Ohhhh it's been a year and at first I had elevated ANA and SSA antibodies, now my ANA is 1:40. All of the extensive blood work I've had for ALL autoimmune disease and everything else has come back normal. My eyes and mouth are not totally dry....my arthritis has calmed a bit.....so right now I'm dx as "arthralgias and elevated ANA!!!! In six months she's giving me a test to see if it's "safe" to give me plaquenil??? Has anyone heard of this test?? She thinks I "may" have erosive osteoarthritis which I believe is part of SJS, right?? So I would think Plaquenil would be the right thing to start. My CBC, Sed rates, CRP and every other blood test has come back normal except my high cholesterol!!
I have not been fatigued in the past year....so, can anyone comment on this??
Hi Gold,
My ANA is the ONLY thing that has ever been elevated for me, and the highest it's ever been is 1:160. Usually, however, it runs at 1:80. Yet, my mouth and eyes are dry, and I have all the weird intermittent neurological and rheumatological features of sjogrens, and I have a firm diagnosis of sjogrens.
I think it's ridiculous you're not getting the diagnosis after having those two tests return positive - regardless of the fact that they went negative again. I think that happens with AI diseases as they flare and calm down again.
Just because your symptoms are not causing you dire effects right now doesn't mean you don't have it. It sounds as though you do have it, but just have a mild case or perhaps are in early stages. Best to get on a treatment plan now, while you can still prevent damage.
Once damage is done, it's done. I would push harder on this for sure! You deserve to be diagnosed and treated - or at least treated. If your doc pushes back, then find a new doc!
thanks Lolo....at least she's pondering Plaquenil. My other rheumie would have had me on Methotrexate by now...she's just the opposite!! I want to avoid a lot of pills but I really don't want to get deformed arthritis. I read that 20% of SJS patients have somewhat normal tears and saliva so, why couldn't I be one of those people and instead it's attacked my joints!! If this were normal osteo I would understand but if there's any chance that it's erosive due to SJS I think the Plaquenil might slow it down.
Wow. My findings were all normal except low vitamin D and B and a high CRP and SED rate and my Rheumy started me on Plaquenil on my second visit to him. It has helped a lot, for me at least. Everyone is different though. I hope she will consider it for you soon. It's not a cure all but it has helped me with my joint pain and fatigue. I have to take Salagen and Restasis. Sorry you are going through this. I've never heard of a "test" for safety in taking Plaquenil EXCEPT they usually make you see an eye dr to get a baseline of your visual field and so on as the drug can cause eye issues but it's said to be very rare.
Also, in AZ there are not a ton of Rheumies! If you dump one you are lucky to get your last try ;)
I forgot to say I do have the peripheral neuropathy.
One of my first diagnosing rheumys left U of Michigan and moved to AZ a few years ago. I think she is at AZ Arthritis Clinic. Lucy
That seems crazy, if you've got a positive SSA, then you should be given a diagnosis!
I've got an ANA of 1:80, my eyes and mouth are very dry, my joints swell, I get rashes, have abnormal LFTs, Raynaud's, sun sensitivity, fatigue etc etc. I have a diagnosis of UCTD but my doctor said it's in the "Sjogren's family". I've been on Plaquenil for almost 9 months and I've been doing really well. I'm 22 and have had symptoms since I was 8, but only really got any answers in the past few years, previously to that my joints were just treated with steroid injections and I didn't even realize my eyes and mouth were dry because that's the way they've always been.
I've never heard of a test to see if it's safe to give you Plaquenil. Maybe they're checking your eyes? It can cause changes in your Platelets which I have had before. Other than that, I don't know what it could be. I don't think osteoarthritis is related to Sjogren's Syndrome, it's usually an inflammatory arthritis.
It seems like Plaquenil would be a good place to start. I would not be without it now, it's given me my life back. Yesterday I managed to go for a 1 hour swim and 1.5 hour walk. This time last year, I couldn't even get out of bed. I pushed and pleeded for my rheumatologist to prescribe me something to help rather than worrying about giving me a diagnosis. Nine months ago I started Plaquenil, last week I was diagnosed with UCTD.
Good luck.
I have non-erosive polyarthritis - my rheumy said the arthritis associated with SJS doesn't usually cause joint damage. I also think if you tested positive for SS-A you should at least be given Plaquenil to see if it helps with your symptoms!
You are all so kind Lolo, eyeamdry, mshistory, matilda and AAA to read my post and respond. I know I'm not in desperation or in tons of pain like others at this point so it's nice that you take time to give me your opinion on this "test for plaquenil safety"???
@ matilda and mshistory I do agree that if I am producing SSA's I should be diagnosed and put on Plaquenil being that I have more tendon, muscle pain and some joint pain in fingers and big toes!
Guess we'll see after I take the plaquenil safety test....LOL....sorry but this kills me never even hearing of such a test.
@eyeamdry I am going to try to find your old Rheumie I believe up in Phoenix!
For now my rheumie prescribed me Mobic and some Voltaren gel (when I only need to treat my toes) so I am anxious to try this. The OTC stuff just isn't touching my tendon, muscle and joint pain like it used to!
I have a second rheumie I may go back to in August. She wanted to put me on Plaquenil my first visit!
thanks much, Jill
Quote from: lolo1979 on June 01, 2012, 07:28:10 AM
Best to get on a treatment plan now, while you can still prevent damage.
Once damage is done, it's done.
How does our different medicines work? Are for example Plaquenil fighting the disease in the sense that is slows down (I dont dare to write stop ...) the damage or make it us "just" feel better (if you understand what i mean)?
I of course really dont like the feeling that I am getting worse all the time so I would be very motivated to try some of biological treatment (as B-cell Depletion with Rituximab).
Anybody know a a pilotstudy I can join?
I've only "heard" that Plaquenil slows the progression of our disease and it is written that Sjogrens progresses slowly. Now whether that means in the beginning or in the stages of salivary, lacrimal, connective tissue and joints, I don't know. Don't know if it begins to affect our organs if it still moves slow or the progression speeds up? Guess it matters if you have a mild or very bad case of it. There was a thread where we attempted to discuss stages of disease but I'm not sure we were successful regarding Sjogrens. There is so much of the unknown and it's so individual!
@Sven, I would think the infusions are for people who have much progression with this disease than someone like me who has dryness and aches and pains in muscles and joints. I think I am a candidate for Plaquenil and I'm sorry but I can't remember your case as being very severe? Wish you luck with a good doc who wants to make you feel human again!
Quote from: gold55 on June 02, 2012, 11:10:44 AM
I think I am a candidate for Plaquenil and I'm sorry but I can't remember your case as being very severe?
My case is not very severe. Yet ... But the way things are going it will be quiet soon I am afraid. I got Salagen and it felt really good to have a good saliva again. Two months later I am almost back as before the Salagen. This disease is supposed to develope slowly!
And that is the reason why I want to take on the heavy stuff at once. It is just going the wrong way too fast.
Hi Sven,
There is no guarantee how SJS will affect the person. Where SJS progresses slowly with some folks, a little faster with others, and still faster with others...there is no way to predict how it will each person (as we are all so different). Can you speak with your doctor about your concerns and see if he can either up your dosage of Salagen or change the med to Evoxac maybe?
Hang in there, and keep us updated, okay?
Patze
Hi Gold!
Wow, a year and no diagnosis? That has to be frustrating! I think being in limbo is very, very hard. Sometimes I think I'd rather have a diagnosis I don't want than be in limbo.
You are right. Though dry eyes and dry mouth are the "hallmark" symptoms in Sjs, not everyone has them, and they do say that erosive osteoarthritis can be a part of Sjogrens.
From everything that I've read and studied about Sjogrens, it seems like I hear about a lot of cases where people were diagnosed who showed up with neuropathy as their only or main symptom at first. I think that PN and other neuropathy is much more common in Sjogrens than most people realize.
I've never heard of a Plaquenil test. Like someone else, my Rheumy did tell me to go get an eye baseline when I first started taking. He's also told me to also get my eyes checked every 6 months, but my Opthamologist said that every year is good enough.
Jill, I suggest that do your best to get on Plaquenil. You really don't want things to get worse. Even though you seem to be doing better, it can go downhill fast. I do think that Plaquenil slows our immune system down. I don't know how or how much, but I really think it does. The nice thing, is that if you have other autoimmune diseases that you haven't been diagnosed with yet, it can help with those too.
I know that Plaquenil has slowed down my progression and I'm so glad I'm on it. (even though things keep coming out of the woodwork recently)
Good luck with things, and let us know! :)
Good luck and I think you should push for the Plaquinel too! My ana is just speckled and symptoms pointed to sjogrens about 4 years ago so my Rheumy at the time started me as a 'trial' on Plaquinel and I actually felt a bit better immediately which is unusual but definitely by 6-9 months my fatique/arthritis/gastro probs/ were much bettter and flareups less frequent and in duration.
Never heard of the test also just the baseline and yearly eye exam for retinal damage. I just had to have my gallbladder removed and for some reason my Rheumy also wanted me off of the plaquinel a week before and 2 wks after along with my etolodac anti-inflammitory meds. I was very glad to get back on it before symptoms started reappearing again. :)
Definitely be an advocate for yourself and let your Rheumy know how you feel and your needs.
Good luck and hang in there.--Net
Just a reminder that Plaquenil doesn't slow the autoimmune attack on our body. It is a antiparasitic drug that has very strong anti-inflammatory action.
It has been the first line of treatment for RA for many years---along with the prednisone. Prednisone acts fast to decrease the symptoms/pain, etc of the autoimmune diseases and is usually given with the plaquenil.
It takes the plaquenil many months to kick in usually and the prednisone helps with the symptoms until the doc and the patient decide that the prednisone taper should start. As one tapers off the prednisone there shouldl not be an increase in symptoms if the plaquenil has kicked in. If the symptoms increase then the prednisone dosage is usually increased for another month- 2 months, etc whatever the doc decides and then the taper can be started again. Quite often at this time the taper can be continued as the plaquenil has kicked in and is taking care of the pain.
Many people have less pain and less fatigue with the plaquenil. My lungs seemed to have less thick mucus in them as in not as thick and maybe a little thinner. However, I haven'et noticed an increase in secretions of any significance. Just by virture of having less swelling in the mucus tissues of the lungs, throat, nasal passages, it may seem that the mucus is flowing better and it probably is. When the swelling is down in our mucus membranes we do feel bette Irish
Go to next page.
When we get to the point that we seem to have increasing symptoms and the plaquenil doesn't seem to be helping it is usually the time to start on the stronger medication such as imuran, methotrexate, cellcept, etc. These last three drugs (and there are more in this category) take time to kick in and the docs often continue the plaquenil. Some of our members have quit the plaquenil thinking that they didn't need it and in a couple of days or more they found themselves very, very miserable.
Most of them restarted the plaquenil as they found out that it was doing more for them then they realized. After the other medications have kicked in and there has been some physical improvement the person can then try stopping the plaquenil again.
The methotrexate, imuran, cellcept are some of the drugs that a person has to try and fail prior to even being considered for the Rituxan. This is not a bad thing. Many , many people are doing very well on these oral drugs Remember that killing off the b-cells with the rituxan is not of minor insignificance. This is a big time event that has its consequences at times. We have to wait to be offered this drug before we can even think of making a decision to try it. Irish
I have been on both Plaquenil and Methotrexate for 5 years. One specific thing I can remember is about Methotrexate. I think I started it a little before Plaquenil. I was afraid to take "7" pills at one time (once a week) and wondered what on earth. Well, then I took my first dose of MTX and fast forward 6 days and it was the day before my second weekly dose of MTX was due. I began to wonder, and think....."I think I am feeling enough better to know I am." I indeed was feeling better after that first dose. I know it sounds goofey, but I had been so sick for so long that I think the "hit" of MTX was enough to do some good for my body and I could recognize it.
Although I've been on these two meds for 5 years, and others including Lyrica, my doc has never suggested I take stronger meds. I totally believe in her and know she would suggest if she believed it would help me, but I am probably at my best--which isn't very good most of the time. I know none of us feels as well as we wish we could. Lu8cy
Irish, Plaquenil does slow the autoimmune attack. It is a DMARD (disease modifying anti-rheumatic drug). It does reduce the inflammation but it also slows the disease. There are studies that have shown the Plaquenil can prevent and slow down kidney disease in Lupus. It's an anti-malaria drug and it is an anti-inflammatory. It does not actually suppress the immune system, but it modifies it at a cellular level.
Gold55.
I see you use Voltaren gel to your toes.
I had painful toes on my right foot at the beginning of my downward spiral towards the sjogrens diagnosis.
Do toes on both feet get affected? Is yours on and off?
Mine seems to mostly attack my right foot toes and it is a deep burning stabbing pain that shows up first thing in morning, after sitting/laying too long and getting up.
Do you have good success with the Voltaren gel?
eye2dry
Thank you Mshistory, Net, Doxie, Matilda and Irish for your responses to my issues. I learn from every post I read on this forum.
@eye2dry.....my feet are what led to my (two) diagnoses...., not dryness, not fatigue...both my big toe joints are affected but I have nerve pain coming from all the toes. On some days it was very hard to walk and I have given up all shoes except my KSwiss sneakers and slippers! Thank goodness I'm in medical where all patient care staff wear walking shoes!! I'm in a desk most of the time but I still see clinical studies patients so I wear comfortable clothes and a white jacket and my KSwiss, thank the Lord!!!
My rheumie initially gave me a small bottle of Pennsaid drops for my toe joints. I think the copay on the drops is ~$80.00....I was lucky to get this freebie on my first visit. It really helps my feet when my big toe joints are aching so I thought I'd go the cheaper route and get the Voltaren gel. This should be more like a $20.00 or $30.00 copay. I haven't picked it up but the Pharmacy asst said she uses it on her knees and it works fast and takes the pain away. I expect it to work like the Pennsaid drops...you only need 2-3 drops or dabs of gel. I sure wish it helped muscle pain....I may try a bit on my thigh and left wrist when they act up. I hope this helps. Once I get it in my hands I will report back!
Take care everyone! Ohhhhh.... I seem to get relief from peripheral neuropathy pain throughout my day being on Effexor 75 XR. I had read all the dryness stories from Cymbalta so I opted to go on the Effexor because it was an extended release capsule. I must say I am more comfortable than I was prior to taking it.
Did you guys recently read about Jack Osbourne being diagnosed with MS?? Sooo sad he's in his 20's and just had a baby. I don't know but it seems like there's more autoimmune being diagnosed than every before. I could never do what you guys do at your young age and with little kids, etc. My hat goes off to all of you with so much responsibility and then handling a disease and some with diseases of the spouse and kids!!! You amaze me daily!
Jill
I totally agree where would we all be without each other and comments and inputs :)
Thanks for the tips about the toe and feet meds since I just seem to be starting with all that fun stuff too. Seems to be my big toe joint mostly on the right foot and I am also having burning through the tops of feet, tendons?--sjogrens?osteo? both?
Keep in touch.-Net
Net, you sound so much like my story. I started with the right big toe joint about 10 years ago. It acted up now and then and I'd take Ibuprofen and rest it for a day and I was good to go!! Not until a year ago did my left big toe joint act up which sent me into the doctors office. I also had fullness in my right hand with some cysts and nodules appearing on my thumb joints and the end joints of my right fingers. This is when they ran all tests which came back perfect except the immunology panel >:( Ever since then the type of pain, arthritis, whatever you want to call it has been different from the 10 years of pain I experienced during a flareup in my right foot! Same thing with my hand....it's more of an inflammatory type pain, nerve pain and this time I don't seem to get a reprieve from it as before! I also have boney growths in my big toe joints which makes me have to buy a half a size bigger shoe. I've got to be careful not to buy anything that rubs on the joints....they are painful to touch. I read that article of Elaine Moore's which states SJS sufferers can end up with erosive osteo in the hands and feet and I felt that's exactly what's happening to me. My rheumies don't see it because they are still waiting for me to acquire the bone dry mouth and eyes of SJS!!!! :o I think I've had SJS if not all of my life, for at least 25 years!
Isn't it sad how we may know best about what course our disease is taking yet we don't have the power to prescribe meds or order tests!! I would have put myself on Plaquenil at this recent visit however, now my rheumie wants to wait another six months.....why??? perhaps to see my toe joints grow another shoe size so I'll have to buy all new shoes again!!!! :( or maybe she's waiting for my fingers to match my toe joints??!! It's frustrating to say the least ???
I am supposed to keep in touch with my Rheumy about this toe stuff, he is talking an mri to look for erosion like you said. Sjogrens or not they sound like they should be checking you for that also and guess what ?....I think the treatment is plaquinel and similar drugs that we take for sjogrens. I am back to work after 3 wks off of a bad arthritis flareup and gallbladder removal, related? Feeling pretty good on my feet but mostly that right one and the top of my foot just burns all the way to that bad toe. I had a joint injection 3 weeks ago so I don't know if that toe will come back to haunt me soon. Push Push Push those Dr.s , you know your own body. Good Luck :)