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doublecamp52
10-06-2012, 09:43 PM
I am pretty new here. I do not post much. However I have a problem. I have been diagnosed with SLE and RA. I have many other health problems. Type I Diabetic, thyroid removed, back surgery. My doctor put me on plaquenil 2 x a day. At first it seemed to work. However the last month I have been having what seems to be muscle spasms in my upper arms and they are really bad. My arms feel like they weigh 100 lbs each. I am also having really bad pain in my hands. My digestion is really bad also. My question is have any of you experienced this? I live in WV and my doctor is very old-fashioned and out of date. He says plaquenil is all that I can take. I am thinking of traveling to the WVU campus in search of a new doctor. Thanks again for listening.

tgal
10-06-2012, 10:03 PM
I am pretty new here. I do not post much. However I have a problem. I have been diagnosed with SLE and RA. I have many other health problems. Type I Diabetic, thyroid removed, back surgery. My doctor put me on plaquenil 2 x a day. At first it seemed to work. However the last month I have been having what seems to be muscle spasms in my upper arms and they are really bad. My arms feel like they weigh 100 lbs each. I am also having really bad pain in my hands. My digestion is really bad also. My question is have any of you experienced this? I live in WV and my doctor is very old-fashioned and out of date. He says plaquenil is all that I can take. I am thinking of traveling to the WVU campus in search of a new doctor. Thanks again for listening.

Before I answer I need a bit more info. How long have you been on the plaq? I can already tell you that I think you might want to look into finding a new doctor that is a bit more aggressive when it comes to treating Lupus however that decision is up to you but I would like to know how long you have been taking the plaquenil before I say much more

steve.b
10-07-2012, 05:59 AM
everyone has the right to a second opinion.

sometimes the older docs are a lot more caring, if they are prepared to update themselves.......
they are the best.

it is your body, find someone to help you look after it.

doublecamp52
10-07-2012, 10:24 AM
Steve I have been on plaquenil for 2 years plus. I can tell that my condition is not improving. The rash is really bad on my arms face and hands. Not really rash but redness. I have not did well since I had my thyroid removed. The pain this weekend has been horrendous. I think it is the worst I have had since back surgery. I appreciate any advice anyone can give. I just did not know if the lupus affected people this way. Thanks Linda

magistramarla
10-07-2012, 07:50 PM
Hi Linda,
I agree with Mari and Steve.
A second opinion might be a good thing, especially since you have so much going on.
If you can go to a teaching hospital, that's even better. They often have the docs who know the most up-to-date information.
Hugs,
Marla

Phoenix2369
10-08-2012, 05:11 AM
I dunno. But if my doctor ever looked at me and told me I could only take a certain medication that I didn't particarly like after he diagnosed me with something so huge I'd shop around.

I've been on plaquinel for over a year and have not had that problem with it. Obviously everyone is different. If you thing it may be the medicine definitely bring it up to your doctor.

The first rheumatologist I saw told me he couldn't help me because althought my Ana was positive my white blood count was high and my ds antibody was negative. So I saw another. Who told me I definitely had some kind AI. He got me started in the right direction, the plaquinel the anti inflammitories, occasion steroids. So when I wanted something more aggressive and actual answers. I saw another.

There is no shame in doctor shopping if you feel you need more. It's your life and your body.


Good luck. Let us know how the trip to the university goes.

tgal
10-08-2012, 09:02 AM
2 years and only plaquenil that isn't helping? I say fire him and find someone that understand this disease! Don't let it keep damaging you because this doctor doesn't get it!

tgal
10-08-2012, 09:03 AM
I dunno. But if my doctor ever looked at me and told me I could only take a certain medication that I didn't particarly like after he diagnosed me with something so huge I'd shop around.

I've been on plaquinel for over a year and have not had that problem with it. Obviously everyone is different. If you thing it may be the medicine definitely bring it up to your doctor.

The first rheumatologist I saw told me he couldn't help me because althought my Ana was positive my white blood count was high and my ds antibody was negative. So I saw another. Who told me I definitely had some kind AI. He got me started in the right direction, the plaquinel the anti inflammitories, occasion steroids. So when I wanted something more aggressive and actual answers. I saw another.

There is no shame in doctor shopping if you feel you need more. It's your life and your body.


Good luck. Let us know how the trip to the university goes.

Thanks for sharing that story! We run across that too often. Doctors that want to put too much on the bloodwork an not enough on the whole picture! Glad you found a better doc!

doublecamp52
10-18-2012, 10:17 AM
Thanks everyone for your replies. I got a referral to the University except it is not until January. I went to my primary doctor to get this referal. He ran some bloodwork and called me right back to come back in. He said the lupus was full blown. Here is my lab results. AutoAntiboties refernce range was 0-99 mine was 331. Sed Rate reference range 0-20 mine is 25. Autoimmune Disease Panel Reference range >120 positive mine is 351. The primary doctor said he would have to take care of it until I can get to the University. I am a type 1 diabetic and cannot take the steroids. He suggested a pain patch called Butrans. I just don't know how I feel about that. I take Norco for pain I am prescribed 2 a day. It is not touching this pain. It is also hitting my intestines very hard right now. I have a lot of decisions to make. Just don't know what to do. Thanbk you all so much for listening. I deeply appreciate it.

jmail
10-18-2012, 02:27 PM
January is not soon enough. Can the pcp call the university and get you in sooner, like maybe an "emergency" basis? Are you near Charleston, WV?

tgal
10-18-2012, 03:07 PM
Call the Dr. at the University and ask to get on his cancellation list. It works most of the time. When someone cancels they will call to see if you want their spot. It usually gets you in much sooner

doublecamp52
10-18-2012, 08:34 PM
Yes Jmail I am about 2 hours from Charleston. I have had another bad complication today my blood sugar is almost 400 and has been staying that way all day. I am on an insulin pump. I talked to a nurse advocate thru our insurance and she said that with my lupus this high the inflamation is raising my blood sugar. I will go back to PCP tomorrow and I kind of figure he will put me in the hospital this time. I just know I have never felt this bad. Even after a horrendous back surgery I recovered. Thanks everyone for listening.

jmail
10-19-2012, 02:14 PM
Yeah, def get in to see him in light of a 400. That's doin' you more harm than the lupus. The lupus might even be hitting your endocrine system.

magistramarla
10-19-2012, 03:49 PM
Hugs to you.
I hope that you get some care.
Please let us know what happens.
Hugs,
Marla

doublecamp52
10-23-2012, 09:18 PM
Thanks everyone. I made it thru the weekend. Still no luck with the rhematologist. They are booking in January. My intestines were so flared that my family doctor took a chance and gave me a shot even though it is not good for my diabetes. It has helped a lot. I really think that it kept me out of the hospital. He said that he would give them to me until I can get to the University. Thank you all so much for your concern. It is so hard this disease especially to get someone to understand. I appreciate you all very much. Linda

doublecamp52
11-23-2012, 09:42 PM
Hi There everyone. Hope you all made it well with Thanksgiving. My update is I am still waiting . My appointment is Jan 21. My condition is not improving. I really hope I can get through the Holidays. I have called different rhematologist and they are all booking in January. Will keep everyone updated.

magistramarla
11-23-2012, 09:48 PM
Doublecamp,
Hang in there. It's good to hear from you.
Hugs,
Marla

Numpty
11-25-2012, 02:31 AM
So sorry to hear you're having such a rubbish time, especially at Thanksgiving and with Christmas coming up too! We're all thinking of you and will be here with virtual hugs and support when you're in your darkest pain moments or even if you just need a little pick me up! Hang in there, January isn't too far away now! ~hugs~ xx

tgal
11-25-2012, 08:30 AM
Have you asked to get on the cancellation list? I usually get in within a week when I do this.

jmail
11-26-2012, 04:15 PM
What Mari said. ... and how's your blood sugar count doing?...

Mica
11-26-2012, 08:28 PM
You know even if your first doctor was right i'd say get that second opinion. Obviously your not happy with that doctor, i'm going through the same thing with mine. I feel it's harder on you when you feel your doctor is not listening to you. When I get the money I will be going to a different doctor.
And you know what now that I think about it my doctor gets all pissy if I ask to see my lab results, all she will tell me is if it's good or bad. OOOooooohhh this is just making me madder now that im thinking about it so I COMPLETELY understand your frustration.
Good luck I hope this new place helps you.

doublecamp52
11-28-2012, 06:18 PM
Hey everyone How can I thank you all for your kind replies and support? You will never know how much it means to me. I am hanging in there waiting for January I am on the cancellation list but with the holidays I think that this doctor may be out quite a bit. There are 2 doctors that are specialist at the University I feel like I need to wait on this lady though. She specializes in SLE . And Mica I know exactly how you feel the doctor I had never wanted me to see my blood results and never wanted to discuss anything beyond Plaquenil. If it wasn't for my neurologist I probably wouldn't be walking around right now. My blood sugar is till kind of out of whack but pain also causes that to happen. Hope everyone is doing well today. Thanks again.

Bakedtater08
11-29-2012, 01:04 AM
As for the tremors-it could be many many things, my rheumy actually told me (mine were noticeable to others) that plaque nil actually helps suppress them (not sure how accurate that is but I thought I'd share)

Agree on the waiting list/cancellation list. Another option that's worked for me in the past is getting into another office at a university or hospital-sometimes having affiliation doctors that refer you can pull more strings.

Best of luck, hope you get answers sooner than later!

doublecamp52
12-30-2012, 11:21 PM
Hey there everyone. Just thought I would check in. Made it through the Holidays. This was one year I can say it was tough. I am not improving at all . My appointment is Jan 21. So please whisper a prayer for me. I will keep you all updated. Hope everyone is doing ok.

tgal
12-31-2012, 05:08 AM
Keeping my fingers crossed that all goes well at the doctor. Let us know how things go and get to feeling better

doublecamp52
02-05-2013, 09:25 PM
Hello everyone. Well I made it to the new doctor. I had to go through all new bloodwork and x-rays. She confirmed the lupus and RA. For the next 12 weeks she is only going to do plaquenil. But she did increase my antitripline 25 mg at bedtime. She said we would work on new meds a little at a time. She really thinks that the RA is worse than the lupus right now she told me they both were very active? So I will follow directions and hope for the best. I do wish she would have started me on some other meds but hopefully time will tell. Hope everyone is doing well. Thank you all so much for your concern.

chikititalinda
02-07-2013, 12:20 PM
oh Doublecamp you've been through the ringer these past few months. Hopefully you'll get all your conditions under control soon. {{hugs}}

jmail
02-07-2013, 08:43 PM
the plaquenil will help both the lupus and the RA. There's a thread on here somewhere about the dosing being based upon a person's height, but I can't find it... The main side-effect for me was initial stomach upset, but that stabilized after a few weeks. I will still get indigestion at times from it, but it's probably more from what I eat when I take it. I take mine with meals. I also developed some strange "dreams" that were very vivid after a few weeks on it, but I've elminated those by taking my 2nd dose with lunch instead of supper. The *big* thing to remember is that it is a slow acting med, in that it builds up in your body. The longer you take it, the better it works. A person should get a "baseline" eye exam from an opthamologist for any potential future eye issues. The incidence of issues are few, and it takes years they say for them to show up. Be sure and communicate with the doctors' offices if you do happen to have issues. I started feeling relief within 3 weeks (wishful thinking??), but it gets better the longer you take it. I'm still having to "supplement" with 10 prednisone, so we're going to try other meds, in addition to the plaquenil, and try to eliminate the prenisone, which I've been on for over 3 years now...

Best of luck with it doublecamp52. Here's hoping for some relief. The RA can do some serious damage to your joints in its early stages, and is also known for attacking the heart and other "soft" tissue in your body, so it is a good idea to get it under control asap.

doublecamp52
02-09-2013, 06:44 PM
Thanks everyone again. I have already been on plaquenil for 2 years. The plaquenil will not work and the doctor knows that. She called me and said it is insurance protocol. My health insurance is not wanting to pay for biologics until they have new bloodwork at 12 weeks of the max dose of plaquenil. So the doctor said we have to play there game. The RA is showing severe damage to my left foot and bot hands. I know that I am here only by the Grace of God. I will keep everyone posted. Thanks for all your support.

jmail
02-10-2013, 02:55 PM
You've got insurance like mine! I'm having to do the same dance right now. At least the plaq helps me somewhat though...

ItsLupus2007
02-10-2013, 04:23 PM
The Plaq dose is weight based. Usually 400mg per day is used for treatment. If you are very petite or underweight they may reduce the dosage.