Terrible Itching on Plaquenil---PLEASE HELP!!!

[lindaneall]

Feb. 1st I began 200 mg. (1 pill) a day of the brand name Plaquenil.  Three months later in early May the back of my head began itching. It is STILL causing me grief.  Then 3 weeks after the back of my scalp began itching,  my upper left shoulder broke out in a bumpy, itchy rash.  It looks like miniature hives.  My husband prescribed Triamcinolone Cream and this has greatly helped. However, after my left shoulder cleared up, it broke out again terribly 2 weeks later.

My local rheumy feels that if it were related to Plaquenil that my whole body would be itching.  However, a dermatologist friend strongly disagrees and said that a drug reaction can cause localized itching.

I tried switching to the generic (Hydroxychoroquine) 1 week ago to see if it would help. Dr. Vivino told me that if I have problems with one, then to try switching to the other.  3 days after trying the generic, my OTHER shoulder broke out in this itchy mess. Now, BOTH shoulders have areas that look like they have miniature hives, along with this incessantly itchy scalp. Also, yesterday a little itchy spot broke out on my abdomen.  So....the generic seems to be worse. After 3 and 1/2 months, these itchy areas just aren't going away.  It is not due to dry skin.

For those of you with itchy skin due to the Plaquenil, did your Dr. make you get off of it or try reducing the dose?  I am only on 200 mg now.  Have any of you had itching that never resolved on the Plaq?  This is just getting SO annoying, yet I really need to be on this for my severe case of Sjogren's and gastroparesis. Thanks for your input.

[irish]

Oh shoot! That is the pits. Nine chances out of 10 it will be an allergic reaction to the drug. And, yes, you can have a very isolated rash from a drug reaction. I had a 6-8 cm red wheal above my right knee with my allergic reaction to rifampin.

It showed up about 6 weeks after I started the TB drugs for my M. kanasis. I am wondering if the doc started on prednisone at the same time you started the plaquenil??? Much of the time docs will do this to help relieve the symptoms until the plaquenil kicks in. Sometimes when you have prednisone along with a drug it sort of soothes the way and you body will get used to the drug without any "events".

With the presistent spread of this hivey rash it sure makes it hard to believe that you will be able to continue the drug. The one thing that might help solve the problem is to stop the plaquenil. If you stop and the rash goes away in a logical period of time and then restart the drug only to have the rash come back. Bingo--you will know.

It is also possible that you are having a rash from another cause. Dermatology has advanced a lot but these darn rashes are still hard to pinpoint and nail down. They can show up and drive a person crazy for a long time only to disappear almost overnight. If the rash stays when you have been off the  plaquenil it could well be from something else.

Then there is the other possibility---who the heck knows!! My hubby suffered with the hivey rash like yours here and there and everywhere for many months. We tried holding just about every med he was on to no avail. When it came time to hold his inhalers we held the Spireva first and that was the one. He cleared up very quickly. They even advertise the hives as a common side effect but we didn't even think of it. Hope you can figure this out. Irish

[stephL]

Itching is not an uncommon symptom to have with an autoimmune disease, so my hunch is that the itching is a new symptom. It's possible that you developed an allergy to Plaquenil after taking it for three months but unlikely. I'm not a healthcare professional but just from my personal experience, allergic reactions usually occur soon after you begin taking take a medication.

I've suffered from severe itching and it started years before I was diagnosed and treated with Plaquenil. To relieve the itching, I take Zyrtec or a generic equivalent. If I take Zyrtec regularly, and on time every 24 hrs, it controls the itching pretty well. But if I forgot to take it and it wears off, the itching flares really severely and it's difficlult to get back under control again.

If you really need to to know, I guess you have to stop taking Plaquenil but I would hate to see you disrupt your treatment needlessly. It's a tough decision.

I hope you figure it all out and feel better soon lindaneal!


Edit: I know that Zyrtec can contribute to dryness symptoms. I personally don't notice it being an issue.Without the Zyrtec, I think I would lose my mind from the itching, it's very frustrating! So even if it does contribute a little to dryness, I'm willing suffer that because the itching is just so unbearable.

[lindaneall]

The crazy thing about this itching is that this is the 3rd attempt back on the plaquenil and with the 1st two tries I had no itching but different side effects that made me discontinue it.

The 1st time I was on it (brand name) 400 mg. for 8 months and had to d/c due to terrible intestinal cramping and tinnitus. These side effects didn't begin until I had been on it for 5- 6 months.

The 2nd time I d/c it after 6 months due to mild persistent nausea. Again, I was on brand name and 400 mg. day.

Now, the 3rd attempt I am only on 200 mg. a day and then these itchy spots began after 3 months. Ugh!  I fly to see Dr. Vivino on Sept. 15 so will see what he recommends. I will call his office sooner if this gets worse. I am just SO sensitive to meds.  I have bad leukopenia and had to d/c Methotrexate after 2 weeks because it pulled the WBC's too critically low.

Irish and StephL, thank-you so much for you ideas.  Irish, do you think that if this were an allergic response that it should have shown up on the 1st two attempts on the Plaquenil?  Also, I agree that it might be worthwhile to stop the Plaq. for a bit just to see if this resolves.  However, at the same time wouldn't it be like starting all over again to build up the pos. effects if I d/c it for 2 weeks?  Thanks again:)

[lindaneall]

Oh, I wanted to add on to what I just posted a few minutes ago.

I am not on any other meds besides the plaquenil.  Also, there has been no change in my diet, lotions, shampoo, soap, or anything else that I can think of.  Because the prescription steroid cream helps to clear this up (then it returns!), then I tend to believe it is drug related.

[ohiolady]

Linda,

I am sorry to hear you are struggling with this rash, it has to be miserable.  I can relate to being sensitive to medicines as I have that problem myself.  Keep us posted and I sure hope you find an answer to this misery.

Anna

[Iris]

I had to stop plaquenil because of an itchy rash.. It didn't bother me until I raised the dose above 200mg a day then it went wild.. Besides the red rash I had all over I also had itchy bumps on the palms of my hands that seemed to be deep under the skin..

My doctor had me to stop all medicines I was taking until it went away then start the plaquenil again.. The rash started again within a day.. So no more plaquenil for me.. 

It's not unusual for me to take a medicine fine one time then the next time I take it i'm allergic to it.. It sure is expensive paying for all of those prescriptions and then you can't take them..

[lindaneall]

Iris, thanks for sharing your experience.  This a.m. I ended up calling the Univ. of PA to speak with Dr. Vivino's nurse.  She will call me back this eve. or tomorrow a.m. and tell me if I am to stop it for awhile.  She says often Dr. Vivino has someone d/c the med. and then restart it in 2-4 weeks.  After being on it for 6 1/2 months, I don't relish the thought of having to start again from ground zero.  It takes so long for it to be therapeutic.

Anyway, I'll let you know how it goes.  Anna, thanks also for your kind wishes.

[lindaneall]

Yesterday Dr. Vivino's nurse called.  I was given 2 options....either stop the Plaquenil or try Allegra.  Since the itching isn't too severe, I'll keep using the topical cream and try the Allegra. I also read the other day that someone mentioned a natural antihistamine called D-Hist.  I was so grateful to have heard about this also.  Maybe I'll give that a try.  I just couldn't tolerate any drowsiness on an antihistamine and wouldn't relish any more dryness. 

[MsKitty]

Hi everyone,
As previously posted by lindaneal re: itching when taking Plaquenil, I would like to contribute my experiences with it also. 
I also have Sjogrens and have stayed taking Plaquenil (200mg) a couple years ago. However, within the past year it seems to have ceased is effectiveness...and my joint pains have started to get so bad that a couple times I couldn't even walk as I was unable to weight bear on affected joints in my LL's. My GP sent me to the hospital fearing in case of it being some be type of an infection in my joints or septic arthritis  (I think)! They did every type of scan (CT/nuclear) as well as x-rays and ultra sound,  but in the end they did that it showed that my Sjogrens was just becoming more severe.  The rheumatologist put me on Prednisolone for a few weeks and that helped. But that was the beginning of ongoing exacerbation of my joint pain with each of the joints in my LL's and UL's being affected. I never needed to take considerable pain relief prior to the past year,  but my dr now gives me prescription pain relief intermittently for the pain of my Sjogrens. (There is another source of considerable pain that has started to affect me within the last year,  but whether it is our isn't related to me Sjogrens - the tests are still ongoing).

Anyway, thats the back story, what I wanted to focus on is
that over the past couple of months I started getting patches of itchy rashes as well,  on my face, legs etc. They do kinda look like mini hives, also experiencing itching on my scalp and in patches in other places. This I think is similar to what lindaneal had experienced also. It seems to be connected to Plaquenil because I tried not taking it and these symptoms get better but seem to return when I start the tablets again.  A  prescription cortisone cream relieves the rash. But since I only just tried the cream recently and am still using it,  I don't know if the rash will come back when I stop the cream application. And since I am only on 200mg which doesn't seen to be any longer very effective in reliving Sjogrens symptoms,  does that mean that if I am given a higher dose that it could make the skin rashes and the itching worse? Anyway, has anyone experienced an exacerbation in their joint pain with the dose of Plaquenil they were on no longer seeming to work as well and did a higher cost of Plaquenil consequently make it better?
I wonder if the commencement of the skin rashes and itching is related in some way to this decreased effectiveness of the medication too.
So far from the other posts it may seems that Plaquenil may be somehow associated with skin rash (that looks like small hives) and patchy itchiness. If anyone has any comments or had experienced anything similar, I would be very happy to hear 

[Nymph]

Linda, any type of quinine drug can cause mast cells to degranulate, which will provoke an allergic-like reaction. Along with Allegra, you might want to try a mast-cell stabilizer. Quercetin is a natural stabilizer you can try in a supplement, but there are also rx meds. Or you might just be allergic to Plaquenil. Good luck figuring it out!

[cccourt1942]

I have complained and asked about odd itching since I have been on this forum.  And no one seemed to relate.  I itch in strange places--but not consistently.  I never related it to any med...but I am on the generic plaq.  I have guttate psoriasis...but have never itched with it. 

Now?  I have certain areas on my body---that I believe is an insect bite (mild winter here) but...it isn't.  The strangest area I have which itches is my breast bone.  I will slather it with calamine...and then will myself not to touch it again.  In between I remember to put moisturizing lotion all over it (Cetaphil) and though it does stop (eventually) it will return.  It will reoccur in weeks or a couple of months.  I have a mole on my diaphragm which will itch repeatedly which is occurs as  the above timeline.  Then my ankles itch, toes, scalp, auricles, a FINGER.  I can't think of an area I haven't itched.  Now then, since I've only been on the hydrochloraquine for about 2 1/2 years, I can recall these itchings BEFORE the med.  It's why I never connected it to any med.

I have a derm appt this month.   I don't think she will know.  Though I have been fortunate to find physicians in the diagnostic practice I use who apprise themselves of more info on SjS, not all have.  (Such as my ENT)  Oh..and my urologist too:  advised me to stop drinking water after 4 or 5 o'clock to cut down on all night nature calls!  Ah but I could.  btw:  I never asked my previous derm about the itchings.  Seemed innocuous at the time.  Then I learned I had SjS. 

Interesting thread.   I wonder why everyone on plaq or (hy-chlo) doesn't itch.

c3

[Tharrell]

When I got back on plaquenil I had a problem with my face itching all the time. Allergist put it down to sun sensitivity and told me to wear sunblock at all times. When I told my rheumy she told me that it was the plaquenil causing it. One of her nurses was having the same problem. She told me to grin and bear it since there was nothing else to treat sjogren's. Since then I had a major break out all over my body in hives and welts and my new allergist diagnosed me with autoimmune uticaria. Told me to start taking three allegra 24 hour a day and if that don't work to switch to zyrtec. So far no luck yet and waiting for my follow up appointment.

[SjoGirl]

I tried plaque when L and unfortunately failed on it twice. I had every side effect under the sun though itching was actually not one of them. I had headaches tinnitus stomach issues and most of all developed nocturnal seizures. Both times that I stop the drug the side effects stopped. So we have determined that I simply cannot tolerate it.

I hope that you're able to find some sort of solution because I no the drug can be helpful.