Help! newby here.. med questions | Arthritis Information

I was diagnosed with RA in January 07-- I have it all over. I also have epilepsy, severe asthma, degenerative disc disease (two bulging discs with annular tears) and ??depression?? I am afraid my meds are making me sicker than the RA itself. I take am on several including methotrexate that I started taking on Wed. I got sick a few hours later and have had blisters in my mouth since then. I guess my question is--- are the side effects worth it?

Try taking Folic Acid, your dr shouldve suggested that too. It should help. Ive been taking Methotrexate on and off for wow almost 3 years now i think and i have just recently started on the injection form of it and it has helped me alot. some people cannot tolerate it though. Good luck and hope it helps for you.

Oh and Welcome !!

Yes, the folic acid should help with the blisters. He should give a prescription strength. The folic acid is essential.

Also, do get the depression treated. It's pretty common for people with chronic diseases to develop depression. They just started me on Cymbalta which also helps with pain and I love the difference it makes in me. For one thing, it makes me just feel a lot more calm.

The MTX will make you sick especially at first. Some people cannot tolerate it and most adjust to it. Try taking it on Saturday night so that it doesn't mess with your life so much. I was usually really tired on Saturday as the med left my system. And then most people get fatigue and sometimes stomach upset the day after.

But MTX is worth it since it treats the RA. You should give it a try. It does take several months to see much results. If your inflammation is bad, then the doctor might put you on a short dose of prednisone.

Also, if you have the bulging discs, are you seeing a pain specialist. My daughter has just one and it causes her terrible problems. She has to be on some really major drugs to cope with it and may have to have surgery.

I also see a pain specialist for my RA, Fibromylagia and neuropathy pain. This makes coping a lot easier.

Stacy Lynne,

I would certainly call your rheumatologist/doctor right away. I could not tolerate that drug either. In any form. I am on the current meds below. Not having any bad side effects. Will be switching to humira as the enbrel is no longer working well.

Hope you get better soon and have way less problems with your meds.

Lisa

I can't believe there's actually a drug called "soma". Hello, Brave New World. Welcome to the board! Sorry to hear you are having so many problems with the mtx. As Deanna said, folic acid is essential with the mtx. It prevents those mouth sores and helps ease some of the tummy side effects. You can also inject mtx which is an option if you find despite the side effects the mtx is working for you. Injecting takes away a lot of the side effects.

Soma is my muscle relaxer and is truly GREAT! Easy on the stomach and no 'hang-over' for the next day. The muscles in my neck frequently knot up so this at least solves some of the pain...

sptddog39179.6308449074Welcome, I'm rather new here myself. I've been taking MTX over the 15 years I've had RA. I've never had sores so I don't know why people get them. Was 4x2.5, now 6x2.5 weekly and yes I take Folic Acid every day (not just on the days I take the drug) I take 800mgs and am thinking that that may not be enough with the increased amount. Folic Acid is just a vitamin but apparently MTX destroys it in our body. Also I'm infused (by IV at the Dr;s. office). with Remicade and I take prednisone 2 1/2 per day, getting off of it! I'm so sorry you have so much pain, please keep writing, this is a great place to learn about this disease (and you can post anytime day or night!!) and usually someone will respond!! Better than email!! what a deal. sarah

Thank you all for the quick response!! I am still trying to accept the fact that I have RA I guess? In Oct 06- I felt as if I were going into a gran mal seizure but didn't- flu symptoms hit me immediately. Since Oct I have very little use of my arms due to muscle pain and weakness... they burn if I use them at all. I also had a burning in my head that moved. I was treated by my pcp with Cymbalta which did nothing. He then suggested physical therapy. I was told by the pt that the fascia? covering all of my muscles was in knots. My muscles, tendons everything was inflamed.

I then found a Rheumy who on day 1 daignosed me with RA (early Jan 07). He claimed due to my family history, and the visible changes in my hands that I had RA. My x-rays were ok? Except for my right hand and the severe straightening of my cervice spine. He also advised me that I had pretty severe asthma- I had no clue. He started me on Clinoril and Hydroxychloroquine and claimed in 2 weeks I would feel like new. HARDLY! My asthma worsened along with the pain ALL OVER. Then to Feldene- I started feeling a little better mid Feb for 1 week but my lungs were getting worse and so was my stomach which had never hurt before. Then I crashed again. Now he claims Methotrexate will work. I am terrified of these drugs! I did take the folic acid 2 days before... didnt help. I am about ready to quit taking any of them!!!! I still hurt when I take them but now I have several more issues due to side effects. My pain is not constant at the moment so I don't know what to do? Yes... I do need something for depression. I am 33... used to be very active. Did anyone have initial onset of RA due to stress?

By the way--- this is therapy in itself. I have had no one to talk to that knew how I felt... I feel better already.

Thanks so much!

Stacy

you should try taking the folic acid every day and see if that helps. what did the dr say about the folic acid?

I guess I am just really impatient. I did take the folic acid 48 hrs before and he wants me to take it every monday and the Methotrexate every Wed- 6 pills.

Hi there welcome to AI . I had to give up the MTX due to mouth ulcers ( and stomach problems) I took folic acid but it never helped.sometimes some people are more sensitive to meds than others, I was the same on sulphazalzine(?) gold injections and lefluminide.I am on humira now the side effects are tolerable ( rash and sinus and UTI's).

How long did you take the cymbalt for? It takes a good 6 weeks for it to kick in. There are so many other antidepressants out there too. You may have to try a few to find the one that you like best and works best for you. I have been on several. Currently on effexor and like it. It's my completely scientifically unsubstantiated belief (UNLESS you believe in the infection theory, which I sort of do) that asthma and RA are related. By the way, plaquenil (hydroxycloroquine) is an antimalarial drug which has antimicrobial qualities, so it's possible that your intitial symptom worsening when first taking them was a Jarisch-Herxheimer reaction. It's nothing to worry about---if that's indeed what it was, it means the drugs will eventually work if you keep taking them. Gimpy-a-gogo39179.6877777778have you thought about getting a second opinion on your treatment

I take 800 folic acid pills every day,

sarah

You just have to research these medications and determine at what point they are helping/not helping you. Some people do have a terrible time tolerating the meds. But without the meds, the RA progresses and can lead to permanent, disabling changes. You don't want that.

Some of your symptoms remind me of the criteria for Ankylosing Spondylitis, a spinal disorder that can make it hard to breathe. You are the right age for developing this disorder and you may want to do some research on it to see if it matches any of your symptoms.

Arthritis and Asthma are both inflammatory diseases. If arthritis affects your spine or rib cage, it can make harder to breathe over time.

Stacy,

Until the folic acid starts helping, see if your doctor will prescribe a rinse for your mouth. My daughter had the same trouble with the mtx and the rinse was soothing and made the ulcers heal more quickly. Sorry I don't remember the name of it though. When she got the ulcers her dr increased the folic acid and then she was fine. She took folic acid every day and mtx on saturday in case it made her feel bad so she wouldn't miss school. It takes quite a while for plaquenil and mtx to work. I am wondering about this rheum. Hang in there-it is worth the trouble to find the right meds.

Laker

Laker39180.6312731481

I sometimes think that the onset of my RA could have been stress. I had also just had a baby; but it was a stressful young life I had.

I'd never rule that out.

Stacy,

I've taken the MTX for over a year now. Like so many RA drugs, you need to have some patience and work with it. I started with just the MTX - added folic acid. That really didn't stop the mouth sores or the hair loss. Now, I take a mix of Arava (another RA drug), MTX, folic acid, prednisone, and Leucovorin (a folate) - this combination works very well for me. Minimal hair loss - no mouth sores for many months, now, and my RA is pretty well under control.

You will learn from your own experience. The thing you have to remember is, there generally isn't a quick or easy answer. You have to try the different medicines and see what works for you. Don't discard it, though, before you've given it a fair chance. It really can work wonders.

Happy Easter and thanks to everyone who responded to my many questions about these RA drugs. You are all a relief for those of us who are stressing and needing immediate answers. What a God send!

Thanks again everyone!!!!

Stacy

Stacy Lynne--

Just wanted to chime in and say I take MTX 15mg/wk and Leucovorin (Folinic Acid) 10 mg/wk. My doc says that Leucovorin works even better than Folic Acid for minimizing the side effects of MTX. I do have to say that I've never really experienced any side effects form the MTX--except for maybe a little fatigue the next day. Although my doc doesn't prescribe Folic Acid, I do get a little daily in my multi-vitamin.

If you continue to have awful side effects from the MTX, you might want to ask your doc about Leucovorin. Also, as someone else mentioned--some people find that they have less side effects with the injectable MTX rather than the oral.

Hope you feel better soon!

dordale

Hi,

On the folic acid debate - in the UK we are prescribed 5mg folic acid on every day apart from MTX day - the strength is important because MTX depletes folic acid in your body and you need mega-doses to overcome that. The lack of folic acid causes mouth ulcers and nausea so taking it should help. MTX doesn't work for everyone, sometimes the dose needs adjusting to suit you, here they start you on a low dose and increase it slightly every 2 weeks until you reach the desired dose, this also helps with side effects. I found that on 10mg I was fine and had no side effects but on 12.5mg I had lots. I am now on infliximab and take 7.5mg MTX every week and have virtually no side effects! I hope you can get it sorted out soon - those side effects can make your life a misery!

I worry about this night and day. My faith is strong and I sometimes wonder if this is God's plan for me... why fight it with poison that will just take me out even faster. I seem to be very sensitive to these drugs. They may be interacting with my Dilantin (400 mg day) also I guess? My neuro, pcp, and RD really need to get it together here. I certainly cannot take on the task of a liason right now.

Thanks again everyone for your input! I greatly appreciate it.

Stacy