Stopping Plaquenil

[Lindar]

Is there any of you that have stopped taking Plaquenil? If so, what types of symptoms did you have, if any?
I started taking it back in 2004 and was just taken off a week ago. My dreams have gotten a lot worse, stomach has hurt. One of my SD Rheumy's felt that it was no longer doing anything for me.
Thanks.
Linda

[deannagraham]

I took Plaquenil for 3 months, and it was apparently slowing the progression of the sd, because when I went off it, my sd kicked into high gear. Some doctors are sceptical about how beneficial Plaqunil is; it was great for me and one of the few meds (low dose prednisone also) I could take without messing up the study protocol for the treatment I was about to have. So, yes, going of Plaquenil had significant negative effects on me.

[isobelle44]

Did you go back on it or no?

[terri9967]

I was on it for almost 2 years. I had to stop taking it as my eyes were getting really bad and eye pressure went through the roof. I soooooo miss it!!!!!! I didnt have any problems like you mentioned. But my pain levels sky rocketed and my SD has gone into overdrive now.

[sammie]

I was on it for my Lupus for 10 years. I stopped it right before I found out I have sclero. They raised up my prednisone dosage when I stopped the plaquenil, but I still had more joint and muscle aches than before and my stomach got bad,
Sammie

[28maggie]

Hi, I'm Maggie. My Rheummy is about to put me on Plaquenil, after I see my eye doc on the 17th of this month, to see if it's safe for me. I have Glaucoma, and the Rheummy just wants to be sure...
So far, that's all she talking to me about...except to be very observent of my lungs. I currently have Pulmonary Hypertension, which she's concerned about.
My Pulmo doc stopped looking any further, once he found the Pulmonary Hypertension, Adult onset Asthma, Sleep Apnea, and severe Allergies.
The CRESTS diagnosis has finally come about, by the new Rheummy, and I'm actually relieved to have a name for the symptoms of the past, almost 2 years....beginning with chronic, Iron Deficiency Anemia.
Once the Pulmo gave his diagnoses (all of them), I cancelled my planned trip to the Mayo in Jax.
Now I wish I'd had gone, last August, instead of being lulled into the false sense of security...that was only temporary, anyway.
I watched, as my symptoms continued to change, and get worse. And, regardless of the doctors, I knew deep inside what I had. I just didn't know which form it was, until now.
So, my question is this: I have CRESTS now. Is this a milder form of S? Can it increase into a more intense form of S, or will it always be CRESTS?
And, having CRESTS, are their certain problems/symptoms/progressions that will be a 'given' that I will definitely end up with?
Or, is it just a waiting game...with every person having different progressive stages, with different parts of the disease?
Probably dumb questions, but I don't really know what to expect, except what I've been reading..... and, it's the fact that I've been reading and going on-line, that's driving my husband crazy. He feels that I am placing ideas in my head, that may not actually ever happen...never mind that I am having symptoms that actually lead me to do the research on the computer.... Thanks for any answers/help that you can give to me. Maggie

[Cubby]

MAGGIE: CREST is a form of LIMITED Systemic Scleroderma. This is not as serious as DIFFUSE systemic Scleroderma which I have. The initials stand for the following:

C- Calcinosis--deposits of calcium crystals under the skin.......

R- Raynaud's phenomenon

E- Esophagael problems which causes heartburn and scarring......

S - Sclerodactyly -stiffness and tightening of the skin of the fingers and face, but not usually arms, chest, abdomen, back, thighs.....

T- Telangiestasia - ........Red flat marks on the palms of hands, face and tongue

Progression of Limited is slow but....the severe form of limited scleroderma can cause organ damage....

I highly recommend you get the MEDIFOCUS Guide. It is about $25.00 and available at www.medifocus.com or at 1-800-965-3002. This is the best $25.00 you will ever spend!!!!

Regarding the anemia, I am sure your doc will send you to a GI for an endoscopy and colonoscopy, as the anemia, could be a sign of bleeding from the esophagus and/or stomach. That is what I had. It's all healed and gone now as I get closer and closer to remission.

You are right to be looking up all you can and no, you are not putting ideas into your head, just educating yourself. I know what your husband means, my hubby was worried about me looking all that up also. However, I was able to think: OK I have that......No, I don't feel like that.....etc.

So many of us are in remission, or moving toward it. So, educate yourself, get the best set of doctors and GET BETTER!!!!

[Lindar]

Well, I've been off Plaqeunil for just over 2 weeks now and so far I feel pretty good. The bad weird dreams have tapered off and I don't feel more pain. Although, that also may be due to the change in pain meds. They now have me taking 15mg morphine every 12hrs. I've also been able to use my hands more and make fists, my right hand is still tight though around the nuckles.
I'm not used to this and can't help but wonder when it's all going to crash in on me. Until then, I am going to enjoy it.....

[ndpblake]

It is so confusing. I have CREST, but I definitely have organ involvement. In fact that is the worst of my problems. So what is my disease called? I don't have an AP doctor, and have given up on regular rheumatologists, and cannot travel by air to some exotic place like Boston. So the original diagnosis was CREST 19 years ago at the Cleveland Clinic, in Naples, Florida, who have left there, and my rheumatologist there, who diagnosed me, moved to the Mayo Clinic up North, but am I diffuse, limited, or whatever? My veins, arteries, heart, circulation, lungs (PAH), esophagus (Barrett's Esophagus), calcinocis, neuropathy in the legs, ampul carcinoma of the small bowel, lack of motility of the intestines are all my problems. You all must know the diagnosis because most of you have been there. I have no one of my 8 doctors to tell me. I'd love to know what to call it. Stopped Plaquenil after a few weeks because I went to hospital with anemia, etc. and they said I should stop it.

[sherion]

ndpblake,
I have internal problems also . Not as many as you but mostly GI troubles and some heart and blood pressure issues. My rheumy says I have limited.

Sherion

[christine10]

Hi Girls;
Anemia is a problem with most immune diseases as the micoplasma use it to survive.As to having an AP doctor...it is not absolutely necessary and I did without one for many years.My family doctor wrote the prescriptions I asked for and I did the studying,filling him in with what I learned.Today a have the second best AP doc in Canada and we have a good laugh as she says I don't need her except for writing the prescriptions.She admits I know more about this disease than she does as her specialty is Chronic Fatigue and Fibro

[Cubby]

NDPBLAKE: I don't go to an AP doctor. I hounded my Rheumatologist so much that he finally broke down and gave it to me, 3 months after I started the Photopheresis. Once the AP kicked in, within a month, I noticed minor improvement, including my finger ulcers disappearing. My doctor was in shock as he did not believe it worked either. He does now, and he is Chief of Medicine at the hospital where I get my treatments.

If you are interested in an AP doctor, go to ROADBACK.org and they will give you a list of doctors in your area.

Regarding CREST--the E in CREST is the esophageal involvement. So CREST does involve internal organs, even tho CREST is considered LIMITED SCLERODERMA.

[ndpblake]

Thank you, Cubby. Your explanation helps. Yes, I have a list of rheumy doctors in my area from RBF, but they are not AP doctors, and I went to them in the past. I also went to Sarasota, FL to one there.

So, the problem is with me as I am not eager to go a long ways. I am not young, 78, and my husband will be 80 next week! All of the rheumatologists around here are Prednisone, Methotrexate, Plaquenil doctors. (I have retinal problems, past laser treatments of the retina, so why am I prescribed Plaquenil from one of my local Rheumatologists?)

However, I am holding my own so far, taking care of things as they appear. I am taking a very expensive drug, Letairis, for PAH (Pulmonary Arterial Hypertension) with a Pulmonologist who understands Scleroderma. He has patients on this drug who also have Scleroderma, and I feel confident that he will help me; at least more than the local Rheumatologists.

I took Minocycline for 2 years. My Primary Care Doctor prescribed it for me, but with many reservations. She was uneasy doing this, and when I was in the hospital for anemia and loss of electrolytes, they told me to stop taking it, although that is not the whole reason for my stopping it. It is mainly because with all the other medications I take, I cannot find the hours, which are 4 hours that have to be devoted to Minocycline (2 hours before, and 2 hours afterwards). And if one takes twice a day, that is 8 hours. I take many others that require the same times. They also asked me to stop taking the Plaquenil. In addition I have no doctor who can help with the many questions. "A herx? What's that!", etc. And there were so many days that I could not get out of bed with nausea. What is that? Minocycline, or in my head?

I would encourage new Scleroderma patients to start in right away with AP before the MD's get to them with all the other prescriptions because they don't prescribe AP. Blood pressure pills, Plavix, Nexium, Aspirin, Nitroglycerin, Nerontin (in place of Lyrica), Carafate, Simvastatin, plus all the other vitamins, iron, etc. I go to 8 doctors now, never mind a Rheumatologist.

Just ranting, I don't expect an answer to any of this; just ranting.
Nancy Blake