Lupus Message Boards
Register Latest Topics
 
 
 


Reply
  Author   Comment  
His Angel

Junior Member
Registered:
Posts: 5
 #1 
I recently started on Allopurinol for gout.  My doctor held off prescribing this drug until I had a chance to get in to see a rheumatologist, as I had to wait like 6 months for an appointment.  But since I am on this drug I am having problems.  I too have kidney problems, and now after being on this drug for 3+ months, I keep swelling up so bad from head to toes.  I was unable to even get out of my house this past week to try to see a doctor.  I can barely walk, let alone drive my car.  I am alone and had too much pain in my feet (not from gout, but from fibro/lupus/arthritis).  I have very bad damage to my joints from gout.  The gout developed after the kidney function problems.  So this swelling is not good, since I have high blood pressure and blood issues (first it was low platelets, now lupus anticoagulant-whatever that is).  So the rheumy wants me to start Plaquinil.  I got my script filled, but am afraid to take it since I have such terrible problems with meds - allergies, bad, bad reactions.  Please if anyone has any thoughts, please share.  I am suffering for years with autoimmune issues, am alone, and don't know what to do as I am very sick right now.  I can barely walk around my house.  Should I take the Plaquinil or not?  It is sitting here and I am so afraid to put this into my system. But my legs, feet, hands, face are terribly swollen. 
Robinj

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 3,392
 #2 
I don't believe Plaquenil will solve your swelling problem. Definitely sounds more related to kidney issues. Plaquenil is usually the first line of defense for AI diseases, however, it takes 4-5 months to build in the system before you see any effects. Do you have a lupus/AI dx from a rheumatologist?
__________________
When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
His Angel

Junior Member
Registered:
Posts: 5
 #3 
Yes, AI/not named.  AI/Sjogrens. Fibromyalgia.  HPB, Kidneys not functioning properly - maybe the reason for the bad swelling or maybe also from the allopurinol for gout.  AI/ITP.  AI/Lupus anticoagulant (another AI blood disorder).  ANA very elevated.  Pain from head to toe, 24/7.  I am barely walking at all now.

The thing is, this swelling has been a severe issue since on the allopurinol.  But the gout attacks were unbearable.  Also use colchicine for gout.

I was supposed to start the Plaquenil in March, but since I live alone I am afraid of a reaction.  I don't understand what is happening to me.  I have terrible, painful sores inside my mouth and throat again.  My hair is falling out so badly, I now have bald spots.  I've been to so many rheumy's and no one will DX me with anything, other than to confirm the AI issues, and my symptoms as they are noticeable, like the lesions I have on my scalp again.  I saw a dermatologist for that a couple years ago and she told me to go see a rheumatologist because the lesions are Lupus.  huh?  So I went to rheumy after rheumy because some left the practice, moved, etc.  I finally found one & she says to start this Plaquinil, and the allopurinol.  I think the allopurinol is causing this swelling.  And because of that I am afraid to start the Plaquinil.  I am just so distraught, so alone, and in so much pain.  I know Plaquinil won't solve my swelling problems, but I wanted to know if this drug has been safe for others, anything I should look out for?  I read all the material about the drug but I was looking for what other's experience is with this drug.  After all, the material written is put out by the drug company.  I wanted to know what others experience.

Thank you for answering me.  I really am so stressed out right now, and alone.

Angel
Cakelady

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 4,713
 #4 
None of us are doctors. We re all dealing with a lot of the same issues you are but going from doctor to doctor is not good. Before you go to a doctor due your research on the doctor. Does he/she have lupus patients how do they treat their patients etc. also it can take years to get a dx
__________________
The bond that links our true family is not one of blood, but one of respect and joy in each other's life
Robinj

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 3,392
 #5 
Initially, the only "reaction" you would have from Plaquenil would be GI issues, so it needs to be taken with food. A baseline eye exam is a must due to the rare possibility of retina damage. You should have an annual eye exam to keep an "eye" on that.
Your lesions should be biopsied by a dermatologist. There are changes  in the dermis that show lupus related issues.
Either way, I would be more concerned about the swelling and contact your Rheumatologist about that.

__________________
When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
His Angel

Junior Member
Registered:
Posts: 5
 #6 
Yes, the rheumy I see treats Lupus.  I understand that there are not doctors on this board.  I guess I am asking because a neighbor of mine (retired nurse) told me to not start this Plaquenil until I let someone know I started so they can call and check on me.  I have no one to call.  She has me fearing anaphylactic shock reaction.  I am sorry.  I am so alone and just wanted to know what others might have experienced on this drug.  

The first time I went to a Rheumatologist after moving to IL, she made me wait 5 hours to see her.  Once my turn came up, she announced that she had a medical convention to go to, had to leave in 10 minutes, and what is my problem.  I had had my doctor fax over my records and she never bothered to read them.  I never went back. I went home and cried for DAYS.  I had a $50 co-pay plus what my insurance paid and she did nothing for me.  NOTHING.  Not even ordered a test.  Why?  She had someplace to be.

The next Rheumatologist I went to basically confirmed what my regular doctor said, but added lupus to the DX after more blood tests, xrays, and even an MRI on my painful feet.  I had to stop seeing her because she was an hour away and I was driving an old un-trustworthy car back and forth.  Also, she conned me about a lab she sent me to for blood work up.  It turned out is was NOT a regular lab, but one of those immediate care places.  I had to pay $200 just for using the facility!  The tests themselves were in the thousands.  So I moved on.  I resent it when someone lies to me as I live on a small income.

The next Rheumatologist was closer, was GREAT, but she left her practice because of Obamacare, like many doctors are in this area.

So I went back to the first place since they are well-equipped to treat Lupus.  The original doctor was fired by the firm, so I got to see a new doctor.  She seems great, too.  I only had my first appointment in Feb., then a follow up in March, then not going back until August.  Just returns for blood draws to check the uric acid levels, and the Lupus anticoagulant level, for which I was due to get done this past week but was to sick to leave my house.  I still don't know what that anticoagulant thing is, which is new for me.  I asked the doctor, she said oh don't worry, its just like your ITP problem, just a blood disease.

I'm sorry, I don't mean to come here to complain but was looking for a little support, input, etc.  I literally have NO ONE, live completely ALONE, and right now am a stressed out wreck hoping someone could offer SOMETHING to just allay some of these fears.  That's all. 
Robinj

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 3,392
 #7 
That is good that you are established with a Rheumatologist! Please call them Monday and let them know about the swelling. I looked up the gout medication and saw nothing about swelling/fluid retention as a side effect. And if you ask a question and don't understand the answer, speak up!!! :)
__________________
When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
His Angel

Junior Member
Registered:
Posts: 5
 #8 
Thank you.
Robinj

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 3,392
 #9 
Hang in there!
__________________
When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
hanna24

Junior Member
Registered:
Posts: 19
 #10 
Yes, I agree with Robin to call on Monday.  Being in that much pain that you can barely walk and with swelling, in your shoes I would insist on being seen very quickly.  I also have kidney issues and swelling is a red flag.  I am not a doctor but that is what I would do.  I'd be sure when you call that they know you are barely functioning.  I hope you get help and feel better soon.
taffylinden

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 934
 #11 

Sorry you're having such a hard time. I know it's hard to calm down when you're having all these issues, but please pause to consider...

Instead of worrying yourself sick that the Allopurinol is causing the swelling, find out. You can do that for free by asking the pharmacist where you get your Rx's filled. They're even better informed about meds and side effects than many docs are. 

A pharmacist could also allay your fears about Plaquenil, which is a generally a pretty safe medication. I mean, ANY medication could cause anaphylactic shock, so assuming the pharmacist says it should be fine, weigh the risks of NOT taking Plaquenil. 

Lab tests are pricey no matter where they're done. If the facility where your former doc worked didn't have the equipment to run the labs, they'd send them out...and yes, an urgent care facility might have the equipment to run the tests. Believe me, $200 is not bad for lab tests these days! Your doc may have chosen that facility BECAUSE it WAS cheaper. 

My lupus was originally suspected by a dermatologist who suspected my lesions might be lupus. She ran labs and referred me to a rheumatologist. Maybe there was a communication error with yours: she may have meant the lesions COULD be lupus. She was right to send you to a rheumatologist. 

I hear you about the distance to good docs! I used to live 100+ miles from the closest rheumatologist. If your car is iffy, can you take public transportation? When you factor in gas and wear and tear, it's probably as cheap as driving. Don't let distance keep you from good care.

And finally, living alone....me, too. A lot of us here do. I am blessed with good neighbors I can call on for help. Other than that, I don't worry about it. Stick to the probabilities: they're more likely to come true, and you won't worry needlessly. 

Previous Topic | Next Topic
Print
Reply

Quick Navigation: