Wishful thinking?

[mom16]

So the Plaquenil I've been taking has finally kicked in after a year. On a scale of 1 - 10 my pain ranges between a 2 - 4. I wonder if this means I'm set now and it's all under control from here on out
Is this wishful thinking?

Karen

[Joe S.]

Wishful thinking... While we have periods of management we also have periods of flair. Therefor practice your management skills.

[eyeamdry]

Karen, sorry the plaq took so long to kick in.  Aren't you glad you decided to give it extra time?  I know if something doesn't work for me, I'm anxious to kick it to the curb. 

What would you say your pain scale was prior to the Plaquenil kicking in?  Lucy

[mom16]

Lucy-

I would say it was about a 6. 

[Scottietottie]

Hi Karen 

Think positive. I've been pretty stable for a while now.

Take care - Scottie 

[season]

Plaquenil??? Well I gave up on it late last year and decided to give it another try this past January and been on it for 10 months now. I still have all the dryness issues and my sinuses drive me crazy. I have numbness, tingling, pain in my legs. My feet are always cold. My face is in constant discomfort and pain. I have to see an opthalmologist regularly because it is required for me.

So I have been thinking of letting go of the plaquenil because I still have all these horrible things that I was hoping the plaquenil would help. I haven't seen any great benefit for taking it not to mention the hair loss, nightmares, restless sleep.


We are all so different. What works for some, doesn't for others.

[Epson]

Hydroxychloroquine is an anti-malarial drug that is used in the treatment of malaria. It is also used treat systemic lupus erythematous, rheumatoid arthritis and Sj?gren's Syndrome.  Hydroxychloroquine increases lysosomal pH in antigen presenting cells, its mechanism of action in inflammatory conditions involves blocking the activation of toll-like receptors on plasmacytoid dendritic cells . Toll-like receptor TLR 9, which recognizes DNA-containing immune complexes, leads to the production of interferon and causes the dendritic cells to mature and present antigen to T cells. Hydroxychloroquine, by decreasing TLR signaling, reduces the activation of dendritic cells, mitigating the inflammatory process. Hydroxychloroquine is also used in the treatment of post-Lyme arthritis.

Hydroxychloroquine is not marketed as a miracle drug, just a drug for the treatment of malaria and the above mentioned rheumatic disorders, to reduce inflammation.  I have never found any material that suggests that that hydroxychloroquine is prescribed for neuropathy, head aches, diarrhea, pain management, hemorrhoids, CFS, dry mouth or tooth decay.  All of these other maladies will need to be treated with another drug specifically developed to treat that symptom.

Once you have Sjogren's you have a friend for life and the best you can do is to reduce it's affects and try to obtain as much quality of life as possible and hope that you don't get something truly dreadful like cancer or leukemia.  Sjogren's is definitely life changing and you have to except the fact that there is no miracle drug yet, so we have to except that what we could do in one day might take us two or three days, but at least we are still doing.                           

[eyeamdry]

Epson, good points about Plaquenil.  I take it and it does NOT help with dryness, dry eyes, dry mouth or any other dry thing-of-a bob. 

I take it because I believe it's helping my joints, and inflammation I have in my body.  I take Lyrica and a bunch of other things.  Like Epson said, there is no "one pill takes care of it all."  No one size fits all.  You can almost pick and choose what you want to take depending on your $$ and what symptoms bother you the most.  Lucy

[mom16]

Yes, to clarify where I have noticed the difference is in my joints. I do have neuropathy and I take Neurontin which helps.   
I do NOT have dry eye or dry mouth so I can't say whether Plaquinil helps with that or not, but from what I've read it doesn't.

Reading that this disease is a friend we have for life is sad, but unfortunately a fact we must face.
Thank you to everyone who replied.

Karen

[Joe S.]

Epson, I love your post. It is one of the most informative post on Plaquenil that I have read. Thank you!.

[Babs659]

It has greatly helped with fatigue.

[season]

Thanks Epson for the clear picture.

"I see, said the blind man."