OT Anyone on Plaquenil

So sorry you have to deal with this Jerry...

A word about the annoying need for blood draws. There is a way to minimize the number of draws needed. Just have multiple tests done at one session and get copies of the results to all the doctors that are wanting whatever test results they are following.
Takes just a bit of coordination as to timing of the tests and making sure reports go to all doctors involved.
If doc A needs so and so test done at 2 month intervals and doc B needs so and so test done at 3 month intervals...he won't care if it is done at 2 month intervals or he might be okay with 4 month intervals.

I don't have much direct experience with RA that I know of. My ANA has been elevated in the past but it is sporadic and not horribly elevated so we haven't gone down the RA road yet. My main issues are plain jane osteoarthritis.

I will make this comment though....it's much better to prevent damage in the first place than it is to try to fix damage after it occurs.
Joint damage from any cause is very annoying but the RA doesn't limit itself to just destroying joints and that makes it something that I would be wanting to make sure I prevented whatever I could prevent whenever I could prevent it.
It's a systemic destroyer and that puts it in another class of bad guys.

Pugsy wrote:A word about the annoying need for blood draws. There is a way to minimize the number of draws needed. Just have multiple tests done at one session and get copies of the results to all the doctors that are wanting whatever test results they are following.
Takes just a bit of coordination as to timing of the tests and making sure reports go to all doctors involved.
If doc A needs so and so test done at 2 month intervals and doc B needs so and so test done at 3 month intervals...he won't care if it is done at 2 month intervals or he might be okay with 4 month intervals.

I don't have RA, so I agree that I should stay out of that discussion.

But, I agree with Pugsy as to the importance of coordinating blood draws.

I do it not because I am having blood drawn that many times but because of the torture they put me through to get that blood.

Finding veins in me is harder than "finding Waldo".
They often have to "stick" me 5 to 6 times before they find a vein.
Or even worse, they stick me once & then go poking around looking for a vein, all while the needle is still in me.

When they ask me "which arm", I reply "your choice, you will have just as hard a time finding a vein in either arm".

Once, I had 3 different people give up.
The 4th ended up getting blood from the back of my hand.

When I have blood drawn, I have blue spots appear & grow to new heights.
When people ask me what happened, I tell them my wife beats me up.

So, when a Doctor tells me he needs blood work, I tell him Dr. X did that Y months ago & wouldn't that be sufficient?

Or even better, when I have blood drawn for any Doctor, I make them add the tests other Doctors will need in the near future. No Doctor will turn down the opportunity to do & bill for more blood work than he really needed.

Then, the next time around I tell that Doctor, Dr. Z will need some blood work in x months. I will have him add your tests to that blood draw and send you the results.

I was reading back over this thread. You said you were not in a lot of pain right now -that's because of the steroids. Prednisone is one of the most dangerous drugs a person can take. The long term side effects are horrendous. These days a person is weaned off of it as soon as possible. You may then have a lot of pain.

The thing is that you NEED to get on DMARDS (disease modifying drugs) asap. These drugs slow down the progression of the disease and help prevent deformities. RA needs to be treated aggressively asap. I know the blood work is a real nuisance. I have blood work done every month.

There really are more effective drugs available now than when I was first diagnosed. You have to go through few others to get to get to these newer ones but at least they are available now. I wouldn't have had near the damage I have, had they been available sooner.

Anyway, hang in there!

Thanks for everyone's information. My experience with blood draws sounds a lot like Stu's. As I have gotten older my veins have gotten harder to find. I just can not see me going through this that often at this time. I had no problems until August. I have been off Prednisone for at least two months with NO pain at this time. I am going to talk to my PCP and get a second opinion. Also see if the pain comes back. I really do not have any trust in the Rheumatologist. She is young as is her practice, she does not explain anything. She did not mention any of the tests, blood draws, etc. I did not find out about them until I went to check out and the orders for the tests were attached to the prescription for the drug. The fact that this drug requires this much testing tells me it is more dangerous that they are telling.

Jerry

You should get a second opinion if you do not feel comfortable with this one. If you have RA, the relationship with your Rheumatologist is going to be a long one so you need someone you trust and feel comfortable with.

I have RA and a few other auto immune things; also, fibromyalgia. I do take Plaquenil and a few other appropriate meds. Pain is managed with an opiate. I have one replaced knee and fingers that don't all point the same way. I started a grain free eating life style in July in desperation because my feet and legs were not always where I thought they were. The discomfort was increasing.

Since then my walker is still in the trunk of my car, 19 pounds have gone away, I can start to really exercise-I have a new bike in the garage; I no longer need blood sugar med; the feeling in my feet is returning; the dose of pain med is going down. Best of all, Thanksgiving is at my house for the 1st time in 5 yrs.

I do see a PCP- a DO with an open mind- and a rheumatologist. I get regular blood tests coordinated for sharing with the 2 of them. I get regular eye exams...had cataract surgery unrelated to the rest of the stuff, which improved my vision. I use my Bi PAP nightly which has put me back in bed with my husband and The Tibetan Wonder ( I had slept for 2 years in a lounge chair). I guess I do what works and watch and pray for what will help what is not working.

Find a doc you like and trust and Go For It.

Lynda

6PtStar, I just started Plaquenil this week. I had my follow up appointment with the rheumy after testing and x-rays a couple of weeks ago but I was afraid to take the Plaquenil. I've had problems with my feet for years - plantars faciistis and tendonitis - which did not respond well to steroid shots. About a year ago I also started to get excruciating pain in my knees and a great deal of swelling. It was so bad I had trouble sleeping on my side even with a pillow between my knees. I explored a lot of natural stuff because I hate taking drugs and I was able to get the pain to back off enough so I could sleep on my side again. But really my quality of life has deteriorated and there have been days where I'm so stiff I can barely walk. When I had my sinus surgery a month or so ago I was on antibiotics for a couple of weeks and painkillers for a couple of days and I had blessed relief for a while. My doctor said the x-rays look like osteoarthritis but I did have the rheumatoid factor and I was presenting like RA. My thing is I have gone as far as I can on my own and even though I don't like taking meds I want my life back again. I have tried various diets, various supplements, various exercise regimes, spent thousands of $ on acupuncture - some things helped a little, some things did nothing and some things aggravated my symptoms. Last Saturday, I bit the bullet and started the Plaquenil. So far the only side effects I have noticed are I had a mild headache for a couple of days and my left eyelid twitched for a couple of days - both of those things are gone now and may not even be related to the Plaquenil. One other thing I have noticed is I am waking up in the middle of the night again whether or not I am having any apneas or not. Not sure what that's about so I am just monitoring it. Today, I am upping the dosage to twice a day. I have an appointment with the eye dr. in two weeks and I am quite concerned about those side effects but so far so good. My thoughts are this: it is supposed to take a while for this drug to work. If I don't experience any horrible side effects then I am going to continue until my next appointment with the RA dr. in January. The idea is to go into remission, wean off the drug and continue with the natural stuff. I may be overly optimistic here but nothing ventured, nothing gained, and, who knows, maybe I'll feel better soon.

tuzacat wrote:6PtStar, I just started Plaquenil this week. I had my follow up appointment with the rheumy after testing and x-rays a couple of weeks ago but I was afraid to take the Plaquenil. I've had problems with my feet for years - plantars faciistis and tendonitis - which did not respond well to steroid shots. About a year ago I also started to get excruciating pain in my knees and a great deal of swelling. It was so bad I had trouble sleeping on my side even with a pillow between my knees. I explored a lot of natural stuff because I hate taking drugs and I was able to get the pain to back off enough so I could sleep on my side again. But really my quality of life has deteriorated and there have been days where I'm so stiff I can barely walk. When I had my sinus surgery a month or so ago I was on antibiotics for a couple of weeks and painkillers for a couple of days and I had blessed relief for a while. My doctor said the x-rays look like osteoarthritis but I did have the rheumatoid factor and I was presenting like RA. My thing is I have gone as far as I can on my own and even though I don't like taking meds I want my life back again. I have tried various diets, various supplements, various exercise regimes, spent thousands of $ on acupuncture - some things helped a little, some things did nothing and some things aggravated my symptoms. Last Saturday, I bit the bullet and started the Plaquenil. So far the only side effects I have noticed are I had a mild headache for a couple of days and my left eyelid twitched for a couple of days - both of those things are gone now and may not even be related to the Plaquenil. One other thing I have noticed is I am waking up in the middle of the night again whether or not I am having any apneas or not. Not sure what that's about so I am just monitoring it. Today, I am upping the dosage to twice a day. I have an appointment with the eye dr. in two weeks and I am quite concerned about those side effects but so far so good. My thoughts are this: it is supposed to take a while for this drug to work. If I don't experience any horrible side effects then I am going to continue until my next appointment with the RA dr. in January. The idea is to go into remission, wean off the drug and continue with the natural stuff. I may be overly optimistic here but nothing ventured, nothing gained, and, who knows, maybe I'll feel better soon.

you might have your doctor check for lyme disease

When you find the right drug(s) for you and they begin to work, you will fee much better.

I remember when I was first diagnosed. The pain was terrible. Then we got the right "drug cocktail" for me and I have done very well. I did go into remission for a few years but was advised to keep taking the drug and I did. I have always kept up my exercises - stretching, strengthening and cardio. I walk as much as I can.

I have had a few flares in that last few years and had to up the pain meds for awhile. I have been doing pretty well for a couple of years now and have gone back to my small dose of pain meds, along with the disease modifying drugs and a non-steroidal anti-inflammatory. Touch wood!!

I DO NOT LIKE taking the meds but they, and the exercise, have kept me going pretty well for about 22 years so----.

All the best!