How long do I wait?

By vicreads Thursday, November 20, 2008

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This is my first post, but I've been reading posts and news on this site for a couple of months. I'm very glad I found this site, I don't feel so alone. I need to ask for some advise. I was diagnosed about 1 1/2 years ago. I'm on METHOTREXATE, HYDROXYCHLOROQUINE, PREDNISONE , FOLIC ACID, SALSALATE, and Zantac. All that just for my RA. I'm still having flares when I go below 4mg of prednisone per day. We recently tried to add SULFAZINE EC, but I had to discontinue it as I had constant headaches and an upset stomach. When I'm having pain I also end up taking 1/2-1 Vicodin. It seems like a lot of medications, and yet my rhumy has not suggested any of the biologics. Is this something I should be pushing with him? Has anyone else been kept this long on the older, tried/true drugs? I live in CO, and with the coming of fall and winter, I'm feeling the change in weather throughout my body. It's not a hard flare, but the dull pain and stiffness is there. Is this just something I have to learn to live with, or should I be more agressive in asking for help? I can call my dr. office and talk to the nurse anytime, and they have been responsive, but usually end up having me do a prednisone "burst", then I have to come down to the lower dose slowly. My daughter is getting mariied this spring in Costa Rica, and I want to be able to enjoy this happy time, so I need to get this under control if possible. Any suggestions on what my next step should be would be appreciated.

Comments (9) | Add comment

Anonymous

11/20/08 9:57pm

I was put on methotrexate, folic acid and prednisone for RA. The methotrexate made me so nauseous, especially at night when asleep, I vomited and almost choked to death. I told my Rheumatologist and she then prescribed Azathioprene along with the Prednisone. Every month that I saw her, she increased my dosage by one more pill. Enough so that I got so very ill and I suffered for 5 weeks with diarrhea. I went off the medications altogether and will take my chances without it. My hand is still swollen and I cannot bend my middle finger. My stomach is so much better now. Any suggestions as to what I should take for RA??

Eva

11/25/08 1:40pm

Speak to your rheumatologist about trying a weekly injection on Enbrel (a TNF blocker) in conjunction with 1 daily capsule of Celebrex (anti-inflammatory that is easy on the stomach). I have RA for 2-1/2 years and I find that this works the best.

In addition to these meds, I take 2 Omega3 capsules 2x a day, and I am on a nightshade free regimen. Basically, no tomatoes, potatoes (sweet potatoes ok), eggplant, peppers (black pepper ok.) This includes paprika, cayenne... No products with these spices, like hot dogs, etc... Be careful with labels that list "spices". If they are not specifically listed, you can bet that they have nightshades in them.

Best of luck and be well.

bucko27

11/21/08 9:34pm

Vicreads- I am sorry to hear that you are in pain and suffering. I too find winter to be a difficult time. As for your meds, I am wondering why you haven't been started on a biologic. You need to treat your RA aggressively to prevent joint damage and the biologics can really help. I have been taking Enbrel along with my methotrexate since 2003 and it has been great. Make some noise to your doc and get going on a biologic.Good luck!

Steve

Galen Gilchrist

11/24/08 1:01pm

I am Galen from Vermont and I sympathize with your plight with RA. It is not an easy disease to live with nor to treat. It takes a lot of time to find the right combination of drugs that will work for you.

I have had RA for over 40 years. I have been on just about every medication including Methotrexate and prednisone. I am presently on Humaria and have been feeling pretty good. I take 5mg of prednisone and notice a difference if I do not take it. I took the Methotrexate until I got the cough that they talk about and had to go off of it. Along with the Humaria I am also on Imuran and this combination along with the slight dose of prednisone is helping me immensely.

Sometimes you have to be aggressive with your doctor if you feel you want to try another drug. I have often fought with mine and now we understand each other.

The winter is not a pleasant time to have this disease. I can predict a snowstorm two days in advance. Keep the faith and try not to let this disease get you down.

vicreads

11/24/08 2:21pm

Thanks for the information. I sympathize with feeling the storms two days in advance, as it hits me that way, too.

I think I will get in touch with my doctor and get more aggressive about my treatments, as I really want to be able to enjoy all the good things coming up in my life. Thanks for taking the time to reply.

Margie

11/24/08 4:46pm

Hi, I am in a agreement with everyone eles, I also take Humra,Methotrexate, Lyric,

prednisone,and Lorcet /10/650 and the Folic Acid. I know this sounds like a lot of med,but I rather be on them than hurting. The prednisone is really for my Addison disease. I can also tell you when it is going to turn real cold,

Have a nice Thanksgiving & a merry Christmas

Kat

1/20/09 10:49pm

Hi Galen,

I'm also from VT and dealing with RA. I live in Chittenden County, do you?

I was diagnosed in May of 2007 and have been on several meds, but not the biologics. Started out on Plaquenil and couldn't tolerate it, then took Sulfasalazine, but had to discontinue it because I wound up with Lichen Planus. I started taking Methotrexate, 10mgs per week, last August. I was doing okay up until last week and am now on a weeks worth of prednisone to help with the flare-up in my shoulder. The first few days after starting the prednisone I felt better, but tonight my shoulder is starting to get sore again so I'm not sure if it's working or not.

I'm getting really tired of this disease and I haven't had it as long as you! How do you get through the days that are so painful? It's bad enough that there is no cure for this, but I'd love to have something that helps with the chronic pain.

Any suggestions you might have would be appreciated!

Kat

Galen Gilchrist

1/21/09 12:21pm

Hi Kat: It was good to hear that you are also from Vermont. I live down in Windham County in Westminster.

I was on Plaquenil and it worked fine, but then my doctor put me on Methotrexate which also worked well until I got the cough they talk about, but when you flare on Methotrexate it seems really bad. How much prednisone are you taking? That should help you through any flare. It has always helped me. I am now on Humaria and Imuran which is an older drug, but I am having a flare in my elbow. It is funny, you do not realize how much you need your elbows and shoulders and wrists until you go into a flare. The doctor injected my elbow the other day and it is beginning to feel better. Ask your doctor if he/she can inject your shoulder with cortisone. It really helps.

I am sorry to hear that you have this disease, but I have learned to try to remember my good days when I am not feeling well. It is a difficult disease to live with, unfortunately, as you just never know what tomorrow is going to bring. Take care and keep in touch. Galen

Kat

1/22/09 3:05pm

Hi Galen,

Thank you for responding! I was put on four 5mg prednisone tablets for 2 days, then three 5mg tabs for 2 days, then 2 5mg tabs for 2 days, and finally one 5mg tab for each of the last 2 days. I'm feeling better today (still on the 2 tabs per day), but I have to go back to work this weekend and am scared that I may have another flare (hope not). It's just so hard to plan your life around this disease! I'm always afraid that I will plan something and then have to cancel because I'm not feeling well. Also afraid that if I have to cancel doing things with friends too many times that they'll stop asking (couldn't blame them though). Oh well, I'll just have to keep plugging away and look forward to the good days!

Take care,

Kat

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