Anti Inflam

[queentutti]

I am on Imuran but also need anti inflams for the pain, what works for everyone else? I have been on quite a few and had no joy apart from cox 2 ones that I cant have. I am currently on piroxicam but they dont do anything.

[raggedyann1]

Queentutti,

Over the years I have taken a variety of anti-inflamms/nsaids. Currently I have been on mobic for 3 years now and it has been quite good for me. We of course are all different when it comes to nsaids. I would ask your doctor for trials on other nsaids till you find one that works for you. Usually it takes 2 weeks to know for sure if a particular med will work for you or not.


Take care,
Karen

[Lily]

Hi,

Naprosyn 1000mg works well for me.

love
Lily

[queentutti]

What about methotrexate with the azathioprine? I have had naprosyn, diclofenac, nabutemone etc

[kellykay]

I take Mobic and it seems to help for the most part.. except in a bad flare

[raggedyann1]

Queentutti,

At one point we tried methotrexate with aza but I had horrible nausea with the aza. Now I take methotrexate and arava and 18 other meds. Arava is an immune suppressor designed for RA but has also been successful with lupus patients with joint pain.

Take care,
Karen

[jhmom]

Hi Queentutti,

I too am on Imuran and in desperate need of an NSAID that works! In the past I have tried a few, they all have worked a little but I have not been pain free at all, then if I think they aren't working and I go off them for a few days the pain is a lot worse so I know they work a little, but I would like something better.

Should we be 100% pain free while on all of our meds? I plan on talking it over with my rheumy, my pain is getting worse and moving to my feet & ankles.

Anyway, I do hope you find one that works GREAT for you!

[chantal]

naproxin is the best (for me) when i started it like 7 years ago it was the greatest drug ever it made a huge difference and my doctor suggested switching me to something else years ago (because of the side effects of long term use) but i said NO NO NO this stuff is the only thing that lets me move my butt

[Lily]

Hi,

Stacey, no I dont think expecting to be pain free altogether is realistic for us

I take Naprosyn - could not get out of bed without it, Imuran, Plaqenil but I still have pain and take codeine and a muscle relaxer every night as well. The days my pain is not controlled during the day with Naprosyn I take the codeine and muscle relaxer during the day as well. I get away with that combo so far and its uncommon for me to have to take the codeine during the day for more than a few days at a time. The longer I hang out though the more codeine it takes to get me back to a tolerable pain level. If I hit it fast then a few days does the trick. It's taken me a while to be able to predict these things though, but hopefully I've got it down pat now!

love
Lily

[Pollyanna]

Hi Queentutti,

I take Mobic (nsaid) as well as Methotrexate, Plaquenil, Ultracet (for pain), and prednisone for joint and pain issues. I have flexeril for muscle pain as needed and darvocet as needed as well. Also, some kind of pain patches that I've never used - not sure what they are! Nothing, but nothering has ever worked as well for me as Vioxx! I really miss that med!

I see the rheumy tomorrow, and we are planning to evaluate how well the metho is working for me and then decide if we will add the Arava back into the mix. We shall see.

I haven't had a pain free day since 1987. Wouldn't know what to do if I had another one!


All my best to you, Pollyanna

[raggedyann1]

Stacie,

The only time I have been pain free since I was diagnosed in 1988 was during my long remission.
I am on many medications now to control my pain - both disease modifieres, narcotic pain meds and other meds that have pain relieving qualities of one kind or another.

During one of my discussions with the nurse practioner at the pain clinic I go to, was what is fair to expect.
Normally they shoot for a level 4 out of 10 for their pain patients to be at. Unfortunately for me that is unrealistic - so we are glad the days I stay at 6 - 6.5. The purpose of nsaids and other pain meds are to help control the pain and keep a patients quality of life acceptable. To expect to be pain free is totally unrealistic according to the nurse practioner. The question often asked is how much is your pain interfering with your ability to function. Does your pain keep you from cooking meals for your family? Does it keep you from dressing yourself and ..........

I remember the first 6 years or so that I was sick I was able to work most of the time and had to take the tylenol with codeine in fluctuating quantities per day. Comparing that to the pain I live with now I would say that with the tyl w /codiene my pain levels were at a 3 or 4 maybe on bad days. It was annoying but rarely interfered with my ability to work, take care of my home and enjoy my life.

I have no idea how bad your pain is and truly hope it is not real severe. If your pain is getting gradually worse then it may be time to reasses your medications and what changes might be in store. Or ask to add a narcotic pain med to help ease your pain.

Take care,
Karen

[jhmom]

Lily-- I figured pain free was too much to ask for but I do plan on talking to my doctor about it in July, if I can wait that long. Maybe she will consider increasing the Imuran, as I only take 50mg and that dose helps my GI probs. I wonder if the increase would help the joint pain? Or maybe another med, she already increased my muscle relaxer that I take at night (Flexerill) and that helps me sleep a little better and not be so stiff in the morning. I am confident she will do whatever she can in order to help my pain.


Karen-- At one of my appts with my rheumy I had mentioned remission to her, she looked at me kinda sadly and told me only 3% of people go into remission, so you were very lucky (blessed) for those number of years (I am sure you already know that) . During my most recent visit we talked a little about my increased pain in my hand and lower back and she mentioned an injection, I really don't want to do that IF I don't have to, ya know? The thought of a needle in my back turns my stomach . She did give me a Rx for a "patch" which last for 12 hours. You can cut them to size for different areas, so maybe I will try that too.

I don't consider most of my pain to be "severe" however it does keep me from cooking, cleaning, etc..... well between the pain and fatigue I am wiped out. The pain in my hand does get severe in my opinion (probably a 6-7), the pain radiates up my arm and I am unable to use it. I have also noticed more problems with my feet. I am in the process of replacing some of my shoes with more comfortable ones per the docs advice, maybe that will help too.

Thankfully I am still able to work a full time job but by the time I get home my spoons are gone and my joints especially my hand are done for the day. Now last week while I was on vacation I was able to get more accomplished around the house, cooking, cleaning, etc.

Thank you for sharing your experiences, I appreciate it!

[Lily]

Hi Stacie,

Yes see what she thinks, for me though I dont think Imuran works on joint pain very well and I've heard others say that too. I still need all the other stuff.

Sending hugs, you have a right to be functioning as best you possibly can. I wonder if some Methotrexate added to you mix might do the trick as far as joints go. Its not unheard of combining the two sometimes. Karen would know more.

love
Lily

[raggedyann1]

Stacie,

If the pain in your arm is going that high that is inhibiting your quality of life. I have had steroid injections before and although the injection is no fun the relief from pain is worth it. The last 3 years I have only needed injections in my right hip for bursitis but I seem to remember having an injection in my right wrist in the early 90's. There are lidocaine patches available that work pretty well for back pain. They are quite large and don't work for feet and hands. You wear them 12 hours on and 12 hours off , they basically numb the pain in the area they are covering. That is an alternative that maybe she would call in for you to try before July arrives. There is also a lidocaine ointment which I use on my feet, hands and shoulders. I find it helpful on the days my pain meds aren't doing a good job - like today. Other thing to think about is the pain really radiating from wrist up or is it starting in your shoulder down to the wrist and then back up. I use the lidocaine ointment on my shoulders and then anywhere else that hurts when i pinch from the shoulder down to my wrist. I also like to use it on my neck when that area hurts if I press it. That is also rx like the patches are.

while imuran is not the first med used for joint pain it is supposed to help with joint pain. I think the success rate with joint pain is not as high as methotrexate is.

Get some help now, no point being miserable for 3 more months.

Karen

[kimb]

I have been taking Methotrexate for 9 weeks now, with a Prednisone dose of 15mg/daily. I have been feeling great!
In the past I have been on as much as 100mg Prednisone. Tried Imuran-I had severe vomiting and diarrhea, tried Hydroxychloroquine-got head to toe hives. I can only take Tylenol for pain, Ibuprofin/excedrin type meds make me vomit. And I am also on anti-coagulants.
I dont have any joint pain now. My main battle this last year has been inflammation of the lining of the heart/lung. Im sure I will have some muscle/joint pain as my prednisone gets lower and lower.
We are all different, finding the right mix of meds for our needs/tolerance is the key.
Good luck~!kimb

[jhmom]

Lily, Now that you say that I remember my doc telling me that Methotrexate worked better on joint pain but she was more concerned with my constant GI problems and that is why she chose Imuran. I didn't realize you could take both, maybe that is an option.

Karen, I have had an injection in my hand before not for arthritis but because I had a cyst, it hurt but I think I could handle a shot in the hand better than in my back . I am not sure what kind of patches she gave me but I do know you can cut them to any size and use them anywhere, I think I will get those asap and see if it helps. Where do you get the lidocaine ointment, is it a Rx or OTC? The pain starts in my hand and runs up my arm, I thought at one point it could be Carpel tunnel but I've researched it and my symptoms don't match, it doesn't go numb and I dont have pain in the palm of my hand!?!?!?

[raggedyann1]

STacie,

the patches you are talking about are the lidoderm patches. The lidocaine ointment is rx also.

My wrist pain is not carpal tunnel either it is partly lupus and partly fibromyalgia. I do find the wrist braces are helpful some of the time but do better with my ointment mixture which I mostly use in the neck, shoulder and upper arm and it relieves all the way to my fingers.

Take care,
Karen

[jhmom]

Karen for all of your help, I really appreicate it!

[dawn felicity]

Hi all,
I take ketoprofen along with other meds this seems to work for me usually......but I am having problems with my legs and its not touching me.......going for a review shortly.
Dawn