Immuran is working

[SjoGirl]

Hello to all,

I started Immuran last week, only 50 mg per day, so far it is helping quite a bit with the pain. I am sleeping better and am working on reducing the amount of Gabapentin that I take from 500 mg per day (split over three doses) to 400 mg. I hope I might reduce GB even further.

Finally something that works -- I could not tolerate Plaquenil or MTX.

Woo hoo!

[irish]

I am glad that you are having luck with the Methotrexate. Just a word of caution on decreasing the Gabapentin. Doctors tend to sort of hurry a person through the drug tapers. After working with patients and a sick hubby I learned that it is better to slow with the tapers.

Gabapentin is a drug that is used for seizures and changes the way the brain works. Watch for increases in agitation, sleeplessness, possible changes in cognition, etc. You haven't been on a very high doseage but none of us know how we will react when it comes to a taper on any of the drugs that affect the brain or nervous system. I have had friends who had various tapers and some interesting results.

I am not a doctor by any means but just want you to have a comfortable taper. Been through some of them myself!!!!Good luck. Irish

[Kathy57]

SjoGirl,

This is awesome news!  I'm so glad it is working for you and I hope you continue to make great progress.😊

I hope you keep us updated on your progress.  Sometimes I think I should ask my doctor for something besides the Plaquinil.  What I would give to have some normal energy! 

My grandkids will be coming to visit for four days and I just hope I can keep up with them.  My husband will help so that will be nice.

Have a wonderful summer😎

Kathy

[gurs]

It worked for me years ago really fast...then, I had to stop it because I developed a fungal infection in my esophagus. I tried to get back on it 6 weeks after that cleared, and I just kept getting super sick right after I took it. Couldnt keep it down? I was really sad because it really seem to be helping. I tried a few times after that I still got super sick. Try to stay on it if you can.

Gursie

[MAT51]

Not wanting to alarm you but I felt Imuran sorted out my pain amazingly and was full of optimism, after failing to tolerate 3 others. Then Pancreatitis started after 3 weeks and recurred when I was advised to restart it after 10 days in hospital. So just watch out for flank pain and sudden vomiting. It's a rare complication (1/300) but I felt devastated at the time. I've tolerated Cellcept for 7 months now though so there is hope.

[Sharon]

Great news SjoGirl- good to know it's possible to tolerate a "heavier" med
after not tolerating Plaquenil (I too had serious tolerance issues with it).
Pain relief is priceless!

[SjoGirl]

Hi all thanks.

Irish I'm taking Immuran, which I believe is different from MTX (though I know that they are similar in effects). I'm on a much smaller dose, only 50 mg a day, than I was when I was on MTX (200 mg a day). I am taking care with tapering GB. I am taking 500 mg every few days then 400 other days and don't plan to go below 400 because I taking the drug to control Migraines and myoclonus (night-time seizures). I have not noticed cognition issues and as long at I take only 100 mg before I  go to bed I sleep like a log.

To others, I will have blood work later this week to ensure nothing untoward is happening. I will keep an eye on other symptoms such as flank pain or signs of infection. Praying that such things don't transpire because otherwise it would be on to biologics or learning to live with the pain.

Taking what I can get while I can!