Feeling frustrated right now because I've been taking methotrexate for about 8 months and I'm still having to take 6 mg of prednisone as well or I can't walk or function. I was taking 15 mg of mtx (6 pills) once per week for the first 5 - 6 months then upped it to 20 mg (8 pills) but still have no improvement. To figure out whether it's working or not, I have to gradually taper the prednisone but with each reduction, the pain gets worse and worse. Maybe the mtx is helping a bit - can't really tell because the prednisone masks the symptoms.

I'm going to increase the mtx to 25 mg (10 pills) next week as a final effort to see if it will work but I find it so frustrating that it takes so many months to find out if a drug is working and then, if it isn't, you're starting all over with another one.

In the meantime, the RA has definitely progressed. Last summer, the primary pain was in my trochanteric bursae and the bursae on my shoulders (as well as all the other parts - hands, wrists, toes, sternum etc.). Now the pain has moved to inside the hip and shoulder joints. In fact, my left shoulder makes a nasty "thunk" when I move it in a certain way. I'm suspicious I'm developing damage within those joints.

The mtx is the 3rd DMARD that I've tried - not sure what's next if it doesn't work. My GP isn't suggesting an anti-TNF yet and my rheumy wasn't rushing around to try and help much either. In fact, my GP is much more helpful and supportive.

Oh, well... that's my update.

sorry to hear all this.

can you demand an anti-tnf?

i just don't really understand how some people can be in so much pain and have so much of their functioning reduced and the doctors don't use the most powerful drugs they can as soon as they can, or at least a lot sooner than this. maybe you are more understanding, have a better insight than i do, but really, i don't understand it.

interestingly, i was just reading the other night about the actress kathleen turner, saw her on tv or something, noticed how much older and "puffier" she looked since the 80s and realized i really don't see her in film these days. and did some googling, on wikipedia it said the drugs made her gain this weight (i'm assuming prednisone) but that finally with new drugs she was "in remission" (their words not mine), i'm wondering if it is the biologics.

anyway, i do hope they start treating your disease aggressively!

Hi Wendy,

It really doesn't sound as though MTX has been useful enough for you, even though it has a history of being semi-useful for RA. I can certainly understand your frustration in the process of finding something that works. It does take an awfully long time when you're in pain. In the beginning, it took me 3 years to find an nsaid that didn't have a side effect I couldn't tolerate.. and even then it only helped a bit.

In my experience, if you sense that your joints are suffering some damage, they usually are. I've learned over many years that my instincts are often correct and to trust my senses. We are smarter in this way than we give ourselves credit for.

Anti-TNF therapy has proven to help in RA, (although not with quite the same amount of success they've seen in AS) but you definitely are not out of options, as you know. It used to be more difficult to get access in BC for anti-tnfs but hopefully that's changed by now. You might want to start exploring and asking questions about accessibility, since it may take some lead time, if you think that step is one you're apt to go to next in your journey to find something effective. TNF-alpha blockers are at least not toxic in the same way as MTX is.

Wishing you the very best of luck with this next dose increase!!

Hugs,
mig

Hi Wendy,

I'm sorry that the MTX isn't being as effective as you'd like it to be, and know how frustrating the length of time to find an effective treatment can be... My cousin's eldest child has JIA, has been on MTX for a long time and recently has also gone up to 25mg (now injectable) I believe that if there's no improvement on that dose, then his rheumy want to try Kineret. Perhaps that's an option to explore?

All the best,
-Anke

Wendy,
I have a late night appointment, so I looked in here.
I am so heavy hearted about your pain!
I wish there was something, I would help if I could.....

I am upping my cymbalta, trying to deal with things...
I hope tha tyou get to feeling better,
I care.
Lon

Sorry that the mtx isn't working well for you. I totally understand the frustration of the long trial times for any of these meds. When it takes 3 months just to get an idea if it MIGHT be working.....argh!!!!! Starting over from scratch each time sucks, too.

It seems like you've had all the DMARDs, haven't you? Isn't the next step to use biologics? If they are going to give you such a hassle, I hope the increase on the mtx works for you. Maybe it's time to start harassing them in a gentle way (at first) that things are progressing despite their efforts and you are worried.

I have the same pain moving into the hip joint after just dealing with the bursitis for so long. It's scary. I don't blame you for being wary of it.

Hugs to you. Time to be the squeaky wheel.

Thanks Sue. I think eventually they will look at an anti-TNF but it seems there is a process to go through first to make sure that the cheaper drugs are not effective.

I hate feeling to puffy. Especially when I have to do pubic speaking which is often in my job. It takes away some of my self-assurance!

Hi Mig,

Yes - I suspect you're right about the possibility of damage. It certainly feels as though something has changed in my shoulder joint - it's not just about pain and when I get the 'thunk' I also jump with the sudden sharp pain. RA does destroy joints so that's partly why I'm nervous.

I think the docs have something else in mind between the mtx and anti-TNFs.

Hi Anke,

I've never heard of Kineret so that's something new for me to research. So far I'm taking mtx by mouth but I've been wondering whether they will look at injecting it if I get to the 25mg per week level.

Thank you, Lon. I knew you would care and your kind thinking lifts my spirits.