melatonin & can make one sleepy. Examine the label of tart cherry juices carefully; many contain mostly apple juice, which won't hurt you but also doesn't have the active anti-inflam compounds that cherry has.

Best wishes.

elmhar,

Thank you so much for that information! I've read about the nightshade foods and that many have noticed a significant improvement by not consuming them. I'm glad to hear it's helped you - dh may give it a try for a while to see if it helps. I do have a list of natural foods that have been helpful in RA. Right now we're starting to look into glyco nutrients - apparently there is a good amount of solid science behind it.

I'll check into both the books you suggested. I'm planning to get a hold of them either at the library or purchase them through amazon or something.

Thanks again!:)

Anyone else that takes this wanna weigh in? :D

I've been taking Plaquenil for almost two years now. It takes about 8 weeks or so to show any improvement. Sometimes less sometimes more. I have much less pain and stiffness in my hands now then before I started the Plaquenil. My aunt has severe RA and has been on Plaquenil for over 18 years with no problems.

Plaquenil actually does not suppress your immune system. It can cause vision problems, but it's very very rare. I get my eyes examined every 6 months. The only other thing is that I had an upset stomach when I first started taking it. Nothing major, just annoying. That went away after a week or so.

I too have been given plaquenil for my RA and I have had no issues. My rheumatologist makes me get my eyes checked every 6 months to be safe but as you have read this is a rare side affect. I like the plaquenil because it has lessened my symptoms in the morning especially. The stiffness in my hands, feet and knees does not last near as long as before. Where it used to take an hour or two to get everything to loosen up, now I'm in good shape after just about 30 minutes. I also have much fewer flare ups than in the past.

I also have a prescription for Celebrex but only use it when I have severe flare ups as I don't like the fact that NSAID's raise your risk of heart attack.

I have had very good luck with the plaquenil. Good luck!

Tony

Thanks for the helpful info morrison and Toneman! I appreciate it. :)

Dh started on the plaquenil last night. So far he's taken 2 doses and hasn't had any issues, but it may take time if he's going to.

The pharmacuetical information sheet on the drug says it's an immunosuppresant. Those with RA have overactive immune systems (makes sense being RA is an immunological disease and the body is essentially attacking itself). That was the concern we had in that regard - exactly how much the immune system is supressed and if that makes him more prone to colds, flu etc.

:)

Jeff'sdawn,

I just replied to your other post and in that reply I asked what medications your DH was prescribed. Wished I'd have read this first! Now I know.

I also take Plaquenil. I've been on it for 2 1/2 years. I haven't had any problems with an underactive immune system. I have been very healthy. I don't recall anyone ever saying that they've had any trouble with an underactive immune system while on Plaquenil either.

It took about two months before I got the full effect. It has significantly reduced my pain and stiffness. It has done wonders for my fatigue. I now only experience fatigue during a flare. I was a little sick to my stomach the first week or so, but that passed.

I hope it helps your DH.

Thanks so much C!

I just finished reading your reply on my other post! LOL

Thank you for the info on both! It helps tremendously! Don't be suprised if I ask you more questions in the near future on this! :)

No problem! I lurk quite often.

I have been on plaquenil for 3 years. It has helped me alot. Now I am experiencing a great deal of muscle weakness. Initial tests show myopathy. I was sent to a neurologist specializing in neuromuscular diseases. He said the myopathy could be from plaquenil !!! Has anyone ever heard of this? I thought he was going to say it was from being on prednisone for the last two years but he said no to that and said it could be the plaquenil. I am having another EMG/NCS and brain, lumbar, thoracic and cervical MRI's on the 27th.

I will be intereseted to hear if anyone has experienced the myopathy from plaquenil. Thanks, Bern :wave:

I've only been on Plaquenil for about a year and a half, and haven't experienced any side effects.

However, I did a search for "plaquenil myopathy" and it is listed as one of the more uncommon side effects. The good part is that it said it's usually reversible after discontinuation of the medication, however that really sucks if Plaquenil is helping you. :(

Anyway, good luck to you!

Bern,

This is scary. I've been on Plaquenil for 3 1/2 years. I've been having problems with weakness in the muscles in my arms. Some times I can't even hardly comb my hair. My arms have this achey, burning, tired feeling. I very rarely take prednisone - only about 15 days every three months or so.

Are you having any other symptoms?

Cheri.

Hi, Just to add my 2 pence in - I took Plaquenil for about a year without any major side effects except my hair started fallling out (not in a major way - I have very thick hair and it just got thinner) My main concern about this drug is that they dont really know why it works as far as I could work out from my Rheumy. It is an anti malaria drug that when used on a bunch of people with joint problems as well as malaria they realised thier joint problems cleared up too...I have stopped taking it now as we want a baby and it takes 4 months to get out of your system and can cause birth deffects ( and my hair is growing back where I lost it so I look about 8 with fluffy bits at my temples!)- its also quite hard on the liver as it is supposed to be quite toxic, so if you're open to the natural stuff I was advised to take milk thistle as a supplement at the same time to keep my liver tip top. I wanted to write this to reassure you but looking over it I'm not sure how positive it is - it sound like youre doing all the research and diet can make a big difference if you keep your foods whole and fresh. HOpe this helps:wave:

Hi Cheri,
The feelings you are experiencing in your arms sound just like me. I told my doctor it is not pain - it is an achy, tired, weak feeling. I know just what you mean about your hair - I have short hair and I have to rest my arms while blowing it dry. It is now in my legs and the lung doctor said also affecting my lung muscles. I am having further testing on the 27th at the University of Pittsburgh Medical Center. I will let you know what I find out.

Thanks Cookingmom. I'm anxious to hear what you find out.

Cheri, How are you?

Well, I saw the neurologist who is a neuromuscular specialist. He did another EMG workup and also cervical, thoracic and lumbar MRI's. He said I have some form of myopathy - which is why my muscles are weak. He said I also have a spinal cord compression which is causing the extra heaviness in my right leg. I am having a muscle biopsy next week to determine the type of myopathy. In the meantime, he and the rheumatologist decided that I needed to stop the plaquenil because of the muscle weakness. I have increased my prednisone and will be increasing my methotrexate to try to compensate for the loss of plaquenil.

I am anxious to find out exactly what type of myopathy and figure out what we can do.

I hope you are doing okay. Bern :wave:

Bern,

I just checked this board yesterday to see if you gave an update!

I'm so sorry to hear about the myopathy. I have to admit I don't know anything about it. I'll have to research that one. Does the doctor think the problem might be from the Plaquenil since he told you to stop taking it or is he just being safe? If it is from the Plaquenil, did he say if the symptoms would go away after you stop?

I hope the increase in prednisone helps you. Every time I take a round of prednisone, my weakness goes away. I guess I just thought the weakness was a part of the RA. Maybe not.

Please keep me posted. I'll keep you in my prayers too.

Cheri.

Hi again Cheri,
They have postponed my muscle biopsy temporarily because they discovered a mass behind my thyroid. I am having a CT scan and some blood work tomorrow to investigate further. They are thinking that if it has to be removed they will do the biopsy at the same time - this makes it easier on me since I have to go off of my bloodthinners for 5 days anytime I have any type of surgical procedure. I am a little anxious about this but just praying that it will be okay. I'll let you know how it goes. How are you? Bern