plaquenil

[bluegardenia]

today i went to my immunologist ( reumatologist). nothing new in my exams but she wants me to start plaquenil. i always was low on white cells but since last year when i had to make a test to find an alternative to penicilline and tried another antibiotic(two pills)  white cells went down and  after ten months they are still worse than before antibiotic. i have now 3.9 that is almost normal but low. she says that it could be due to autoimmune disorder so plaquenil could raise them. anybody with the same problem? plaquenil helped whith white cells? everybody is happy with plaquenil? i dont want to take it

[SjoGirl]

Blue Gardenia.

Leukopenia (low white counts) and other penias (low blood counts) are part of autoimmune disease.

I am surprised that the rheumatologist is suggesting plaquenil as a fix, I found it had the opposite effect, lowering my counts (now that just be me and I am in the top 5% for oddness).

FYI I've learned for some of us low counts are just part of our make up. More than one doc has said my readings of 3.7 on a scale of 4 are not a big deal. I am not getting infections like I did when I was first ill so I believe them to be correct.

I would note that my white counts did go up when I was put on Imuran and have stayed up while I've been on it (and they can go down as a result of taking that med).

[Carolina]

Oh dear, Gardenia, I don't know any way to help.   I sense that you wonder why such a drastic (to you) recommendation to begin Plaquenil was given to you at a check up based on the number of your white blood cells. 

I don't like to second guess my doctors, personally.  But I have delayed beginning a new treatment until I felt more comfortable.

If you don't feel you want to take Plaquenil, tell your doctor.  Perhaps you both have something to learn.

Regards, Elaine

[bmonahan]

Hi,
I have been on plaquenil for about 4 years. My white blood cell count is always low 2.5 
I seem to be less fatigued on it.  It does nothing for the all over joint pain and brain fog. 
I tried to stop it about two years ago and felt much worse, so I started it again.
So far I have had no side effects on it and my eyes are doing well. 
God bless

[irish]

Plaquenil is really classified as anti inflammatory the last I heard. It is not an immune suppressant. In other words it will not get rid of the Sjogrens. However, it will help with the aches and pains and many people have more energy. I have been on it for many years and on the occasions when I have gone off of it for several months I always get more of the aches and pains back. It doesn't seem to help.

The issue with the vision is quite manageable. We take a much lower dose of plaquenil than is given when it is taken for malaria. The lower dose decreases the chances of eye issues. There is always the remote chance but having regular checkups at the eye doctor is part of the routine. Make sure to have the in depth eye checks done. Good luck. Irish

[Liz D.]

It has certainly helped me to live my life again.  It helped me with pain and fatigue.  Not a cure-all but it definitely helps.  I'm vigilant getting my eyes checked but have never had a problem.

Liz D.

[cccourt1942]

Blue:  I hear you about starting one more medication.  And....I can tell you....my first rheumy (like your Immuno) told me there were no significant studies to indicate Plaq shows it will slow down SjS.   

FF:  I've been on it for over 3 years now.  (because of anemia) I've undergone these esoteric blood tests.  In the comings and goings, the rheumatologist remarked about Plaquenil reducing inflammation. All this is additional stuff for me because  of an impending hip replacement.  One outcome causes the domino effect.....like dominoes falling!!  My point is, I don't think I ever knew that was a purpose of plaquenil. I went from one doctor who didn't really believe in its efficacy to another who just gave it to me.  AND...at the time, it was the only med I was on but for pilocarpine.  Well..and Restasis.  I should have said oral meds.  That list has increased dramatically.

I'm sharing this so you can ask your immunologist just what does plaquenil do for YOU...your body.  I'm so different since I was so old when diagnosed.  I had been uncomfortable for a long time.  I really accepted anything.  I'm just now realizing I need to ask more about everything--but more is happening to do with old age stuff...not really SjS related.

I just had blood drawn (REALLY) 3 times in 8 days.  Absurd.  Anyway..so checked my WBC..and it's 5.9...with range: 4.0-10.5.  RBC 4.2 w' standard range 4.0-5.3.  I haven't  taken time to compare to previous tests.  My Hemoglobin was the flagged count for a couple more tests.  And...they've all been within the norm.  ON PLAQUENIL!  Again....remember I am old.  I truly believe all of this is due to my age as opposed to SjS.  Within the next two weeks, I should be able to know more.  The result tho....means due to anemia...I can't have my arthritis meds any longer due to anemia.  And plaquenil does not offer enough benefits for pain for me.  I actually could have both of my hips done.  I am having the one done which is worse.  That's pain.

I just wish I could tell you that it raises the levels...but just can't.  Don't be like me: ask more questions. 

Hope you are having good weather.  It was 16* this a.m.  For anywhere in Texas that is cold.   
c3

[bluegardenia]

thanks everybody for your helpful and kind answers. im quite confused may be because ive seen too many doctors. the fact is that as many of you, (all of a sudden) i do not have ENOUGH exams showing that i have sjogren. i made two lips biopsies, the first was negative and second slightly positive. it means that the person who  wrote the result of the second, did not write the exact amount of inflamation but she wrote  a score  "sjogren like", a degree of inflamation that leads to the diagnosis of sjogren.
all the three or four rheumy that i have seen, at the beginning said that   even  with sllghtly positive anti ana but no anti ssb etc, due to my eyes and dry mouth  and that biopsy,I have sjogren .
now they changed their opinion and they say its just connettivitis. yesterday i saw one of them and she gave me plaquenil , as i said, because, she said , it can help with  low white cells if the white cells are few because of autoimmune desease. lowering the autoimmunity the white cells could become more.
today i went to neurologist because of vertigos i have since  november, little itchings and some times ,sensation of having a veil on my face. he visited me for one hour and a half... i do not have anything neurologic  he said,  i react to all the tests alike a girl of 15.... LOL ,so even vertigos could be idiopatic that means just in my head...
all i know this evening is that i will not take plaquenil and that i do not trust any doctor
sorry for long explanation

[bluegardenia]

i forgot to say that the neuro i saw today works in a hospital that treats only neurologic deseases and said that  sjogren is not unknown, he visited many sjogren and their neurological signs were very clear.....also blood exams are clear ( yes yes i know there are sjogren with negative blood exams he added)not like me

[cccourt1942]

This is good news!!!! c3

[irish]

bluegardenia, I am so sorry that you have had the misfortune of having some doctors who don't have mch common sense but have large egos. Doctors with large egos never admit that they could be wrong.

You may have better luck with a rheumatologist and I get it when you say you don't trust doctors. Sjogrens is very hard to diagnose at times. It can drive the doctors and the patients crazy. A large percentage of Sjogrens are sero negative and that doesn't help any when you have a doctor that doesn't believe it.

I can't tell you how many doctors I saw but I went to so many and had symptoms from 1964 to 2003 when I was finally diagnosed with Sjogrens. I never had a positive ANA until then. I was told it was psychiatric and treated like a dog. This happen more than once. There are a few rude doctors out there. My husband even got sick of taking me to my appointments at one point and told me I should just give it up and learn to live with it.

I'm Irish and can be stubborn and I told hubby there was something wrong and I was going to search out a diagnosis as I wanted to know what they would put on my death certificate. Maybe take a rest for a while and start over. I used to do that cause one gets burnt out and broke and need time to replentish physically, mentally and financially. Good luck. Irish

[Deb 27]

bluegardenia, sorry you have been having a rough time of it lately. I have been on plaquenil for several years now. My white count has been going down. So, that's my experience.  I hope you can find something to help. It seems odd to have an auto immune disease and also have low white counts.

[bluegardenia]

thanks again for your kind answers
if i understood well, nobody with leukopenia or  even with less than normal white cells  had any improvement(with white cells) taking plaquenil? any improvement with the inflamatory markers like c3 c4 ferritine etc?
thank you

[vrystaat]

There is more happening on this subject, but on a slightly different topic.
The cost to me of Plaquenil has jumped from $15 a prescription for me to $47 for 2 months supply. Costs for treating this disease are increasing steadily, & I'm very concerned.
I have heard that Part D Medicare Insurance companies may restrict its use. For me, this would be a disaster because Plaquenil is the only
drug that helps me (and that includes the Biologics). Perhaps it's time to look internationally. Furthermore, my Drug bill is now at least $4000 annually.

[bluegardenia]

at least regarding costs im lucky because here sjogren and connettivitis are considered rare diseases so  almost everything ios paied by nhs or we pay just a ticket for some exams.
two days ago the neuro that ive seen told me: trials for new meds are made with people that are frankly sjogren, with no doubt, they are sjogren or not.
i answered ,well thats why there is not much progress because most of people with sjogren are not recognized !. of frankly sjogren like you doctors  consider a frankly sjogren, there is may be a couple of dozens in the world...he did not like my humour