Methotrexate vs leflunomide?

[KatieB]

  Hi all! I could really use some opinions. I am on 10mg of predisone daily and have been for over a year. Methotrexate caused me to have quite frequent periods, so my doctor decided to try azathioprine. It was horrible, over the next two months I kept trying to communicate with him about the fact that I was getting sicker and sicker. He upped the dose of both that and the predisone. I kept getting more ill, and developed anemia. Ended up in the hospital with severe anemia, respiratory insufficiency, Immune deficiency, fever, sinus tachycardia, and so on... My general practitioner told me I had a case of viral sepsis, which I guess is very unusual. My blood tests were awful at that point. I'm told that the azathioprine shut down my bone marrow. After five days in the hospital and two blood transfusions I got to come home, but it took quite a while to get over.

  That's the background, all that happened in November, and I'm feeling fairly ok right now. At my last visit the doctor recommended both increasing my plaquinel to 200mg (I've been on 150) and also either trying leflunomide 10mg, or methotrexate again, with a lower dose by injection. My stomach is a mess and I struggle with acid reflux and occasional vomiting after I eat. I'm on medication for that too, and leflunomide is supposed to be pretty hard on your stomach. The injectable methotrexate would bypass my stomach, but I did have trouble with it before, and my GFR runs about 61, which is kind of low for me only being 41. I know methotrexate can be a little tough on the kidneys, so not sure if that's a concern...

  I know the prednisone long term is not good for you. Every time we've tried to lower it I flare, and it's hard to want to make changes when you're feeling decent! I'm honestly scared to try another drug though. Part of the problem is that I know I don't really trust my doctor's judgment anymore. I could have died from that drug reaction, and it left me very uneasy about trying anything else. I probably need to find another doctor, but this one is actually very highly regarded and I had always really liked him before this.

  I know everyone reacts to medication differently I'm just wondering if anyone out there has any ideas or stories to share that might help me make a decision on this. Thank you so much!!!

[Jasper]

Is your doctor prescribing these drugs for Sjogren's? Or do you have another AI that is not listed on your profile? What types of symptoms do you have with the flares?

I was having several flares a year. My flare symptoms were severe debilitating fatigue, increased joint pain and aching and stiffness, no energy whatsoever, memory problems, concentration problems, cognitive problems (thinking ability, processing speed, word finding, ability to get anything done or figure anything out, etc.), lower extremity edema (feet, ankles, lower legs). 

My Rheumatologist first ordered Prednisone tapers. They worked, but eventually I would get another flare.

To try to reduce the Prednisone usage and the flares, my Rheumatologist first ordered Imuran. I could not take Imuran due to it making me very sick and also causing quite elevated liver enzymes. I stopped it after a month.

She next ordered Cellcept but it made me feel worse than a flare. I got very sick. I could not function and had a lot of bad side effects. After 2.5 months, I stopped Cellcept.

Next I tried Rituxan infusions. I had 1000 mg Rituxan infusion on Feb. 25th and another 1000 mg infusion on March 10th. Within a month of the first infusion I started to feel better. It has now been 16 weeks since my first infusion and I feel really very good. The fatigue has lifted. I have energy. I am accomplishing things. I can think more clearly, process thoughts more rapidly, concentrate better, remember more. I can figure things out (like how to operate new electrical equipment). My peripheral neuropathy pain/burning is much improved, at least 50% improved. My joint pain and stiffness is much improved. I feel globally improved. For me, Rituxan has been a miracle.

If your doctor is willing to order Imuran, Methotrexate, and Leflunomide, perhaps he will order Rituxan infusions. Rituxan is classified as a monoclonal antibody. It is a biologic. It depletes B cells, which we Sjogies have too many of. In studies it has been shown to be effective in Sjogren's, especially for fatigue.

I hope you find something that will work for you so you can get off the steroids and yet still see improvement.

[KatieB]

Jasper,

He is prescribing them for Sjogren's, that is my only AI diagnosis at this time. I have very similar symptoms to the ones you described when I have a flare, along with fevers and swollen glands.
A lot of digestive issues as well, possible mild gastroparisis, but I haven't done the testing yet. Don't you just hate the cognitive issues? It's like when you get tired, you just feel so stupid with this condition.

I'll ask my doctor about the Ritumax, I have heard about it before and it does sound promising. Julia, the lady who does the Reasonably Well blog, used it with good results until she had a reaction to it. I'm glad it's working so well for you! Thank you so much for your response.

[Jasper]

I hope you can try Rituxan. It is generally well tolerated, although the rare side effects sound scary. Personally, I was/am very willing to take the risk.

I did have a transfusion reaction, but most people do. They just slow down the Rituxan infusion and give you more IV steroids and more IV Benadryl. That usually takes care of it.

It sounds like you have good insurance if they are approving Methotrexate and  Leflunomide. Since nothing is approved for Sjogren's, sometimes insurance companies can stand in the way of treatment. Medicare really stands in the way of getting treatment, but you are 41 so hopefully you not on Medicare yet.

I can understand being  concerned about your doctor's judgement after what happened with the Imuran. I would be concerned too. However, he is one of the few doctors willing to try these drugs for those of us with Sjogren's. Many doctors do next to nothing for people with Sjogren's so, if you switch doctors, you would want to be sure that the new doctor will treat you with some of these promising drugs.

My suggestion would be, he decides to order Rituxan, ask him 1) what he is going to order as pre-medication and  2)  how he will treat a transfusion reaction if you have one.

Premedication should consist of IV steroids, oral Benadryl, and oral Tylenol. If you still have a transfusion reaction then they can slow down the transfusion and give you more IV steroids and IV Benadryl.

Since I had a transfusion reaction with the first infusion, they pre-medicated me with IV steroids, IV Benadryl (instead of oral Benadryl), and oral Tylenol when I had the second infusion.  I still had a reaction during the second infusion but I was able to finish it because they cave me more IV steroids and more IV Benadry.

My Rheumatologist told me that the goal is to get the patient through the transfusion by slowing it down and giving additional IV steroids and IV Benadryl. Of course, if the reaction is severe, they will stop the infusion completely. However, severe reactions are rare.

Hope you can get something to help you.