Six Months In

Bones, joints and muscles
1

I was diagnosed with RA in March 2017. I was started on 10mg Prenisone and Methotrexate injections. For the first three months, I felt almost normal. I am now up to 1.0 for the methotrexate and 5 mg of prednisone every other day. When the prednisone was decreased to 5mg daily, finger pain returned. Now every finger is inflamed and swollen and the base on my right big toe is the same. I believe the only relief I got initially was from the prednisone. I am due to see my doctor shortly and he had mentioned more drugs. The pain is starting to 'wear on my mental well being"  

Should I be taking another drug besides methotrexate? I have terrible insurance and my plan will not pay for "name brand" drugs. 

My doctor has been sort elusive about my treatment. As a matter of fact, he provided absolutely no training for self injection. I had to look at youtube videos in order to inject myself. 

Is it common to find a new doctor? I just do not feel confident with my doctor and how effective his treatment is progressing.

2

In my own experience, all Methotrexate did for me was cause nausea 4+ days of the week, dried out everything from my hair to my skin, worse fatigue then ever and made my personality change from happy and positive to depressed and feeling hopeless. Maybe I could have lived with all that if it actually helped my RA symptoms, but it didn't and actually made it worse and gave me rheumatoid nodules as the cherry on top the sundae.. I was also first put on prednisone right after diagnosis, but only for a short course. It was the only med that gave me relief, but as you may know, this is a very dangerous drug that shouldn't be taken long term. I'm very surprised they have kept you on it. I was also given Plaquinel which was like taking a baby aspirin. I was on it just shy of a year, and along with the methotrexate for about 6 or 7 months. I told the dr I wasn't going to keep taking it because it didn't help. Now I have been on Enbrel for 4 months. My insurance is horrible too. They wouldn't approve the copay card, and my deductible is $14,500 a year, and the premium is very high too because we are self employed and have to buy our own insurance, and we don't qualify for any of the grand Obama care thru the exchange. So, long story even longer...I had to pay the first $7,400 for the Enbrel (which is only 6 weeks worth of medicine - outrageous! !) Before they now pay 100% for it. So far I'm doing better, but I haven't gone to the promised land of remission yet. Some days are still rough, but I am way better than I was. I feel like a normal human again and feel like my life is much improved. I'm sure at some point they will need to change it to another biologic since it's common for these meds to stop working when you have a very aggressive form of RA like I sadly do. My hope is that some day the government cracks down these damn drug companies because in my opinion they are at the root of the US medical problems. All the best to you on your journey to navigate and survive all the twists and turns this disease throws at us.

3

I seem to tolerate methotrexate pretty well. My only issue is mouth sores. I will live with the pain before I pay for one of the new biologics. 

When I was first diagnosed, it was like someone turned a switch on my body. Feet, knees, fingers, wrists, and shoulders. I could barely get out of bed and if I could, I could only limp for short distances. 

Thanks for your reply. 

4

Raymond - you don't mention Folic acid the day after you have MTX, very important as MTX destroys Vitamin B in you body, just bet that's why you are getting mouth ulcers. 

You should be able to buy folic acid from a chemist and or health food shop without prescription, have just checked mine are 5mg of Folic acid, take the two days following MTX injection.

There are other drugs you can take with MTX, leflunomide, and hydroxychloroquine, I'm am on all three.

Leflunomide or Arava, - worked wonders for me at 20mg, arthritis disappeared, but caused me to have extremely high blood pressure, I now only take 10mg of leflunomide. Side effect for many people is diarrhea, or loose bowels, I have worked out that if I take mine meds with dinner, half an hour after I get up in the morning, bowel moves, and I am in the clear for the rest of the day, family know to keep toilet clear for me in the morning.

MTX - I am on 35mg injectable weekly, I was lucky that my local GP helped me with injecting and learning how to do it correctly, without bruising myself, I am a little needle phobic so had to overcome that as well.

Fish Oil - rheumologist recommended for stiff and sore joints, It does help, be very careful if you are taking blood pressure meds, can be dangerous and drop your blood pressure too low, and you have to stop taking a week prior to surgery thins out blood too much I was told.  Odourless fish oil, 1000mg, 6 a day, 2 for breakfast, 2 for lunch, and 2 for dinner, with food, otherwise you can get nasty fishy reflux, as I have a tendency to have reflux anyway I found that this was the best way to take them for me.  Avoid Krill Oil, have found it only gives me terrible stomach pain.

Hydroxychloroquine - have only started on this about a week ago, and yes it seems to be working, but reading the pamphlet they gave me it says can take some time to have any relief, so maybe not.

Best wishes from a fellow patient.

5

Sorry, but I forgot to mention Folic acid. My doctor ordered it along with 3000 units of vitamin d. I am over loading my brain with all of the information available on the internet.

6

Justgettinby,  I too am on Enbrel and the cost is outrageous!  My husband's company quit subsidizing his insurance and we had to go to a private insurance!  We could not afford the cost and I found a foundation, Safety Net, that completely pays the entire cost!  I pay nothing!  We do not make a ton of money and qualified.  As I recall you can't make over $65,000 a year.  

7

Be patient this is not a quick fix. It takes a while to find the right combination of meds. It took me a couple years to realize I was going to make it and then a couple more to where I felt almost normal again. Everyday can be a battle when you dont feel good but it will get better. Hang in there.