Are there any medication options left for me?

My rheumy told me to stop the imuran. The stomach pain was becoming unbearable. My joints are hurting so terribly. I think the arthritis has also moved into my shoulders now. My hips are aching so bad also with the ache traveling down my back. My back is a disaster and the a arthritis in my hands is acting up. Basically, everything huts…bad!

I go back to see him on Wednesday. If he just increases my pred n nothing else I’m going to flip! So far, we have tried:

Plaquenil-changed when I developed sun rash
Aralen-rheumy didn’t feel it was helping and I was maxed out
Cellcept- soo tired felt like I had the flu
Imuran- stomach pain

Now what? I’m really getting frustrated. Is there anything that I will be able to tolerate that will help me?

What about biologics? Humaria, embrel?

Call your dr and get a high dose of prednisone to get threw this…also pain meds…then try whatever you want

first you need to get x rays and find out cause exactly of your pain. Your shoulders can me from arthritis to rotor cuff problems. Same is true with hips ...can be same as your back or like me another autoimmune disease in your spine and hips...if you find out sooner rather than later the cause they can slow down the process so you will have less pain.

So they need to do tests, x ray, scans, mri etc first. Don't accept they saying oh it is just your arthritis? well what kind and why is it moving into shoulders and would it hurt to just make sure it is not anything else...so assert yourself on this.

I say this because how they treat you depending on the cause can be very different. Like shoulder pain...if RA you should be in PT doing exercises so you do not lose that joint as shoulder joint if not used is one of the fastest to be lost. It can be rotator cuff issues which might need surgery. No amount of PT will repair it. I have that in one shoulder and Ra in other and i put off surgery by stretches and not doing things i now know will continue to damage that joint. Shoveling snow is bad for example.

Same can be true about your back and hips. Almost all adults grow spurs in their spine and get some OA in spine as they age..so is a spur hitting nerve in your back which a TENs unit can completely help you along with some acupuncture plus losing any extra weight. I am surprised how losing weight can really help so much with joint pain. I still need to lose more but it helps every ten lbs i lose...it is noticeably better.

If you see pain specialist, they will push what they do, narcotics and injections. Both have serious negative issues. Injections in the spine, i had no idea how serious the negative side effects can be...lets say that any pain you have now will be nothing from what others say who had injections go very wrong. Some the doctor or PA should be using x ray or ultrasound to hit the correct spot or very negative things can happen, others it is a lot safer stuff and as long as they have a lot of experience hitting it in your shoulder joint for example odds are it will be okay. BUT just do not accept how easy it is etc....and always ask how many they have done. You do not want to be the guinea pig.

Narcotic did literally i felt turned my life around...for first few years. Than slowly my brain or my head i just did not have desire to do things i done all my life that gave me great joy. Pain doctors basically ignored my questions...said depression but i have had depression did not feel like it. Well, thankfully some of my other doctors said, this is why they are so strongly against long term use of narcotics, it affects people's brain chemistry. I thought oh they are just against them but i started reading and hate to say it but they are correct. It really upsets me how pain doc are not honest about this when study after study shows long term use does affect brain chemistry not just in dependency on them but in other ways that do affect your ability to feel joy or happiness.

SOO what other options...there are anti inflammatories if you have not tried at least a few already...and might need to try more...i found for me motrin did work wonderfully...i did not eat and messed up my stomach. my own fault there..youth thinking i could get away with not eating every time.

Acupuncture has shown to work in many kinds of pain cases it just depends a lot on person giving you the treatment..find a legit one, licensed and has experience with your kind of pain. Acupressure and massage also helps greatly if you can afford them. TENS units are also very helpful in hips and spine areas of pain. I use it and really does help so much i been able to reduce narcotic drugs. Just go through the patch things so fast lol!! Epsom salts baths at night with heating pad or throw blanket, electric blanket can help me through most nights along with Tens on my hips and shoulders.

I recently read of product that should work more than twice as well as epsom salt bath in the bath, natural with pain. But i need to find that article...had bunch of sick pets and myself when i read it so just locating it...medscape i think had it for sure.

There are other body works you might also try, plus swimming in warm water, acupressure on your feet can feel so good all over..reki and just so many others just be ready to stop if if they are causing more pain. Plus cost of all these non medical services well many of us cannot afford it. i know i cannot afford a lot of massage work. even at reduce prices but it sure does help when i do get it.

I also think it does not help to go see a either GP or MD , etc who is open to alternative pain treatments and will prescribe them or naturopath. Many of the oils and other tinctures can and do help in small areas or specific. EMU oil for years now has shown to reduce inflammation and when it first was offered that i knew about in early 90's very small vial was over twenty dollars now i can buy huge one at reasonable price and it really does help with pain too...same rescue remedy if you are flaring and just need to get like through grocery shopping or finish work up for the day. Plus now you can get it without alcohol if you like but i have had so many people amazed at how RR works including myself! Plus works on pets as well.

I also join Pain sites and non profit organizations online as they are great resource places for non narcotic ideas and if you are using them how to do so as safely as possible....like today medscape came out with how Docs are mixing benzo, relax drugs like xanax with narcotic pain meds...my first pain doctor told me that it is deadly combination and should never be prescribed together. Kills people regularly. But more and more doctors are so why? it was interesting read...it sounds like doctors just are caving in to their patients. Yet we hear all the time how so many doctors will not prescribe either too... oh well

just do your homework on drugs if you are going either of those routes or others that can be dangerous.

being in pain constantly is wearing and just not fun....i get it totally and hope i given you some options that might help you out even tonight if you go to your local drug store! Medscape is excellent place to get information for pain and other health issues you might have..i really hope you find a solution so you can get bit of relief.

One of the worst things abut this disease is that medications are limited and all have side effects You do have to make a choice whether the side effects or the disease is worse. Most side effects of drugs will lessen over time and often there are medications to help with the adverse effects of the drugs. Not sure if you are on Plaquenil or not but this drug helps to lessen the severity of symptoms I also get a sun rash but my solution was to stay out of the sun which you should do anyway because flares can be triggered with sunlight. Prednisone is nasty but IMO is not as nasty as the illness so I take and learn to cope with the side effects. Not being in severe pain and bedridden is worth it to me. And much of what siskiyousis says is valuable- not all pain is due to the illness and even if so there are things that can be done to lessen the symptoms But one thing is for sure there is nothing you can do to make all this go away- changes in lifestyle and medications are in the cards for your future.

First off, it sounds like you need a new doctor as no one medicine works alone here. I’m on all kinds. Plus with Lupus and with the meds we take, we are to stay out of the sun and use sunblock which should halt the rash to plaquenil. I’m currently also taking the new lupus infusion medication Benlysta and it has made a huge difference in joint pain and fatigue. I’m walking again. Now we will start tapering off of the prednisone. I’m also taking plaquenil and methotrexate too. I wish you tons of luck and hope they can get your lupus under control soon. Oh, and pain meds are also a must!

My rheumy has put me on Actemra. Very effective for joint pain. The only problem is that my insurance gave them a ridiculously hard time about covering it as it’s pretty expensive…

You still have quite a few options left. As Siskiyousis said you need to find out exactly what is causing your pain and don’t automatically assume it’s just from lupus. As far as the plaquenil goes, sun rashes are just a part of lupus. We all have to avoid the sun. I’m surprised your doc didn’t tell you that. I’ve been on it 32 years and I know it has helped to keep the disease from getting worse. Doesn’t do much as far as pain relief but I’m still walking without assistance when the docs had predicted I would be in a wheelchair by 18. It generally takes a combination of drugs to get to a functional level. Right now I’m trying cellcept again because the rituxan didn’t really help. For example, I take plaquenil, trazodone, sertraline, provigil, norco as needed, as well as vitamins and probiotics. Also some medications you have to take for at least 6 weeks before your body will adjust to the side effects and start feeling better. There really isn’t a miracle drug. It takes time and experimentation to come up with a combo that helps with side effects you can tolerate. The one drug that always puts me in remission is cytoxan but my current rheumy won’t rx it because it can cause bladder cancer which my mom has had. I don’t really understand his reasoning since cellcept increases your risk of skin cancer and I live in CA and can’t avoid the sun with 3 boys playing sports. I keep meaning to ask about that but keep forgetting, brain fog is bad…lol Don’t give up, just keep trying to find a drug combo combined with alternative therapies and physical therapy that works for you. Gentle hugs, Annemarie

Hi! You sound as though you are Stressing out!! Take a day or two if you are able to settle your mind Alone??? I don’t think (well it sound like to me), you just need some days to relax , breath, and don’t think about Nothing, you maybe rushing and the meds are not working WITH your body and rejecting them! You get to give each new pill time to fet into your system., at least one to two weeks before saying it is not working! Find the time to settle down and get rid of stress factory’s…Beverly l.