I have begun a flare, and a new symptom started this time around, Canker Sores in my mouth. (Yeah, like I needed new symptoms to add to the dandy ones I already had!) :)
Has anyone every suffered canker sores when a major flare starts up? I got a big flaky itchy spot starting on my scalp, then the fatigue set up, increased joint pain, and for the past week, I've had 6 different canker sores?
Is this common? It's new to me!
Thanks, Lainee B.
You can get spots of psorias in your mouth. And not to cause a scare, but with the joint pain etc. I would see if your rheumy would consider an ANA test. There are other connective tissue diseases up to and including Lupus that are related and have similar symptoms
Thanks Lamb, I wish I could get him to consider ANYTHING. My first appt. with Rheumy took 5 months to get into, and after 10 minutes, he stated that my "according to my xrays, the joint damage was not severe enough to confirm PsA". (He pretty much blew me off.) Even though my primary dr. and pain specialist (and the dermatologist I saw) believe that is the cause of my illness. Psoriasis runs in my family, and I get it on my head, scalp, neck and forehead. It also goes into my eye and I get a really red, bloodshot eye for a couple weeks with a flare (just got over that). I have really bad ridges in my nails, cracks around my fingertips, very sore finger joints in the both hands and my left elbow joint is terribly painful. Also, major fatigue, severe SI Joint pain which I have been getting cortisone injections in for years now. Now the canker sores. These symptoms get worse every time I get a flare on my scalp. (Stress seems to make it worse too.) It just sounds like all the symptoms are there, but I am now without a rheumy because he doesn't feel I need one. :(
Thanks for listening, sorry to complain.
tntlamb said:
You can get spots of psorias in your mouth. And not to cause a scare, but with the joint pain etc. I would see if your rheumy would consider an ANA test. There are other connective tissue diseases up to and including Lupus that are related and have similar symptoms
You might have to go through the back door, if you can't find a rheumy who will even take the time to read the protocol for Dxing PsA (xray changes are NOT part of it everything else you mentioned IS) Both Enbrel and Humira are approved for treatment of psoriasis (you don't even have to go through the NSAID and DMRD loops to get it) Have a heart to heart with your Dermo. Enough of them are into "cosmetic" dermatology (there is fancy name for it that they are pretty good listeners (otherwise they couldn't suck vanity money out of their patients pockets) Getting a script for one or the other should be pretty easy
Psoriasis in your eyes IS VERY SERIOUS next time it appears get too an eye doctor ASAP (they will make a smae day appointment. Its called uveitis and can cause blindness. Its also another back door Humira is approved for treatment of uveitis.
(BTW they will prescribe drops for Uveitis, a 10 day supply is over $200.00. You can get the same medication in two different drops an antibiotic and a steroid for under 20, why the prescribe the combo is beyond me.....
OBTW try sensodyne tooth paste
Thanks for your help. I agree with you 100%...I was so upset after the Rheumy appt. My eye doctor HAS seen my uveitis, and his wife suffers from RA so he was VERY familiar with it. I got 2 bottles of steroid eye drops (cost me $62.00) but I have it on hand when/if I get a flare. It's really ugly and red and looks like I got shot in the eye! My eye doctor was very concerned when he saw it and said it is very common with autoimmune diseases. I think I should go back to my Dermo too. I don't have very good health insurance, so I have to save up some money to go see him. I will discuss my concerns about my family history, with my brother getting remicade for his plaque psoraisis, and then getting non-hodgkin's lymphoma. There must be some other alternatives.
Thanks for the sensodyne tip...I'll give a try, I've got a tube waiting to open. I've been using a peroxide mouth rinse to help the pain.
Lainee B.
tntlamb said:
You might have to go through the back door, if you can't find a rheumy who will even take the time to read the protocol for Dxing PsA (xray changes are NOT part of it everything else you mentioned IS) Both Enbrel and Humira are approved for treatment of psoriasis (you don't even have to go through the NSAID and DMRD loops to get it) Have a heart to heart with your Dermo. Enough of them are into "cosmetic" dermatology (there is fancy name for it that they are pretty good listeners (otherwise they couldn't suck vanity money out of their patients pockets) Getting a script for one or the other should be pretty easy
Psoriasis in your eyes IS VERY SERIOUS next time it appears get too an eye doctor ASAP (they will make a smae day appointment. Its called uveitis and can cause blindness. Its also another back door Humira is approved for treatment of uveitis.
(BTW they will prescribe drops for Uveitis, a 10 day supply is over $200.00. You can get the same medication in two different drops an antibiotic and a steroid for under 20, why the prescribe the combo is beyond me.....
OBTW try sensodyne tooth paste
Hi Lainee,
Just went through my first bout of canker sores in years. Nasty little buggers. Had one on my tongue that hurt like hell. Now rinsing 2x/day with Listerine (aerobic mouthwash) and taking Lysine daily. Can't remember the dosage of my Lysine tabs--rheumy just told me to take the adult RDA listed on the label. Dentist recommended Oragel (benzocaine) maximum strength. Insert a clean Q-tip into the bottle to get it really wet with the stuff, then lay the Q-tip right on the sore for as long as you can (a few minutes if possible)--the longer, the better, he said. It helped with the soreness in all of mine except that one on my tongue. Nothing helped that!
Rheumy said the sores can accompany auto-immune disease, could occur as response to physical or emotional stress, and are a side effect of many meds used to treat PsA, including MTX.
I do recall years ago, a dermatologist I was seeing for psoriasis at Cleveland Clinic told me about mixing Milk of Magnesia (some people use Maalox) with 3% hydrogen peroxide and rinsing with it. Google proportions to be sure, but I think it's 1/2 and 1/2. The peroxide is aerobic (introduces oxygen) for the mouth. Anaerobic bacteria (the bad guys) can't thrive in the oxygen rich environment. The MOM coats the canker sores and is supposed to be soothing. This is a variant of what docs call "magic mouthwash," a compounded wash that also contains prescription ingredients: http://en.wikipedia.org/wiki/Magic_mouthwash
The eye symptoms you describe sound awful. Sorry you are having such a time of it. I've had a sort of conjunctivitis pretty regularly over the years that they tell me is PsA related. So far, I've been lucky to manage it with steroid drop samples from the optometrist. Itches like heck, causes tearing and reddish eyes. I developed little fluid-filled "inclusion" cysts on the whites of the eyes, also typical with psoriasis. Sometimes they have to be lanced, but mine have always resolved on their own. So far, nothing as extreme as you are experiencing.
I have to say, I might consider trying another rheumatologist. Anyone can have an off day, but when a doc routinely blows me off, then they aren't addressing my needs. I'm not only wasting time and throwing my money away, but also not getting the relief I sought in the first place. I've encountered a few like that over the years and I know how discouraging that is. It certainly doesn't help anything!
It's not always easy to change docs for various reasons, but your health, comfort and peace of mind are important--in fact, they are the only reasons to go see a doc at all. If your doctor isn't filling those needs, then he isn't helping; he's hurting. Maybe your dermo could provide a referral?
I hope you are able to get some relief soon! Keep us posted.
Hi Lainee,
I had the blisters inside and outside of my mouth, looked like a monster, went to GP he gave me meds, was scheduled to go to the Rheumy at end of week, and he said it was a reaction to the MX, saw that I was no better, that is when he put me on Enbrel.
I just called the support hotline with a question about using just my arms for shots, and she offered me help with the payments, or perhaps even free meds. I am most fortunate not to need the help and was shocked I was even asked! So by all means get that Rheumy by the ear, (or get an new one) and don't let him go until he prescribes it for you, he will give you the kit and one or two free samples, on ice packs, and call Enbrel support. If he doesn't give you the travel kit, they will, as she offered me that as well. I am not familiar with any of the other biologicals, but surely they offer the same help, should he think another is more suited to you.
As always, you have been given excellent advice here from everyone. My very best advice is to get a new Rheumy if you have to. Really, we can't get better unless we have a Dr. who is committed to us.
Wishing you well,
SK