I was diagnosed with Sjogrens, RA, and Renaud's last August. At that time I started plaquenil, and in October my rheumy added methotrexate. For about the last month I have had increased pain in mainly one arm...it's truly hard to pinpoint where exactly it's coming from, basically my whole arm aches. (However I do get a sharp twinge of pain in my elbow when I rotate my arm a certain way, so I'm assuming there's some inflammation there). So a couple of questions...I'm assuming this is what they call a flare. I have not had this level of pain since last summer which initially led me to seek medical attention, and then things calmed down (actually even before I started on the meds). So for the last month, I have to take Aleve around the clock to manage the pain. How long should I take 2 aleve twice per day? I was at the rheumy's office last week for my daughter's apt, and mentioned my pain, and she gave me a shot of some type of steroid, but that didn't seem to help. My main question here is: should I be taking the methotrexate and plaquenil since they really don't seem to be making a difference? Should I always expect to have some level of pain, or is it possible to be pain free? It's not debilitating pain by any means, but just the constant awareness that I'm aching. Please give me your thoughts! Stephanie
Hi StephO!
Sorry you have all these things to deal with. :(
First, PLEASE check with your doc on taking so much Aleve. Methotrexate can be quite hard on your liver, and generally it's not a great idea to take lots of NSAID's while you are on it.
As for the arm pain, personally I'd want to get a firm diagnosis before changing any medications. It could be autoimmune-related, or it could be something totally unrelated - a pinched nerve, etc. You are already on lots of anti-inflammatory agents PLUS had a steroid shot, so it may be a mechanical problem and have nothing to do with inflammation - or the shot may have been in the wrong place, etc. I would make an appointment with my GP and say "my arm hurts!" and take it from there. Not everything that goes wrong will be related to the Sjogren's, etc., though of course it's important to keep it in mind when things DO go wrong...
As for the pain level, I'd say that yes most of us do have symptoms even while on medications. None of the medications are perfect - but for many of us they do significantly improve out quality of life. Sometimes you're not aware of how much they are helping until you try going off them - but I wouldn't do that without talking to my doctor about it.
You might also look into some "alternative" options, if you are so-inclined....these forums have lots of good info on various things people have tried and had success with. As with standard medications, some things work for some people and not for others - but it might be worth a try if you are out of standard medical options and still looking for improvement. I have had great results (particularly for fatigue and body pain) with a gluten-, dairy-, and soy-free diet that is very low in carbs/grains, and I also use turmeric and ginger for pain relief, as well as some other supplements that help with various things. Others have had great luck with different kind of diets, acupuncture, massage, etc....you don't know what will help until you try.
I hope you find some answers and relief soon!
Hi StephO- sorry to hear about your ongoing symptoms. I agree with Sleepy - you should check with your rheumy about taking aleve all the time or quite a bit while on plaquenil and methotrexate due to increased risk of liver problems with both medications.
Unfortunately I also tend to agree with Sleepy about having some type of pain or discomfort with most autoimmune diseases - some get better relief than others with certain medications, but many of us deal with aches and pains daily. How to manage them best for you is the key - it may be trial and error for you to determine what medications and over the counter supplements and remedies you can use that help you the most. Maybe try keeping a journal with medications you are using, if they seem to help, for how long, etc. BUT ALWAYS check with your rheumatologist or PCP before starting any new medications or supplements to be certain they will not cause adverse reactions with the medications you are already on.
I am not certain about the arm pain - I would want to get a diagnosis on the arm pain as well - it could potentially be autoimmune related or it could be something completely different that could require physical therapy or some type of medication that you are not on and may not have access to without a prescription.
Hoping you can find some relief and some answers soon.
Sending positive thoughts your way.
Kim
I have to agree with the others about taking Aleve, Naprosyn, Ibuprofen, etc. as these meds are usually not good to take or are contraindicated when taking other anti-inflammatories such as Plaquenil and any immunosuppresant such as methotrexate, imuran, cellcept.
People think that the OTC meds are safe, but the NASAIDS, while good for inflammation, can have serious side effects and need to be approved by your doc. The dosage also needs to be assessed Tylenol is also another good OTC med that needs to be approved and dosage assessed by a doctor. There is no safe drug.
Also, it could be that you are having some inflammatory issues with your tendons which is very common in Sjogrens. I would suggest that you see a doc and have this arm pain assessed. Ulner nerve irritation can cause a lot of pain--this is also known as tennis elbow. I have had it in both elbows off and on for years and it is miserable. I bought an elbow brace for each elbow years ago at Walmart and that really helped to mobilize the elbow enough to calm down the pain. I would check with your doctor though as the first time I had the tennis elbow it was so bad that they had to give me Indocin for 5 days or do. Good luck. Irish
I was wondering if someone could help me., I get swollen glands all over..mainly neck and head (sore) tired. dry hair brittle and tired all the time muscle aches and weakness. Headaches like no other. hair loss on and off....I have tested positive for ANA, RNA, Sjorgens SSB and Antithyroidglobulin.....My normal thryoid levels are always normal but on low side.... Vitamin D is low and my iron binding. I have to see a rheumotolgist every 3 months to have kindness and liver checked nut have not yet been diagnosed so I am so confused and lately I am messing up my words and having eye problems on and off. I feel like I am going crazy! Sorry I posted here I am new and couldnt figure out how to post some where else...
THANKS FOR ANY HELP OR ADVICE and also take mobic daily till gave me an ulcer
Thanks for the insight...the Rheumatologist is aware that I'm taking aleve and she didn't seem to have a problem with it. That seemed a little unusual to me because of the affect these drugs has on the liver. I think I need to just learn to live with some pain, and only take otc meds when I'm in dire pain. It's just hard to know what's normal and what is not, so it is so nice to have this venue to ask questions from people with experience. Thank you all for your insight, I truly appreciate it! I do also agree with the tendonitis theory, I feel like the pain is not only in the joint, it radiates through both arms. I'll have to talk to her about this. Thanks again. Stephanie :)
Hey there JM...welcome (well...nothing else to say when first greeting someone....sure you don't want to be welcomed here!!!)
I am fairly new...but just wait...everyone will find you. If you don't receive a lot (A LOT) of responses within 48 hours, repost under a New Topic or one of the Just Diagnosed types of threads on the board.
My swollen glands were "under" my ear....mostly the parotid glands. Did have some submandibular infections too. Oh ..these are your salivary glands. Since you are saying neck, it must be from the two sets under the parotids. And they are just uncomfortable not painful. You can put a warm (emphasis on warm) compress on the area for a bit of relief. It's hard to get comfortable and hard to sleep. You will have to find an ENT (Otolaryngologist) for help. That's what the rheumatologist means when he refers to "managing your symptoms." It sounds as if you may need an ophthalmologist as well. Remember, I am not a doctor, and am trying to respond to your questions/comments/concerns. BTW: so many people complain about having to wait weeks for a doctor, tell the offices when you call you are SjS positive and are in pain. Do not let them convince you to go to the emergency room however just to see the dr. But tell them you really need help. Also, your rheumatologist might be able to refer you and get you in sooner. I have never done this...but as stated, so many suffer for so long for so little relief. I am old and had all my "ologists" and so was established. I only waited three weeks for my initial appointment. I had been told it would be about 2 or 3 months. You know, these rheumatologists need a Sjogren's Liason working in their offices. Good luck dear.
Also, I have had an NSAID ulcer too. They heal nicely enough.
I am going to let others reply now because they are so knowledgeable and gracious.
Thank you so much...I have not yet learned how to post where every one can view it.
This has been a series of things that started 1 1/2 yrs ago from chest pain and not being able to breath when walking
failing a stress test and then passing the echo...to just extreme tiredness and Its funny as i can remember always
having to take a drink with me in the car as I am always thisrty. I have had a doc tell me she thinks I have lymphoma cause the glands
and scared me, (no lymphoma) to neurologist for my migraines, to regular doc for hair loss and then endocronolgist for checking my vitamin D which is 21 even after being on Vitamin d for 5 months it will not raise.
This journey is been a rough one, as I am sure my family just thinks I am crazy and I feel like it sometimes.
Just in the last 3 months I have had a rsh all over my elbows that I was told was Psorasis and by body feels like its not 39 more like 80
I have 4 kids so I have to keep on just doing things. I have so many ?s like if you test positive for Sjorgens SSB does it mean you have it?
What could RNA and ANA postive be? what other autoimmune. The cold has caused me to have 2-3 upper reps. infections just in the last 4 months
I feel like an old beat up car, i just want to get put back together
I really do appreciate anyones help and advice and I am sorry for anyone going through any of this