[kate88]

Well-lots of things have stabilized for me...

My breathing problem went away.
My migraines have improved because I am on Topamax 50 mg BID.
My kidneys are fine-prednisone took care of that. There was a minor inflammation that resolves with steroids.

Currently I am on Plaqeunil 200 mg BID, Topamax 50 mg BID, and Prednisone 10 mg qAM, and I take a baby aspirin in the morning, just because my neurologist and rheumatologist were worried about all the weird symptoms I was having in December.

My joint pain however is flaring up even on 10 mg of Prednisone today. Before today, i was doing pretty good. But, I have been sick (cold) and I just started my menstrual cycle so I think between those two things, my feet and my hands and my elbows and my knees feel awful.

When my rheumatologist examined my joints, she mentioned adding methotrexate and taking away the prednisone. I don't why this made me sad. Methotrexate with some of it's side affects scares me, and it seems like a much more serious treatment, but I know 60% of patients are fine and don't experience side effects, at least that's what she said. I think my husband should have been at my appointment, because when I told him about the methotrexate he wasn't happy and had a lot of questions.

My rheumatologist thinks that high dose steroids and me might not agree and that the high dose prednisone in December may have made me a little manic, and caused some of my bizarre symptoms. And I know prednisone is not a good long term therapy, and methotrexate is a better long term therapy. I was just hoping plaquenil could be it, but i guess she saw something today in my joints that led her to believe that I may not be that fortunate.

Okay, I am rambling. So, my plan currently, is to taper slowly from the prednisone by one mg a week, and then see if between managing my stress and giving myself more time on plaquenil gives any improvement in the joint pain. But, if I hit 5 mg again, and can't stand the pain, I will call my rheumatologist, and ask for the methotrexate probably and go back up on the prednisone and give the methotrexate time to help the joints. I don't if that's silly and i should just take the methotrexate, but I just felt like my rheumatologist caught me at my worst, and I can't help but wonder if after this week, things might continue to improve the longer I am on Plaquenil (I've been on it for a month and a half).

Does anyone on this site actually find that they have no side affects from methotrexate, cause most of the threads I have read, people seem to experience the nausea, and that's not encouraging me? :worried:

 

[keebler]

Hi Kate,

You can count me as one who hasn't had any side affect while taking methotrexate.
I am on 10 mgs a week and I take folic acid 7 days a week.

I have been taking metho for 3 weeks now. Tonight is my third time taking it.

I was scared to start taking it in the beginning but I am hurting so bad right now. My rhumey is keeping a close eye on me. I see him in March again.

Good luck with metho.

Take care,
Lyn

 

[Rose Maclean]

Methotrexate

Hi kate,

I also have absolutely no side effects whatsoever, not even nausea. I have been on it for over a year now with doses as high as 30mg per week. I did find my mouth ulcers got worse at that dose, but that was all. i would definitely give it a bash, it is a fantastic drug if it works for you. Takes about 2 months to start to see change, but boy does it kick that arthritis' ass!

I hope that helps,

Love Rose

 

[denalirat]

Kate,

I have been on methotrexate for about a year and a half and have relatively few side effects. The nausea has only come up for me when I've bumped up the dose and I usually only notice it during the first week or so. It isn't bad for me at all. My mouth ulcers got worse after I went up to 15 mg/week, so my rheumy prescribed Leucovorin "rescue" and it completely takes away that problem.

I'm down to 5 mg of prednisone per day with my methotrexate and I would say the methotrexate has been more kind than the prednisone. I don't get any short-term side effects from the pred (except staph infections), but it gave me osteoporosis after 7 months of low dose usage....so I'd say I feel safer being on the methotrexate. My doc monitors my bloods regularly, so we know if it is affecting me poorly at all. It absolutely brought my joints to a functioning level again, which is more than I could have asked.

kit

 

[Monica3]

No major side effects yet-

Hi Kate,

I just started the Prednisone (10mg) and Methotrexate combo a few weeks ago. I took my 3rd dose of Methotrexate this am (12.5mg); the dose was 10mg the past 2 wks. The only thing I have noticed is that I get a terrible sore throat for about half a day within the first 24 -48hrs of taking metho (at least I found this after the first 2 doses). Taking vit c drops helps soothe this as it dissipates.

Perhaps I am one of the lucky ones, but I have not had any stomach upset or nausea) with Plaquenil (I take 400mg/day) or methotrexate.

I was frightened to start taking Methotrexate too and asked the board for feedback on this issue, to which many replied not long ago. I think the thread is still there if you want to read what others said.

Keep your head up and wish for the best. PLan for help ahead of time in case you need it, but you might be pleasantly surprised. As for the treatment itself, I guess it's too early to tell, but I am only getting one night's relief so far (per week). I'm optimistic however that additional doses and time will help!

Monica

 

[Pink Pearl]

Hi Kate,
I seem to find myself as the "old hand" at methotrexate. Come March, I will have been on mtx for 17 years. My medical history is a long one, and the mtx was the only option we had as I had become toxic to steroids.

I started on 15 mgs weekly, using tablets. Within a year, this was not doing the work we needed, and we upped it to 25 mgs and was doing this with injections. I stayed there for a year or so, and then it was upped to 50 mgs. I was there for about 3 1/2 years. Then, 11 1/2 years ago, the lupus was escalating and we had to rethink this issue again.

We brought on board an oncologist to manage the mtx, I had a portacath put in, and we took the mtx to 70 mgs IV weekly. There I have stayed and gotten better and better as time has gone by. We know this is unheard of for most lupus patients, but we didn't really have much option. I am toxic to steroids, and can't go above my maintenance dose of 1 mg and 3 mgs alternating days. Even going up to 10 mgs has my body running fevers and weird disconnected brain actions.

When my oncologist retired, I took over doing my chemo administration. It is no worse than doing any injection, just a bit more attention needed and added things like saline flush and then heparin lock on the port.

My oncologist added in a B-12 1cc injection with the mtx and I found that this took my reactions down by over 1/2. It was amazing to me, that such a simple thing could make such a difference. But it has.

I do 3 leucovorin 5 mg post mtx staged in 3 doses in about 18 to 24 hours. It makes a big difference. Mtx and folic acid are only 1 chemical bond different from each other. The leucovorin is what I call a "pumped up" folic acid and is used to reduce the action/neutralize the mtx.

While chemotherapy drugs are used to treat autoimmune diseases, and cancer, it is important to remember the following:
cancer cells are rapidly dividing cells
inflammatory cells are rapidly dividing cells
which explains why chemotherapy drugs are used to kill off rapidly dividing cells.
BUT, with autoimmune diseases it is not desired to kill healthy cells while killing off the rapidly dividing cells. Thus, a "rescue" drug/leucovorin is used to slow down the effect on healthy cell kill off, yet get the desired effect on inflammatory cells.
The "rescue" is not generally used with cancer as it is desired to continue its destruction on rapidly dividing cells and the damage to healthy cells is considered a necessary evil of this therapy.

I apologize for this getting long, but it is important to explain why these things are used.

The muscle pain and soreness which sometimes accompanies mtx is caused by a pooling of all the dead inflammatory cells in the joints and muscles. Usually within 2 days these have flushed out and you feel back to normal. My cousin's assessment of this was that we need a "garbage truck brigade" to clean things up. Would be nice, but not happening any time soon.

If you get the burning mouth, which can happen, I have found that anything with mint oil will relieve this. Nausea, keep compazine on hand. It doesn't happen every time, but when it does, I need it. The same with intestine reactions. I keep lomotil on hand.....with the B-12 it is not often, but when it happens, I need it.

Mtx is an old, tried and proven drug. It is the least dangerous of the chemo drugs used. Blood tests need to be done with it to make sure your body is adjusting and handling it ok.

At the low doses used normally with sle, it is a safe and well tolerated drug. If the dose goes higher, you may also need to be on a daily folic acid supplement. This is a protection for you and to make sure you are able to tolerate the drug.

I hope that you are able to look at mtx addition with a positive lean. It is always scary to add in a drug with a history of usage for a dread disease. I am thankful that I have a doctor who was willing to look outside the box to find a solution that we could not find otherwise.
I found that I had less reaction with injections vs tablets and less still with IV vs inj's.
Good luck, whichever way you end up going.
Sally

 

[kate88]

Thanks for the reassurance about methotrexate

Everyone's response was great, and I especially appreciated Sally's explanation about methotrexate, that was really helpful for me and my husband Brian.

I think after the past couple of weeks of pain, me and I and husband are thinking we should ask my rheumatologist to write me the prescription, and maybe give it a go this weekend. I am so tired of feeling crappy, and not being able to do light activity like swim. Once upon a time, I use to be a soccer player, and I fear those days are probably gone, and I am kind of sad about that.

I try to tell myself the pain isn't that bad, but I find I am more grouchy then I usually am, and I think it affects how I interact with my co-workers and that can't be good.

I will keep the anti-nausea meds on hand, and not make any plans for Saturday or Sunday, in case the methotrexate doesn't agree with me. Hopefully, I will be fine.

 

[Pink Pearl]

Hi Kate,
Glad I could help with the understanding that we all need in dealing with mtx. In my nearly 17 years, I have learned more than I never wanted to know nor never cared to ask. BUT, it is not for loss when I can help others to smooth their paths.

Early on, I found that my gut was not really willing to eat a regular meal, and found that chicken broth, saifun (celophane noodles) with a bit of soy sauce were tolerated. At least there was a bit of protein there. If I could handle texture, I would add in some sliced water chestnuts. You will find what your body will welcome. As I said, some weeks I sail thru just fine, would never know I had done anything, others.....I hibernate.

Take care with your intro.....you'll be on a low enough dose to hopefully avoid problems. Don't be surprised if you sleep more than normal. For some reason, mtx can have that reaction.
Sally

 

[Bullwinkle]

I have been on methotrexate for well over a year, started with pills , and now take it by self injection. In my time I have had the injection upped to 80 mg. from 50. I found that this increase has made a huge improvement in many of my pains.
It did take about 5 to 6 weeks before I really took note that I had improvement ... so don't expect it to happen in one week.
I also take folic acid 7 days a week plus a B12 supplement to accompany the methotrexate.
All the best.