Kickas.org Forums Rheumatoid Arthritis General Discussion #1 RA Web Support Group Now I know methotrexate works

After missing two doses of methotrexate because of my sinus infection, I now know the drug is working. I went backwards so much as a result of those two weeks without. Even though I'm back on the drug, I'm still back to needing opioids to sleep and dealing with some miserable pain in the night and during the day.

It's interesting to note some changes since the pain was this bad a few months ago. For example, my shoulder joints are much worse than before, while my hips and knees have been holding up ok. In fact, it's my shoulders that stop me going to sleep. And they make dreadful crunching sounds if I move my shoulders forwards or back. Initially, a couple of years ago, most of my shoulder pain was in the bursae - now it's clearly inside the joints. Also my sternoclavicular joints are bad again.

Crossing my fingers this will all back off over Christmas now that I'm steadily back on mtx. Let's hope I don't catch any other bugs that require me to come off it again.

My CRP was going up again to match so the doc could see there was a problem.

Sorry to hear this Wendy... I was just thinking today how stinking unfair all this cr@p is for each and every one of us!

I'm wondering myself whether I should ask Santa for some MTX , as SSZ doesn't appear to be the drug of choice for me... It's either *strict* NSD or ???

Now where is my crystal ball? (although I would prefer a Magic Wand..)

Glad you got back on Methotrexate.I know the shoulder pain feeling.I had to get cortizone shots and sleeping pills for it,or else go sleepless.
Hope you get to feel more confortable for Christmas,and the rest of the coming new year.

Merry Christmas to you and your family.
John

I don't like having to take mtx, Inkyfingers, but I certainly don't like how quickly I get worse when I stop.

Thanks Fonzy. Shoulder pain is just miserable, isn't it? I had one cortisone shot in the bursa of one shoulder and regained almost the full range of motion as a result. I'm concerned that I'm going to lose that again if my shoulders don't improve quickly. I had developed adhesions as a result of not using it enough.

My Dear Wendy,
A.S. is like being an alcoholic, the disease keeps getting worse expenentially while we are treating it. I sure thope that you are feeling better soon and that you have a great Christmas.

Hi Wendy
I hope things have settled down for you since Christmas and that you are feeling much better.
I have never been in this forum before, but a relative has just been DX RA and has been put on Methatrexate, so I was just having a look around to check it out.
Google (as usual) freaked me out so was relieved to see someone using it who is finding it beneficial.
Sorry for my lack on knowledge, but I was wondering if I could ask - is there any other way to slow down the progression and damage of RA without the need for hardcore drugs? Or is that a really silly question?
Take care, Tink

Hi Tink,

I have been improving steadily since getting steadily back on mtx but my CRP did get up to >16 again. Not sure yet if it's started to come down again (not due my next blood test for a week or two) but the pain levels have been decreasing and I'm mostly walking without a limp again.

So far, all the research suggests that it's critically important to attack RA aggressively immediately it has been diagnosed. A long term study showed horrifically high mortality rates in RA sufferers whose disease went unchecked. The big risk seems to be associated with high levels of inflammation.

Although there appear to be some people who can take antibiotics and get improvement, it seems as though the majority of RA sufferers end up needing pretty strong drugs. The Roadback Foundation is the place to go to for more information on the antibiotic protocol. I tried minocycline for six months but my CRP was so high by the end of that, it became critical that I switch to an alternative.

I wish there was a simpler solution. I hate being forced to take toxic drugs but life is a balance, isn't it? My RA would probably have killed me if we hadn't started treating it aggressively.

I started mtx very very slowly because I was nervous of nausea. I seemed to adjust quite well and had no troubles. However, since being forced to take a break from it when I got sick, I have suffered from some mild nausea for about 24 hours after taking it. (It's a once a week regime.) That seems to be starting to improve now, thank goodness. I'm wondering whether my body was particularly unhappy after taking a break to go straight back onto the high dose. I take 25mg per week which is the highest dose my doc is willing to prescribe for RA.

I've posted some excellent articles on RA in this forum. You might want to encourage your relative to read some of them.

Wendy
Thanks for your valuable advice, I appreciate it so much.

I understand what you are saying about RA being agressive and the need to treat it quickly and effectively are crucial.
The person in question (have not asked permission to discuss this online so keeping it vague!) is definitely in need of action fast - I am relieved to hear that this is the way to go.

I shall take you advice about getting this person to read up on here and will do so myself aswell.

I hope your body re-adjusts to taking mtx again soon and that the nausea settles down. Horrible.

Again, thanks Wendy

Although back in February I thought the nausea was improving, I was wrong and it got much worse so now I'm waiting to switch to injecting methotrexate. I'm scheduled for my first shot tomorrow. The doctor is going to do it tomorrow and next week so I can learn how and then it will be up to me.

I usually take my mtx dose on Friday evenings so it doesn't interfere with work if I get nauseous. But my doc is away on Friday so my appointment has been moved up to tomorrow. However, my pharmacy screwed up and didn't notify me when they couldn't get the drug in the bottle size my doc had ordered. There are alternatives and they knew this was urgent but when I called today to check that the prescription was waiting for me they admitted they hadn't ordered it and hadn't checked with me or my doctor whether the alternative size would be ok. So now they're in a panic trying to make sure they have the drug available for me tomorrow.

I've already decided if something goes wrong and they still haven't got it then I'll have to go without altogether - I'm not facing another weekend of such debilitating nausea. I think pain may be better for the time being - at least I can treat that with pain meds. Nothing seemed to shift the nausea.

It's made me feel very very sympathetic to the poor souls whose chemotherapy treatment leaves them suffering from dreadful nausea all the time.