So I'm a month into life without Plaquenil. Not experiencing much fatigue though when I do it's terrible. I almost fell asleep at my desk one day, a maintenance person knocked on my door and scared the heck out of me.
My dryness is getting worse -- eyes, mouth, nails (breaking a lot). My Raynaud's symptoms are slowly increasing and my Rosacea is back (I am finding that vitamin E oil put on my face helps the Rosacea).
The item of the most concern is that I have three nodules or swollen joints in my right hand which seem to have appeared almost overnight. One is at the base of my thumb, one at the base of my index finger and one on the knuckle of my middle finger. They hurt if I press on them, but seem hard. Anyone else have anything like this?
I know I should probably go to the doctor about this, but my husband learned yesterday that he has a lump on one of his testicles. It may be just a cyst and I'm praying it's so, but we're both frightened and concerned. He has to have an ultrasound which hasn't yet been scheduled. Please keep us in your prayers.
Welcome back, SjoGirl!!
Yes I will keep you and your husband in my Prayers.
Interesting that your dryness is getting worse since going off plaquenil, in that I recently cut my dose in half down to 200 mg once a day and rheumy said that was fine as I am on the border weight-wise between 200 mg once a day or 200 mg 2xday. Two weeks on only once a day and my eyes are flaring worse than ever.
I thought maybe it was coincidental but apparently not. Went back up to original dose and eyes are better.
RE: nodules on your hands.
A few weeks ago, I out of the blue suddenly noticed two hard nodules on each hand at base of both index fingers. Same place one on each hand. I asked rheumy about it last visit and he felt all my fingers and joints in both hands and concluded these were bone spurs (as in part of getting old...at 58?? That's not old). Those are the only two joints on my hands affected at this point. Weird as is bilateral on my hands. But mine don't hurt when I press on them. They're annoying though.
Still mention it to your rheumy.
SjöGirl, nice to have you back! But not nice at all that you're struggling :( And your husband, too. Praying for both of you tonight.
About Plaquenil (Oxiklorin for me) - it has helped my dryness, too. I've been on it for two years now and yes my mouth and eyes are dry but my mouth feels better than it used to, plus my teeth haven't been as bad as before.
Hi Sjogirl and welcome back!
Just to comment on the nodules...I very recently had an U/S done on one on my left index PIP joint which sounds a bit like yours. The radiographer said it was inflammation that looks exactly like what he sees in sjs and RA patients. I'm still not sure what he meant by that specifically but I hope it helps!
WB SjoGirl,
I have a friend that started Plaquenil two months ago and she is getting so much relief already. She doesn't have Sjogren's. Hashimoto's and other things. She said "I got my old self back". So she's happy.
My son says: "The next problem is already in the mail."
I hope the lump turns out to be manageable.
I don't know about lumps at the base of your fingers. Mine are always on my joints and are osteoarthritis.
You will get it all checked out, I'm sure.
Welcome back again.
Hugs,, Elaine
Could be rheumatoid nodules.
Welcome Back. I have a nodule that seemed to appear out of nowhere on the joint at the base of the middle finger of my left hand.
My rheumy ultrasounded it at my last visit and it showed to be fluid filled with no solid components. She labeled it as a synovial cyst because it lies withinin a synovial type joint.
If I develop any problems using my hand at any time she told me that she would refer me to a hand surgeon. I was concerned about rheumatoid arthritis, but she told me that these cysts and nodules appear out of nowhere in individuals without AI disease as well.
I'm sorry to hear about your husband and as a mentioned above benign cysts and nodules can occur at any time or in any place even in the healthiest of individuals.
Take care.
Sjogirl,
With regard to the nodules at the base of fingers, yes, I have them. I don't know if what you are experiencing is exactly what I have. I have daily, general pain and I also get "trigger" fingers. I have a lot of pain (especially with my thumb). My fingers pop & there is a large nodule type bump at the base of them (very painful). During the day..as some of the inflammation waxes & wanes, my fingers feel somewhat better & will pop less, except for one of my thumbs. I have had this for months in that thumb. Sometimes they will give cortisone shots..but in my experience..the pain from the shot was not worth the short-lived & small amount of relief I rec'd from it.
Will certainly keep you & your hubby in my thoughts & prayers.
I am temporarily off of my Pilocarpine/Salagen to see if any of my symptoms go away.
Take Care.
SjoDry
Hey SjoDry!
I had trigger finger and had surgery (so minor) to fix it.
I wish everything were so easily fixed. The surgeon also fixed the carpal tunnel in that hand.
Apparently all of this goes with the neuropathy or something else associated with our Immune Mediated horror show.
I have such severe arthritis, especially in my right hand (and I'm left handed thank goodness). I can't really carry anything in my hands...and that is very limiting to say the least.
But I can manage the keyboard!
I had the cortisone shot first for the trigger finger. The surgeon kept telling me that the cortisone shot was worse than the surgery (which he had had himself for a trigger finger!). I told him it wouldn't bother me, and it didn't. I have a very high threshold for pain......he was amazed.
And so it goes. I'm very sleepy now on the doubled dose of Neurontin. The neuropathy pains and tingling and burning are almost gone...but now of course the remaining arthritis pains are more salient.
I may need a nap soon.
Hugs, Elaine
Thanks all. I am feeling so much better than I did on Plaquenil it's incredible. I almost wonder if using it and the brief stint I had with MTX did a number on the AI. I'm praying it's so and that it sticks over time.
I see the problem with my hand as a hopefully minor one. I'm going to wait and see how things go with my husband before I check on it because his health is number one right now. He's walked a very long (five years) very dark road with me, the least I can do is to return that blessing to him.
Hi SjoGirl :)
I'm sorry to hear you are having such a rough time.
I totally understand your worries concerning your husband. As soon as we find 'lump' - we automatically think cancer - right? Cysts are pretty common though.
I have two friends who are testicular cancer survivors. When caught and dealt with early - treatment is very successful. The worst time is waiting for tests and results.
positive vibes to you both.
Take care - Scottie :)
We'll..at least you know the plaquenil helps somewhat. I was on it for so many years, I thought it did nothing.
When I stopped, all my neuro symptoms got much worse within 2-3 months. Again, I think a lot of us expect more from this
drug, but I guess it does what it can. We still need other medications along with it if needed, like pain management, maybe metho or whatever...as long as your eyes are ok and other labs check out, I would stay on it indefinitely.
Gursie
Hello Sjogirl.
Happy to hear from you.
Will be keeping you and husband in prayers.
Take care and know you have a lot of folks thinking about you and wishing you and yours good days ahead.
Welcome back SjoGirl,
I will keep you and your husband in my prayers, too.
I get "roving" trigger fingers and thumbs with pain. So strange.
Hugs-
LucyD
Amen and hallelujah, my husband does not have cancer!
Thanks everyone for your support. I was not permitted to discuss this with anyone we know personally. It was a Godsend to be able to share with you and hear your words of encouragement.
That is very good news, SjoGirl. I am very happy for both of you.